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Hello I'M Sue - Carers UK Forum

Hello I'M Sue

Tell us a bit about yourself here.
I am sue and a carer for my husband who has alzheimers and is 80 years old. He is on Memantine and has been reasonably ok, I think they are helping. He is taking to his bed for most of the day lately even though I do all sorts to tempt him out. He was diagnosed last October, and although he looks well he has severe difficulty with walking and balance. Perhaps because he spends so long sat and in bed. I am wondering whether to have someone come in who would make him move, he won't for me. He sleeps about 16 to 18 hours a day. Sue
Hi Sue welcome to the forum, can't help with your problem with your husband. As caring for son who also needs incouragment to do things, this does seem to work better with someone from out side. Can only send you hugs. Have you had a carers assement may help you to get more support.
Hello Sue, and welcome :)
Welcome to the forum Sue from another Sue :)

I cared for my Mum until she died in March 2012 - she too had Alzheimer's. Taking to their beds seems a common problem with Alzheimer's patients, partly I think it's down to boredom and partly due to the loss of mobility that also seems to comes with the disease.

Boredom because as the disease progresses they lose the ability to do things that they used to do with ease and their world starts to 'shrink'; plus what they now see of the world they often find scary and bed is a 'safe' place to be. As Mum's dementia progressed she spent more and more time sleeping (but unfortunately not at night :shock: ) and getting her interested in anything long enough to stay awake was sometimes hard work. Taking her out for short walks (I say 'walks' but actually she needed a wheelchair) worked, as did going for a drive and stopping off for coffee at the local garden centre.

If you feel that the main reason for your husband's continual sleeping is down to his mobility issues then it might be helpful to get your GP to refer him for some physiotherapy - as Shazi has said often when our carees won't do things for us they will do them for an outsider.
Welcome to the forum. Are you in touch with the Alzheimers Society? I've heard they can be very helpful. I hope you've been told that people with "severe mental impairment" are exempt from Council Tax.
Hi Sue,

I care for my mom who spends a lot of time in bed. It is not that she isnt mobile, she can do it if she needs to. Between me and my hubby, we have tried so many different things to get her involved but she doesnt have the interest unless it is something that she specifically requires.

If we suggest something, we find she accuses us of "bullying" her into doing something (bullying is the phrase she uses when she doesnt want to do the activity we suggest), I have found however that if someone else suggests doing something she is definitely more likely to do it. We now just let her do her own thing and let the OT and support worker make the suggestions.
Hello, Sue, you've found a good place here, with lots of sympathy and quite a lot of collective experience and resulting 'unofficial expertise'.

It must be extremely distressing for you to have your husband's diagnosis - all too common these days, alas.

Please read what I say now with great caution, as I have no experience of dealing with someone with that level of dementia. However, I do know what it is to have a severely ill husband - cancer in my case - and the intense worry and grief it brings.

Have you been able to have any conversation with your husband's doctor about likely prognosis? Do you have any idea of what is likely to happen in the next months, years to come? The reason I ask is this. IF - and of course it's a huge, huge if - if his doctor believes that the likely outcome is continual decline, leading eventually to death (over what timeframe?), with increasing and potentially even more distressing loss of cognitive capability on his part, is there possibly a case for saying that 'sleep' is a balm to your husband? Does it give him an 'escape' from his decaying consciousness, and if that is so, would it be kinder to let him sleep as much as he wants?

I do appreciate that may not be so at all, and that 'rousing him' or 'engaging him' back with the world is a much better way forward for both him, and for yourself. I also do appreciate the physical impact of so much bedriddenness may well be painful pressure sores, and so should be avoided simply for that reason if nothing else.

But, and this is where I come in from my own experience of severe ill health in a spouse, when my husband reached endstage, and slipped increasingly into a sleep that only 'took over' more and more, until he was 'unrousable' and all but unconscious (the cancer had spread to his brain by then), I finally (and it took a long time) accepted that I HAD to 'let him go' - that to try and 'keep him with me' was too cruel, too harsh, and that his poor body and brain were simply too 'stricken'.

I completely appreciate that dementia is not cancer, or vice versa, but the gradual absorption of the concscious mind into the illness consuming it, is similar perhaps.

'Letting go' is incredibly hard, desperately painful, a sword in the heart, but sometimes, that is what is best for the patient.

All of what I've said may well be absolutely nothing like what you and your husband are going through, in which case discount it completely.

I leave you though with one of the most comforting of Shakespeare quote -

"Sweet sleep, that knits up the ravelled sleave of care - "

Kindest wishes to you at such a distressing time in your life. Jenny
Hi sue, you are right that decreasing mobility and increasing sleep are a symptom of Alzheimer's, but there are other things that can cause this, so if you are concerned it might be a good idea to have a word with your GP in case anything else is going on
At this stage he could potentially live for several more years, so you should really think about quality of life. Getting someone in- even for a cup of tea and a chat - regularly would help stimulate him and may well get him up.