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.

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 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.

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.