Mum's distress at being in a Home

[ooster22]

Last week I posted for the first time saying that after 5 months in hospital my mum was going into a Care/Nursing Home on Monday. On Monday she was moved into the Home, which is light and bright with attentive, caring staff. She has a lovely room overlooking the gardens and her own en suite bathroom and we had already taken in a lot of her personal things, clothes and photos etc to make it nice for her. Me and my husband spent the afternoon at the Home with her on Monday and were delighted that she seemed cheerful and relaxed and virtually unaware that she had left the hospital. She liked her room and we were able to get her to actually sit for half an hour and listen to some music before she was compelled to get up and wander (a significant symptom of her dementia).

I left work early on Tuesday afternoon and spent a couple of hours with her - again she was cheerful, clean and well dressed and seemed quite happy. We talked about how we were going to take her out for the afternoon on Saturday to have a look around the shops etc which she said would be lovely and she only got a little upset when it was time for me to go.

So, for the first time in over 5 months, I relaxed a little and felt better about Mum. Because I felt that she was coping ok I didn't go in to see her Wednesday - I did call and they said she was absolutely fine - but felt huge guilt at not having visited her.

Yesterday I went to see her after I finished work. I arrived just as they were finishing dinner and mum was tucking in to a huge bowl of trifle. She was thrilled to see me and not at all upset, she was also dressed really nicely (something the hospital staff never had time to do) and it was obvious that, as requested ,she had had her hair done the previous day. She chatted happily about how she had been to a wedding that morning, seen several of her friends and about the non-existent lovely black cat sitting on the chair (many of her hallucinations involve animals). The only 'blip' was that she whispered to me that she had wet the bed at night and it was really worrying her. I didn't take too much notice as she had quite frequently told me she had wet the bed during her time in hospital and always when I checked with the nurses they assured me she hadn't.

Anyway after she had finished eating we had a wander around, went back to her room and I helped her clean her dentures (as she said she had food stuck in them) and then I took her out for a cigarette. On the way out I managed a subtle word with one of the care assistants and asked if mum had wet the bed - I was shocked to hear that yes she had and in fact it had happened twice the night before.

On returning from having a ciggie we went back to mum's room, she sat in her chair and I put on a CD to listen to. When I turned back to her she was silently crying and I asked her what was wrong - all of a sudden my mum was 'back'. She told me she didn't want to stay there, she was frightened and lonely, she wanted to be with me/us at home (she lived with us prior to being admitted into hospital). She promised me if she could come home she would stay out of the way if we had friends round (how heartbreaking is that?) and that she couldn't be kept there against her will and she begged me to take her home. She said at least at night she could call out and know I would answer and she wouldn't feel so alone and frightened. I was completely floored - not once during her time in hospital had she asked to come home, not once during the last 5 months had she had such a sustained period of clarity and lucidity.

Feeling a total monster, I reassured her that once she was better she would be coming home and then suggested we went out and sat in one of the lounges. I sat mum next to one of the care assistants and mouthed to her that mum was upset. The assistant asked mum how she was doing and mum switched to being perfectly cheerful and answered that she was absolutely fine.

Shortly after I left and cried all the way home. Mum has ongoing severe problems with her bladder and is also subject to frequent urine infections,which means her fluid intake and urine output have to be monitored very closely, and if she deteriorates and goes into bladder retention (as happened during her time in hospital, she goes from seemingly completely 'well' to seriously ill in a matter of hours), in addition she has swollen, ulcerated legs which need re-bandaging at least once a day. These physical problems combined with her dementia are severe enough that she has NHS continuance of care funding for at least the first month at the Home and everyone from CPN, to nursing staff to SW have told me it would be ridiculous, given the level of care she needs to even contemplate having her home and logically I know this is true.

My head tells me this is a transition period and she will settle - but why after all this time has she had such a period of lucidity? How do I deal with the heartbreak of her begging me to take her home? I am terrified that she will continue to beg me to come home and even more terrified that the guilt and heartbreak will compel me to have her back home.

Please tell me this has happened to others - I'm sure it has, but at the moment, I feel like the only person in the world who is so awful as to have put my mum, against her will, into a Home.

 

[Goingitalone]

Hi Ooster22,

First let me assure you that this IS common. My Mum begged my sister to take her home after a couple of days in her care home.

Mum still has periods of lucidity. She went into her home on 25th May this year.

However she has settled well and NEVER asks to come home now. She is perfectly happy and contented and everyone at the home loves her.

Those first few days are awful, I cried buckets and the guilt was overwhelming. But you have to remind yourself frequently that she is safe now and she will settle. I have the odd 'wobble' of guilt and fear but it's still early days.

Be assured it DOES get better.

All the very best,

Maggie

 

[sallyc]

It's awful seeing our loved ones so upset, isn't it?

I cared for my Grandad until he moved into a home nearly a year ago. He often asks how much longer he has to stay there, and we do just as you did and tell him the doctors have said he needs to be there while they sort out his medicatio and that, once they've done that, of course he'll be able to come home. He thinks he's only been there a few weeks.

Sometimes it feels wrong to lie to him, but it's better for him to be happier, thinking it's only for a short while.

It did take him a good long while to settle and, as you say, it's very early days for your Mum.

I hope things settle for you, and that others can offer more advice.

 

[susiewoo]

Having been in hospital for 5 months it must be like being freed from prison to be in her own room with all her bits and bobs around.....it all sounds wonderful and just when you relax...here comes the guilt monkey.
In your head you know this is the best place for your Mum and how amazing that it is near and you are comfortable with the way your Mum is being cared for. Hold on to those thoughts and know you have achieved the best for your Mum and she will settle and in time you will look back and know this was the right thing.
My Mum has been in care 5 yrs now and there are still visits where I sit in the car afterwards and weep.
At the start it all seems despairing and how can we live with these terrible decisions but I have had some really good times with my Mum since she has been in care. I've had some truely awful ones as well but you get through somehow.
One day at a time and talk to the staff. You are probably exhausted as well which drags you down. Be kind to yourself and let her settle.

 

[Katrine]

Did you 'put' your Mum in a hospital against her will? Please try to see the move to the CH as being a transition from a medical environment to a living environment, but with continuity of nursing support. As you have said, you have been advised that she needs a high level of care and could not get this at home.

It was all going so well. That short moment of lucidity gave your mum the opportunity to think she was OK really, and the only reason she wasn't at home with you was because she was a nuisance. Hence her promising to be good and quiet and keep out of the way. That must have been such a sad moment for you, and of course it pulls at your guilt strings.

This CH sounds lovely, and the staff seem supportive and kind. That rapid switch back to being cheerful when the care worker spoke to her shows that your mum was only experiencing a brief escape fantasy, which was quickly forgotten. It is still very early days and it sounds as if she is generally settling in very well.

You do not have to visit every day, especially if this distresses you. You are going to come away with highs and lows of emotion depending on how mum was feeling during your visit. For the rest of the 24 hours you are not there to see the overall picture. Keep talking to the care staff and if they reassure you that there are no tears and wobbles, or that they only last a few minutes, then I think everything is going as well as anyone could expect.

With regard to the bed-wetting, are you worried that mum was doing this in the hospital every night and the nurses were not telling you the truth? Whether or not this has become a regular thing, the CH staff are used to managing it. My mum now wets the bed every night, and every afternoon when she goes for a rest, even though she wears incontinence pads. Her carers deal with it discreetly and I think mostly she is unaware of having done it because they just get her cleaned and in dry clothes and into her chair in the living room before they go back to deal with the wet bedding. She knows the washing machine is always on, but I don't think she realises why.

It is worth discussing this with the CH, to be sure they are providing pads or pull-ups for bed-time, and that Mum has sufficient nighties, pants etc. I am sure you have already discussed her urinary problems but perhaps increased loss of bladder control has developed to a greater extent than you realised. I don't know why nurses tell fibs, but I wouldn't be surprised if they had done because of some daft protocols about patient confidentiality.

 

[BeckyJan]

Hello.
Yes it is very common indeed, not only the wishing to go home but the odd periods of lucidity.

You know in your heart your Mum needs the nursing care which you have found - and it does sound good. During nearly every visit to my husband he would say 'come on then lets go'. I always said he was in convalescence and getting medication sorted, then he would come home.

Your Mum's anxiety is probably caused by the bed wetting at night. I am sure the staff can sort that out with her and then she will feel more confident again. The home and care staff sound lovely so please try to assure yourself your Mum is in good hands.

Take care yourself - your Mum would want that.

 

[ooster22]

Thank you

Thanks to all the wonderful people who responded to my post - THANK GOD FOR TP, I have a feeling I shall be using it often and it is just so good to know I'm not in this alone and to have the reassurance from others who have been through it and are still going through it. THANK YOU SO MUCH xxx