Not coping with this...

[echo66]

I keep reading about people who were set against going into a care/nursing home but then once they'd been there for a while, settled in, made friends and generally accepted their new life as much as they could.

Well my Mum has been in a nursing home since October last year and is showing no signs of making friends, engaging, fitting in, doing anything that brings any enjoyment. I visit her every day and take stuff in for her to do/read/eat etc... but she is clearly so miserable.

Mum was diagnosed with mixed dementia at the end of 2016. In October 2018 Doctors said she didn't have capacity and Mum was transferred from hospital to a nursing home where she has been ever since. For the first week she had her things packed every night when I went to visit, thinking I'd come to take her home. Eventually she seemed to accept that she needed to stay there and things settled slightly, although every so often still asks why she can't go home. She understands it in the moment when I explain it to her, but of course doesn't retain the information, so will ask me again in a few days time. There are rare days when I think she is finally starting to accept this new situation, but then a random visit will find her full of anxiety, rocking, crying, having difficulty breathing (she also has COPD) and it takes ages to calm her down. I made sure she had a tv and radio in her room as she always watched/listened at home, but is convinced she will get into trouble if she has them on, no matter how much I try to encourage her to use them. She will do crosswords or number puzzles, browse through the newspaper when she remembers that she likes doing them - but otherwise just sits either in the chair or more often than not, on the edge of her bed every day, just staring into space or sleeping. She won't even leave her room for meals and rarely goes to the dining room and never to the communal lounge. She says she is bored and lonely but won't make any efforts to get to know the other residents. Her constant refrain is that she just wants to go home.

Having moved in with her for over a year until she became very ill and was hospitalised (while working full time and also caring for husband with health problems, plus having health problems of my own) - it isn't possible for me to become her full time carer, so a nursing home seemed the 'lesser of two evils' option. But the guilt is horrendous and while people try to assure me that I'm doing the right thing by her, it doesn't 'feel right' to me.

Logically I know she is cared for and in a safe place. Emotionally, I feel like I've committed the biggest betrayal in the world against the person I love the most. I don't have any other family to share this with. I know she is the one with dementia, but the situation is having an extremely detrimental effect on my mental health. I know I wouldn't be able to cope with looking after her in the state she is in, but am wondering if it's a decision I need to make in order to save us both. There is no knowing what 'stage' she is at, so we could be talking months or even years. I feel damned either way, whatever decision I make.

 

[Portia100874]

I keep reading about people who were set against going into a care/nursing home but then once they'd been there for a while, settled in, made friends and generally accepted their new life as much as they could.

Well my Mum has been in a nursing home since October last year and is showing no signs of making friends, engaging, fitting in, doing anything that brings any enjoyment. I visit her every day and take stuff in for her to do/read/eat etc... but she is clearly so miserable.

Mum was diagnosed with mixed dementia at the end of 2016. In October 2018 Doctors said she didn't have capacity and Mum was transferred from hospital to a nursing home where she has been ever since. For the first week she had her things packed every night when I went to visit, thinking I'd come to take her home. Eventually she seemed to accept that she needed to stay there and things settled slightly, although every so often still asks why she can't go home. She understands it in the moment when I explain it to her, but of course doesn't retain the information, so will ask me again in a few days time. There are rare days when I think she is finally starting to accept this new situation, but then a random visit will find her full of anxiety, rocking, crying, having difficulty breathing (she also has COPD) and it takes ages to calm her down. I made sure she had a tv and radio in her room as she always watched/listened at home, but is convinced she will get into trouble if she has them on, no matter how much I try to encourage her to use them. She will do crosswords or number puzzles, browse through the newspaper when she remembers that she likes doing them - but otherwise just sits either in the chair or more often than not, on the edge of her bed every day, just staring into space or sleeping. She won't even leave her room for meals and rarely goes to the dining room and never to the communal lounge. She says she is bored and lonely but won't make any efforts to get to know the other residents. Her constant refrain is that she just wants to go home.

Having moved in with her for over a year until she became very ill and was hospitalised (while working full time and also caring for husband with health problems, plus having health problems of my own) - it isn't possible for me to become her full time carer, so a nursing home seemed the 'lesser of two evils' option. But the guilt is horrendous and while people try to assure me that I'm doing the right thing by her, it doesn't 'feel right' to me.

Logically I know she is cared for and in a safe place. Emotionally, I feel like I've committed the biggest betrayal in the world against the person I love the most. I don't have any other family to share this with. I know she is the one with dementia, but the situation is having an extremely detrimental effect on my mental health. I know I wouldn't be able to cope with looking after her in the state she is in, but am wondering if it's a decision I need to make in order to save us both. There is no knowing what 'stage' she is at, so we could be talking months or even years. I feel damned either way, whatever decision I make.

 

[Portia100874]

I know exactly how you feel, my darling mum my best friend has been in a home for 18 months. It's a lovely home and the staff are lovely but I still feel so guilty. I'm.a single working mum so there is no way that I could give my mum the care that she needs myself. I feel very much that I have betrayed her too especially when I see her looking so lost and sad.

 

[marionq]

Is it possible that knowing you will come every day she has no incentive to make friends or changes? Could you try giving her space for the staff to encourage her to mix by going every second day then every third?

 

[Grannie G]

Hello @echo66

Logic tells you you have done the right thing for both you and your mother. Emotions are completely different.

However your mother`s health is deteriorating and by the sound of your post, so is yours, which is why you have had to make the decision for residential care.

There is no good or easy way to manage the situation which resulted in this difficult decision and heartbreaking though it is, there seems no alternative.

I doubt many people at this stage in their dementia are able to make friends when they go into residential care but it is a pity your mum is getting used to sitting in her own room.

When my husband went into residential care I asked that he should only use his room for sleep and that he should spend most of his time in the communal sitting room with others and go into the dining room for meals. He was unable to make friends and further down the line in his dementia than your mother seems to be but I do think its important to try to prevent isolation.

When you visit, do you think you could encourage your mum to leave her room and sit with you with others. It might help her.

 

[Spamar]

I was surprised when you said you have been in every day from the beginning. Homes around here discourage visitors for the first two weeks, allowing the pwd to settle and meet new people. As Marionq says, maybe stop visiting for a while, she is expecting you every day and will play up to that. But tell the home your intentions so they can be prepared!

 

[Louise7]

When you visit, do you think you could encourage your mum to leave her room and sit with you with others. It might help her.

I was just going to suggest the same thing. When visiting try suggesting that you want to go for a walk round, or to the lounge for a cup of tea or to watch TV. If you only stay in your Mum's room when visiting she may associate the room with you so it might help if you try going to other parts of the home. When visiting my Mum I always sit with her in the lounge, and I've got to know the other residents now so always say hello to them and give them a wave, even if some are not able to do the same back. If your Mum sees you socialising with others she may do the same. I would also agree with the comments about cutting down your visits for a while. I initially felt that I needed to go in every day but it wasn't helping me or Mum to settle in with a new routine so now I go every 2/3 days. Also, you mention that the situation is having a detrimental effect on your mental health. Please think about seeing your GP if things are getting difficult, and although it's not always easy, try to remain upbeat and positive when visiting as your Mum may be picking up on your anxiety. If I get upset I find that my Mum tends to get upset too so as hard as it is sometimes, I always put on a big smile and talk positively when I visit even when I don't always feel like it. Hopefully the staff have been trying to integrate your Mum into activities and socialising but if you feel that they could be doing more have a chat with the manager.

 

[canary]

Louise mentioned about your mum picking up on your anxiety and I think this is probably very relevant. People with dementia are very good at picking up body language and I know my mum used to mirror my moods. I dont want to sound harsh, but if you are going in every day with the attitude of having failed and everything is awful then you are just reinforcing this feeling in your mum. She may be frightened to leave her room and feels that she has wait for you.

Im not meaning to be critical of you and sometimes whatever we do we cant make them happy (would she actually be any happier at home?) If things arnt working, though, then its time for a change. I would agree that encouraging her to leave her room will help. Go in with a bright isnt-this-all-very-nice attitutde (pin that face on tightly!) and try distracting rather than comforting her. I used to take in some treats for mum to eat - sweets or cake were her favourite and when I produced them everything else would be forgotten. I also think it would be a good idea to step back and not visit every day - you want her to start forming relationships with the carers and other residents and she cant do that if you are always there. There is a member on here whose mother was not settling and after advice from the care home she didnt visit for 6 weeks! Her mother is now settled. Im not saying you have to leave it that long, but it can be a problem if you visit too often. We think that seeing a familiar face will help them settle and that if we dont visit for some time then they miss us, but with dementia it doesnt work like that.

 

[Blodski]

When my mother went into care, my father would visit her every single day. Looking back, I'm not sure it was a good idea as it blurred the lines between where "home" was. I also felt I had to visit all the time, but would break down when leaving, and I think she picked up on it. Now, I have taken a step back and realise I need to respect her space and allow her to form relationships with care staff. Admittedly, I have learnt to plaster on a smile and a happy face when I visit, and we always have tea together with some sort of cake that I have taken. In other words, keeping it as light and 'normal' as possible. If I want to break down, I do it in the car on the way home. Slowly but surely my mother has settled, and when I visit, she's linking arms with the carer, or having her hair done etc.

 

[echo66]

Thanks all for your replies. No one at the nursing home ever mentioned about not going in so often and I must admit it never occurred to me that I might be making things worse rather than better.

I always do go in with a 'happy face' and greet her with a smile even if I'm not feelng that way inside. We do manage to have a laugh and a joke and I always take something for her to read, drink, treats to eat etc. I encourage her to keep doing her puzzles and we often do the crossword together before I leave.

A couple of times recently when I've gone in she has wandered and I've found one of the staff helping her back to her room. I think one day she even made it as far as the tv lounge and stayed there for a while. I thought great, at last, she's starting to settle. Then suddenly it will go back to her asking if I've come to take her home, why does she have to stay there, who said she has to stay there. Once I've explained it (for the hundredth time) she understands and accepts, but of course doesn't retain the information.

This really has to be one of the most horrible, infuriating, devastating illnesses, ever!