Memory impaired, restricted by arthritis and bored

[Chloe]

Hi

I have found it very useful and supportive reading the messages of site users and it has helped me a great deal in putting the experiences of my family in some sort of perspective. It really helps to know that other people have visited what sometimes feels like some strange unexplored planet. This is not a big problem but if anyone has any suggestions I would be very grateful.

My grandmother has an undiagnosed memory/intellectual impairment. She also has severe arthritis in her hands and in her spine, affecting her mobility. Two months ago she moved in with my mother, having "managed" independently for some time, eventually with a great deal of support from Social Services. My mother has managed to establish a daily routine for my grandmother with the result that she seems to be feeling a lot better - at first, she just slept all the time but now much less. The trouble is, when awake (apart from during Emmerdale etc) she has nothing much she can do. She is more or less restricted to her room because of her mobility. She is no longer able to read (she can read words but the sense often evades her). She has never been a knitter and in any case could not do this because of her hands. This also means she can't write to her friends - she can just about sign her name (and recently has been unsure about the spelling). She looks out of the window but often becomes anxious about what she sees - whether "a big dog" will jump over the fence and attack the little girl next door, or whether my mother should be taking the washing in, or why there are so many houses... She also seems to be restless at night, usually just pacing about but occasionally taking a torch and moving about in the house - this is worrying because she has a history of falls. I think she is restless because she is bored. She refuses to go to a day centre (probably because she is worried about incontinence). I have been reading various books which recommend finding a person something to do like folding towels etc, but none of these things are physically possible for her. She used to enjoy looking through photographs but now can fail to recognise people, which annoys her. I don't mean to sound so negative! The thing is I have been racking my brains trying to think of something she could occupy herself with which she would find meaningful and which would not impose any extra burden on my mother - and I have drawn a blank. Has anyone any ideas about this?

Chloe

 

[Brucie]

Hello Chloe

I know how frustrating it can be in such a situation!

My first thought is music. Was your grandmother ever very keen on any kind of music?

I know a good friend's mother who had Alzheimer's would be kept entertained by listening to a looping tape of Everly Brothers music.

Radio might also be a possibility.

You don't say how badly impaired she is - would talking books be beyond her?

Since you mention she watches Emmerdale, would a video or DVD player work?

All these suggestions may be totally useless, but one has to start somewhere!

By the way, the reluctance to go to a day centre could simply be an issue of moving out of her comfort zone. If she has ever been to the day centre, then she may simply wonder why she is being left there with so many old people. [the norm is to feel one is both younger than they are, and perfectly well]

Last point - you are not being negative! You are simply telling it like it is, and that is such an important step....to recognise there is a problem means you can start to look for a [temporary] solution.

Best wishes,

 

[Chloe]

Thanks for replying Bruce. I have thought about music. I have never known her to sit and listen to records but she does sometimes have the radio on. A couple of years ago I tried to get her interested in a CD player - I brought her a walkman, just to show her how they worked - but she dismissed it - I can see now that it was because she knew she would not be able to operate it. Looking back we can see that she began having problems far earlier than we initially imagined - she has been very good at covering and we put all the problems she was having down to the progress of her arthritis - and she was very firm about wanting to do things her own way without interference, and who wouldn't feel the same? It seemed a very sane and rational response. However, I am sure she has forgotten all about the walkman now and as she is not living on her own and my mum could turn it on for her it might be an idea. She used to love to go to musicals and it might help her to go to sleep at night when she has finished with the telly.

I expect as things progress she will be able to find pleasure in things like soft toys and so on that I see other people have mentioned, but at the moment would certainly find toys insulting. I am afraid you are right about the day centre - when a figure in authority - a doctor or social worker - brings it up she says she will certainly consider it, or that she is not really a joiner, but to us says that she won't go to a place like that - meaning, as you say, a place full of old people - the idea of old age terrifies her (she is 90). Besides this it is very hard for my mother to persuade her to wash, and she can't insist as she knows she is in pain a lot of the time. Sorry to go on and on! but I must say this site is very good for getting things clear in one's mind - I looked at my earlier posting - how could it be the case that she can't leave her room AND that she roams around at night? but it is true, both that she stays in her room in the day and that she wanders at night. So it is not entirely about her mobility. Somehow it sinks in better when you see it written down - one has this idea in the back of one's mind ( I can't be the only one) that maybe there is really something else going on, some kidney problem undiagnosed despite all the blood tests etc. But. She is safe now, or a lot safer than she was anyway, and surrounded by all her familiar things and considering all, not in bad health. I do realise, when I read other postings and when I think how anxious we were when she still lived "independently" that the position is not that bad at all - it was good of you to take time to reply.

 

[Brucie]

One of the first signs - though we are probably not at that stage attuned to recognise it - of dementia is a reluctance or inability to learn new things. For my wife, it was using a computer mouse. She had used computers for years, but the need to use a mouse totally flummoxed her. She simply said to me that she didn't want to use it.

I think it is probably common to see in retrospect signs that we could not interpret at an earlier time. Dementia doesn't just arrive one day like an unwelcome tax return. It is more like recurring junk mail, only we can't dispose of it.

A ghetto blaster might be more appropriate that a walkman now? Though it may be overoptimistic to expect her to operate it. Perhaps it can be on most of the time if that doesn't annoy her - watch the volume levels though. I find Jan's care home has music volume far too loud as if they think everyone there is fully deaf.

Jan never did go for soft toys per se, though I did take in an enormous one - Bradley Bear - to cushion her falls against hard walls. I have attached a picture - I'm leaning on the bear as I visit Jan in the soft, highly padded room where she crawls.

Some friends have criticised me for taking pictures of Jan as her condition has progressed. Tough! Jan is Jan and I want to remember her as she is, not as I would have her, or as she was in the past. Her courage now astounds me, daily. Only if one accepts the present state as the new norm, can one fully help them, day to day.

Washing while at home was a huge, huge problem and in the end, I had to accept that she wouldn't. It is a major relief that at her home, she is showered or bathed daily.

Writing stuff down - yes,yes, yes! It does help clear one's mind, doesn't it. I often look at something I have written here and think 'I hadn't thought of it that way before'.

I don't think we ever get away from the hope that there is something we don't yet know that underlies the condition and that if we can only identify it, everything will be all right again. Hope springs eternal, and if it helps in some way, then why not? Any port in a storm!

Best of luck for the future days!

 

[karen_white]

Your attitude is a breath of fresh air Bruce. What a lovely photo.
When we managed to get Dad out - if only in his chair to the coffee shop by the home, I try and remember to bring the video camera with me.
We still have photos taken with him and try to have as 'normal' time with him as possible. We're even arranging a small family meal at the pub closest to Dad for his wedding anniversary this summer. They were great last year and made sure we had good access for his chair... we had lots of room ... and were in part of the pub that was most quiet so Dad would get frustrated. We videoed the whole afternoon. It was lovely.

Dad will always be Dad, it's just that his VD is blocking him from coming out and we only see his old self occasionally. If ever nowadays. Can't remember the last time....

I'm looking forward to the summer bbq at Dad's home so that we can all have a bit of a party (residents, family and nurses a like). I know in years to come it will bring lots of comfort to me to have shared the new part of Dad's life he's living at the moment.

I agree that music can be a difficult one. Dad was always the life and sole in the party and always chatting to people. He now sits a quiet room in the home with a couple of others, as he can't stand noise. Even with a couple of people going to visit we have to watch our noise level and music confuses Dad and he gets very upset.

Why is it that people think that if you have a form of dementia, you must be deaf! I've been shocked how close to Dad's face the nurses get when they speak to him. I think I'd get angry if someone invaded my space like that - whether I had dementia or not! Also, shouting at them doesn't make them any more co-orperative.
Sorry about that - needed a rant about it. Really upsets me sometimes.

Chloe, I hope that your Grandmother settles soon.
Take care all

 

[Chloe]

Thanks for the support and Bruce thanks for the photograph. It is lovely. I do hope that as more insight into dementia is gained, we will understand more about emotional states of mind which will make it easier for all of us, those experiencing dementia and their carers, to live with this fact of life. As communication becomes more difficult, one is prone to imagine the condition as a continual hell or just a sort of flickering blank. Yet we know that dementia sufferers do smile and laugh - experience happiness in fact - and I think that you are so right to affirm this. I don't think I am expressing myself very well - I suppose what I mean is that communication probably takes on another form? For example, I have realised while posting these messages that my grandmother seems so much happier and more relaxed now that there is somebody always there and she is relieved of anxiety about her day to day existence, even if she does mutter that she can perfectly well do her own washing etc - perhaps these mutterings are just a sort of verbal tic? Reading on a non-verbal level, seeing that she is happier in her general aspect, relieves me of the fear that she is full of resentment towards us for interfering drastically and against her expressed wishes which we have had to do more and more up to the point of depriving her of her own home. But certainly she shows every sign of "settling" now, and as she relaxes will perhaps become less critical of my mother, who is bearing the brunt of everything (they live in another city, another country in fact). Blathering again, but it is so good to know that there are people who know what you mean.

Take care all and many thanks

Chloe

 

[Brucie]

Hello Chloe

you say "communication probably takes on another form" and I believe you are quite correct.

They say that when a person has no sight, other senses are heightened above the normal. I think the same happens for people who engage regularly at the closest level with their relatives who have dementia. We find a range of other ways to communicate and relate, and that is both to our benefit and to our relative's benefit.

Regards

 

[Nutty Nan]

Dear Chloe, Bruce, et al,
How we identify with each others' thoughts, and how reassuring it is to see the similarities.
Your point about "engaging regularly (at the closest legvel) with relatives who have dementia" is such an important one: regular contact is the only way of learning to enter the world of the 'patient', and of creating some common ground, which can be 're-visited' again and again.
As for the huge problem of boredom (which inevitably leads to frustration, depression, lack of self-worth, and many other problems): this is one of my biggest challenges as a carer, especially as I find it so difficult to 'invent' tasks which my husband is likely to 'achieve', and which will, therefore, give him a positive experience. This may well be because even I am unable to enter his world enough. For me, a job has to have a purpose. The purpose my husband is looking for is often quite different to mine!
Examples: re-arranging music tapes for the umpteenth time gives him a sense of achievement. The same applies to chopping garden rubbish into 1-centimetre-bits (he is the best shredder ever!). I felt enormously guilty at asking him to pick up weeds, which I had thrown on the lawn, and putting them in a box to dispose of (it would have been just as quick for me to put them in the box in the first place) - but all this makes him feel needed, involved and valued.
One of the hardest things I have had to learn over the last few years (and I am still learning now) is that for my husband's sake, I have to overcome my own feelings and instincts - it does not work the other way round!
The other important part is to make a big fuss about the achievements (shreddingt rubbish, wiping dishes, etc. etc.)!
Thanks for all your posts - they are such a help to all!
Carmen

 

[Geraldine]

Hello

I found the problem of keeping Mum occupied while she was at home with us was one of the biggest challenges I faced. Because of the absence of short term memory we could have a really full day, out for lunch, a little gardening, a chat with a neighbour but by the evening , when I was exhausted ,Mum would still say she was bored because she never did anything. Some weeks she was out nearly every day and given her mobility problems this was no mean feat but it still was not enough. I think we as carers have to learn to accept that we can never do enough to help alleviate the problems of this terrible condition just do our best and learn to switich off for our own sanity. Eventually Mum went into care because everything became too much. I'm sorry to sound negative but I am sure that you are doing everything you posssibly can to help your Mum and sometimes we can do no more,

regards

geraldine

 

[Brucie]

Hi Geraldine

I like to think there's a difference between being negative, and being realistic. I believe that you and others in the forum, while perhaps sounding negative, are merely being realistic about a very difficult situation.

I don't know about you, but I *detest* people who have not been actively involved in this sort of care being - cheerful [aka unrealistically optimistic].

That's not to say there aren't good times, positive developments, etc. and we should savour those. What constitutes a good time or a positive development will change over time, as options reduce.

If I know the worst, then I can gain some sort of peace from anything that is better than that.

 

[Kerry-Jane]

Hi everyone. We found that a lot of my Mum's "sundowning" was possibly due to boredom. When we thought she was watching television it soon became obvious she wasn't taking anything in, nor was she able to concentrate on reading (the front page of a book was read continually all day). It was then suggested that we try a colouring book. We have got adult colouring books of orchids and garden birds which have now got the most amazing colourings - it has turned out my Mum has got quite an artistic bent to her. Perhaps people with arthritis could try large felt tips or paints. There are no rules in my mum's books and whatever she wants to do in them if fine with us.

With regards to photos we have started taking them all the time. Whilst we have our Mum we are going to enjoy her!! We have put them in a large photo album with written explanations next to each photo as to who is in them and what is happening. Relatives have started to send photos to us as well, both old and new which is good for us and Mum, a lot of them we haven't seen before! When Mum is feeling a bit tetchy or down - we get out the album and go through the pictures - often old stories come out we have not heard before or new ones made up - we don't mind, if she feels good we do too, she will often get the album out herself and enjoys taking the time to put the photos in herself.

Have you tried a scrap book - large enough to turn with ease and cut out news paper stories or photos from magazines that might be of interest and large enough to be picked up and stuck down with pritt stick (no mess).

 

[Chloe]

Thanks all for support and suggestions. Apparently my grandmother is now sleeping a lot again - she has had no change in medication or other external factors so we don't really know what is going on - perhaps the increased wakefulness and the alertness we thought we had discerned was one of those blips you apparently get with some sorts of dementia - they say this happens with the vascular type a lot don't they? But we have been thinking about ways to gradually introduce some new activity like music and will be ready when she is feeling more lively again.