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.

Some sort of cusp

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

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.

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.

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.