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.

Tuesday, October 27, 2009

Changes in Dad and I'm angry with Brothers.

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.

Thursday, October 22, 2009

Decision made.

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.

Friday, October 16, 2009

Hopefully Geriatrician can help.

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.

Tuesday, October 6, 2009

Respite extended.

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.