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.

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.

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.

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.

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.

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

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

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.