A new decline

[White Rose]

Well, big sigh, I suppose it's another decline, I so wish we just knew what to expect and could act accordingly. Lately my partner has been waking early, sometimes in a very angry mood, one morning he smashed his fist on the mattress, he's very agitated, huffing and puffing like a train. He has not got out of bed and dressed himself for a very long time - so he'll lie there tossing and turning, scratching, checking his clothes are there, asking what to do, if I say 'go back to sleep' he'll say 'how long'. Eventually I have to give up trying to sleep and get up and then he'll meekly get up and I help him get dressed. How long will this stage last I wonder?
Then yesterday he had trouble getting down the stairs and more or less came down on his bottom. Later in the day he seemed not to be walking properly, the left leg wasn't being put in front of the right leg and he was bent to one side. Later, in the evening he was leaning to one side quite alarmingly. So again, is this progression of the disease or something else?
Has anyone experienced these particular symptoms?
Thank you.

 

[canary]

A common cause of leaning to one side is constipation. Is your husband constipated?
Its also quite common with LBD

 

[Grannie G]

Constipation, a UTI or any form of symptomless infection could be responsible for these changes @White Rose. If he is diabetic it could be uncontrolled blood sugars.

I hope you have some chance of medical advice which might either provide antibiotics or ease your mind.

 

[White Rose]

Thank you @canary and @Grannie G , he's not constipated, goes often! He had his urine tested on 3rd March and was fine, maybe a UTI could have developed since then? He's not diabetic to my knowledge. If he doesn't improve I'll have to try and speak to GP, just have to monitor him over next couple of days.

 

[jenniferjean]

He has not got out of bed and dressed himself for a very long time - so he'll lie there tossing and turning, scratching, checking his clothes are there, asking what to do, if I say 'go back to sleep' he'll say 'how long'. Eventually I have to give up trying to sleep and get up and then he'll meekly get up and I help him get dressed. How long will this stage last I wonder?

My husband sometimes wakes at about 3 or 4 needing the toilet. Then, as he has no idea of time, he'll start to get dressed. Actually his 'getting dressed', even when it is time to get up, consists of arranging his clothes on the bed. What I hear is "there's my t-shirt Jim, there's my trousers Jim, there's my socks Jim, there's my t-shirt Jim, there's my trousers Jim" over and over and over. While he's doing this he is picking up each thing and laying it on the bed. I can actually get up and go and shower and when I get back he's still doing it. At least I know where he'll be and I don't have to rush out of the shower which was what I was previously having to do.
But I am lucky (so far) that there is little or no anger. If it's too early I pick up his clothes and put them back on his chair. I then tell him to go back to bed and to sleep. He'll say "I'll try", but like you he'll just toss and turn and after a while I have to give up trying to sleep.
It was your mention of 'checking his clothes' that drew my attention as I wondered if it was anything like what my husband does.

 

[Kim1962]

Thank you @canary and @Grannie G , he's not constipated, goes often! He had his urine tested on 3rd March and was fine, maybe a UTI could have developed since then? He's not diabetic to my knowledge. If he doesn't improve I'll have to try and speak to GP, just have to monitor him over next couple of days.

Hi. My dad is the same his walking has got very poor cannot walk without being aided he has a zimmer but refuses to use it. Sumtimes it's like he's walking on the spot and doesn't know how to walk ? iv noticed last week him leaning over to the side a lot he's not constipated and doesn't have a uti. His sleeping goes from Up all night very agitated and confused.... He was only diagnosed last October with Lewis body dementia but has gone down very quickly ? he's on rigvadti9pstchrs and on second week of mementine. And one else looking after a parent or spouse are on both theses medications... I'm just new to this and any recommendations about anything would be so helpful. Ie about when he gets nasty n bit aggfrsd8whst do I do? Or when he gets so depressed and cries sore whst do I do.....
Thanks
Kim

 

[canary]

Hi @Kim1962 and welcome to DTP
The walking on the spot, where they lift their feet up and down, but they dont move forwards and the lean to one side (in the absence of constipation) are both characteristic of LBD.

The aggression and nastiness is difficult to deal with, but you might find this thread helpful

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

 

[White Rose]

Hi. My dad is the same his walking has got very poor cannot walk without being aided he has a zimmer but refuses to use it. Sumtimes it's like he's walking on the spot and doesn't know how to walk ? iv noticed last week him leaning over to the side a lot he's not constipated and doesn't have a uti. His sleeping goes from Up all night very agitated and confused.... He was only diagnosed last October with Lewis body dementia but has gone down very quickly ? he's on rigvadti9pstchrs and on second week of mementine. And one else looking after a parent or spouse are on both theses medications... I'm just new to this and any recommendations about anything would be so helpful. Ie about when he gets nasty n bit aggfrsd8whst do I do? Or when he gets so depressed and cries sore whst do I do.....
Thanks
Kim

Good luck Kim, it's very hard dealing with all this alone, I hope you have some help. My partner has been on Donepezil for just over 4 years.

 

[White Rose]

My husband sometimes wakes at about 3 or 4 needing the toilet. Then, as he has no idea of time, he'll start to get dressed. Actually his 'getting dressed', even when it is time to get up, consists of arranging his clothes on the bed. What I hear is "there's my t-shirt Jim, there's my trousers Jim, there's my socks Jim, there's my t-shirt Jim, there's my trousers Jim" over and over and over. While he's doing this he is picking up each thing and laying it on the bed. I can actually get up and go and shower and when I get back he's still doing it. At least I know where he'll be and I don't have to rush out of the shower which was what I was previously having to do.
But I am lucky (so far) that there is little or no anger. If it's too early I pick up his clothes and put them back on his chair. I then tell him to go back to bed and to sleep. He'll say "I'll try", but like you he'll just toss and turn and after a while I have to give up trying to sleep.
It was your mention of 'checking his clothes' that drew my attention as I wondered if it was anything like what my husband does.

Sorry but had to laugh, just so funny the way you've written it! Checking his clothes in my partner's case is pulling them off the floor towards him!

 

[Bunpoots]

I'd been wondering if Jim was still around @jenniferjean ..

 

[Thethirdmrsc]

My OH slaps himself on the head in the middle of the night in frustration. He gets up between 2-5 times a night, sometimes cause he thinks he’s wet himself. Last night he used his clock which has a light on it for like 2 seconds, to find his way(despite the night light) then went back cause he left it in the bathroom. And I lay silently screaming. I now lay his clothes out, and try and get the dirty ones in the wash before he sees them. He also smells like sour milk. I laid out his towel to have a shower today, and within 5 mins he was dressed, albeit in clean clothes. It’s the new normal.

 

[Vitesse]

just read your post, and the aggression /distress is very familiar. My husband has phases exactly the same. It reached a peak sometime last year, when he would be thumping the bed, and crying out on anger. The doctor told me to increase the doses of Risperidone to three per day and prescribed Mirtazapine. Generally, things became better. His walking has become more of a shuffle, but that seems a side effect of Risperidone, and its the lesser of two evils.
In January, he seemed to be sleeping far more than usual during the day, so he had a blood test which showed various deficiencies, one of which was sodium, and the doctor took him off Mirtazipine. He started waking up early in the morning and now the distress and aggression are returning. He’s back worrying about his finances, wanting to go to the bank, hearing voices and all this while I’m trying to keep sane with this impending lockdown!!!

 

[jenniferjean]

I'd been wondering if Jim was still around @jenniferjean ..

Yes he's still around, whoever he is. Although I'm beginning to think that he's not a person, more a form of punctuation.

 

[White Rose]

The waking up in anger has stopped for the time being and I'm trying to get him to rest more, his leaning doesn't seem too bad now. He does have terrible mood swings though, hates anyone coming into the house, even the carers that he should be used to, swears and gets angry. Muttering through all TV progs in the evening is driving me nuts - of course he finds it boring just sitting as he can't follow the program and I suspect he can't even see it properly. I put a DVD on the other day and he fell asleep in front of it. Showering this morning was interesting - I put shampoo on his head and gave him the soap for his body but he put soap on his head as well - whether any soap went on his body I don't know as I had to escape in exasperation and leave him too it!

 

[jenniferjean]

Showering this morning was interesting - I put shampoo on his head and gave him the soap for his body but he put soap on his head as well - whether any soap went on his body I don't know as I had to escape in exasperation and leave him too it!

It's a good job my husband doesn't have much hair. As soon as I put shampoo on his head he is washing it away under the shower before I've had chance to actually wash his hair.