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Dementia & Alzheimer's

Awful sadness about care home decision

31 replies

Qwenzo · 08/07/2020 21:28

So my mum moved into a care home this week and I feel very sad about it.

My hand was forced as I don’t have poa for health and welfare and she was so risky (dementia causing her to be going out without knowing where she was going or how she was getting back, severe malnutrition despite me going once a day and making food, near blindness, badly controlled diabetes etc) that the social worker insisted I put her in a care home or they’d take matters into their own hands. This way I got to choose the care home and I chose a lovely place I have extensive experience of and I’m comfortable with her being there as I know how well they treat residents.

I agree with the decision - she wasn’t coping at home and I felt I’d find her dead every day. But I know how much she didn’t want to go into a home and we only managed to get her there by telling her it was a choice between hospital or ‘convalescent care’ until she was built up a bit more.

I spoke to her earlier and she was begging to go home. I feel so sad she wasn’t able to stay, she has been in the house for 50years and loved it. I did try to keep her at home and only made the decision for a care home after I was forced to do it (for all the right reasons).

I just feel terrible. Her dementia is all about very short term memory loss so she can actually have a reasonable conversation with me. I’m sure she knows it’s a care home and is terribly sad. Made worse by the fact I can’t visit her due to covid.

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Qwenzo · 08/07/2020 21:29

I feel I’ve let her down.

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parietal · 08/07/2020 21:31

you've done the right thing. you have to keep her safe and looked after, and it sounds like you have found a good place.

She will get used to it, it just takes time.

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TW2013 · 08/07/2020 21:35

DM was like this, she settled after about a month and now she loves it there. She has made a number of friends and she looks much more relaxed. It will get easier.

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Honeywort · 08/07/2020 21:35

Flowers for you and your lovely mum. You know you have done the right thing but it is very hard. Haven’t got any answers - I don’t think there are any. But wanted to let you know I am thinking of you Flowers

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vodkaredbullgirl · 08/07/2020 21:35

You have not let her down, it is for her own safety. It will take time for her to settle in.

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cakeandchampagne · 08/07/2020 21:53

You “chose a lovely place” for her.
Sometimes that is all you can do.
Flowers

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Qwenzo · 08/07/2020 22:00

Thanks all. I don’t feel guilty about the decision as it was the only thing I could do or someone else would have done it. But I do feel terribly sad about it.

I have a terrible feeling she won’t settle. She had a month long hospital stay last year which was horrendous every day with her demanding to go home. Having said that her dementia has declined immensely in the last 15 weeks so perhaps that blunts the feelings a bit.

What a horrible disease dementia is.

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Haretodaygonetomorrow · 08/07/2020 22:07

It is an awful disease. I can empathise completely with the emotional strain of her asking to leave too. I hope she settles and becomes more at ease in the care home. It didn’t work out for my relative and we had to withdraw them, and return to 24/7 care at home.

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Candleabra · 08/07/2020 22:13

It's a horrible illness. You've made the best decision you could. There's no good or better decision in any of this. There no other way. It's the illness, it's awful. The worst. Be kind to yourself.

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flygirl767 · 10/07/2020 19:15

You have definitively made the right decision and it is totally normal to feel this way. I am going through similar right now although my mum is still in hospital on a MH ward. She asks every time I see her if she can come home and it is heartbreaking to keep having to say no. She will be going into a home next, initially as respite care but I just can't see her ever coping again at home.

Hopefully you will be able to visit soon as the rules look likely to change.

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Qwenzo · 10/07/2020 20:32

Thank you.

I’ve seen her through a window and she said today she would rather die than be in there. I said she couldn’t have stayed at home because there was a real risk of death and she said she wished I’d left her to die.

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helpfulperson · 10/07/2020 21:03

Everything is so much worse at the moment but I've three bits of advice

  1. whatever you do you will feel bad and it wont be the mythical 'right thing' like the rest of us you are just doing your best. So try not to stress about it.
  2. her being able to protest is actually a good thing. She still has enough cognitive ability to be able to adapt to the new situation
  3. We found the expression 'convalescent home's worked wonders. It's less permanent and something that generation is familiar with.

    You have done the best you can - and that's all any off us can do.
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Qwenzo · 10/07/2020 22:40

Helpfulperson thank you. No2 makes a lot of sense. Yes we are calling it a convalescent home but she’s adamant that now she is well, no one can tell her what to feel and do and she wants to be home.

I have done my best but I don’t want this To affect my mental health. I’m imagining spending possibly the next ten years like this and it’s a dark place. My mother is the master of emotional blackmail (I’m a great example of someone from the stately home threads!) and I’ve had it all my life so particularly sensitive to it.

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Mischance · 10/07/2020 22:46

You have done the right thing - she will settle. I have a lot of experience of this.

Do not feel bad about it.

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kerstina · 17/07/2020 17:47

Just wanted to say I am thinking of you too . I am sure I will be in the same position as you soon too with my mom . She has cognitive impairment and just about copes with my support but things are slowly getting worse . She isn’t getting lost very close to home , doesn’t understand difference between frozen and chiller foods . Loses things constantly . She doesn’t like strangers coming in and I feel guilty constantly
You have supported your mom as much as you can and now it’s impossible so should not feel guilty . I do get it though I really do Flowers

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Rokerwriter · 22/07/2020 14:59

Quenzo I found this post because I have just had to do the same with my dad. He moved into a care home on Monday and is, generally, settling OK with a few wobbles where he's calling me and ex-neighbours to ask us/them to take him home. Then he's fine again.
I don't want to hijack your thread, but what do people advise in terms of dealing with 'I want to go home' if my dad doesn't understand that he's there for his own safety? Do I gently explain that he can't go home, or do I tell him we'll sort something out, knowing he will have forgotten by tomorrow and not know what I've said and we'll start the whole process all over again. I don't want to lie to him, but if it comforts him, is it so wrong?
For a bit of background, he moved in two days ago and told me yesterday he'd done the two weeks as I asked him to and now he wants to leave. He was becoming increasingly confused and immobile at home and it's definitely the right option for his care, in my opinion.
Thank you and sorry again to hijack

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Rokerwriter · 22/07/2020 15:01

Quenzo I should have said, my thoughts are with you and your mum. I know how hard it is, I hope you both find peace very soon. You have done the right thing, although it might never feel like that. It's a very difficult time, isn't it x

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growinggreyer · 22/07/2020 15:08

@Rokerwriter, it is a hard situation and you have done the right thing. He is safe and cared for. Your idea of saying that you are waiting, going to sort something out etc is a good one. He will settle in time but it gives you something to say. Flowers

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helpfulperson · 22/07/2020 15:40

Definitely distract with vague phrases rather than say 'you aren't going home'.

Especially at the moment where everything is different it will take some time to settle.

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Rokerwriter · 22/07/2020 16:04

Thank you growinggreyer and helpfulperson that is reassuring. I don't want to lie to him but I don't want to upset him either. The current situation doesn't help, not being able to visit properly and sit down for a chat, but I have a good feeling about the staff, and to be honest, they'll probably do a better job of settling him than I could.

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IncrediblySadToo · 22/07/2020 16:16

@Qwenzo. Will you be keeping your mums home for now? If you had a rightful place on the Stately Hones thread, I think you have to put yourself first here. Before you lose your entire life to your mums manipulative ways.

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Willowmartha1 · 30/07/2020 08:44

I felt terrible for putting my darling mum in a home but I had no choice. As a single working mum in a tiny flat there is no way I could have given her the 24 hour care she now needs. She has settled into the home after three years but my guilt doesn't go away. I know if she was in her right mind she would tell me not to worry about her and live my life because that was the amazing woman she was. I hate dementia so much.

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Qwenzo · 12/08/2020 19:48

Just to update. My mum isn’t settled at all. She looks physically so much better but the mental strain is taking its toll on me.
Every time I see her she dramatically begs to be taken away, goes from crying pathetically to swearing in a rage.
I actually don’t think I can cope with this for a long time. The guilt is immense. I’m seeing a counsellor to try and sort myself out and she has advised me to seek help from the GP as I’m so anxious and she thinks I also am depressed. She is trying to unpick my difficult childhood with me which is causing me to feel this immense guilt.
I know my mother’s house needs to be sorted but I can’t even begin, just in such a terrible headspace.
Anyone any advice?

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Magissa · 12/08/2020 20:16

I was in exactly the same position with my dad in 2018. For his and others safety it was absolutely the right decision for him to go into a carehome. I would say it took three months to settle. The first two months he would pack his suitcase daily! I visited him every day for several hours. Helped the staff to get to know him, helped him socialise with other residents. Eventually by the third month the duitcase packing stopped! He began to benefit from regular meals and medication. His sundowning was in a safe environment with plenty of people to calm him or distract him. It will get better honestly. When you arrive be upbeat and positive. Take sweets or cake. Don't be dragged into negative conversation. Walk away and go talk to one of the carers. Then go back and try again to have a positive conversation. If its not a good visit go. You know she's safe you know you love her. You know that this is for her own safety. Change is hard for anyone. A new home is a huge change for someone with dementia but it does get better. It's good that you are getting support with your feelings of guilt but I think it is natural to feel like that. I have spoken to other relatives. In fact we had a WhatsApp group where we kept an eye on each others parents when we each visited. Sadly, my dad died in April. I can look back to those first weeks and how worried and guilty I felt but he was honestly happy there once he settled. FlowersFlowers

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Qwenzo · 12/08/2020 20:38

Thank you Magissa

That must have been hard for you if he packed a suitcase every day!

It’s made worse in that I can’t visit her properly, we have conversations via FaceTime or on the phone or at the window of her room. She is so demanding (personality not Alzheimer’s) and tells me every time ‘don’t let me down’ which doesn’t help my guilt. She has always guilt tripped me anyway.

I have started to tell lies to her to stop difficult conversations - today it was that I’d call the SW to get her out. I have to have the same conversation about everything (eg Covid) every time I see her anyway as she forgets what’s been said by the next day.

My counsellor suggested not going to see her - I’ve cut it down but find myself worrying in between visits.

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