Have I made a terrible mistake?

[Jesskle66]

Mum has been in a care home for about 5 months now. She was previously sectioned on S2 then S3 and it took most of the 9 months she was in hospital to diagnose her. She was very paranoid, delusions of grandeur, physically violent, hallucinations. She was eventually diagnosed as having dementia with Lewy Bodies. It was a hell of an experience with her being violent and abusive towards me after 47 years of a very loving and close relationship.
Neither myself nor the hospital could see any alternative except a nursing home. She had lived for the last 42 years in a housing association home and I was told by the social worker that I had to give notice as mum was receiving housing benefit for it. I then had to clear the house.
Mum was hallucinating very badly when she went into the home and I really don't think she knew where she was for a few months. She was always taken up with talking to people who weren't there that she didn't notice her surroundings.
The last couple of months the hallucinations have gone and she is painfully aware that she is in a nursing home and is never going home. I haven't said this to her but she has either worked it out for herself or has been told this by someone else. She seems so much better, a few outbursts of anger at times but only at the situation she is in.
I just feel that we have made a dreadful mistake. I am not even convinced by the diagnosis as mum has suffered from depression and anxiety all her life and it seemed like a very sudden descent into dementia. LB dementia is known for its fluctuations in awareness, but she has now been like this for the last couple of months. She says she misses us so much and cries whenever I go to see her. Her funding is co reed by S117. If I take her out and have her live with me and she gets bad again I cannot afford to put her back into residential care without that support. More importantly I have a daughter who should not be exposed to mum at her worst. I just feel that what I have seen in the last couple of months, mum would have been able to cope at her home with the right support and now I have given away her home of so many years.

 

[sleepless]

Please don't be so hard on yourself.
It will be because she is being looked after 24/7, with no worries or anxieties about daily living, that she has improved, and possibly medication?
As an outsider looking in, I feel you have done the very best for her, and you should be proud of that and pleased that she is as settled as she is.
It is easy to wonder if a person could have managed longer in their own home, but her safety and well-being are in the hands of a team of people now, and this can only be of benefit to you both.
Please try to stop worrying about this issue, and reassure your Mum on your visits. Often people tell their loved ones that they are in a convalescent home until they are strong enough to go home, a kind 'love lie', and this may work. You know her best, but maybe ask the staff's advice if she becomes upset, as very often this only manifests itself when family visit, and you may be reassured by what they say.
Kind regards.

 

[Jesskle66]

Thank you sleepless. What a great name. I guess it is the guilt monster at work because all that you say is right. She is being very well cared for, and as my husband said, I would have to give up my part-time job if she was to live with us and we wouldn't be able to afford to live in OUR house then. Everything feels on a financial knife edge and the S117 cover is a godsend. The home would be £560 a week without it, although I know mum would qualify for some support.
And yes, she is probably more stable because she is being looked after so well. A close friend of mum's did say that she knew things had been bad for some time and was doing her best to hide it from me.
Thank you for your reassuring words. X

 

[Shedrech]

Morning Jesskle66
Simple answer = no.
Wholly agree with Sleepless. You have done everything you could to support your mum who is now benefitting from your caring and the support she receives in the home.
If you are still in any doubt, here's the nugget that you must keep in mind:

More importantly I have a daughter who should not be exposed to mum at her worst

You are safeguarding your daughter, who is your priority, at the same time as making sure your mother is safe. As the meerkats would say 'simples'
Give yourself a pat on the back for being such a great daughter and mum

 

[fizzie]

I agree with Shedrech wholeheartedly. Pat on the back time and a big hard kick for the guilt monster. Well done you x

 

[canary]

I know what you mean about them improving when they go into a care/nursing home and you feel that they must be able to live at home again - mum did this too. But the point of it is that she improved precisely because she was in a care home. She no longer had the anxiety of trying to manage by herself and she has people around her all the time (even at night) to talk to and re-assure her. All her paranoia has gone and her delusions are now benign ones and no longer frightening (eg, she thinks another resident is her sister - the other resident thinks that she is her sister too!)
I know that if mum went back to her own home she would deteriorate rapidly as she is no longer capable of living by herself - even with carers coming in. She also no longer recognises her previous home and would be so confused.

I think it is lovely that your mum has settled in her care home and please, please dont feel guilty, you have done what is the very best for her.

 

[Greyone]

My heart really goes out to you for finding yourself in this situation, which i think will be beyond the understanding of many. From my brief experience , looking after someone at home is very difficult and at the time i dont think we fully understand the dreadfull effect it can have on us. Not just in the day to day caring, but getting them the best possible health care available.

It is very good news that you mother has improved but i think it is crucial that she stays where she is and has round the clock care. There will always be some risk that her health may stabilise for a while and then deteriorate.

My mother went into nursing care when she suffered yet another water infection had two minor slips whilst trying to exercise herself (in the night) , spent 3 days in EAU and then on the advice of her social worker, we agreed to about 6 weeks respite and then to long term nursing care. Your story is much more extreme than mine by quite a way and i have always been greatfull my story was not any worse.

So do please rest easy that she is somewhere she can have the right kind of care if her condition deteriorates and you can still spend as much time with her as you can without any thought of guilt.

When my mothers condition started to deteriorate we were advised that it wasnt possible to say how quickly this would happen in the future and that her overall condition would be a question of up and down , but always in a down direction. Some time when i'm with my mother i feel greatly saddened that our relationship has changed , but the good days are still frequent and very enjoyable when i see glimpses of how she used to be.

I believe that there wil lbe regular reviews of my mothers care and needs and this is the most appropriate time for to consider and changes (if any). But the thought at the back of my mind is that she will always be in the best place at any one time. and i hope it will be like this for you.

 

[fizzie]

oops sorry

 

[CeliaW]

Jess, one phrase that I picked up from TP that always helped me when Mum went into care was "A managed need is still a need" It is hard but no doubt your mother is appearing "better" because she is getting 24/7 care (provided by a range of people not just one or two which is very very hard), she may have had medication changes and I am sure that no longer having the stresses of trying to cope and understand what is happening makes life clearer and easier for her.
It obviously cannot be guaranteed but it is quite likely that, should she move out of care, her condition would worsen again.

It's hard for you but you have done the best thing and you are still caring for her, just in a different way.

And this "different way" allows not only your Mum to be safe and cared for but for you, your daughter and your husband to be able to have a reasonable life - because you all matter too.

Have a read round the forum, others have struggled with this and most have realised that staying in care was the best, most practical and safe solution xx

 

[Jesskle66]

Thank you all for your supportive words and shared experience. It all makes so much sense to hear things from other people in similar situations. It is hard to see it when you are in the middle of it, emotion colours everything and it ends up a big mess of guilt and longing for things to be how they were. When things seem to be how they were it causes as many problems! But you are all right...she is 'better' because she is being cared for in a way I just can't anymore. I made the cardinal mistake of saying to mum repeatedly before she got ill that I would never put her in a home. Those words come back, usually in the middle of the night, but I honestly never knew that dementia would be so utterly devastating and way beyond anything I could deal with.