DM has summoned me and my brother to moan at us both together in person

[LindorDoubleChoc]

This is what it boils down to. She is in a care home because she can no longer live safely alone at home (several falls, almost completely immobile, dementia beginning to set in).

She has been there since 1st December. My brother and I, who are both in our 60s and live 1.5 and 2.5 hours drive away, signed a big sigh of relief and hoped the endless phone calls and problems would go away when she moved in.

But ... NO! She is not happy in the home. She tells me every phone call and every visit. She said she wanted he and I to visit her at the same time so the three of us could "talk things over". I have agreed to go - very reluctantly - but what for? She can't go home! I am getting to the end of my rope with her endless complaints. Because she is getting forgetful she literally writes a list to tell me. It will be more of the same tomorrow. I'm completely dreading it and so resentful of all the worry and stress this causes me. My teenage son and my husband are also at low points right now, I don't need this on top of everything.

I just want her to appreciate what she has and accept this is her life now. It is an extremely good care home, very expensive, very comfortable. It is the place she said she'd want to go if she ever reached that point!

The stress is making me depressed. No doubt my brother too.

How should I approach it do you think? Any ideas?

This. It sounds like you have lots of your own stuff going on. Your mum is safe, being cared for and may need some more settling in time. Plus her dementia won’t help. I wouldn’t let her summoning you to moan at turn into a thing

I just want her to appreciate what she has and accept this is her life now.

How do you approach this? Please have a bit of compassion. Or imagination.

Imagine you are forced to move from your whole independent life into one room, become institutionalised and in moments of dark honesty realise you are losing your memory because of age-related brain damage (that is what dementia is basically).

Getting old can be cruel and dehumanising. (I’m watching my own mother disappearing from her former life). Please have some understanding and compassion.

Getting old can be cruel and dehumanising. (I’m watching my own mother disappearing from her former life). Please have some understanding and compassion.
While I mostly agree, sometimes there are other family members who need attention, too. Talking to my friend last night she told me she’d spent 93 nights last year at her parents’ home and hours and hours sorting arrangements when she wasn’t there. She said once she’d factored in her working life there was little time for her kids.

How are you today @LindorDoubleChoc
Hope yesterday went ok all things considered.

Thanks for asking @CrotchetyQuaver (are you a fellow pianist?).

She is down but we had to talk to her frankly about not going back home. She was down when she lived at home too! (seems to have forgotten this, but she has had real struggles at home and felt very unsafe and was constantly calling the GP and 111 - I had a thread on here about it).

She can't hear a thing so we have made an appointment for her hearing aids to be checked/adjusted. I think part of her apparent dementia (forgetting things) is actually that she hasn't heard and/or understood in the first place.

I had a long chat with the nurse looking after her and she says that most residents are unhappy when they first come in. I know that my mother's greatest unhappiness is that she can't deal with simple things - TV, phone, her tablet and she gets very het up about it all, whereas if she just calmed down she would be able to make them work. But it was the same when she was at home - and then she didn't have anyone to ask to help her. She can't used to the idea of asking carers in the home to help her instead of getting on the phone and complaining to me and my brother.

I hope she settles in - it will be a sad end to a long life if so. However, she's been depressed forever, so that's possibly a bit optimistic of me.

I honestly find this post so so sad.

Mamy dementia service users complain endlessly about wanting to go home. I’d say it’s attributable to the illness and you just have to take what she says with a pinch of salt.
Sometimes it’s better to play along and just say she’s in for a holiday rather than be honest and cause more distress.
it’s sad but she’s in the best place for her. Be kind to yourself and don’t feel guilty.
Put yourself, your husband and son first now.

My DGF was in this position recently. My DNan had passed away and was his carer. We muddled along for a few months, sleeping there in shifts and having carers in 4 times a day but it was exhausting for us all.

He moved to his home under respite and the first 6-8 weeks were hellish. He did nothing but moan and say he was moving back to their apartment. Like your mum, it was very much a case of things being different, which he didn’t like, but we just tackled each problem as it came up and tried to make him understand that the carers would take a while to get to know how he liked things done.

He fell coming out of the bathroom the second month he was there (wouldn’t use the buzzer 🙄) and that shook him up sufficiently that he realised he needed to have 24/7 care.

He’s since settled far better - he accepts it for what it is. He couldn’t live with any of us due to work and his needs being greater than we can meet. He doesn’t get involved in the activities but he likes the hustle and bustle and hearing ‘life’ around him.

Just persevere OP - the first couple of months were the worst and we were so stressed out. Now, we’ve got our lives back and he gets visitors every day of the week so he’s not been abandoned there either!

I really like this way of putting this and never have thought of it. Shows that you are open and not saying no but they are clerly not able for it!

Yes, it is sad when people become so old that they can no longer care for themselves. But what are we going to do? "bump them off" as a pp put it so delicately.

Wow! This is where your mother is being cared for at the most vulnerable point in her life!
Has she been assessed as not having capacity?

Honestly, @LindorDoubleChoc , consider putting her on anti-depressants. They have really lifted my mums mood and made her so less negative. She's much happier in herself and much more relaxed when things go wrong around her.

Thanks Marsha. I read your comments earlier and was going to ask. Do you know which anti d your Mum is on? Mine has always refused to take them in her severely depressive episodes in the past - I think she gave citalopram something like 5 days and then binned them! She's always been like this, but I think as she's now on lots of tablets for various health conditions she might not mind taking one more per day.

She is being assessed for mental capacity - hopefully this week if all her blood tests are clear.

@MarshaMelrose How did you get the GP to give your DM antidepressants? I raised it an appointment I went to with my mum & he just dismissed the idea saying it's "grief". Well how long does grief go on for? It's 3 years since my step dad died. My DM is always very tearful, has high anxiety that causes her to scratch her arms & she takes lumps out of herself. GPs answer is to prescribe antihistamines. She's been taking them for 12 months & they've made no difference at all.

Please see another gp. They are not all the same.

I know that my mother's greatest unhappiness is that she can't deal with simple things - TV, phone, her tablet and she gets very het up about it all, whereas if she just calmed down she would be able to make them work.

Dementia can lead to personality change. It's a kind of brain damage. Think of how annoyed or irritated we all get when we can't do something or make something work?

Well, imagine that as a permanent and degenerating state. And then imagine being told to "Calm down."

I think you really need to let your irritation with your mother go. I had plenty of quite serious problems with my mother, but when I see what this cruel damage of ageing dementia is doing to her, all those things fall away. There is only compassion for the awful ordeal she is going through.

She will come to a calmer place. My mother did after 5 years of panic & anger. But you know, that calmer place is that my mother is like a child. She was an artist and had a fierce intelligence, which she used to teach & inspire other artists. Now she watches day time television and sleeps.

HNRTFT this lady is your Mother who is loosing her MC and is probably scared about her future.
Why is she so far away from both you and your brother ?
Can you arrange to visit / take out regularly?
Moving permanently Ito a home for whatever reason is massive.
Are there activities daily ?

My mum has moderately severe dementia so doesn't really have capacity to make decisions over medication. If I give them, she messes around over taking them so I crush them up and put them on her cornflakes under the sugar.

She's on sertraline 25mg titrating up to 50mg. It's quite small so not onerous to take.

My sister was given citalopram a few years ago and hated them. She stopped taking them. When she saw how mum did on the setraline, she went onto them herself and she (and her husband!) said her mood, attitude and behaviour just all became so much more relaxed. So these are definitely better than citalopram.

Mum is also on memantine for her dementia and that's softened her down too. Her assessment at the memory clinic was a joke. (Honestly I could write a book on the inadequacies of the nhs around dementia.) However, once diagnosed, the memory nurses have been absolutely fantastic. They really do understand what you're going through and they have really been supportive.

(However, there's no real support for anyone with a self-funding relative with dementia!)

I don't know if your mum has dementia but I have found that all the nhs practitioners are lovely, kind and sympathetic...and totally useless.

I told the gp that I wanted her to go on antidepressants to lift her mood. I told him she had a low mood, very down, she was crying, going to bed during the day, didn't want to do anything, didn't want to go out, said no all the time. He prescribed Sertraline which has been fantastic. But you really have to lay it on with a trowel. I've also learned that they're happy saying no face to face. But if you put your concerns in a letter, they move a bit more. They don't like paper trails. (Sorry gps on here. I've had to battle so much for just basic stuff that I'm struggling to just keep my head above water.)

Even if your mums issue is simply grief, surely for it to go on so long and for her to have such extreme behaviour, shows that she needs some intervention, even if only short term? She's clearly not receiving the help she needs.

If you did read the thread you wouldn't need to ask those questions. Yes, there are activities daily. Yes, this is the home she has always said she wanted to go to if it came to it. Yes, she has been there before for respite care and yes, in late November when she knew she could no longer manage at home she was very relieved and happy that they had a room for her.

No, my mother has no complaints about her treatment from the staff. Yes, she does appreciate them and think they are kind. No, she won't ask for additional help (too proud), no she is not prepared to wait 20 minutes in the morning to have a shower, she demands to be up, washed and dressed as soon as she wakes up. No, she doesn't appreciate that most of the other residents are getting up at roughly the same time as her.

She doesn't want to be in a care home. There isn't an alternative. It makes her depressed but this is nothing new, it's just a new focus. I will ask about an anti depressant thank you to MarshaMelrose.

Listen to her concerns. If there are simple solutions to some of them, discuss them with the care home manager and ask the manager to come in and chat them over with your mother in your presence.

But learn to take her moans with a pinch of salt if this is the onset of dementia. She may be complaining about things that just aren't true. My mother complains that people steal her fruit. (We send her fruit baskets as she loves fresh fruit.) They don't. There are always mountains of fruit in her room. She complains she is never allowed to help in the kitchen. I get sent regular photos of her cooking her signature dishes, so I know she's not only in the kitchen but been there all day, telling the staff how to help with her favourite recipes.

It is very hard. Sometimes it is hard to balance lots of unknowns: is her early dementia causing her grumbles? Is it in fact a difficult place to live once the honeymoon period is over? Does she have some legitimate concerns?

I would suggest that you listen to her concerns, and not go in with an agenda that her concerns are unfounded and your task is to persuade her to stay. Say she grumbles about the food - tell her you will talk to the staff about the menu and any particular requirements that she brings up. Say she feels unhappy about being in her room a lot - tell her you will speak to the staff about this - and so on for each complaint. Don't imply that she is wrong, because none of us know what it is like to be in a residential home for the rest of our lives, with all the loss of control that this implies.

She needs to feel that you are taking her concerns seriously. I just want her to appreciate what she has and accept this is her life now. Would you do this passively? She has lost her freedoms and it is very very hard to reconcile - there are clearly very good reasons for her to be there in terms of safety etc., but that does not guarantee that she will be happy.

So much depends on relationships - unfortunately some carers can be quite bossy and speak in an insensitive way. It is a fact of life that none of us would like.

If she is still unhappy and you are unable to sort out her concerns, there are citizens advocacy services in most areas, whose job is to advocate on behalf of vulnerable people.

But step one is to speak with her as if you are prepared to listen and to recognise the things that are worrying her. Unless either of you have power of attorney for her health and well-being she retains the right to chose where she lives.

I am not trying to pile guilt on you, but I know how easy it is to feel exasperated when what seems an obvious solution to a problem is not acceptable to the relative involved.

I have worked a great deal with elderly people and can see how difficult it is after a life of bringing up a family and being the centre of family life to find yourself with every control and choice taken from you - inside she is 20/30/40, even though her body is letting her down.

I hope you can find a way of dealing with this problem that suits everyone.

It's a cruel disease. It takes people away from themselves. You can't treat a person with dementia as if they were rational - they have brain damage, and they are losing control of being able to live as an independent adult. Of course someone is going to complain & be angry about that. It needs a different mind frame from us, who are helping our parents, but still have full cognitive abilities.

@Mischance you've said all that I feel, but didn't know how to say rationally.

And I would add that I did not expect to feel this calm compassion for my mother. We had a sometimes difficult relationship.

But it has now come down to a very simple kind of love. She doesn't quite remember my name, but she knows very deeply I am her daughter, and her state is such that none of the previous difficulties means anything now. They are irrelevant.

All that is left is care.

EasterIsland "I think you really need to let your irritation with your mother go"

how though? My mum doesn't have dementia but my sister and I are both really struggling to cope with her atm.