Atypical behaviour. Advice needed

[Pinkys]

You My MiL has been in residential care for nearly 8 months. Her days are all identical. She gets up and dressed, walks around for a little while, and then gets undressed and goes back to bed. She stays in bed all day, watching TV, emerging from her room to ask about her mealtimes. This is like her routine at home, but she would be dressed in the sitting room watching TV. The staff and various assessors report she is calm and content, which we believe.

We had expected she would be starting to engage with the care home life by now! But no. It is her choice of course, and I accept the staff have to allow that. Her personal hygiene is a bit hit and miss. She finds conversation very hard, and shows no interest in visitors, to the extent that she sends them away, after as little as 3 minutes. Literally.

All she ever says, is 'are you coming next week?' And then insists we write it in the diary. Obviously she has no understanding of how the diary really works, and is always on the wrong week or day. She says we must bring the car to take her home, but shows no agitation when we say 'Not today'.

In other words her life is tiny, 'confined' to one bare room (has refused any things, pictures etc, has all her clothes permanently packed), does not read, talk to any one, join in anything) From the outside, it looks awful. We struggle to make sense of her condition. All the books I have read describe different kinds of dementia.

Questions. Is this familiar to anyone? And does anyone have any advice for us?

 

[loveahug]

Hi Pinky, this behaviour is so difficult to deal with. Mum would be like yours if given the choice but somehow the care staff get her out of her room most days. Quite often I turn up to see her and she is sitting on the edge of her bed, staring into space in silence.

She's had no interest in us putting up photo's or having her own things with her. I think it's part of not wanting to be a nuisance but she says she's quite happy, except she'd prefer to be at home. We are lucky that the staff manage to get her out to the lounge and dining room by saying they don't have the staff to wait on her so she'd better come along. She's not realised it would be quicker for them if they just took her food in to her as it can take them a good 20 minutes to get her to move out of the room! there is also the possibility that she feels safer enclosed within those 4 walls. I do think it's part of the dementia that initiative has disappeared and choices are impossible as the reasoning no longer exists.

My heart goes out to you, we drive ourselve nuts as it becomes impossible to try and identify the root cause of any behaviour when we already know the answer, it's the dementia messing up her brain!

Hugs x

 

[Pear trees]

This behaviour is not atypical. My mum still lives in her own home but as lost all interest in everything except her lunch club and food. On days she does not go out she stays in bed or sits watching TV all day. We visit regularly and wash and change her clothes, otherwise she would not do it. She has never had family photos up and has never taken any interest in grandchildren, and has never read much or done puzzles etc. We visit regularly but she is never pleased to see us and tells us to go almost immediately. The GP says she is not depressed and she does seem happy in her own little world. As long as she is warm, clean, fed and still going her lunch club we let her be.

 

[Witzend]

I'm sorry you have this worry. My mother was not quite the same, in that she did not stay in bed, but she never really engaged with care home life - hardly talked to anyone, didn't really like the activities, and would only go if pushed. She would wander about quite a lot, too. I used to see (some) other residents enjoying things and making friends with each other, happily chatting a lot, and would wonder why she couldn't be more like that, but then she had never been a sociable type - she was generally a very private person, and I suppose it was no use hoping for a personality change just because she had dementia.
At home all she would ever do was sit and watch TV - everything else I ever tried was met with, 'I can't be bothered.' But I think her poor brain probably couldn't cope with anything more demanding.

Obviously it would be better for your mother's physical health if she were up and about more, but while they can encourage, they can't force her. To be honest, I don't think this is all that uncommon - until recently I had been visiting assorted care homes for many years (mother, FIL and an aunt), and if she is calm and content most of the time this is IMO a lot to be thankful for. I have seen so many people endlessly upset or agitated, endlessly wanting to go home, or endlessly worried that their long dead mother didn't know where they were, or endlessly wanting to 'go downstairs to see Mummy', etc.

I have read that some people with dementia stay in bed a lot because that is where they are warm and most comfortable, and where they feel safe, and if they are no longer able to enjoy activities, or just don't want to do them, and don't know what else to do with themselves, I suppose it's understandable. I have a friend whose mother with dementia was living with her - she would hardly ever get out of bed - just stayed there with the TV on, but she did seem quite contented with that.
Sorry, I don't suppose this has been much help!

 

[blueboy]

My Mum is the same - just sits all day apart from mealtimes when she gets Meals on Wheels. She wouldn't wash or change clothes if she didn't have carers going in. I visit most days but she never seems bothered when I leave and seems content with her lot. Should be grateful really when I read about challenging behaviours on here.

 

[Pinkys]

Thank you all SOOOOO much. It is so helpful to hear from other people faced with something similar. And indeed, better this way of being than the very distressed and distressing behaviours.
We have to keep our eye on the bigger picture. She is safe (no longer 'playing with the traffic), fed, warm and watched over. I am sure you are right, security and lack of choice suit her well. And also, she was less and less interested in socialising of any sort, for the last 2 or 3 years. We had been sent away after 40 minutes, following a 2 hour drive to visit her at home. At least she is nearby now. We just have to change our expectations and manage our sadness.

 

[Azay28]

Sounds familiar

I'm sorry you have this worry. My mother was not quite the same, in that she did not stay in bed, but she never really engaged with care home life - hardly talked to anyone, didn't really like the activities, and would only go if pushed. She would wander about quite a lot, too. I used to see (some) other residents enjoying things and making friends with each other, happily chatting a lot, and would wonder why she couldn't be more like that, but then she had never been a sociable type - she was generally a very private person, and I suppose it was no use hoping for a personality change just because she had dementia.
At home all she would ever do was sit and watch TV - everything else I ever tried was met with, 'I can't be bothered.' But I think her poor brain probably couldn't cope with anything more demanding.

Obviously it would be better for your mother's physical health if she were up and about more, but while they can encourage, they can't force her. To be honest, I don't think this is all that uncommon - until recently I had been visiting assorted care homes for many years (mother, FIL and an aunt), and if she is calm and content most of the time this is IMO a lot to be thankful for. I have seen so many people endlessly upset or agitated, endlessly wanting to go home, or endlessly worried that their long dead mother didn't know where they were, or endlessly wanting to 'go downstairs to see Mummy', etc.

I have read that some people with dementia stay in bed a lot because that is where they are warm and most comfortable, and where they feel safe, and if they are no longer able to enjoy activities, or just don't want to do them, and don't know what else to do with themselves, I suppose it's understandable. I have a friend whose mother with dementia was living with her - she would hardly ever get out of bed - just stayed there with the TV on, but she did seem quite contented with that.
Sorry, I don't suppose this has been much help!

Gosh this sounds so familiar. I've been having difficulty on the one hand thinking I should be doing more to encourage regular behaviour but the logical side of me realises this is the pattern of dementia that Mum is following and it's not a deliberate act. Mm tends to spend a lot of time in bed not getting up till lunch time, listens to radio and watches tv in evenings. However I do find her just sitting there most days not reading so much now or doing the puzzle books as much. If she is having a good day she still reads the paper and goes to the shops although that seems to be happening less often at the moment. If she feels warm and safer in bed then I guess so be it, hadn't thought of it that way.

 

[Grable]

This is ringing bells with me, too. Although Mum is, as mentioned in another post, going on holiday in a weeek's time, it's the devil's own job to get her out of the house or even to phone anybody these days. I thought it might be that she's lost confidence, so have been trying to reintroduce her to society - but it could just be her dementia taking further hold.