Sunday, December 27, 2009

Christmas Day

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.

Tuesday, November 17, 2009

Very happy with care facility

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.

Tuesday, November 10, 2009

Adjustments for Dad and me.

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 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.

Monday, November 2, 2009

3 days left at home.

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.

Sunday, November 1, 2009

Dad's last few days at home

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 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.

Friday, October 30, 2009

When doing the right thing breaks your heart

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.

Thursday, October 29, 2009

Dad was assessed.

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.