Lewy Body Dementia, Dad and Me

Christmas Day

2009-12-27T09:27:00.002+11:00

I picked Dad up and took him to my daughters for Christmas lunch. Daughters, son-in-law and cousins were there. One cousin had to work and was missed by all. Dad was having a super good day and there was much laughter and joy had by all. Dad still has his spark and he made us all laugh when daughter was telling everyone about some new developing successes she has had with her career when Dad piped up and said 'it all sounds like bullshit to me'. We all, including Dad, burst in to fits of laughter. Dad's appetite was good and-we-all-ate-TOO-much. It was better than the best day I could have hoped for. Dad only became confused and slightly agitated when some people left. I think he became anxious thinking was he meant to be leaving, what was happening etc because he was worried we were on the 8th floor and thought I had walked out past the balcony...8 floors up, that he was broke, that he owed my cousin money (none of which is true) and this was all said within one breath...sphew...Lewy had appeared. It was time to get back to his new home and settled. Once in the car Dad became settled and relaxed.

During the past few weeks I have visited Dad every 2-4 days. He has settled in really well, really well. He seems quite contented and accepting that the facility is his new home. It definitely is part of my Dad's nature which is still so very evident, the loving and understanding man is still with us. My Dad understands that I need to have my own life. He can still blow me away with his gentleness and compassion.

My Brother from interstate arrived last night with his 2 boys and have just left to take Dad out for the day. Dad is going to be tickled pink to see them.

Dad's health has been generally really good bar one of his legs swelled up and the other ankle. Blood tests were taken-no infection-and was put on fluid tablets.

I hope you all have had a wonderful Christmas and wishing you all, lots and lots of best wishes for the new year.

Very happy with care facility

2009-11-17T14:15:00.002+11:00

Dad is settling in. It took a couple of weeks. His body doesn't seem as frail. I think it's because throughout the night they turn him every 2 hours.
The layout of the facility works so well. The low care area is secured as well so they can leave the adjoining door open. All the places I had looked at, the low care area wasn't secured which would have prevented Dad from being able to participate in the low care activities. This has been a huge relief that Dad is able to join in with the arts and crafts, men's club, music sessions etc. I'm able to take him into the low care library and look at books with him.
They're having a concert by an Elvis impersonator in the auditorium this Thursday afternoon. Mum and Dad used to jive in the lounge room, with Dad whizzing Mum over each shoulder then between his legs.

Dad had a swallow test done and is on the verge of needing his liquids thickened. He'll be tested again in 6-8 weeks.

He still recognises all of us. He is walking better and using a frame. But has bad phases too. I just rang and was told that today he is screaming out my name. The staff wondered if it was because of an episode my younger brother had there yesterday. Wont be taking anymore of Brothers anger and manipulation when done in front of Dad!

All in all, I'm really impressed with Dad's care but not Brother's behaviour.

Adjustments for Dad and me.

2009-11-10T10:56:00.002+11:00

I can now write this post after 5 days. Last Thursday was just an awful, awful day.

My Brother arrived last Tuesday. I was so pleased to see him. I don't think I could have got through without him. Dad was pleased to see him. My Brother showered Dad those last few days at home. Dad continued to scream through the nights. On Thursday I was a bumbling, mumbling, stressed out mess. I will never forget the vision of my Brother wheeling Dad into the facility with the door closing behind us. Never, ever!

When we first arrived Brother and I were ushered away to an office for a couple of hours of paper work. At first I could hear Dad sobbing in the distance. When we came out Dad was having a snooze. He said that he'd been a bit upset and that they had said it would be best for him to have a snooze. Dad was exhausted so we left. I went back a couple of hours later and wheeled Dad around showing him the library, the art and craft room etc. Dad wasn't happy. He kept saying was I going to go get the car, that he couldn't drive anymore and no more of these kind of places. There are some very ill people in the high care section. Dad said 'that's what I'm going to end up like'. It's a cruel disease.

The following morning I phoned. I could hear Dad screaming and crying. The person on the phone asked me if I could hear him. I was still reeling from the previous day. My head knew I had done the right thing but my heart was questioning what had I done. I went over and Dad had settled by then. I sat with him and helped him eat his lunch. He was settled and ate all his lunch. We sat for awhile in the garden and a lady resident walked past telling me 'I had lied and had some cheek for not telling her about something', she continued passed saying 'neh, neh, neh' like a child does when teasing someone. Well, Dad got angry, said he was going to punch HIM out. This anger was new. I quickly tell Dad that the person was a lady and he said sorry. Luckily he still had that inner essence of how wrong it is to hit a woman. I leave and at home phone Dad's new Dr to sus out if he is aware of Lewy issues. I ask him straight out does he know about the medication issues with Lewy. His answered by saying there are different types of dementia....no mention of anti-psychotic medication. However he was receptive and told me to get Dad's Geriatrician to fax any correspondence plus a summary which will help him. I got Dad's GP to write a summary but it only outlines Dad's illnesses. Phoned the Geriatrician but they're not back till next Wednesday. Dad's new Dr did say he wont be prescribing anything new. I was so relieved that he was receptive and not annoyed at my blunt questioning.

That afternoon I went and stayed at my daughters' place. We went out for dinner, my 2 daughters and son-in-law, and the following day we went down the coast to Torquay. It was such a beautiful day and boy did I sleep on that beach.

I phoned to see how Dad was going. He had had a fall and luckily wasn't injured. They had warned me that falls were bound to happen. In some ways the care is better, they turn Dad every 2 hours through the night, thus helping to prevent bed sores and aches. But, not being able to prevent falls is a worry.

We are experiencing our hottest start to November in over a century. Days of 35 degrees Celsius. Not looking forward to days of mid 40's. Our state has bush fires burning, already. Let us hope we don't have a recurrence of last years 'Black Saturday', the tragic fires where we lost 173 people.

Yesterday I took my pastels and went down to a nearby river for some plein air de-stressing. Worked wonders for the soul.

A big hello to cousins in Hawaii. Hope you're having a super, wonderful time. And a big thank you to Dad's special cousin and CLP for being there.

3 days left at home.

2009-11-02T09:43:00.005+11:00

I helped Dad to bed last night about 8pm. He began screaming shortly after. He screamed my name over and over and over and over. I went up and re-positioned him and wiped his face. He continued to scream. He has started to cough lots of phlegm and make lots of saliva. Every 5 minutes or so I helped him to wipe his mouth. Around 10 I gave him a clonazepam thinking he would then sleep. NOPE! He continued to scream and scream and sob. I stayed up till 3am helping him. He was still screaming so I looked up online, dosage etc and gave Dad another clonazepam 0.5mg. I told him I had to get some sleep. He continued to scream my name for hours. It was doing my head in. Some nights he screams 'help me, help me' over and over again which is disturbing but the nights he screams my name really, really does my head in. I'm shattered.

You all must wonder why brother at home doesn't hear Dad. He wears hearing aids plus he lives in a self contained extension to the house. Brother's bedroom is at one end of the house and Dad's is at the other end.

I've noticed that the day following a night of screaming Dad has a good day. He is not so sleepy and more alert. The day following a complete night of sleep, Dad continues to be sleepy. There seems to be a pattern, like his internal body clock slows down, speeds up, slows down, speeds up. Reminds of something I read where an elderly lady would sleep for 2 days then be awake for 2 days.

I hope the neighbours understand because it sounds like I'm either killing him or neglecting him.

This morning my younger brother actually asked how Dad was. My other brother must have spoken to him. I was just about to give Dad a sponge bath and I asked him if he wanted to help. He hasn't ever shown that much interest in Dad. His reply was 'I'll do it, I'll do it'. Well you could have knocked me over with a feather. So with guidance brother sponged bathed Dad then he left to have a shower and I continued, to dress, clean dentures, get brekky etc. Oh dear! I'm tired and having a whinge.

So far today Dad has been able to walk with my assistance, albeit extremely slowly.

3 days left...I feel too tired today to feel any emotion. Wrung out!

Brother from interstate arrives tomorrow morning. I can't tell you how relieved I'm going to be when I see his face.

Dad's last few days at home

2009-11-01T12:50:00.005+11:00

The last couple of days have been exhausting.

How Dad ended up at the hospital yesterday-

Wednesday the assessor lady came. She showed me how to assist Dad when walking. BUT she may have been a bit too vigorous. She shouldered him, taking his arm and propelled Dad forward 'saying 'big steps', big steps' and whizzed him to the toilet and throughout the house. She was very forceful, kind of like a strict head mistress. She even laughed and said 'I am bossy aren't I'. I'm not bagging her because she was super lovely and caring. My Dad's cartilage surgery from 30 or so years ago didn't cross my mind.

Thurs day morning Dad was having a bit of trouble walking with my assistance. I found it difficult to get him to the toilet. I thought if he gets any worse I'm not going to be able to move him. That afternoon I went and hired a wheel chair.

Friday my cousin comes over to help me shower Dad. Neither of us noticed that Dad's knee and leg was swollen. Dad didn't mention any pain.

Saturday I was dressing Dad. He was sitting and I looked at his knees...one was twice the size.
Phone for an ambulance. The medics asked what had occurred over the last few days. It was them who asked what and how the assessor had gone about her tasks. They thought because that was the quickest Dad had been walked for some time coupled with his old surgery that some damage had been done to the tissue. The poor assessor would be devastated if she knew that maybe she had done this. She wasn't to know and I certainly didn't think about Dad's old surgery.

At the hospital, the Dr thought the same. The swollen area wasn't hot. Thank goodness it wasn't an infection. My four cousins came to the hospital too even though two were flying out today for Hawaii and still had lots to do. It makes such a difference to Dad's demeanour having company. Plus I'm so worn out that I really needed the company. My cousin who is my daughters God Mother insisted I go with her and get some lunch and they all fussed over Dad and he lapped it up. It was good to see Dad smiling and he told my cousins lovely partner when she asked him how he hurt his leg, that he did it chasing woman.
The Dr said Panadol, elevate the leg, ice the area and keep the compression bandage on for a week or so. Emergency respite was mentioned and because we have a long weekend (Melbourne Cup) it would be impossible to organise, so the Dr suggested that the hospital keep Dad until Thursday. This wasn't going to be happening. NO WAY!

Leaving the hospital my cousins partner is a nurse and she helped Dad from the wheel chair into the car. They came back to the house and again she helped and showed me how to get Dad out of the car and up the stairs into the house. She stayed and showed me how to get Dad to put his hand on the wheel chair arm to help himself lift up to get him to the toilet etc. She also sat with him and helped him take his medication, eat, drink and showed me the best way to get the nappy on whilst Dad was laying on the bed. I've had two children but it's not the same trying to get a nappy on an Adult.
I noticed how Dad's special cousin layed beside Dad on the bed and stroked his hair. It just breaks your heart. At the hospital he was asking the Dr to check this, check that. I just love him to pieces. Last night in bed I was thinking about his lovely partner and I was sad that my Mum never got to meet her. They would have hit it off like a house on fire. She would have been so tickled pink that he had met someone so special.

Last night whilst putting Dad to bed I was horrified to find out that Dad has stage 1 pressure sores on his bottom from sitting too much since his leg has been swollen. Cousins lovely partner, from now on CLP, told me to check in the morning to see if it was gone. Yay, this morning no redness.
CLP said to phone her today if I needed any help and she would come over after work.
Dad slept through the night and slept till 10.30. Wow! He was absolutely exhausted.

So far today I have managed. I sponged bath Dad...ooohhh! Last night I didn't think I could but this morning seeing Dad so helpless in bed I just took a deep breath and did it. I got a hand towel to move his delicate bits. I could tell that he was grateful. Washing him down seemed to soothe him and in turn it soothed my soul.

On a visit to the loo Dad kept saying to get the dog shit out of the way. We don't have a dog. We both laughed and laughed.

Over the next couple of hours Dad has screamed, sobbed, laughed and hallucinated. When he says there are people in the lounge room and that he must be dreaming. I tell him to look out for Mum in his dreams.
Dad had only been up and out of bed for three hours when he wanted to go back to bed. Dad never asks to go to bed. Since in bed, Dad has screamed out sobbing for his Mum. I went up and re-positioned the pillow at his back and rubbed his shoulders. He has gone back to sleep.

Tuesday my brother flies in from interstate to help and to be there on Thursday. That damn awful day that looms ahead when Dad leaves his home.

Over the next few days I have to get Dad's GP to write up Dad's history and on going medication. Do that dreaded paper work of signing over Dad's care. Catch up on washing so I can PACK my Dad's clothes and get together ONLY SOME of his things...the special bed side light Dad made for Mum-an English styled Tudor home with a moving gentleman in a top hat with his arms around his wife. Or the 2ft statue of an olden days sailor. Think Pirates of the Caribbean and you will have some idea what it looks like. Dad wanted this for the lounge room and Mum wasn't so sure about it. Dad left all the house interior decisions to Mum. Dad was unusually adamant that he wanted this statue. It actually looks wonderful standing on the fire hearth and at the time, it did make all of us laugh. Mum came to love this funny pirate looking sailor. I think Dad wanted it because his Dad was a fisherman who built his own boat. Mum and Dad used to have a boat, which as a family, we spent many hours cruising around the bay and lakes and rivers; fishing Mum loved to fish even more than Dad did. So next Thursday I will put the old sailor statue in the car with Dad, so they can continue their journey, their voyage, together.

When doing the right thing breaks your heart

2009-10-30T16:00:00.002+11:00

Yesterday afternoon I went and hired a wheelchair and shower chair. This morning my cousin came over to help me shower Dad. It took both of us to lift and steady Dad. My cousin minded Dad so I could go look at another facility. It was like a miracle, the place is perfect. Dad goes into respite there next Thursday for 3 weeks and then it's highly likely that he will stay on permanently.

The Woman who gave the tour was interested and asked questions to what has happened over the past few years. She was INTERESTED and said she could see I was drained. She said I will sort this out for you!!! I was introduced to the head of nursing and she knew about Lewy Bodies. This woman was so switched on. Made me feel at ease to know they are up to date with Lewy issues. She asked if Dad's Geriatrician would be involved with Dad's ongoing medical issues and medication. They discussed which area would be best for Dad. I was so impressed. There was staff everywhere, busy, everyone was clean and even in high care people were being included in activities. Not left in a room by themselves. They have a married couple, and they organised a lounge room for them so they can sit together and have a bit of privacy. They try to accommodate peoples needs. I got such a good vibe and then...this was like a message to me, perhaps from Mum. I got in the car and sat there for a minute and looked up, their chapel was right in front of my car, and on the big sign I saw 'Salvation Army'. Mum and Dad were married by a Salvation Army Chaplain and Mum insisted that a Salvation Army Chaplain conduct her funeral. When I saw that Salvation Army Chapel, on the grounds, I knew that I had found the right place. An amazing sense of calm swept through me.

My cousin stayed for a few hours after I got home, for support. I was upset. His Mum is coming over tomorrow to help me shower Dad. On Monday afternoon his lovely partner, a nurse, is coming over to help me shower Dad. Thursday my girls are coming with me when I take Dad to his knew home. Lewy has won. We didn't make it till Xmas.

Dad was assessed.

2009-10-29T13:11:00.003+11:00

Yesterday Dad was assessed by Aged Care Assessment Service (ACAS). After reading other blogs of how Lewy often demises when other people are around, well, Dad was the best he had been in weeks. Charming, cooperative and chirpy. The woman who did the test wanted to see how Dad got in and out of bed, the shower, toilet and made suggestions of ways to improve things. The best tip I got was helping Dad out of bed. When he is laying on his back and to get him to a sitting position if I bend his head forward it enables him to bend the rest of his body. She used to be involved with neurology and showed me the difference it makes. Just a simple tilt of the head forward stops Dad from being a total dead weight. Also when helping dad walk to tell him big steps with some encouragement to propel forward and to repeat big steps.

Throughout the assessment the woman was saying how Dad was border line low/high...I'm thinking you should see Dad on a bad day/moment. I explain about the behaviour in respite and that Dad was like it when we visited the Geriatrician and that he thought Dad was now high care.
It wasn't until I mentioned that Dad some nights pulls down his PJ's and wees in bed. This was a criteria of being high care. It's difficult in the allotted time to recall the different things Dad does and can't do anymore plus because Dad is present it's awful to embarrass him.
Dad also did the MMSE and his score was 8...8. It was 17 in 2007. Lewy is stealing my Dad and I hate it. Dad is becoming miserable in his own body, if that makes sense. It's getting to the point where Dad can't deal with his body and his mind, a further decline.

Today Dad is having lots of trouble walking. It's borderline can/can't with my assistance. I need to hire a wheel chair, get a chair for the shower and a commode for his bedroom. I'm trying to keep Dad mobile for as long as I can but just a little more decline and it will be dangerous for Dad and for me. We will both end up falling over. It's going to be difficult to get him in and out of the shower. I'm going to have to phone our council and get some home care assistance.

The paper work from the assessment should be here next week. Then I can send off the forms and required papers to various homes. This is definitely the hardest thing I have ever had to do.
The only way I can get my head around it is that I'm blessed to have had 2 beautiful and healthy daughters. My heart goes out to all the people with ill children.

And last night Dad was screaming that much I gave him a Clonazepam and yes, today, Dad is having hallucinations. This is such a hard thing to bare. I get some sleep and so does Dad. I can get through the next long day but Dad suffers. Lewy really turns your conscience on its head.

Changes in Dad and I'm angry with Brothers.

2009-10-27T11:36:00.003+11:00

On the weekend we had a visit from a cousin and his lovely partner. When I told Dad they were coming, Dad jumped up and went and had a shave. It was great to see him get excited but I'm afraid that Dad slept through most of their visit. When I visited Dad in respite, Dad, without fail would always ask how this cousin was (he had been unwell a few months ago).

Whats been happening since the visit to the Geriatrician-
The second night Dad was screaming so I gave him a Clonazepam. He only screamed once or twice after, then slept. The following day, Dad was walking the best I had seen for ages but was having hallucinations. There were Lewy people in the lounge room and someone was coming to do some work. He also was jumping up to look for things and moving things around. The following days Dad has been mega sleepy, sleeping for most of the day and he has slept through the night. He hasn't mentioned anymore hallucinations. I wont be giving him another Clonazepam. The rest full night for Dad and for me wasn't worth the dreadful confusion and hallucinations.
So is Dad still sleepy from the effects of the Clonazepam, did it trigger a sleep mechanism or is the sleepiness another Lewy phase. I have read on the Lewy forums that when the person starts to sleep 16 hours or more the end is near. I have also noticed since Dad became really sleepy a frailness, a weakness in his body. It's more than the Parkinson's movement problems it's a definite frailness. Seeing Dad becoming sicker is heart breaking. Hoping it's a phase and that Dad will regain some strength.

I'm really getting pissed off with my Brothers. In total Dad has been in respite for 8 weeks and my Brother who lives at home, visited once. He knows right from wrong. Once! He comes in and out of the house and can go for weeks without him even speaking or asking how Dad is. My other Brother who lives interstate phones roughly every 6 weeks. Not even once a week! Enough is enough. Brothers your Father is very sick-wake up!!!! Dad has been the best father, you couldn't choose a better Father. He doesn't deserve this treatment.

Decision made.

2009-10-22T15:46:00.002+11:00

Dad saw the Geriatrician this morning. The Dr had a cancellation and thank goodness made the time available for Dad.

Since Dad has been home-
The first 2 nights...woah...the screaming...just awful! During the day Dad was quite bright, chirpy and happy.
Last night he slept through the night. BUT, this morning he was mega depressed. Was having trouble walking, he was like a sack of potato's...all saggy. At the table, his head kept falling forward and I had to feed him his brekky. Managed to shower him, dress him...not sure how.

At the Geriatrician's Dad was mopey, really long face, saying he felt sick, too this and too that, moaning and groaning. Dad was also saying things like he didn't know how he was going to get the car and repeated, 'I don't know' over and over again. Dr checked him over and his blood pressure is a little high. When leaving Dad was slumping, like he...it's hard to describe...more like didn't want to walk than couldn't. The Dr organised a wheel chair and his nurse helped Dad out and into the car.

The Dr was going to talk to a psychiatrist to affirm which anti-depressant to change Dad to and the change over procedure. Dad takes Aropax 30mg daily and is being changed over to one with a sedative quality to it. He also gave me a script for Clozapine which I can give Dad when he screams throughout the night.

Today was the first time I have seen Dad in such a bad state. It was the type of behaviour Dad displayed whilst in respite. The Dr commented on the decline Dad is showing and also said that Dad was now high care. I too could see that this behaviour would be hard to manage and now feel that a high care facility is appropriate. Sphew what a day. Plus, when we got home my younger brother had an episode of yelling!!!
This afternoon Dad's confusion was worse than usual. He has sobbed and asked God to take him. Lewy is sapping Dad's spark.

This afternoon I have started the ball rolling for getting Dad a permanent place in High Care. I posted the referral to have the assessment team reassess Dad from low to high. This is a government, mandatory procedure, required by all facilities.

Even though I knew this day was coming (the day of the decision), it doesn't make it any easier. I feel so drained. A very sad day.

Hopefully Geriatrician can help.

2009-10-16T14:44:00.003+11:00

I use this blog as my sounding board, a way to gather my thoughts.

I have been to look at a few nursing homes. The dilemma still is the high/low care division. Dad is in respite and is having behavioural problems. He will lay on the floor saying he wants to die. It can happen a couple of times a day. The staff try to help him up but Dad tightens up and needless to say, has been on the floor for an hour or so. They tried to lift him with a weight lifting mechanical device but Dad doesn't cooperate. Because of these behaviours Dad is classed as high care.
One high care place I saw, the majority of residents were immobile, all in big, comfy, recliners on wheels. The other high care place, the residents were very demented, a very sad place. Dad is neither. He still has a little spark left him. For example he sometimes does a jig to music, he looks forward to his favorite show on TV, loves a choccy treat, ice cream and visiting my cousins.
High Care is simply out of the question.
I rang Dad's Geriatrician and his wonderful Clinical Nurse has fast tracked an appointment for Oct 29th. Hopefully the Dr can sort out some medications to help Dad. This has put my mind at rest for the time being.

Absolutely HATE lewy.

Respite extended.

2009-10-06T16:15:00.002+11:00

Dad's respite has been extended till October 19th. I visited yesterday, Dad was happy to see me.
The staff told me he has been having agitated, grumpy episodes where he doesn't want to wear his pants, wants to lay on the floor and refused to eat. He comes round, eventually. They also have him using a walking frame. He only requires it occasionally but it's good to get him used to using one.

I had a tour of a facility, it's definitely very well run. I was impressed with the high care section. That division of high/low...sphew!! Because Dad still has good days, being in the high care section will only crush his spirits and I'm sure he would rapidly decline but at times he needs one on one attention perhaps more than low care can provide. So what to do? I simply can't let Dad be cared for in the high level section, not yet. He still has too much spark.

High Care/ Low Care the division isn't appropriate for fluctuating Lewy

2009-09-30T11:10:00.002+10:00

Dad is in respite till Oct 5th. On the day we left for respite, Dad was confused, trying to work out where he was going. I kept talking to him in the car, trying to reassure him, that it's the place where you go on outings, they have the little dog etc, etc. He remembered the place but at times was like he was, the only way I can describe it, it was like he was in a 3rd dimension. Here, almost here, a bit somewhere else, moving in and out of these phases at times within seconds. He was trying to keep focused and then woosh. Throughout all this he remembered me and knew he was in the car and verbally he made sense. It was the questions that he asked that displayed his confusion and altered perception of reality.
He was unsure about going there. When we arrived the staff made him welcome with hugs and reassurance and settled him in. He perked up and was cheery when I left.
Dad's medical chart had a couple of days before it expired so I went to our GP and he filled in a new one. Took it and visited with Dad. The GP had made a change and I needed to get the chemist to make up a Webster pack (chemists makes up weekly dosages for staff to dispense).
On this visit Dad was sourly and quiet. He was worried he was there for 4-6 weeks. I told him he had a week and half to go. One minute later he would say again so it's for 4-6 weeks. He told me he had had a fall out of bed but wasn't hurt. That the chap who helps him into bed does it too fast for his body. I stayed and shared afternoon tea and by the time I left he seemed a little more relaxed.
I had to get the Webster pack filled and take it there. On this visit when I arrived one of the staff bailed me up in the corridor. Telling me Dad had collapsed onto the floor, on purpose, trying to get them to phone me. Another hit by a bus moment. Another staff member came out and told me she had seen him do it. He waved his arms in the air and fell down carefully placing his head. My daughter and I have seen him do this at home. It has happened when I have for hours been through a list of things trying to help and nothing has. Dad now says to me well I'll lay on the floor. In the end I have said 'Ok Dad if that's what you want to do but you'll be more comfy in bed' but the answer always is I don't want to lay in bed. I wonder if this is part of the 'restless leg syndrome'. Plus Dad has quite a few times asked them at the day care facility, he goes to of a Tues, to phone me. The staff there think it's anxiety.
This time it was for them to phone me. They also told me that Dad had been awake at 3am screaming in the hallway. 'Help me, help me'. Dad does this at home. This just breaks my heart. No one should have to go through this.
They also tell me they think he is now High Care and that he is too much for one person to handle. His mobility is getting worse too. They give me the name of a High Care place that has vacancies. I drive home and phone my daughter, sobbing.
I toss up about the decision and phone the facility in the morning and speak to the manager to see how Dad is and to ask her a few questions. She thinks Dad is borderline High Care/Low Care.
Because Lewy fluctuates so much, Dad has good days and nights and then bad. He moves between high and low care. I didn't think a High Care place was right for Dad yet. On good days he is aware of everything. The manager helped me to decide a Low Care facility which has a High Care section attached is the best place so they can make the transition when the time is needed. Even this doesn't seem fully appropriate as it concerns me that Dad will end up in High Care when he still has good days. Lewy is truly a heart rendering journey.

Hate Lewy

2009-09-15T14:10:00.003+10:00

Things I have noticed over the past month-

Sometimes when I'm showering Dad he feels like he needs to poop. So dry him off help him to the loo. Sometimes he does, sometimes he doesn't.

Wiping with toilet paper really throws Dad, This is happening more often. He can't find the toilet paper (in same place as always), he tells me he has only one hand and can't, can't manoeuvre and find the toilet to put the paper in.

He is appetite isn't as good with him leaving some of his meal.

More coughing of phlegm. Plus wanting to wipe his mouth out. I read that LBD people can make more saliva and swallowing becomes a problem too.

There is a change in his daily passing of urine. I think on the verge of becoming incontinent of a day.

His lean is worse and his gait can be a shuffle sometimes.

He can no longer clean his dentures, dress himself, shower and sometimes I need to wipe his bottom. Will be buying some baby wipes. He still can feed himself but have had to sometimes give verbal directions on how to.

Most of the time he remains in good spirits. It really throws me when he is sad and sobbing. And REALLY throws me when he is scared. Such a reversal of roles.

He is freezing more, half way from standing to sitting. Plus he has trouble aligning the chair, his bottom goes off to the side. One night I thought he was going to break the loo, it happened so quickly, he sort of leaped backwards.

He is sleeping more throughout the day.

I wanted to take Dad to the zoo but because it's a day of walking and Dad can't walk for that long anymore, I think I need a wheelchair for some outings. Another hit by a bus moment.

Some sort of cusp

2009-09-13T14:44:00.003+10:00

Yesterday Dad had a fall. He stood up from his lounge chair and just collapsed onto the floor. He wasn't hurt. Luckily he didn't hit his head or limbs on furniture. I have read that low blood pressure can be a symptom of LBD so will get Dad checked out by his GP to make sure that is what it is. Dad sees the dr on Wednesday for his B12 shot.

Dad is wanting to go to bed earlier. Some nights he wants to go at 6.30 pm but I try to get him to stay up till at least 7.30 to hopefully help him sleep a little later.
Last night he awoke at 8.30 and came down and told me
'who is going to get the long pieces?'
'Dad I'm not sure. I think you might be dreaming'. Dad uses the word dreaming when he starts talking 'out of the moment'...ie 'need to catch the rabbit' looks at me and laughs and says I must be dreaming. So it seemed appropriate to use because Dad 'wasn't there' and I didn't want to agitate him.
He was quite ardent that he had something to build and it was troubling him. To me he seemed like he was still in a dream state.
After a few minutes he came around and then was happy to go back to bed.

Around 10 pm he was singing out something not making a lot of sense. So I went up to his room and he was troubled, slightly confused but frightened. I tried to work out what was bothering him. Wasn't too hot, too cold, no pain, didn't need to go to the loo but he wouldn't or couldn't tell me what it was that was scaring him, he didn't want to be in bed or in that room. He also said that it would be better if he ended it all because he was a danger to people. My Dad the pacifist, who fed the possums in the yard to the dismay of a neighbour after Peter the possum took up residence in their roof, who let the pool go all murky over winter so there would be more frogs in this world (every summer it was a family ordeal to clean the pool for Mum), who I have only seen raise his voice twice in my whole life now think he is a danger to people. You just gotta hate Lewy!!!
Dad was just laying there. At the moment my 2 cats, especially Scruffy is more of a danger (I'm aware that this may change one day). I wish I knew how to turn off these terrible thoughts, dreams, or maybe they are hallucinations.

I told him it was ok to get up and asked him did he want to watch TV. He sat for awhile watching the football and after half an hour he wanted to go back to bed.

I feel like Dad is on a cusp, like standing on the edge of an abyss, the verge of a further decline.

Sleep is a problem for Dad

2009-09-11T16:30:00.003+10:00

Yesterday afternoon I took Dad for a drive up to the Yarra Valley, to Healesville. It's where he and Mum spent their honeymoon. He thoroughly enjoyed the drive through the picturesque country side. But finding a loo...drove through the town, the park's loo was far too far for Dad to walk. So pulled into a petrol station. I get the key and get Dad to the loo in time but had to keep opening the door and direct him.

In the early hours of this morning Dad was singing out, repeating over and over a sentence of jibber jabber ending with bow wow. Over and over, inhale ....la la la bow wow...exhale and repeated for a few hours. Then came the screaming. Went up to his room. He told me he was tied down. He had his pj's and nappy around his ankles. Changed him and put a towel on the bed and I went back to bed. Dad remained asleep till 10 and I managed to catch up on some sleep.
I have noticed since the nights have become worse that Dad is dozing on and off more through the day. No wonder. He must absolutely exhaust himself not being able to get some decent sleep.

A sad night.

2009-09-10T05:54:00.003+10:00

It's 5.50 am and have been up since 4.30. Dad has just gone back to bed but I can't sleep, thank goodness for computers. The last few days I have felt better, the dr told me I would have good days and bad days and what a difference it makes to how I am able to manage Dad. When I was feeling awful, so lethargic, my thoughts were 'I can't do this anymore'. Now that I feel ok, I feel like 'yep I can do this'. I wish I felt like it all the time, like I used to...single Mum of 2 young girls who worked full time and did a law degree full time...sphew and I managed it all really well...c'est la vie. And I really wish that I had stayed well till after Dad's Lewy journey.

Last night Dad was screaming out for help and I mean SCREAMING...'I need to pull my eyes out'...'take the paper away'...usually I go straight up to his room but this time I went to the loo first because the other morning helped Dad to the loo and he was on there for ages...'you finished yet'...'no'...eventually...I was busting but just made it. So I went to the loo and go up to his room find him kneeling on the bed, naked waist down...mooning me. Bed clothes on the floor, wee on the carpet, wee in the bed, goobies on the sheets and Dad kinda stuck in the kneeling position. I'm so pleased we are no longer in the depths of winter. THIS IS MY DAD...my heart breaks.

Over the past couple of weeks I was getting used to going up to his room and finding that he had slipped off his pj's and nappy and wee'd a few times in the bed but this kinda threw me.
I could tell he was sort of scared and not aware of what was happening around him. I didn't want to frighten him so I asked him,
'Dad what do you want to do?' ...no answer. He wasn't there. MY DAD WASN'T THERE. I waited a few seconds.
'Dad what do you want to do?'...no answer. I rubbed his back. 'Dad what do you want to do?'
'Leave here'.
'ok we can do that'. I wasn't sure how I was going to get him moving. Rubbed his hands. His body was kinda of stuck in the kneeling position. Got him edging his way back towards the edge of the bed but he couldn't manoeuvre his way off the edge. I had to roll him on to his side and then I couldn't get him sitting up. Wasn't his weight it was his body not doing what he wanted. Eventually he grabbed hold of the bed head and he pulled himself up to a sitting position. Ok now what? Mum and Dad always had a cuppa, a cup of tea when things were haywire. If you had news to tell them, Mum would say I'll put the kettle on. If you were feeling under the weather, Mum would say I'll make you a nice strong cup of tea. Ok, so I tell Dad I'll help him to the loo and make him a cup of tea. Dad manages to walk and go to the loo. I help him sit at the table and he has his cuppa. During this he is telling me he doesn't want to go back to bed. Dad sounds like a scared child, his voice wavering.
'if you don't want to go back to bed that's fine, drink your cuppa and we'll watch tv'.
Half an hour later he tells me he wants to go back to bed.
'are you sure?' I asked, worried because I was still reeling because of his fear.
'yep'. All his fear gone. Help him back to bed and since all I have heard is a few mumbles and him snoring.

Lewy has begun to cripple his spirit.

A couple of days ago Dad said to me he doesn't think he'll make Christmas. We'll get there Dad, Lewy hasn't got us yet.

Daughter's Birthday.

2009-09-05T14:02:00.003+10:00

Thursday my youngest daughter turned 23. Dad and I picked up both my daughters and first stop was having a look at my eldest daughters fashion photo exhibition which is part of fashion week. It was up 2 flights of stairs so youngest daughter stayed in the car with Dad. The exhibition was sensational, she is soooo talented. Then it was off to lunch. We had lunch at a restaurant overlooking the beach and the food was very yummy. I ordered Dad prawns which he thoroughly enjoyed but I wish they hadn't arrived with the tails still on as it threw Dad as to which part he could eat. Then it was back to daughter's place for cake and candles. It was a lovely day. Birthday daughter had a big night out with lots of friends, so all in all, she had a great birthday.

Dad continues to decline, with good days becoming fewer. The times he has trouble maneuvering himself down on to the toilet has increased. He also gets confused as to how to turn the tap on and off, at least he screams out for me so I can turn the tap off.
He is nowhere his usual cheery self. Some days he cries and says he wants to jump off a cliff. It's really awful to see. One morning he was so bad I rang my brother interstate to have a chat with him. My brother was able to bring him around, thank goodness.
Some nights Dad sleeps through to around 6 which is good for him and good for me. The other nights, well, they can be bad.

Dad just had a visit for Father's Day, which is tomorrow, from our cousins. They recently bought new cars and Dad was pleased to get to have a ride in one of them.

I put Dad on the list for a place a few months ago at the facility where Dad has stayed and phoned them last week about a permanent place. There is nothing until next year, so booked respite up till April. Have phoned other places and the shortest list is about 6 months so will be going to go have a look at that place. Will also contact my case coordinator to see what she can find.

The past couple of months I have had to reassess my plans for after something happens to Dad. I had wanted to get a few acres and have some chooks, ducks, vege garden etc but unless my health improves I don't think I would be able to maintain it. So apart from worrying about Dad I have had to get my head around my own issues. So, for the moment we're plodding along, taking things a day at a time.

The nights are long.

2009-08-16T11:53:00.004+10:00

Friday night Dad slept till 3am then started to scream out, he had wet the bed and needed to go to the toilet. Help him to the loo, he couldn't sit down, said he forgot how to, help him down. Verbal directing seems to help. Change him, have learnt to just put a towel over wet spot because some nights it can happen 3 times a night. I have to help Dad into bed, he can't manoeuvre himself down, so he sits on the side and I help him on to his side and roll him over. His legs, when I do this are stiff and up at a 45 degree angle, that's when he is on his back till I roll him over. At 4.30 the screaming started again. Go up to his room, ask what's wrong. Get told someone has pissed in this bed. Pull back the doona's and he has slipped off his nappy and pj bottoms but the bed is dry, help him to the toilet again. Get him dressed and back in bed. At 7 the screaming starts again, go to his room, tells me he can't move, I freak out...think stroke...but no it's Lewy taking hold of his body, help him to the toilet and back to bed. Then the 20 minute wakings begin, mmmm at this stage I feel like I have had no sleep, absolutely exhausted.
One morning about 3 am Dad was singing very, very loudly 'Waltzing Maltilda'.
Last night Dad slept till 4.30 and was screaming out, he was in the loo, wee all over the floor and his slippers and his pj's tangled over his slippers. I think he was trying to manage without waking me, which is really sad too. Around 8am Dad was in the hallway talking through my door, telling me he didn't know where he was. Get up, help him to the loo, direct him...wash hands, get your teeth, clean them, ready for brekky. But that bit later 1st waking by Dad helps me to feel not so tired.
I have noticed his eyes are becoming more and more glazed as Lewy takes over.

Last week I took Dad to the movies to see GI Joe. He really, really loved it, all the action. Dad loves action movies. Before we went in Dad went to the loo, was in there awhile, began to think need to get a man to check on him, when he poked his head through the door and told me to come in because there was no toilets. Next time we are out I will have to take Dad to the disabled loo and help him. When I think back, why did I let him go in by himself in first place...because he was quite good...until Lewy showed up.

The last few times I have had a shower, Dad gets really angry,...tells me 'I'm going for a walk', anger all over his face. This really throws me because it's so unlike my Dad. Takes awhile for him to calm down, sometimes till the following day. Last shower, I was using the hair dryer, have door open so I can hear Dad, and I sensed someone out the corner of my eye, it was Dad, still as can be in a hunched over kinda wrestlers stand and angry. Scared the hell out of me.

Because my Hashimoto's, an autoimmune disease makes me tired, some days really fatigued with aching muscles and joints plus because it has effected my kidneys I have high levels of uric acid which doesn't help so I had to get it around my head that until Dad's next respite stay, late September, I am in plod mode just doing the basic necessities to get through each day. I am exhausted, have a sore throat...really tired.
I miss spending time with my girls.

Dr recommends permanent care.

2009-08-10T13:14:00.002+10:00

I just returned from the doctors and he recommends that Dad be placed in permanent care sooner than later. I was hoping to get till Christmas but he is concerned about my health, my Hashimotos. It's the inflammation throughout my body and the pain it causes plus the damage to organs. He discussed cortisone injections and told me he suggests to patients to try to plod along until really necessary because of side effects. He also explained from my recent blood results that caring for Dad is 24/7 and that it's not possible to maintain round the clock care when I must feel part-time well...soooooo...what to do? Dad has a respite stay coming up in late September, at the moment I think I will plan that as a marker to get to, then home a month and then it will be time, that's if all falls into place with the care facility.

Not a good day.

Son-in-law gets new job

2009-08-08T15:43:00.002+10:00

This is the best news I have had in ages, it's so exciting. My son-in-law worked in a call centre whilst he was at uni and for the past year since finishing his degree and NOW he has got a job he really, really wanted. He studied interior design in the form of interior architecture. If you think of shopping centre's interiors (malls), lobbies, bars how to utilise the space, natural light, safety, correct eco friendly materials all with a cutting edge design, well that's him. He does the computer building of the image using a program like cad. So needless to say he and daughter are over the moon. He starts on Monday, wahoo!

We haven't been able to get to the Zoo. We've had very windy days with rain which is good for our drought and dam levels but alas we've been housebound. Hopefully this week we will make it, boy do we need to get out, he's bored and I'm bored!!!

I've noticed Dad is becoming quite stooped, bent shoulders and a lean to one side. Some days his walking is so slow and others he can be quite speedy. When I shower him and ask him to turn around, 9 out of 10 times he turns the wrong way...'no Dad the other way'.

And just now he has been to the toilet and he tells me what he has done and I asked him if he wiped...no. It's the functions, toileting, showering and dressing that are noticeably declining. Most of the time he remains mentally within the moment, sometimes has trouble with my name.
Oh the other evening daughter visited and he couldn't work out which granddaughter it was and asked about 5 times, which one was here and who was in the city with their husband. He ended up in tears of laughter with my daughter as they went through...'no Pa, it's me...no Pa (Dad tells everyone how this granddaughter is on her second degree) it's me with the degree...He eventually felt comfortable within himself as to which granddaughter she was.

Hoping lots more good days are on their way.

Daughter moves to her sisters.

2009-07-24T23:14:00.003+10:00

I haven't blogged much recently because there's been a change to my household. Daughter who is studying law has moved in with her married sister and hubby in the city. So I have made a few trips moving her belongings. It's much better for her to be around young people, right in the centre of the city as she works part time in a city restaurant. Plus it's easier for her to get to uni, and for her to go out without having to rely on me for lifts to the station or bus stop. Plus she can sleep through the night without her Pa waking her up. BUT, I do miss her and so does my Dad.
So it's just me and Dad and my younger brother who had an episode yesterday, yelling and screaming. I had to phone my other brother interstate to get him to talk to him. He upsets Dad so much that it takes a couple of days for Dad to settle back down.
Dad's general health remains good. He has a great appetite, and his bowels are behaving. Every afternoon I cut up 3 pieces of fruit and we share it, always including a kiwi fruit, as this was recommended by an aged care worker.
Daughter passed all her law exams, receiving a distinction in one subject. This was a relief as I was concerned because of disrupted sleep as to how she would go.
Married daughter has been super busy doing photo shoots for magazines. She always has so many projects underway that I lose track of what she is doing.

My health is a bit like yo-yo at the moment. I tried gardening and was out of action for 3 days after. Muscles that felt like they were on the verge of cramping, like I had been pummeled from the inside and I lose full movement of my arms. This really pisses me off, when I can't lift my arms. I have further blood tests in August concerning my Hashimoto's and from what I have read it can take some time to get the medication levels right and they need to change as the disease changes.

Planning next, fine week day (it's quieter) to take Dad to the Zoo and another day we will go to the aquarium. Dad gets the most joy out of watching the antics of my 2 cats. There is definitely an unexplainable connection apart from love, care and concern for other animals that exists within us. As long as I have a map of where all the toilets are, we will be fine.

Dad is doing ok

2009-07-23T10:59:00.003+10:00

Nothing much has changed here. Dad remains in good spirits but continues to wake me throughout the night, all lights on in the house, having brekky at 3am, talking to me through my bedroom door. This can happen up to 15 times a night. At times I feel so drained with aching muscles.

I don't want to begin giving Dad the Quetiapine (seroquel) 12.5mg because he is still so good throughout the day. Will leave it for awhile.

OK! I'm having a whinge.

2009-06-25T12:26:00.003+10:00

Another bad night! Dad awoke so many times. Around 2am Dad was naked in the hallway, he had wet the bed. The heater was on but it's winter here, he was freezing so I put him in some PJ's and changed the bed. He continued to get up and turn all the lights on. He also let the cat out, who hates being outside, especially when its 2 degrees Celsius outside so around 4am the cat was banging on the wire door and I opened the door to find the cat at head height claws in the wire, shrieking. Around 6am the screaming started again. Dad was screaming out my name...I was so tired...all I could do was go up to his room and tell him he was waking up the street...I go back to bed...in zombie mode. I get up to find Dad coming in the back door. He had been to the neighbours to ask them if they could lengthen his belt. He had broken the end off one of his belts.
Later my neighbour comes to the door, I open it, the wire falls off the door and my neighbour had bought Dad a new belt. So kind of him, no need to explain to him Dad has other belts, just hold the wire up and thank him as graciously as I could. By the time I had fixed the wire Dad had lost the belt but had found his other one.

After nights like this I feel shattered and jittery like my nerves are shattered and kind of like I have really bad hay fever. Lets hope tonight is better.

On a brighter note daughter thinks she did ok in her exam and was over the moon to have completed her exams for this semester. She has gone to the country for a friends birthday and starts back at work Friday night.

Dad is home from respite

2009-06-24T16:14:00.003+10:00

Dad came home from respite on Monday. He had enjoyed his stay. Whilst there he had gone on an outing to the beach for a barbecue and had attended a nearby day facility on a couple of days. On one of my visits a therapist said he was going to bring in Dad an old style radio to fix/tinker with and when I picked up dad I noticed in his room a magazine from the 70's all about electronics. Plus the art/music therapist wanted to see Dad's drawings he did when he was a young boy to give her an idea of what style of drawing he liked to do and hopefully she could engage him in doing some. The staff try very hard to get to know the person.

The first night home Dad didn't have a very good night. He got up quite a few times, tried having conversations with me from the hallway, wanted his brekky and in the wee hours was screaming out from his room and when I say screaming he was SHOUTING. The following day he kept asking me to take him to the hospital because he needed to go to the toilet. He wasn't in pain but he thought he was going to the toilet too much. He wasn't going too much and 'a urinary tract infection' did cross my mind but he wasn't in pain. It was like he was surprised and worried that he had used his bowels, saying see, look at this, I told you so, when he wiped his bottom. He didn't believe me when I said he would be alright and told me if it was one of my daughters I would take them straight away to the hospital and that he would never forgive me. He wipes his bottom and leaves the paper in a little pile on the floor. I have to tell him to pick it up and put it in the toilet. It was a long day.

The following night, last night, he slept through the night till about 6am. Thank goodness because my daughter had her final law exam for this semester today (she is in her exam as I write and I can't wait to speak to her to see how she thinks she has gone). Today Dad is going to the toilet without any problems and is in much better spirits and hopefully tomorrow will be a good day too.

Medication problems in respite facility

2009-06-12T09:53:00.005+10:00

When I dropped Dad off at the respite facility the manager told me she wanted to give Dad a 'sleeper' to help him stay asleep throughout the night. The hairs on my neck stood up because it was because of something else that I went into her office to discuss and she off handily said she was going to get their visiting GP to prescribe him something. NO, I began, because Dad has Lewy Body Dementia do you think this is wise? 'It will be fine' she replied. 'It wont make his hallucinations worse'? I asked. 'Not any more than he already is' she said. My hairs stand up on my neck and I visualised jumping the desk and ripping her head off...I'm still standing in the same spot. I realise she doesn't know about Lewy and it's medication problems. I begin 'you can't give Dad any form of antipsychotic' I say with my stress levels peaking.
'Valium, will be ok, we will just give him a little' she says. 'No, I'm not sure about that' I reply. 'What about Temazepam?' she asks. I reply 'No, I'm not sure of the classes of tablets which are harmful'. She says 'It will be ok, it may make him a little sleepier throughout the day'. I visualise F18's coming in...I reply 'All I do know is that antipsychotics can be dangerous, it's more than a little increase in hallucinations. People with Lewy have ended up in psych wards'. She looks at me like I'm the one who has lost their marbles. So I used the most extreme outcome I knew of, but I had read on the net where this did happen. Her mouth is half open...I continue 'You also have to be careful with anti-Parkinson's medication because it can make them worse'. She replies 'I don't see how that could happen'. Ok I'm banging my head against a brick wall...'Studies have shown this to be true. Some of the dangers with medication is increase in stiffness, rigidity and sometimes death'...trying to remain calm...'Do you want me to phone Dad's Geriatrician and get him to contact you? I think she may have caught on when I said 'Death'. Yes that would be good and could you email me the studies you are talking about because I'm UNAWARE of this. Ok now I'm freaking out. How did they pull the wool over my eyes when I asked if they were familiar with Lewy. I will have to be more careful in future, having people with Lewy Body Dementia stay at their facility DOES NOT EQUAL knowing, familiar, yes, but not the specific knowledge that's required.
I leave, I phone Dad's Geriatrician and speak to his more than helpful, absolutely lovely, on the ball, Clinical Consultant Nurse. I explain the situation and mention VALIUM. She says 'NO DON"T GIVE HIM THAT IT COULD SET HIM BACK A YEAR'. My stomach turns over. I hate LEWY, this isn't an easy situation to deal with. She takes facilities phone number and she asks me to email her contact details. She tells me she will speak to the Geriatrician tomorrow (it's now late afternoon) and get him to contact them with details about medication and that she will contact me when this has been done. It was this woman who picked up the side effects Dad was experiencing with Aricept...dangerously low heart rate...followed by lots of tests to determine if it was Aricept or Dad's heart. It was the Aricept.
Back to the problems at hand. I email woman at respite facility information from Lewy Body Dementia Association and Alzheimer's Australia.
The following day I receive email from woman from respite facility. She wrote that she had gone home and looked up the same sites that I sent her and that she had read the problems and was now aware of them.
I also received an email from the more than capable nurse which was a copy sent to respite facility.
I have copied this here breaking some rules but I think this knowledge needs to get out there as much as possible.
'It is best to avoid any drug treatment for wandering. Benzodiazepines are contraindicated and may worsen the problem. Suggestions: Quetiapine (seroquel) 12.5mg nocte, is the least dangerous but I would only use it if symptoms can be managed no other way.
Risperidone 0.5mg may be used if Quetiapine is not available.'

I don't want another evening like that. Daughter was having last minute law exam kittens, I was trying to get the information together to help Dad and I came down with a cold/flu. Stayed up too late helping daughter with legislation, had 4 hrs sleep and drove her to exam (why I drove her, it's miles away in an unfamiliar area and she was stressing enough without having to deal with finding the place by catching a bus and 2 trains). I felt kinda ordinary but boy was it worth it to see her come out after finishing the exam, GLOWING...wouldn't have missed it for the world.

I will be phoning the respite facility this afternoon to find out how things are going and I think then I may take along bath with a lovely cuppa tea with lemon.

Dad's Birthday

2009-06-09T11:40:00.003+10:00

It's Dad's 76th birthday today. He has gone to his day care facility for the day. On the way I bought a choccy mud cake for him and his friends to celebrate his birthday. This morning I gave him his presents, some winter clothing and some new pj's but Dad was more interested in getting to 'the old boy's place' as he calls it. The days of buying Dad fishing rods and art supplies have gone.
Last night Dad awoke nearly every hour thinking it was morning and at one stage he thought I was playing tricks on him by telling him it was night time. It was quite disturbing when he looked at me and said 'but you are my daughter' like I was purposefully trying to confuse him.
Considering the bad night Dad was in good spirits and myself, I awoke for the first time in ages not feeling groggy. I'm guessing the thyroid, diabetes medication and the Vit D is kicking in.

Winter is setting in with the temperature, today, around 11 degrees Celsius and we have rain. Lets hope we have some decent rainfall over winter to help break the drought and to get our dams levels up.

This afternoon Dad has to have his B12 shot, not a great thing to have done on your birthday but tomorrow Dad is having 12 days in respite. My daughter has a cold and has her first law exam on Thursday with 3 more following over the next 2-3 weeks. Having a peaceful house will allow her to study and get some much needed sleep.

Sleep deprivation

2009-05-28T13:24:00.002+10:00

Dad had another bad night, waking at 2am from wetting the bed. I have started to put him in night nappies but he had wet through the nappy and was wet and so was the bed. I got him and the bed clothes changed and went back to sleep only to be woken again at 4 and 5 and 6. I feel quite ragged. This week, one morning I had what the dr thinks was a panic attack. I ended up passed out on the floor and had hit my forehead on the skirting board. The dr checked me out, blood pressure ok, eyes ok etc. It's after bad nights, the sleep deprivation makes me feel quite sick, it's more than just tired. On good days I'm beginning to feel better than I have in ages.
Dad's general health is good and he remains in good spirits but I'm noticing he is wanting to go to bed earlier, the disturbed nights must be having an affect.
This Sat my married daughter turns 25, the following week I turn 49 and 3 days later Dad turns 76. My married daughter has the flu, arrrgghhhh. When she told me my stomach turned over, she was a chronic asthmatic as a child/teenager. I think I asked her 'do you have the swine flu' 3 times. No, thank goodness. Hopefully we will all catch up for dinner next week.
The day after Dad's birthday he goes into respite for 2 weeks and I'm going to get away for a few days to recharge.

Gout

2009-05-22T14:24:00.002+10:00

Oh and did I forget to mention GOUT, yep I have gout also.

The first 2 days of taking the tablets/vitamins I felt recharged and felt the best I had felt in years but today I ache like I have the flu and are tired. I need to talk further with my dr and want further tests about the gout.

I knew I felt tired.

2009-05-20T10:37:00.003+10:00

I knew I felt tired but put it down to the situation, wakings through the nights and picking daughter up sometimes in the wee hours of the morning after she has finished working. Well, now I know there is another reason why I felt so tired. I went to see my dr to get my blood results and I have an under active thyroid. My dr told me to read about Hashimoto's disease and put me on Eutroxsig 100mcg (Thyroxine sodium) per day. This explains why I have found it difficult to shed 10 kilos and why I feel so tired plus some other symptoms like sore knees whilst I was painting the side fence to the point where it scared me because I could only kneel for 5 - 10 mins then I was in pain, bad pain. I look now at the nearly painted fence bar for the 3/4 along the bottom where I haven't finished and it makes sense. The dr also explained because Mum had Rheumatoid Arthritis and Dad has Pernicious Anemia that Hashimoto's was my auto-immune disease attached to (not sure whether he said the same gene) but it was typical of parents with these auto-immune diseases. I have to have another blood test in 3 months.

I also had high sugar levels after a fasting blood test. The dr phoned the pathologist whilst I was there to have further tests done on my blood, I have an appointment next Monday to find out these results. The dr discussed my sugar levels as being type 2 diabetes linking it to the extra weight I'm carrying. He wasn't specific in discussing this as he needs the blood results back.
I need to exercise more and hopefully the thyroid medication will now allow me to shed those 10 kilos. And there was more! I also have a mega Vitamin D deficiency and I'm now taking 75mcg (3 vit D tablets) per day for 3 months then see from blood tests whether to cut back the dose. This I can can understand as I don't get outside as much as I used to.

Fatigue is a symptom of the 3...I knew I felt tired.

And poor Dad was up at 3.30 am having breakfast, all the lights were on. I got up and asked him to go back to bed but he didn't want to go and I was too tired to argue. I got up at 8 and Dad had had 2 brekkys. At 11 am Dad was asleep at the table so he has gone back to bed for a nap.

Now I can see why I was finding it difficult to get Dad out and about. My patience level wasn't as it used to be and days out totally exhausted me. It all makes sense.

I'm still getting my head around things and need to work out a plan so I can begin to feel lively again.

Vistited Dad and 'Samson and Delilah' a movie

2009-05-16T10:48:00.005+10:00

I visited Dad on Friday. Dad was in good spirits and had spent the afternoon doing arts and crafts. Dad was a terrific drawer, no, an amazing drawer when he was younger. It was he when I was little, if I was bored who said why don't you go and spend the afternoon drawing. He also told me about how he had won something but wasn't sure how he had won it or what he had won. I think it was answering questions about animals.

A woman called me aside and told me Dad had been incontinent a couple of nights and that they were putting him in a night nappy. This may seem strange but I was relieved that someone else had made this decision for me. I didn't want to put Dad in a nappy, it would seem like the last vestige had been crossed. At home Dad's incontinence episodes happen infrequently and if they continue like that then he will only wear the nappies when he stays in respite.

I had a terrific day, yesterday, with my girls and son-in-law. We had lunch at the veggie bar in Fitzroy, went to the Australian Centre for Contemporary Art and saw exhibits using, glass, light and sound. One being a massive structure with flood lights linked with a sensor that set off the lights and a speaker which sounded a very loud woooosh sound. People stood around waiting to see people's reactions. The interactive element changed the ambiance within the gallery so much with strangers chatting and laughing. We then went and saw an amazing movie, 'Samson and Delilah'. The most moving, haunting and beautiful movie I have seen in years. Its a love story of 2 Aboriginal teenagers in a remote community in the Central Australian Desert. The movie has great reviews and the showing we went to was sold out. But if I was to say it's about a boy who is addicted to petrol sniffing and that there is very little dialogue with the main character only speaking once you would think I was crazy but this movie works on so many levels. It was funny, tragic and beautiful and so very powerful. This movie will win awards and rightly so.
We then had dinner at a Vietnamese restaurant, yummo. I had a great day, thanks daughters and son-in-law.

Daughter's Graduation and Dad's pants.

2009-05-13T07:43:00.007+10:00

Dad is having another week in respite. He seemed non-plus about going, neither wanting to nor not wanting to. His reaction reminded me of a teenager who doesn't want you to know their feelings. I personally think he was more pleased because he does enjoy company. This week I'm catching up with the dentist and having an overhaul by the doctor.

I received an email from the manager of the care facility asking me if I wished to place Dad's name on the waiting list for a permanent position. Dad likes the facility and so do I, and if Dad's respite stays continue to go well, then this place will be great, so I replied; yes, but I don't wish to take up the offer till the time is right. When that time comes, his name will be at the top of the list and everything should go smoothly, I hope.

During the past couple of weeks Dad has been well. My daughter had her Arts Degree graduation ceremony and Dad and I went. It was a fantastic day sharing the celebrations of so many talented people. My daughter had a magic day and was absolutely radiant with happiness. My daughter studied Arts at a country Uni, so we had a bit of a drive, all-in-all 7 1/2 hours. The event completely tired Dad out and for a few days after, he slept till lunch time. Oh and whilst we were having afternoon tea in the auditorium at the graduation ceremony, Dad's pants fell down...not to the floor but almost to his knees. I was holding onto my sandwiches and his sandwiches and all I could do was say 'Dad pull your pants up' a few times until he processed what I was saying and pulled them up. I'm afraid by the time he pulled them up I was in hysterics, laughing. Dad saw the funny side to it, luckily and I was very pleased that daughter had wandered off at that stage to chat with others because when I told her she said 'Ohhh it had to be my family'. I thought about the pants episode later and I think Dad is sometimes holding in his stomach muscles like you do when you breathe in. I had noticed that when I help him do up his pants he holds in his stomach muscles and I have to tell him to relax them. This kind of thing also happened when he was in the emergency department a few months ago and the nurse told him to breathe in so she could listen to his chest. When she had finished I had to tell him he could breathe normally.

My daughter and I have noticed Dad is showing some anger. If I have a shower he thinks I'm going somewhere and he is going to miss out. I say 'miss out' because it's not the fear of being left alone it's a 'I miss out'. It also happens at times when I have given Dad a meal and then daughter comes home from Uni, work etc and has a meal at a different time to us, Dad then thinks he has missed out on a meal. One evening Dad was growling under his breath and then stormed off early to bed. Daughter was a bit rattled by his behaviour because he is always so polite and passive. I think I will have to give Dad a small plate of food at those odd meal times so he doesn't become so bothered.

I'm finding it difficult at restaurants and in general when out, if there is no male present, to help Dad go to the toilet so I'm having a belated Mother's Day with my 2 girls on Saturday. We're going to have lunch and go to a few galleries.

Respite went super well

2009-04-28T13:39:00.003+10:00

Dad is home. I picked him up yesterday morning and he was bright and chirpy. When I arrived at 10 am the residents were in the lounge and an occupational therapist was throwing a ball to each person. One of the staff members said to me 'what a nice chap Dad is and how he loves to chat and that he is a smart man'. I couldn't agree more. I noticed driving home that Dad seemed to be listening to me more intently than he has for ages and was more engaged in our conversation. I was impressed. He seemed happier. He enjoyed the food, definitely the company and the stimulation from the activities and the outings. He didn't like the raised voices from staff. I asked him when did this happen and he explained when people wouldn't eat. I told him that it was important that the people concerned eat and I was pleased to hear that they follow through in maintaining levels of nourishment. I can remember when Mum was in hospital and an elderly chap in her ward couldn't feed himself. His daughter had to come in most days at meal times because there simply wasn't enough staff members to allow an hour or so in feeding this poor chap. I remember a nurse flying past and giving him a mouthful and returning 10 minutes later and another and then the plate was whisked away. Mum also commented that most times when the daughter wasn't there the food arrived and went without him having anything to eat.
I think Dad could understand when I explained that it was good that the staff persisted in getting some residents to eat.
It was a coincidence that on the way home Dad had an appointment with an occupational therapist concerning filling in a form. She took him into her office and asked questions and DAD REMEMBERED HIS DATE OF BIRTH...ohmg. When she came out she had written the date Dad had told her on a piece of paper and she showed me and I nodded. We were both impressed. The extra stimulation has done Dad the world of good...very impressed.
Last night Dad sat up later than usual with us watching TV. He seemed happier. This morning I awoke to Dad telling me he has stepped in dog poo near the back door. Why Dad was near the back door I don't know. The dog didn't pee also in his tray and there was Dad pee around the toilet floor and Daughter was running late for uni...a strange sigh of relief...back to normal.
I am so thankful that the respite stay went so extremely well.

Younger brother!!

2009-04-26T12:33:00.005+10:00

Yesterday I received a phone call from a staff member of the care facility saying Dad is agitated and wants to speak to my brother!!! I spoke to Dad and reassured him that he is coming home Monday. I suspect that when brother with problems visited Dad that he fuelled the misconception of how Dad thought he was staying till Xmas and that somehow brother with problems was going to fix everything. My brother is going to cause problems by saying to Dad things such as 'I will look after you' when he can't but Dad will think he can and this is going to make it very difficult come the next respite stay...banging head against brick wall!!!
I pick up Dad in the morning. I hope he settles back in ok and doesn't feel angry or betrayed. I also hope that the stay hasn't been detrimental to his functioning capacity. When I spoke to him on the phone I was able to brighten him up by getting him to tell me of the day excursions he's been on.
I'm about to head off to pick up married daughter's dog for another holiday at our place. He is so cute and is terrific company for Dad.
The past 2 weeks have absolutely flown by. My daughter, who lives at home and I have sat up watching DVD's together, we've been out shopping together and have just generally enjoyed catching up and doing ordinary, every day things together. She also has been able to write and study in a peaceful house and sleep throughout the night. The respite has been good for both of us.

My younger brother

2009-04-23T13:08:00.003+10:00

Since Dad has been in respite a nervous tic I had developed in one eye has disappeared and I have enjoyed the feeling of freedom, however, I feel sad most of the time. I'm aware that in the long run I will be a better carer for having the break, so be it.
My younger brother had an episode the other evening. He stood near the back door shouting, 'Come here, I want to talk to you NOW'. My blood runs cold when he starts shouting and slamming things. He had visited Dad and was saying 'how dare you, Mum would be so angry. How dare you, Dad is in there till Xmas'. I'm thinking, huh? He continues, 'Dad told me he is there till Xmas'. I tell my brother Dad has got confused and that he will be home next week just like I had told both of them. My brother has problems understanding some things because he views everything as black and white. Dad told him so, therefore it must be so. Oh dear! Then he starts, 'You aren't to organise things anymore, I am going to be the one who does', and he continued saying you are a dreadful daughter. Because he has problems it's so hard not to throttle him. I have to walk away and leave him to slam doors and shout. At one stage he came up to me shouting and stepped up close shouting into my face. It was only after I threatened to phone the police did he back off. He leaves me rattled for hours. Today he is still slamming doors.
The only person he will listen to since Mum passed away is my other brother who lives interstate. I have to phone my interstate brother and ask him to phone and have a chat to brother with problems.
I just hope when he was visiting with Dad he didn't stress Dad out in anyway.

My first visit with Dad in repite.

2009-04-20T12:03:00.004+10:00

I visited Dad on the weekend and whilst I was there 2 of my cousins arrived for a visit too. On first appearances I noticed Dad had very large puffy bags under his eyes. These puffy bags were about half the size at home. I remember his Mother, my Grandmother getting very large puffy bags. As we chatted Dad mentioned that he had these puffy bags and I asked if his eyes were sore...No. He also volunteered the info that he hadn't been crying.
Dad wasn't quite his bubbly self but considering the changes he had been through, the settling in to a different environment and routine and different people to mix with, he was coping quite well.
During the week he had been on a couple of outings. One was a drive up to our hills, the Dandenongs and the other was a barbeque by the Yarra river. The staff do an amazing job.
My cousin commented later on the phone to me how all the residents were so clean and well dressed. The staff help the residents to maintain their pride and motivation.
When I was leaving a resident was setting the tables for dinner and most of the other residents were watching an orchestra on the big screen TV.
During my visit Dad asked about the cats and did I have the dog back. He didn't say he wanted to come home so I will take that as he is settling in and coping ok.
At home my daughter is writing her first Law paper. So I'm tip-toeing around her and the house, through the explosion of paper. I can remember writing my first Law paper, how my stomach turned over.

Phone call, re respite.

2009-04-09T10:29:00.002+10:00

I got a phone call this morning from the respite facility manager. When she said her name my heart sank. I thought, oh no not again. But instead she phoned to tell me there had been a cancellation in April and was asking me if I wanted to take up the placement. So now Dad is having 2 weeks from April 14-27. In 5 days, oh my goodness! I'm looking forward to the break and I hope Dad enjoys having more company, more people to chat with but it's also very sad that things have had to come to this.
Most of us would have wonderful memories where a parent has done something so special that it remains with us always. Well, when I was in prep (first year at primary school), I was 4 and the government supplied a small bottle of milk to every child. I just googled why this free milk program begun. It began in Britain in the 1920's and in some other countries in the 30's because of the economic depression to help with the nutrition of children. It began in Australia in the 1950's. I can remember the milk arriving at school and the crates were stacked against the building, the milk wasn't refrigerated and in our summer...eeewwgghh! Well, Dad brought up flavouring to school for me. He just turned up with strawberry flavouring. He may have only done it a couple of times but I have such a vivid memory of this. I have so many memories like this so the 14th will be a day of mixed emotions, a two edged sword kind of day.

What a day!

2009-04-04T11:33:00.006+11:00

Yesterday, I got the letter of confirmation regarding Dad's respite. And an extra 2 weeks has been added in June. I felt relieved and yet saddened, too. I think I keep emotions at bay so I can get through the day and then when something occurs such as the letter, my stomach turns over and I kind of feel like when a child wants their Mum...a bit overwhelmed. So I banish those thoughts and get on with my day and what a day that followed.
I had packed up my daughter's dog's belongings because he was going home for the weekend, a massive thunder storm had hit and my other daughter rang and was at the bus stop. So I gather dog, Dad, paraphernalia and then I fell down the front steps...on my back, ouch! Couldn't get up for awhile...in the rain. Dad was having kittens...was winded couldn't talk. Eventually get up...luckily I fell on the dogs lead or he would have taken off for the park. Get up, take dog and Dad back inside. Phone daughters tell them I'll be a bit late. Sit for awhile, clean myself up, and try again. Pick up daughter from bus stop...dog vomits in car...poor little thing. He bites daughter on finger, doesn't break skin but hurts daughter's feelings. Thunder and lightening, dog whimpering, daughter upset...get to other daughters. Drop off dog, daughter, paraphernalia; given boot (trunk) load of stuff other daughter doesn't want anymore...Mum will take it to an op-shop...leave, peak hour traffic. Then Dad needs to go to the toilet, NOW. I'm thinking, dog vomit now just what I need, passenger seat wet. Dad NEVER curses but is now cursing at traffic lights, cars, pedestrians. I head for a park which has a toilet. Dad makes it. I feel like I limp home even though I'm driving. Thank goodness I didn't break any bones and are just nursing a bruised bottom and sore back. What a day!

Flu and pneumonia shots.

2009-04-01T13:29:00.004+11:00

Dad had his flu and pneumonia shots yesterday after he spent the day at his day-care facility. And his dr filled out some forms required for respite. I just dropped off the paper work and are keeping my fingers crossed.
Of an early evening Dad is still having trouble using the toilet. He seems overwhelmed when he does poo...mostly not wiping. I have to supervise, coach him along to get through the process...give him paper, wipe, drop paper in toilet not on floor, repeat...flush, wash hands.
He is becoming a lot more dependent. He hates to not know where I am. He comes searching in the house for me. If I have a shower he thinks I'm going to go somewhere and leave him alone. One good thing he has slept through the last couple of nights without waking me. But he is back to not being able to shuffle himself in bed and places himself across the bed, width ways instead of length ways. Showering I also need to supervise more. Regulate temperature, wash his hair, tell him to get soap...wash bits, rinse soap off.
During the day he is in good spirits and this I'm thankful for. It would be awful if he was miserable.

Antibiotics

2009-03-27T13:09:00.003+11:00

Took Dad this morning to our family doctor. His cough was getting worse. The doctor said his chest is clear, no temperature, no sore throat but thought it best to start him on antibiotics to prevent an infection. We were going to have dinner tonight at my married daughters place but decided to postpone until Dad is feeling better.

The 'I am having problems pooing' have subsided. Thank goodness. Dad was becoming quite morose about his difficulties.

Last night Dad was up at 3.45 am wanting to have brekky...helped him back to bed. When I got up around 8 Dad was already up and dressed and asleep in the lounge room so I'm not sure what time he actually got up.

Earlier last night I heard my daughter scream from the lounge room...'the dogs got Pa's teeth'. I'm dog sitting for my married daughter and Dad must have nodded off and his teeth fell out. I managed to retrieve the dentures before the dog took off with them for one of his hard to find places.

FOUND a respite facility

2009-03-25T15:25:00.002+11:00

I was feeling quite low and so was Dad but OH MY we found a lovely, small homely centre which caters for only 13 people. He will have his own room with an en-suite. There's a lounge room with a huge TV screen and a piano. They have the occasional sing-a-long which Dad enjoys. The kitchen is on view from the dining room, making it very homely. Their menu for the day was written on a whiteboard for them all to see. Dad likes to know where he's up to with meals. They do the residents laundry for them so I don't have to drop off/pick up clothes to wash. In another large room a staff member was doing art/craft activities with 4 or 5 residents and they were chatting and I got a SMILE from an elderly lady. People were relaxed. And they have another cute resident, a really cute small dog...now that's cool, well it is for people who like dogs and Dad loves dogs. This place I feel really good about and SO DOES DAD. So Dad is having a week in May and I've put down for 2 weeks in July and 2 in September. WAHOO!

On a less positive note on returning home Dad is having 'the I'm having problems pooing again' with him not sitting on the toilet and a mess being made on the floor. Went to help and noticed it's like his Parkinson symptoms are playing up with him not being able to judge where to place his legs and confusion as to why he should sit on the toilet. Oh dear! But knowing I have that respite in May has given me something to look forward to and I don't feel so stressed.

Early brekky.

2009-03-25T11:48:00.002+11:00

Yesterday when I went to pick up Dad from his Tues-day care facility the woman in charge told me that Dad had complained that he was unwell. This has happened before where Dad has been upset and has asked for them to phone me to come get him. Once a chap asked him to be quiet because Dad was talking through a program they were watching and Dad then wanted to come home. So yesterday, she checked his temperature and decided it was an emotional upset and got Dad to have a lay down. After a half hour or so Dad was back up and feeling ok. This, I'm sure was brought on by the tour of the 'disturbing facility'.
Last night, Dad had an episode of incontinence and was up wanting brekky at 4.30 am. He had dressed himself and was yelling that he didn't know what went next...the milk in his cereal.
The incontinence episodes I have found happen of a Tues night after he has been at day care. He drinks too much coffee and misses out on the amount of water he has at home. If it happens again next Tues night I will ask them to only let him have one coffee and the rest needs to be water. I feel like the big bad witch at times but if it means he sleeps more comfy and through the night then so be it. So that coupled with him being upset meant he didn't have a good night.
As I write this I'm noticing he is coughing lots more. I think he may have caught my daughters cold...so maybe yesterday he was feeling the beginnings of something coming on.
We have an appointment this arvo for another tour.

Facility disturbed us.

2009-03-24T11:27:00.006+11:00

Well, that tour of an elderly care facility didn't go so well. When we entered the dementia specific area there were 30-40 elderly people just sitting around one large room, yet there were other lounge type rooms rooms where they could have sat and even some nice outdoor areas. I was told they were waiting for their dinner yet it was only 4pm. How did they get so many dementia type residents to all be quiet, and I mean silent, not a sound and stay seated? And we passed through that room twice and still no one was chatting. All of the residents were in that room. It was as if they didn't have the choice to be anywhere else. Was this because they were short of staff, were the residents medicated to keep them so docile? Plus the residents were a combination of Low Care and High Care. This concerns me because Dad still has quite lucid days. It disturbed Dad to the point where he screamed out from bed during the evening, 'if I get sick don't take me anywhere'. Later I was up because I couldn't sleep and he got up and said 'I'm your Father, I'm going to die, I'm going to throw myself of a building'...oh dear! That facility also had some great things about it. A large deck over looking a meandering creek in a bush setting. An absolutely beautiful setting but something wasn't right in that room.

So I have an appointment tomorrow at another place which has only 13 beds and is only for low care residents. They have a week vacancy for respite in May and 2 weeks in June. Fingers crossed again.

Fingers crossed for respite

2009-03-23T10:53:00.003+11:00

We have an appointment this afternoon to have a look at another facility for respite. Hopefully all goes well.

My brother visited from interstate and did some maintenance. Thank you brother. Dad was delighted to see him and gave him one of the copies of the booklet of my brothers degree confirmation, which Dad had kept for years. This had been playing on Dad's mind. I just hope he remembers that he gave it to him.

Yesterday and last night I kept getting a migraine (I have only ever had a few in my life). I found that I needed to lay in darkness to get some relief. During the night Dad kept waking and getting dressed and turning on lights. After a while he would return to bed and turn off the lights. Usually I get up and help him back to bed but last night I was in zombie mode and when I woke this morning Dad was dressed and in the lounge and happy as Larry after eating a couple of ice creams.

Respite falls through and more changes with Dad.

2009-03-18T15:07:00.006+11:00

I received a phone call from the care facility where Dad was going next week. They've had to cancel because they're taking an admission. I was so looking forward to having a break and Dad was looking forward to going. I'm so disappointed. I was actually planning a trip, searching online when I got the call. So the search begins again and all the paper work. We have an appointment on Monday to have a look another place. Fingers crossed.

Dad is losing more of awareness to time. He asks 'what's the next meal' throughout the day, I think as some way of anchoring him to the time. If has a nap he wakes and thinks it's breakfast time and is very confused that it's still the same day. He is also saying things which would if he was well could cause trouble within the family. He had a conversation with my cousin and he came across as if of the opinion that he and Mum were dwindled out of some shared lottery winnings. Since then he has said the opposite that he wanted me to give my cousin money because he thought him and Mum dwindled her out of them. He was quite upset and has asked me a few times no matter what to make it right with her. He also has said things about other family members, saying they said this and that. He also told the people at his day centre facility that my daughter won a scholarship, no she didn't. And when my daughters were in Japan he said to me he kept it all hush, hush and didn't tell anyone why they were there; huh! oh ok they were on holidays. If a well person said these things you would call them a troublemaker. I grit my teeth and have to put these things he says aside or I'd end up confused, worried or angry for days. This seems to be the beginning of him losing all sense of reality.

He has also taken to screaming out my name from another room if I don't immediately answer or go to the room to see what it is he wants. I may be on the phone and he wants the TV channel changed. Also I can tell him I'm going ie, out to garden or to the line and he forgets and screams out for me or comes searching for me. He is definitely becoming more frustrated with everything.

Dad also had an hallucination one night. He woke me up and said come and listen to what the woman who is sitting on the red blanket is saying. I have to say being woken at 3 am to hear this, half asleep myself, well it scared the living daylights out of me. He didn't seem frightened. If anything he sounded surprised and happy that she was there and he had someone to chat with.

Avalon Airshow

2009-03-15T14:17:00.002+11:00

Friday I took Dad to the Avalon Airshow. It was very impressive, the F18's with their after burners flaring, spit-fires and their manoeuvres and the noise. But it was a stressful afternoon. As soon as we got in the gates Dad wanted to go back to the car. We had had a bit of a walk from the car so found him a seat to rest which I had to continuously do. Plus he wanted to go to the toilet heaps. So I had to plan strolls to look at planes, tanks, helicopters etc from a base of our very rare seats, near a toilet and after looking at one going back for a rest. We still managed to see quite a bit. After 3 hours Dad had had enough so we begun the walk back to the car. At the entrance I asked a shuttle mini-bus driver if they were taking people back to their cars, no, but explained that Dad was worn out. The very nice chap gave us a very much appreciated lift back to the car (it was a 10 min walk mmm 20-30 for Dad).
The drive home took us near where Dad and Mum grew up so I took Dad for fish'n'chips down at his old beach and a bit of a drive around his old town. The house his Dad built has been pulled down, his brothers house on the foreshore gone too and enormous houses have replaced them. But the house in which Mum and Dad lived when they first were married (and where I lived till I was 2) was still there.
Dad had a great day but in future I think I will plan quieter, less strenuous days for outings.

What a relief.

2009-03-12T22:46:00.004+11:00

Everything went really, really well. I told Dad this morning about having a holiday (respite) for a week. At first he was slightly troubled and wanted to phone my brother who lives interstate but as he sat and thought about it, he concluded by saying I wasn't having much of a life and that he was ok with the idea. Still never ceases to amaze me. So we went off and had a tour of this wonderful new facility that looks like it should be in Palm Springs and we were both super impressed with the facilities and activities. From what I could see of the interaction between staff and residents, it all looked great and people were smiling. Whilst we were there Dad seemed quite excited at the idea of staying there for a week and yes he is booked in to have a week from the 23rd of this month. Since being back home his anxieties about it have risen but if I keep him busy and occupied, hopefully it wont be too overwhelming for him. Tomorrow we are off to an airshow. He is going to love seeing the jet fighters and the old bombers. Personally I'm not into war machines but can appreciate the technology.
I am so very relieved that everything turned out well. I don't know what I would have done if he had have cried and said he didn't want to go.
I learnt a lot from Dad today and just hope if ever I am in his shoes one day that I too can be as diplomatic about it all as he was today.

Taking deep breath...

2009-03-12T11:12:00.004+11:00

As I write this Dad is eating his brekky and I am wondering how I'm going to tell him about the appointment we have, this arvo, to look at a facility for respite. For the past few weeks I have been at arms with myself trying to avoid this day. I have appointments to look at other places later this month. This really sucks!

Dad is becoming more vague

2009-02-28T17:04:00.003+11:00

One daughter is home from Japan, gearing up to begin her law degree. My other daughter comes home Monday. Having my daughter who lives at home, back home certainly helps me with my state of mind. Just having someone to have a chat with or someone here so I can duck up the street makes an enormous difference. So will see how things pan out over the next couple of weeks and re-evaluate the need for respite.

Dad continues to wake me up from about 3 am, every half hour to hour. He wants to know if he should start to get ready to go to the 'old boys' (day centre group which he goes to of a tues). I mumble, not today, you go of a tues, today is fri, sat, sun etc. Dad is certainly becoming more confused and anxious. Earlier, today, my daughter was getting ready to go out and in that process she went from her room to lounge, to bathroom, doing things and gathering her things, all quite normal behaviour and Dad came to me and asked me 'what is she doing, she goes into her room and out and gets something and goes back', going from room to room. Oh dear! When Dad first asks that type of question I at first think in real terms...she is getting ready...mmm...oh, that has confused you. It's hard to imagine being that confused. It would be so very awful to have your world all topsy-turvy and unfamiliar.

I have also noticed that Dad at times can not partake when a few people are having a conversation. He introduces new topics at inappropriate times and can not follow what is being chatted about. This is very disturbing because my Dad loves to have a chat. Some people are talkative and others more quiet, well Dad is a chatty person. He has always been the chatty, jolly one, making people feel at ease with his endearing nature. It's sad to see a strong personality trait fade away. I feel like he is on a precipice of some kind again.

Time for Respite

2009-02-21T12:38:00.002+11:00

Dad sparked up after his B12 shot. He was more chatty, cheery and for the first 2 nights slept better. But for the past few nights he has woken up and then comes and asks me if I'm awake or what day it is. He may do this 4-7 times a night. Broken sleep is not good. Last night he woke me up thinking we had been evacuated. My brain feels hazy.
He asks me continuously if he is going to go to the 'big boys', his day centre group, he can ask every 30 mins. He talks of going to Uni to get a degree and gives me a running commentary on what the cats are doing. As soon as I'm sleep deprived my patience leaves me.
I have tried to take Dad out but he became extremely anxious, asking me over and over again what was happening to the point I was so pleased to get home.
I think it's time for respite.

Victoria's Bush Fires.

2009-02-13T11:47:00.002+11:00

It has been an awful, awful week. The bush fires in my state of Victoria have been beyond comprehension. The town of Marysville, gone. So many small townships, gone. So much devastation.

The day of the fires Dad wanted to go help fight the fires. When I told him he couldn't go...he cried.

No major changes with Dad. He is a bit depressed, sleepy and slightly more confused but that's understandable this awful week. This afternoon Dad has an appointment to get his B12 shot. I find that he gets a lift from the B12.

Let's hope that next week with hotter weather and stronger winds on the way that the bush fires that are still burning don't threaten any more lives.

Appointments with the Geriatrician and Neuroscientist

2009-02-07T10:51:00.005+11:00

Thursday morning Dad saw the Geriatrician and the Neuroscientist and my daughters left for a month in Japan.

The Geriatrician was concerned when I explained about Dad's pre-xmas flare up of his Parkinson's symptoms. He said he may have admitted Dad to hospital. Knowing, from when Dad stayed overnight in hospital for his sleep study and observation due to chest pains, he becomes very disorientated and agitated. Plus that the Neuroscientist said that the Parkinson's medication can increase the confusion, disorientation and hallucinations (which Dad doesn't have). I understand that getting the balance is the desired outcome. To maintain mobility and pain management, on one hand with the least increase of the confusion etc on the other.
The Neuroscientist commented that Dad's mobility at present is good. To be honest, I am pleased Dad wasn't hospitalised at this stage. It is only in hindsight that I can say it was fluctuation. I wonder if Dad had have been hospitalised, and disorientated and confused with the stay plus if he was given medication, would he be doing as well as he is. Do dr's medicate too early?

Late last year Dad had a PET scan and the Neuroscientist had the results. It confirmed her diagnosis of Lewy Body Dementia and Alzheimers and she mentioned that he doesn't metabolise the glucose in his brain. She also asked if Dad would participate in a trial of an ALZHEIMERS VACCINE! I only have an overview of the trial as I will be contacted soon with the details. What I do know is that the trial will go for 18 months and requires Dad to have a monthly injection. Let's hope that one day there is a break through in prevention.

Also found out that Dad's overnight stay in hospital for a trial of a CPAP mask to help with his severe sleep apnea is to happen soon. I will be staying with him. If Dad can handle the CPAP the Geriatrician is hoping that Dad will sleep better and have less confusion. I hope so too but hope that Lewy isn't too far advanced for Dad to gain any benefits.

Dad is doing ok but again we are gearing up for 44 degrees plus extreme wind so we are house bound. Boredom, I'm sure increases Dad's confusion. Last night he awoke and was rambling how he had to find something and sell it. And some of the time, he has no idea if it's morning or night.
The coming week's forecast is for in the 20's so will get Dad out and about.

A little more slips away.

2009-02-01T10:50:00.004+11:00

Is it the heat or part of the Lewy progression? Dad can't shampoo his hair anymore. The more I think about it as I write I think it's Lewy. For awhile, Dad has occasionally been putting the shampoo on his dry hair or getting out with dry hair and shampoo in it. I have ended up just saying hop back in and rinse your hair, trying to leave taking over life's functions until totally necessary. This morning he was too befuddled so I washed his hair for him, leaving him to soap up and wash himself. Eventually I can have someone come to shower him but will keep this at bay for as long as possible.
Also last night he woke at 3am shouting out for help. He had manoeuvred himself behind his TV in his bedroom, knocking off the aeriel, over a vase and a few other things. He was totally disorientated.
This morning he is in great spirits. I'm not a morning person! So after I hosed the garden for 2hrs, we are on water restrictions. No washing cars, windows, no hosing down of driveways etc. Can hose, 2hrs on 2 allotted mornings a week, at specified times. Our garden is med-large and with the heat, some poor plants are actually blackened, like they were going to self-combust. Came back inside, woke Dad up, helped with his brekky, medication, shower etc...As I said, I'm not a morning person. I love peace and quiet first thing in the mornings, but Dad is chirpy and jolly and wants to chat a lot. Even the people at the day centre where he goes have remarked how much he loves a chat. He can talk at inappropriate times. This happened whilst they were all watching a history show and a chap told him to be quiet. Poor Dad ended up teary and I was rang because he wanted to come home. So as I write Dad is reading out parts of the newspaper to me. He reads the paper every day...to himself and to me. Time to go prune or weed or something.
Yesterday it didn't get to 37, yay and today's forecast is for 31...sensational!

Unbearable Heat.

2009-01-31T11:52:00.004+11:00

Yesterday we reached 45.1 degrees Celsius (113.18 degrees Fahrenheit) it's official, it's the hottest-known three-day heatwave we have had. Today's forecast is 39 then the low-mid 30's for 7 days, such a relief. Our state has a few bush fires raging and one in the suburbs in a National Park is threatening major transmission power lines which feeds 2/3 of the metropolitan area. Train tracks have buckled and power blackouts meant cancellation of a lot of train services, for a couple of hours all train services were cancelled, leaving 1000's stranded in the heat.
But OHMG Adelaide has had days and days of unbelievable heat (in the 40's) and has more to come of it, the next 7 days above 38. A headline reads '22 deaths in sweltering Adelaide', mostly elderly people.

Needless to say we've cancelled our ferry trip.

Dad is faring well. There are 3 air-conditioners in the house, 2 work and 1 doesn't, so I keep one room closed off with the air-conditioner on for Dad.

The other day when we pulled up out the front Dad said he saw a black dog, without an owner, go around the corner. I wasn't looking that way but I wanted to drive around and see if there was a black dog, I didn't. There may have been one...and maybe there wasn't but my stomach turned over.
Also Dad is becoming more hunched over and has a lean to the side. When I was helping him shower I said 'get your head under the water' and he couldn't straighten up or manoeuvre himself under the spray. So I moved the shower head.
He still remains in good spirits, never complains and wants to participate in life...I'm the one complaining about the heat.

The Heat Wave Continues.

2009-01-30T09:39:00.004+11:00

Yesterday was 43.4 degrees Celsius (110.12 degrees Fahrenheit), today 43 again. Poor Adelaide reached 46 degrees! And they have had days and days of heat. Our power went out Wednesday evening. There was an enormous explosion and a power pole, just around the corner burst into flames. I went outside and could see flames above the adjacent houses. The fire brigade arrived before the fire spread to any of the houses, thank goodness! Needless to say on Thursday, we couldn't remain in the house with no air-conditioning. So I took Dad to the library and to a shopping centre. It was like Xmas in the centre, so many people trying to escape the heat. When we returned home I sat Dad in the only bit of breeze I could find and put a wet towel on him. Later he had a cool shower and in bed I laid a wet towel on him and every hour re-wet the towel. Luckily the power came on again Thursday evening. How did people ever survive without air-conditioners? My cousin invited us to her house and if the power had have remained out, I would have taken up her kind offer.

This morning my younger Brother invited Dad to spend the day with him. Oh dear! My brother does a form of couriering. In and out of the car. It was difficult trying to explain to them both that he couldn't leave Dad in the car...43 degrees! Nor could he take Dad in and out of places in the heat. It's been about 3-4 months since my brother has taken an interest in Dad...why today, of all days! That's an example of the guidance my brother needs, he means well but...oh dear!

Dad's two special books.

2009-01-27T10:39:00.003+11:00

Dad has gone to his day care which he calls 'the old boys'. He asks me each day, 'is it today I go', 'when do I go', 'I haven't been in ages', he can ask up to 15 times a day. He worries about being woken up in time to go, whether he will have clothes to wear. I can only reassure him that I will help him and that he will go on Tuesday. Last week, when I picked him up, the carers told me how they had watched the movie 'Mama Mia' and how Dad had got up and did a dance and a jig. On the way home I said 'you have had a good day and you had a dance' and Dad said 'yes, I was happy my granddaughter got into Law'. That was the morning we found out about my daughter's Law placement. Whilst growing up, Dad would often do this funny dance, jig and kick both legs out to side, clicking his feet together. How we all used to laugh and he would have his grandchildren in stitches...'do it again Pa'. So it's wonderful that Dad still has some terrific days.

I have noticed a little cognitive decline. Some days Dad says more sentences which don't make sense. Showering, he may get out with the shampoo still in his hair but overall he still has great days. One day he was worried that he couldn't find his 2 very special books (I have given the whole top shelf of the book case for these 2 books, because they deserve it and so Dad can find them). He was awarded them for being apprentice of the year in 1949 and they were presented to him in a ceremony at the Town Hall. They were still on the bookshelf but I noticed after Dad had come home from my Brothers that he had gone and found the booklets of my Brothers Degree ceremony and put them in between them. It was like 'that's my boy a chip off the old block'.

We are having a heat wave, 5 days to come in the 40's. I don't like it that hot and I find that Dad needs to have an afternoon lay down. He usually will have a nap in his chair and I have said why don't you have a lay down but he won't. But on hot days he will. I'm hoping the week of hot weather doesn't tire him too much because on Saturday we have a family outing with my cousins planned. We are going to drive to Queenscliff and catch the ferry (put the car on too) to Portsea, have lunch in the beautiful Portsea Hotel, on the cliff overlooking the bay and perhaps go to a rose garden maze. Dad loves being on the water, he used to have a boat and his Father did too. My Grandfather built his own boat and also his house. I can remember my Granddad's boat, this big wooden fishing boat. As a family we spent many hours fishing or water skiing.

All in all, everything is good.

President Barack Obama and my two daughters.

2009-01-22T10:42:00.003+11:00

My daughter and I sat up till 5.30 am Wednesday morning and watched the inauguration of President Barack Obama and I recorded it for Dad to watch, which he did yesterday.

What a wonderful, momentous event.

And on a personal level, my two daughters, who I'm so proud of have had lots of life changing things occur recently. My eldest daughter's career is taking off, she studied photography at VCA and is now freelancing for a few published and on-line Australian and International magazines. They're sending her to the various fashion weeks around Asia and New Zealand. She also has begun an internship/writing for an Australian magazine. She also has some fashion styling projects for fashion shoots coming up. Recently one of our main newspapers did a two page article about her. It's so amazing all the offers she is getting...and she started out with a blog.

And my youngest just finished an Arts degree and got offered Law at Monash University and also a Masters of Education at Melbourne University. She is going to do Law...I cried when she found out...it's been an amazing week for us.

And Dad continues to have great days. No new things to report which makes me very happy.

And thankyou Ian, the DVD about Alzheimers arrived, which I will watch when Dad goes to bed.

Dad is having some great days.

2009-01-19T07:57:00.003+11:00

Yesterday morning Dad was the closest to being as I remember him. He sounded like my old Dad. Since he has been home he has had great days. His Parkinson's symptoms, the freezing has stopped, which is wonderful. But I have noticed he is having trouble, when dressing with his balance. Thinking of what he was like before the New Year, he really is having a good spell. I think the break at my Brothers did him the world of good.

Holidays are over.

2009-01-14T15:25:00.004+11:00

I returned Sunday from my holiday in Tasmania and feel revitalised and ready for whatever Lewy throws at us. In Tasmania I went on a day cruise across Macquarie Harbour and along the Gordon river. This area is World Heritage listed, it's so beautiful, serene, pristine; total wilderness country. I also did a few other day journeys through wilderness/rainforest areas, soaking up the peace and beauty.

I picked Dad up from the airport yesterday, Tuesday. He had a terrific time at my Brothers. I think he didn't want to come home because he enjoys doing guy things with my Brother and Nephews. I have to thank my Sister-in-Law because I'm sure there may have been times when it would have been difficult for her. It's easier to help with personal things when it's your parent. Monday I got in touch with Dad's Dr's and case assessor. I will be pleased to speak to his Geriatrician about Dad's bowel movements. Dad's case assessor said she recommends for Parkinson patients to eat a Kiwi fruit a day as this helps to soften the stool. So I'm going to cut back on the Senna tablets and give him a Kiwi Fruit a day, plus his prunes and other fruit.
She is also going to bring around a bed stick and drop sheet and show me how to roll Dad in bed, physio moves. She also told me that Dad may be disoriented when he came home. No, thank goodness Dad has settled back in really well. I'm certain that going to my Brothers, a familiar place instead of respite was best for the stage Dad is at. I need to clarify my position regarding respite. If a carer needs to use respite then I'm 100% for it.

Dad has had a good day so far, watching the Australian Open (tennis) with the air conditioner on. Yesterday was 37 and it feels just as hot today. Hopefully a cool change is on its way.

Dad is excited about going to my Brothers.

2008-12-31T10:11:00.002+11:00

Dad is on his third shave, he is looking forward to going.

As much as we love each other, we certainly needed this break. Yesterday, Dad was determined he was going for a walk. He became slightly aggressive, saying he never goes anywhere. Oh dear! He also said something about missing out on going anywhere for Xmas. I got a glimpse of how difficult it will be not to correct him when things progress further.
I feel like he is attached at the hip. So this break will do both of us the world of good.

And Dad's bowels moved thoroughly overnight. It's certainly better than becoming impacted, but from one extreme to the other (and it took a couple of weeks)! So my Brother will have to play it by ear with the senna and prunes.

As for me I'm off in the morning on the ferry/ship to Tasmania. It's a 9 hour trip so I'll spend some time in the cinema/bars/restaurants and will begin one of my books I was given for Xmas.
...sensational.

I wont be posting till I get back so Happy New Year to all my family, and to all the people involved with a Lewy journey, David and Heather and Ian; I'm looking forward to the next installment about the folks in Okeroo.

Helping Dad to Bed

2008-12-28T14:43:00.003+11:00

For the past couple of weeks when helping Dad to bed I have noticed he places himself oddly, into an L shape. He can no longer roll, shuffle himself in the bed. Last night, he got into bed, was in an L shape so I asked him to get out of bed again. Sat him on the edge, and helped him down onto his side and swung his legs across. He was now on his side and laying straight. He said 'that's a lot more comfy' and he had a better sleep. What concerns me is that he can, some nights, get up to urinate, maybe 10 times. So on these nights he is getting back into bed into an L shape. I think all I can do is, if I hear him, help him position himself back into bed.
The positive side is that he is still mobile and that I am thankful for.

Parkinson's Symptom Management

2008-12-27T13:59:00.005+11:00

This taken directly from http://en.wikipedia.org/wiki/Parkinson. It's Dad's Parkinson's symptoms that are causing Dad problems at the moment so I went searching for some help..

There are other disorders that are called Parkinson-plus diseases. These include: multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD). Some include dementia with Lewy bodies (DLB) — while idiopathic Parkinson's disease patients also have Lewy bodies in their brain tissue, the distribution is denser and more widespread in DLB. Even so, the relationship between Parkinson disease, Parkinson disease with dementia (PDD), and dementia with Lewy bodies (DLB) might be most accurately conceptualized as a spectrum, with a discrete area of overlap between each of the three disorders. The natural history and role of Lewy bodies is little understood.

I felt I needed information to help Dad with his Parkinson's symptoms. I found this information at http://www.parkinsons.org.au/about-ps/treatments.htm Parkinson's Australia.

Symptom Management
1. Mobility
Rigidity and slowness of movement are the two most frustrating aspects. Common difficulties are:
Walking
-to help initiate walking gently rock the patient from side to side and then ask to step forward
-encourage to step over an object when freezing occurs
-counting while marching is helpful
-encourage arm-swinging to improve balance
Turning
-encourage to turn in a wide circle rather than pivoting on the spot
-Rising from a chair
-use a high chair with arm rests
-move to the front of the chair, place feet on the floor 8 10 inches apart, put hands on arms of chair, lean forward and push up. If unsuccessful rock forward and re-try
Turning in bed
-may need regular turning
-use Tri-Turn Sheets, bed poles, other aids
Tremor
writing, eating and dressing are difficult
-keep elbow pressed close to side
-use eating utensils from Occupational Therapist
-velcro tabs easier than zips and buttons
2. Eating and Drinking:
-assistance with eating may be necessary
-alter the diet if necessary
-frequent sips of cold water to prevent food sticking
-encourage coughing to prevent aspiration
-watch posture while eating
3. Constipation:
due to poverty of movement and slowing of bowel action also decreasing fluid intake and anticholinergics
4. Urinary Incontinence:
due to difficulty getting to the toilet, and inability to undress and prepare when there
monitor for constipation -- do not allow impaction to occur
-night time is more difficult due to turning and moving
-patients may be unable to initiate voiding -- frustration for nurse and patient
5. Communication
Parkinson's affects the control of muscle co-ordination and therefore a person's ability to communicate. The symptoms of tremor, stiffness and slowness can also impact upon the person's verbal and non-verbal methods of communicating with others.
Verbal Communication Speech:
Approximately 50% of people with Parkinson's experience difficulties with speech.
-the voice becomes softer due to a decreased ability to vocalise during exhalation
-slurring due to decreased tongue control
-difficulty initiating speech or unwanted hesitations due to akinesia
-uncontrollable repetitions of words
-speech may become monotonous and flat sounding, with no variation in the pitch and quality.
Management:
-referral to a speech pathologist
-increase use of non
-verbal communication, shorter sentences, more frequent pauses
-deep breathing and vocal exercises
-practice making sounds i.e. vowels
-don't let others talk for you
-use amplifiers etc if needed
Non-Verbal Communication
Facial Expression:
-due to reduced movement it becomes expressionless and "mask-like"
smiling, frowning, grinning and the ability to express anger, fear and joy require a conscious effort
-the listener may become confused and unable to respond appropriately
Management
facial exercises involving the brow, eyes, cheeks and lips to increase mobility
Limb Movement:
-may be restricted or "frozen" therefore limited non-verbal communication
-tremor of the hands most common
Management:
-general range of motion exercises to stretch the muscles of the limbs
-the tremor occurs at rest and decreases with purposeful movement therefore ensure the hand is doing something e.g. play with a coin, bead, or pen etc.
-arrest the tremor by immobilising the limb e.g. thumb tucked into belt, sit on hand, grab hold of structure, tuck elbow into side
Handwriting:
-due to difficulty with fine motor movements, the handwriting becomes smaller (micrographia)
-the shape of the letters remains the same but the size is smaller
-the smallness is exacerbated when writing a long paragraph compared to a short sentence, or when doing another task at the same time e.g. writing a message while on the phone changes may be noticed when signing cheques
-tremor can impede writing
Management:
-if writing becomes small STOP. Think about what you are writing and rehearse the movement in your mind
-write only small sections at a time
-use lined paper to act as a visual cue
-avoid doing other tasks while writing
-printing instead of writing may be easier
-use a non slip foam grip on the pen
-use other methods e.g. typewriter or computer

Christmas Day 08'

2008-12-26T21:12:00.004+11:00

We all had a wonderful day at my cousins for Christmas lunch and dinner. Lots of yummy food and the most amazing professional xmas cake made by cousin's hubby who is a pastry chef...some people have talent. Dad was given a chicken for Oxfam and I, women's support for Oxfam. And I got my favorite, books, from my girls. Thanks family for a lovely day.

Dad had a great day and was happy. His cognitive functions were quite good but his Parkinson symptoms were playing up. It's his bowels again. I have increased the senna tablets to the maximum dosage per day, 2 in the morning 2 at night plus after each meal I give him 10 pitted prunes. After reading more about Parkinson symptoms I have decided to not start the Genlac until I speak to the Geriatrician. The Genlac helps by bulking up which in turn helps the muscles to automatically work but if Dad's muscles aren't following commands and he bulks up and can't expel he will be in worse pain. So throughout Christmas Day Dad was having trouble working his bowels.
When we were leaving and getting into the car his muscles froze but I was able to talk him into position...put your bottom back...lift your leg into the car. On the way home I drove Dad to see some local amazing house all lit up with Xmas lights. When we were children it was a Xmas tradition to go see the decorated houses on the Boulevard.
At 3.00 am Dad was up, naked in the hallway. He had had an incontinence episode. I was soooo tired...strip bed, had wet through mattress protector, turn mattress over, change Dad, don't put any sheets on bed...help him back in to bed. Go back to my room...could hear him shouting out...I could only shout back...you are ok, go to sleep...peace reigned, wonderful.

I have noticed Dad becoming more and more rigid when I help him into bed. He is becoming board like. This evening, he at first knelt on the bed but couldn't swing down to a horizontal position. So I sat him on the edge and helped his torso down, his legs shot up and I swung his legs across onto the mattress. I could have swung him, pivoting on his hip, like the hand of a clock. Even though he was laying down on the mattress, he looked like he was perched and could have fallen.

It was most important that Dad had a great xmas...and he did.

The Parkinsonism's.

2008-12-24T16:08:00.002+11:00

Yesterday Dad had a wonderful time at the day centre. There was lots of festivity, singing of carols, yummy treats to eat and lots of smiles from everyone. It was lovely to see.

But on a more sour note. The evening before Dad was having trouble again going to the toilet. Its when he needs to use his bowels that it happens. I was asking every few minutes, 'are you ok'.
Dad replied yes. After about 15 minutes I knew something was wrong and asked again. Dad said,'no I can't stand up, I told you so before' (he hadn't). I ask him why he can't stand up, ( I was kinda scared). Dad replies, 'I just can't'. I ask him has he wiped. 'No'. Through the next few minutes of conversation I work out that he had been trying to get 'IT' out manually. This also happened with this gentleman http://livingwithlewybodyebook.blogspot.com/ at 'digging for diamonds' entry. Oh dear! Have to give instructions to Dad to 'wipe and drop the paper'. Poor Dad drops the paper on the floor. I eventually get him off the loo and nail brushed finger nails etc. I help him up to his room and he says 'he is sorry and he wants to kill himself'. Dad still has quite good cognitive functions (most of the time). I take a big breath and tell him "you're 75, I guess you have to expect somethings not to be quite right'. He says, 'yes, I'm still lucky there are a lot of people worse off'. He never ceases to amaze me.
The next day I go to the chemist and have a chat with the pharmacist. He recommends Genlac which will bulk up and help the bowel muscles to automatically work. I will wait till after Christmas day to begin because we will be out at my cousins, just in case there's a problem.
Dad sees the Geriatrician in January. I will feel better once I can talk to him.

I wish everyone a Merry Christmas.

Anti-Parkinson's Medication

2008-12-20T14:35:00.003+11:00

This is taken directly from http://www.virtualneurocentre.com/diseases.asp?did=73, virtualmedicalcentre.com, Lewy Body Dementia.

'Anti-Parkinson's medications (eg. levodopa/carbidopa, dopamine agonists): these are used to treat the motor symptoms (muscle stiffness and tremor) of Parkinson's disease, which are similar to the motor symptoms of Lewy body dementia. However, patients with DLB are often very sensitive to these medications, with little change to motor symptoms but worsening hallucinations and confusion. Because of this, anti-Parkinson's medications are used very carefully in DLB, and only in patients with severe motor symptoms.'

And taken directly from http://www.alzheimers.org.au/content.cfm?infopageid=912, Alzheimers Australia, dementia with Lewy Bodies.

Is there treatment available?
At present there is no cure for dementia with Lewy bodies. Symptoms such as depression and disturbing hallucinations can usually be reduced by medication. However, medications to relieve hallucinations may increase muscle tremors and stiffness. Conversely, anti-Parkinson drugs may make hallucinations worse. Emerging evidence suggests that cholinesterase inhibitor drugs may be quite helpful for some people with this condition.People with this form of dementia are very sensitive to the side effects of neuroleptic drugs such as antipsychotic medications. It is essential all medications are supervised by a specialist to avoid these severe side effects.

Lewy certainly is a beast all on its own.

Dad's going to my Brothers.

2008-12-20T12:27:00.003+11:00

Last night my sister-in-law rang and Dad is going to my brothers for 2 weeks. I can't say how much I am looking forward to this break. It's been 16 months since I have had a break. I need to point out that my sister-in-law has had a very tough year, losing her Mum in June. She also has had the worries of her grieving father to contend with. My nephews have lost 2 Nana's in 2 years.

On my break, my eldest daughter, her hubby and I may go away for a few days together then I hope to spend a week in Tassie, bush walking, canoeing etc. And Dad loves being with my brother and his family, apart form seeing them all, including his grandsons, Dad gets to assist my brother in his shed doing guy things. My brother, growing up, learnt a lot from those hours spent in the garage and I believe now has the nick name MacGyver. Dad misses doing those things.

As a child I used to enjoy spending time with him in the garage, not many girls of my generation could re-wire a fuse (old type of fuse) and it actually came in handy over the years, thanks Dad. So a big thanks to my brother and sister-in-law.

Dad's Parkinson symptoms flare up.

2008-12-19T11:59:00.005+11:00

I thought twice about writing what happened last night. But as I thought over the events I realised it's only because of this blog that I was able to work out why, what happened, happened.
If Dad thought this may help someone else in my shoes he would be ok with writing about it.

I mentioned yesterday feeling like Dad was on a precipice...well last night I could see the beginnings of Lewy smothering out my Dad.

After dinner Dad's conversation went something like this...
Dad: I have to get 2 bits of metal that cut different shapes.
Me: Oh, ok why?
Dad:You put half one side, half the other and you get more. It's a bit hard to explain.
Me: Ok, then what happens.
Dad: You can turn 2 bottles of lemonade into 3.
I gave him 2 pens and he laid them out and showed me where another would go. I managed to curtail the urgency by saying he didn't need to make it tonight, that it could wait till tomorrow.
So then it was time for Dad to go to bed...He went to the toilet and came out saying he had a dirty bottom. I get his P.J's and turn shower on for him. He was taking his time, I hadn't heard the shower door close. Thought better check. He opens the door and he had pooed on the bathroom floor, (one good thing no sign of constipation) but oh dear, my poor Dad...try to remain calm and show him this doesn't bother me. Kitchen paper got rid of that (remember to write list, rubber gloves, antiseptic hand wash etc). Dad has shower and I help him to get into his P.J's. His Parkinson symptoms were playing up. He can't get dressed in the bathroom anymore. It's too dangerous, if he was too fall. Remember, from now on, dressing gown it to his room.

Later that evening I was trying to work out why it happened. Was it Dad's cognitive functions declining and he didn't know where he was. No, he was able to shower, get the towel and dry himself and then I remembered reading this blog where the gentleman with Lewy became frozen, perched above the toilet for about 15 minutes. Now it made sense to me. Dad couldn't navigate his way down onto the toilet. I now, know to watch out for him when he goes to the toilet. (there's a safety rail in the shower time to get them fitted to the toilet walls). And I only know this from the honest, detailed approach the carer's and author's took writing their journey with their Father/Father-in-law and Lewy and I thank them.

Neuroleptic Sensitivity

2008-12-18T13:35:00.003+11:00

This is taken directly from http://www.lbda.org/category/4132/treatment-options.htm , the Lewy Body Dementia Association. I may print this out, in case Dad ever has a stay overnight in hospital.

Neuroleptic Sensitivity
Severe sensitivity to neuroleptics is common in LBD. Neuroleptics, also known as antipsychotics, are medications used to treat hallucinations or other serious mental disorders. While traditional antipsychotic medications (e.g. haloperidol) are commonly prescribed for individuals with Alzheimer’s with disruptive behavior, these medications can affect the brain of an individual with LBD differently, sometimes causing severe side effects (see below). For this reason, traditional antipsychotic medications like haloperidol should be avoided. Some newer ‘atypical’ antipsychotic medications like risperidone may also be problematic for someone with LBD. Quetiapine is preferred by some LBD experts. If quetiapine is not tolerated or is not helpful, clozapine should be considered, but requires ongoing blood tests to assure a rare but serious blood condition does not develop. Hallucinations must be treated very conservatively, using the lowest doses possible under careful observation for side effects.
WARNING: Up to 50% of patients with LBD who are treated with any antipsychotic medication may experience severe neuroleptic sensitivity, such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. (NMS causes severe fever, muscle rigidity and breakdown that can lead to kidney failure.)

Fluctuations.

2008-12-18T11:49:00.002+11:00

The fluctuations in Dad's motor skills and cognitive functions have lasted from a few minutes to a couple of weeks. Months ago he was having difficulty manoeuvring himself into his clothes, this lasted 2 weeks and then he was managing again.

Over the past month I have noticed Dad trying harder to anchor and position himself within the day. He asks after each meal, is there another meal to come.

I have also noticed a change when he feels lost. He would shout out 'It's John here', as if he knew there was someone in the house with him. But throughout the early hours of this morning he woke, and came down the hallway, shouting, 'Is anybody there'. He was frightened and thought there was no one else at home. My youngest daughter and myself, we were both at home and in our rooms, asleep. We got up, reassured him and Dad would go back to bed and to sleep. I feel like he is on a precipice. I only hope these changes are fluctuations and aren't permanent.

I think he, in some way, is aware of these changes because later he didn't want to get out of bed. He was depressed.

Dad never, ever and I mean never wants to stay in bed. Around 11 am I asked him if he wants to have brekky. He got up had brekky and a shower and just now is laughing at something on TV. He never ceases to amaze me. How he can bounce back.

Dad loves weekly day group

2008-12-17T13:30:00.002+11:00

Yesterday, Dad had a great day...

On Tuesdays Dad goes to a day group. The staff are amazing. They make him feel so welcomed, relaxed and are so willing to listen to whatever Dad has to say. They're so patient.
They play games such as quoits, have party days, play with tambourines whilst dancing to music. They have a sing along with a pianist. Dad was in a choir as a boy and participates vigorously. I have often heard his voice, above the others, floating down the hallway, when I go to pick him up. In the garden there's a bird aviary, a bus stop, letter box and benches amongst the flowers.
I get a much needed 4 hours to myself.
Monday evening, both my daughters stayed over and we spent Tuesday together. It was great therapy for me filled with lots of much needed laughter.

Something that I learnt earlier this year which helped Dad to sleep through the night without getting up 3-5 times wanting breakfast, wanting to get in the shower and to get dressed. Dad would do this if he knew he had an appointment at the Drs, hospital or any outing. He would become so stressed, worrying about all the elements involved in being ready to go. Every night he would ask what was happening tomorrow. I learnt that if I said there was nothing planned he remained in bed and slept through till morning (most nights). At first it seemed a high price to pay, to never have anything to look forward to, but during some of those night time awakenings, Dad could get quite aggressive when I suggested he go back to bed. This approach has worked, stopping Dad from stressing and eating breakfast at 2.00 am. There are still the occassional night time awakenings, screamimg out and getting up, where he is afraid because he doesn't know where he is. Seeing that fear is definately the hardest thing for me to cope with. Luckily, so far I have been able to break Dad out of his fearful state and calm him down. So things, overall, remain relatively optimistic with Dad still having some terrific days.

Dad's bowel movements...it has to be discussed.

2008-12-13T16:23:00.000+11:00

Dad's constipation is getting worse...

Over the past 6-8 months Dad's bowel movements have changed.

I have gone from giving him a Sennetab (sennoside.B 7.5mg) 1 every 2 days to 1 every day to now, 2 every day. He also groans. When I first heard the sound I thought it sounded like a cow giving birth. I have read a blog where the person said it sounds like the noise a whale makes. It certainly is a different noise to the sounds an average person makes when constipated.

From reading http://livingwithlewybodyebook.blogspot.com/2008/04/what.html I realise this is the Parkinson part. His stomach muscles freezing. I have noticed over the past 2 months a few episodes of Dad freezing, to the spot, can't walk or talk. This happens more if he is trying to navigate his way into a chair. I think I need to keep a diary of Dad's bowel movements. To make sure he keeps regular and pain free and also if I need to discuss with Dr.

He also likes to tell me about his bowel movements. My Dad's private nature is changing. Sometimes at inappropriate moments. My Dad, Daughter and I were recently with a Real Estate Agent an Dad said how 'he thought the change in altitude had helped his bowel movements', huh! Later we all had dinner out and Dad said it was one of his best days he had had in ages.

Dad eats fruit, veges, beans/legumes and only whole grain bread. But next grocery shop I will be getting prune juice and stewed prunes. Hopefully this will help.

Over the past year I have noticed he eats a lot slower. Occasionally, he has taken 50 minutes to eat his dinner. He was having problems chewing red meat. So now we eat more chicken and fish (Dad loves fish) and occasionally pasta.

Dad is having a good day but gets confused as to what the time is. He is looking forward to spending Christmas day at my cousins. Dads sense of time is now child like, weeks appear to be months to him. But overall he is happy.

B12 injection.

2008-12-12T14:25:00.000+11:00

It's 2.30 pm and so far Dad is having a good day. He has an appointment at family Drs for his B12 injection.

He has just had a shower. I get his clothes ready for him, get his towel, put then in bathroom and adjust the taps. The shampoo bottle is always purple and in the same spot. Everything is always in the same spot. This helps to reduce his confusion and stress levels. Dad is able to wash himself and dress himself. If I leave too much for him to organise, ie if I leave his clothes on his bed and he has to bring them down hallway and put them in bathroom. He ends up walking up and down the hallway, worrying, if he has forgotten something. He then worries where he will put the clothes, ie on the edge of the bath or on the towel rail. As his confusion gets worse he will then worry where to put his dirty clothes, it becomes too much for him to organise. So organising things for him keeps him from stressing.

He then gets the electric shaver from the nearby linen closet. It used to be kept in his room but I need it to be in my view because Dad pulled 3 shavers apart, breaking the internal wheels. Now I can see him get the shaver out and put it away.

For approximately the past 6 months Dad has had problems with phlegm. He has had chest x-rays and lungs are clear. But throughout the day and night he coughs and clears into a tissue. After reading livingwithlewybodyebook@blogspot.com I know that this will get worse. From what I have read I think this is part of the decrease in the ability to swallow.

Dad is watching TV now, my turn for a shower.

Dad used to doze off all the time.

2008-12-12T12:16:00.000+11:00

During 2006 and 2007 Dad used to fall asleep a lot. He would just doze off. In the car (passenger) at home in front of the TV. When Mum was in hospital he could doze off at the most inappropriate times. For example when Mum was being resuscitated and intubated, when Dr's were discussing Mum's treatment. I think it was Lewy combined with stress. After Mum passed away Dad had quite a few episodes of narcolepsy. He would be drinking a cup of tea and just nod off, dropping the cup. Or eating and just fall asleep, head first onto the plate. During this time, he also when napping, would reach out his arm, plucking at the air or bend down trying to pick something up off the ground. This happened a lot during 2006 (Mum had bad rheumatoid arthritis) and late 2006-2007 (Mum was in hospital, COPD). Now Dad doesn't nod off much. He went from dozing perhaps up to 10 times a day to now having an afternoon nap every third day. And the plucking motions don't happen much now.
I have noticed over the past year, if I alleviate things which stress Dad out he has much better days and nights. I will over time discuss these things.

Dad has chest pains

2008-12-11T21:27:00.000+11:00

Two weeks ago...

We were having dinner at my cousins and Dad goes grey. I ask him is he feeling ok. No, he has chest pains. He was looking clammy and wanted his top removed.
Cousin phones ambulance. Paramedics hook up ECG, not having heart attack but some irregularity is showing up. Dad goes to hospital, spends night. Blood tests show no heart attack but ECG still showing irregularity. Explained as a non-specific irregularity. Dad comes home.
Dad is home 2 hours, chest pains start again, phone ambulance. Similar ECG reading. Dad goes back to hospital. Tests reveal no heart attack. Again irregularity is said to come from a non-specific cause. The chest pains are believed to be from reflux and medication (Somac/Pantoprazole 20mg, 1 per day) is prescribed. Dad comes home. I take Dad to see GP, he doubles the prescription dose (40mg Somac) and prescribes another tablet (Motilium/Domperidone, 10mg, half hr before food) to help with digestion. He further explains how spasms of the oesophagus can cause the pain. I come home and read about Gastroesophageal reflux disease (GERD) and the possible link to Obstructive Sleep Apnea.
The following day Dad complains of chest pains again. I have to make a judgement call. Dad is walking, pain isn't severe, Dad's color is ok. I tell Dad the pain will go by itself. This happens again the following day. Since then Dad has had no more chest pains, the tablets are working. Thank goodness.

That brings us up to date. I wonder what tomorrow will bring...hopefully Dad has a good day.

Dad has sleep study.

2008-12-11T21:05:00.000+11:00

Sill updating so I can then write about Dad's days and not his history...

Eventually Dad's name got to the top of the sleep study list.

Dad spent the night in hospital, hooked up, videoed and monitored etc. Conclusion, Dad has severe sleep apnea. His throat collapses 50 times an hour. At present we are waiting on list for hospital stay so Dad can be fitted and assessed with mask and air flow determined. If this does not work surgery may be required. This wait is frustrating, knowing that Dad's concentration could increase and possibly his cognitive functions.

Amazingly at the next Neuroscientist appointment, after her tests, she thinks Dad also has Alzheimers because the Lewy symptoms are progressing slowly. The diagnosis started off as Alzheimers, then it was Lewy, now it was Lewy and Alzheimers. Considering everything, the B12 episode and Dad's severe sleep apnea, I was so pleased to hear that the beast, Lewy, was progressing slowly.

Dad has a fit/seizure

2008-12-11T20:42:00.000+11:00

Still updating the journey...

Dad had a fit and became unconscious.

I was cutting Dad's toe nails, sitting on the back stairs (outside). His right leg began to shake. At first I thought he was holding his leg in an awkward position so I could cut his nails. Both legs then shot out straight and he reclined to a 45 degree angle. At that stage of Lewy, occasionally Dad's body didn't seem to follow orders. So I was trying to help him to sit up. He then collapsed back on to the landing, his eyes rolled back and was going blue. I panic, begin CPR, thinking heart or does he need oxygen. Unsure, I race and phone for ambulance. Whilst on phone Dad becomes conscious. Writing about this disturbs me.
Paramedics arrive. Dad goes to hospital. Tests show he is ok.

Geriatrician orders more tests. Nuclear medicine test on heart. Heart is ok. Has EEG, not epilepsy. Has appointments with relevant specialists.
Neoroscientist evaluates results and thinks it was Lewy that caused the fit. She says more may occur.

Dad has episodes of night-time incontinence

2008-12-11T20:07:00.001+11:00

Continuing the journey...

Dad was extremely distressed by a couple of night-time episodes of incontinence. Geriatrician organises consultation with incontinence nurse. Dad's prostate had been checked and was ok.
The nurse discussed the importance of drinking water to combat this. I had been making sure Dad drank water (hydration/blood pressure) but now I needed to increase this and be diligent. She explained how as people aged the 'making urine mechanism within the body sometimes went haywire and the body produced more urine during the night'. Maintaining a certain level of water during the day would help keep the body making more urine during the day.
Other stimulants needed to be watched also.
So now:
1 coffee before lunch.
Occasionally 1 cup of tea in afternoon.
1 juice with lunch and breakfast.
2-3 large glasses of water through out day, one of these with dinner. Plus the glasses of water to take tablets.
Nothing to drink past 6 pm, but if thirsty a drink.

The outcome has been amazing. Dad, on average has only had 2-3 episodes per month.

The hardest part has been trying to convince Dad to drink the water on the following days after an episode. The incontinence nurse made a house follow up visit and again explained how important it was to maintain the water drinking. Luckily, Dad most days accepts the water.

2008

2008-12-11T19:37:00.000+11:00

Dad has further tests. CT scan, another MRI.
A sleep study is requested by Geriatrician.
The neuroscientist prescribes Aricept.

Dad also takes Aropax for depression. It was whilst Mum was in hospital that I took Dad to Drs about depression. It was this visit that the Dr should have read back and seen about Dad's B12 but we also discussed Mum and how she was doing (out of intensive care). This was part of the B12 chain of errors.

Dad has follow up monthly consultations with Geriatrician.
I notice an improvement in Dad's concentration. Aricept appears to be beneficial.

6 months after starting Aricept, Geriatrician's nurse finds Dad's heart rate is dangerously slow. I had been trying to keep up Dad's physical health by going for a walk every couple of days. I told her of on our last walk Dad had become very tired and had wanted to return home, stopping along the way. We are sent immediately to have an ECG. Geriatrician recommends coming off aricept, if heart rate returns to normal, its the Aricept. If not, its possible a pace maker would be needed. Dad has further tests on heart. Heart after a couple of weeks is ok again. It was a side effect of the Aricept.

One of the tests also show Dad has had a mild stroke. Thank goodness this resulted in Dad having no clinical stroke damage.

2007

2008-12-11T17:52:00.000+11:00

My beautiful, strong willed, vivacious and at times frustrating little Mum passed away in May 2007. Even with her odd ways, she was great company and I miss her terribly.

Dad spends 3 months at my other brother's place. This brother lives approx 900 miles away. I know that I'm coping now only because of this break. It did Dad the world of good too. It helped him with his grief. Plus at home my other brother was having major out bursts, violent ones.
My beautiful cat died 3 weeks after Mum.

Dad returns and I'm able then to focus on him, getting him to Dr's.

We have an appointment with the neuroscientist and she has in her notes the phone call to Mum. She had wondered why there was no follow up. It was an awkward situation for us all. My thinking at the time was still one of disbelief, how could Mum have lied. Dad has a MRI, blood tests etc.
(Dad had an MRI, blood tests etc done in 2005, part of neuroscientist's evaluation). He also sees a clinical psychologist. Still an Alzheimers diagnosis.
Another bombshell, she asks 'is Dad still having his B12 shots'? First I have heard of it. She says to get GP to begin them. I come home read about pernicious anemia and how a B12 deficiency can result in dementia. I take Dad to family GP he does further blood tests and says his levels are ok.

Dad has an appointment with a Geriatrician. This Dr was so thorough. It was she that diagnosed Lewy Body Dementia.

Dad had been acting out in his dreams for years, maybe 15 years. He would yell and punch. Once he landed out of bed under the dressing table. Mum sometimes made him sleep in the spare room. He could have really injured Mum. Mum was tiny and with her rheumatoid arthritis she needed all the rest she could get. I had chatted with Mum over the years saying he should have a sleep study done or at least see the local Dr about it. Mum controlled everything and everyone.
She also hated Drs with a passion, stemmed from her not being able to walk till she was 10.
Needless to say, Dad never saw a Dr about his sleep disorder. Concerning her own health it took me about 2 years to get her to a Dr's. The Dr actually said to me later, why did it take you so long to get her here. I had down loaded so much information for her, discussed with her the different forms of arthritis and that is was a matter of urgency to get a diagnosis. It could have been an infection in the joints and medication was needed. That the other types needed to be combatted with medication, too. Other relatives asked her to see a Dr, she still refused.

It needs to be mentioned that the neuroscientist was told of Dad's sleep disorder.

The Geriatrician asks:
Has Dad ever had concussion-yes (fell off a ladder, aged 69).
Has Dad ever had a fractured skull-yes (as a child from a swing).
Occupation- (electrician and many years as a TV technician-electro magnetic waves).
Depression-yes (hospitalised for 3 months in 1979) Mum never visited him and I later found out she threw out his medication).
Falls-yes (2, one whilst walking and one out of bed).
Sleep disorder-yes.

Lewy Body Dementia is the diagnosis.

She asks about B12 shots, (she has gathered all Dad's medical history). I told her GP did blood tests and said they were ok.
She orders more blood tests. No he also has pernicious anemia.

I take Dad back to GP, I am furious. He gets out Dad's history. He knew of deficiency from 2005 tests done by neuroscientist and Mum knew. Mum didn't tell me. After many tears in Dr's we resolve the chain of events, he admitted 'saying his clinic was part responsible for allowing Dad to slip through the cracks'. He also showed me the blood test results he had from his test. They showed that Dad's red blood cell count (if I remember correctly, the points involved) was just over and he explained that it was a progressive disorder. I had read so much info about pernicious anemia and that now literature showed that this reading/level could mask the underlying condition. (as I said this is from recall and if not correct it is something along those lines)
Dad begins his weekly B12 shots. He now has monthly shots.

The B12 episode was the hardest and saddest time of utter disbelief for me. I find it difficult to think of that time. I remember shutting down emotionally, numb, blank. This was too much to cope with.

Mum's illness takes precedent over everything else.

2008-12-11T15:19:00.000+11:00

I am trying to outline the journey so far. Then I can write about the present.

In 2005 I took Dad to see a Neuroscientist. After the consultation, the Neuroscientist phoned the house whilst Dad and I were out doing messages. When we arrived home Mum said she had received a phone call from the Neuroscientist. She told us there was nothing wrong with Dad. Mum lied. Why did Mum lie? Denial, shock; perhaps. Mum had a strange attitude concerning mental illnesses. She thought people could control their thoughts, behaviours...mind over matter. Perhaps she thought it best if Dad didn't know, that this in someway would help.
I found out by chance the following year about the Neuroscientist's diagnosis. It was when Mum was in hospital that I took my daughter to our local family Dr and he asked how Dad was doing. He said your Father's Alzheimers must be getting on. I was in shock, even though I knew he had some form of dementia, I knew Mum had lied because he said he had received the diagnosis from the Neuroscientist, the year before. Mum had just come out of intensive care, had a tracheotomy, muscle atrophy. Couldn't talk or move. Certainly wasn't the time to confront her. As Mum became stronger my cousin and I talked about Dad and his Alzheimers as a given. Later when she was strong and could talk and move, my cousin had a chat with her. Mum said she would never be able to cope with Dad's declining state. I never confronted her...it wouldn't have changed anything.
At this stage Dad was still functioning quite well. Considering the stress he was under and being extremely tired he could still follow the same path through the hospital to where Mum was. However, if Mum was moved he couldn't follow instructions of how to get there.
Looking back now I think I was on auto-pilot. Mum was very sick. Dad was slightly confused, not fully understanding Mum's illness. My daughter had a lump on her spine. My younger brother had had episodes of anger at the hospital and I was the brunt of his anger. Oh and the dog was sick, leave hospital got to vet, pick up dog, go back to hospital.
The lump, on my daughters spine turned out (thank goodness) to be a sebaceous cyst.
Upon reflection I don't know how I managed.

Dad's Lewy Diagnosis.

2008-12-11T14:38:00.001+11:00

It was my eldest daughter who first noticed something wasn't quite right with her Pa. It would have been 2003. She noticed Dad's driving had changed. I put it down to him just getting older plus she is an extremely nervous passenger. It was 12 months later that the changes seemed significant to be of a concern. It was Dad's braking time. He was leaving it later than his normal to brake coming up behind stationary cars at traffic lights. At this stage it wasn't dangerous but bordering on reckless much the same as some young male drivers. No screeching tyres but there was a change. It was around this time that Dad also had trouble using an ATM. This infuriated Mum because it was only occasionally that it happened. To her, it seemed it only happened when she wanted to do something. At that stage Dad didn't have a diagnosis of Lewy Body Dementia. Mum wasn't aware of the fluctuations associated with Lewy. She often accused Dad of 'doing it on purpose just to get at her'. It was a sad time. Mum had really bad Rheumatoid Arthritis and Dad was caring for her.
In 2004 I returned to the family home. Taking Mum to Dr's, grocery shopping, gardening with her etc. Dad willingly gave up driving, saying he wasn't comfortable driving anymore. He did not want to hurt other users of the roads.

Introducing Dad.

2008-12-11T13:05:00.000+11:00

Dad is 75 and has Lewy Body Dementia and Alzheimers. I'm not going to reveal his identity because he has always been a very private, quiet man and I don't think he would like his life displayed.
Dad has 3 children. I'm the eldest and only daughter. I am Dad's sole carer.
Mum passed away last year, aged 67, from COPD. I was also Mum's carer for her last 2 years. Mum's illness included 2 months in intensive care, months in hospital and months in rehab. I took Dad to the hospital everyday. For a period of 6 weeks during the suctioning stage, I stayed overnight with Mum. My youngest daughter minded Dad and brought him to the hospital each day.
Also living with us is one of my brothers who suffers from mild Aspergers. It was a very difficult time for him whilst Mum was so sick and after Mum passed away for him as Mum had always cared for him. He experienced great degrees of anger which did not help Dad with his illness and grief. Things have settled down a lot and my brother is now coping well.
I have 2 adult daughters, one married and studying and my youngest is at Uni.

I have a wonderful cousin who was my rock throughout Mum's illness, through decision's of resuscitation and intubation (twice). I can never thank her enough.

That's us in a nutshell. An introduction to my world.