To feel left out of this important decision.

[pregnantat50]

My sister is putting mum in a care home She gave me a lift home and stopped the car in lay-by, looked at me and said "Pregnant, this is so hard for me to say but me and BIL have been visiting care homes for mum and we have found one locally that can take her" However, despite my sister having power of attorney the care homes said, If my mum has an understanding of what a hospital is then the decision is still hers (my mums is forgetful but still eats, feeds the cat, and functions in society, she does forget names and whether children are her children or her grandchildren) My sister says she worries about mum when she is abroad and I am at work, she imagines her getting lost or doing something dangerous. I can see her point but mum will be devastated and what about her cat!

My sister is waiting for the next appointment with mums oncologist as the care home said it may be my mum needs more specific end of life care linked to her cancer rather than her alzheimers. I feel so powerless but understand my sister is just wanting the best for mum. Its sad, I have always thought mum would stay in her home until the end of her life and I dont feel that is imminent.

I am taking mum to see an optician on Saturday as since her cataract operation her eye sight has improved and she needs a new prescription, My sister has told me not to mention anything to mum, but I feel like a traitor to her, I always promised mum she wouldn't end up in a home.

AIBU to feel my sister should have discussed this with me before she got to this stage, I would also like to have been included in visiting the care homes for peace of mind to ensure they are the right place for mum.

If you can move into your mum's and feel able to provide her with the level of care she is likely to need that could be a solution, it could potentially be 24hr care, as she might be prone to wandering off as her alzheimers progresses, or end up bedbound, incontinent and needing frequent turning to avoid pressure sores. It's not an easy option by any means as she could deteriorate rapidly or it could end up being a long-term arrangement and she might not be the same person as before due to her dementia. And it's worth considering whether that's the best option for both her and your family.

I'm not trying to put you off, just saying you need to consider what you're taking on, I'm experienced in end of life care and even the most loving and dedicated people can find it too much.

If you did start caring for her at home yourself you could still change to a care home later on. There's no shame in that and if you felt you were getting burnt out with the demands of caring for her full time it's better to make that decision than struggle. They get bad press but there are good homes out there where she would be well looked after. You could start by occasional short respite stays to try some out and see if she likes anywhere. I already tell my parents that although I wouldn't put them in a home if they didn't need it I won't be making any premises, I've worked with too many people whose families feel terribly guilty at having to go back on such a promise.

Good luck with it all

Oh gosh this sounds like what we went through. DB wanted mum in a home as she was in a remote hospital that was supposedly a rehab place, she had mild dementia but more importantly she lived on her own and was not steady on her feet or good at remembering her meds. We had always said we would never put her in a home, it was her biggest fear. I lived 350 miles away, one DB lived in scotland the other in our home town where mum lived, we had no choice really but to move her from the hospital where no one visited as it took ages to get to. DB found her a care home very near her home, so familiar surroundings, close to friends who could visit and the intention was that as she got better we could wheel her to her house for the day and to her golf club for her weekly lunch and card games, the home had activities and hairdresser, nail bar etc so it seemed like a better bet than the hospital where they got her out of bed and she just sat there all day it was a temporary move so we did not have to sell her house or anything and she seemed to accept it as we all truly believed that after a few weeks she would improve enough to go home but sadly this was not the case, 6 weeks in she gradually got worse, slept all the time, got more confused and was put on end of life care. I spent the last two weeks of her life away from my family sat with her in the home every day, was the hardest thing I ever did and I felt I had let her down as she never would have wanted to go in home even though she was ok with it as a temporary thing. If you are able to care for your mum or move in and if you think that she is 'with it' enough to cope at home for now then do what you can until such time it is beyond you and she needs specialist nursing, let her life go on as normal as possible for as long as possible, discuss it with her so you are all clear of her wishes. if and when the time comes for her to need more care than you are able / willing to provide then she needs to look at homes with you to see where she feels comfortable, this is so important, she needs to be part of this decision no matter how poorly she is, and if possible it needs to be somewhere as close as possible to her home so you and any friends can visit and where she can still get out to her clubs. In her last years you need to know you did as much as possible for her according to her wishes otherwise the guilt lays heavy. Please don't let your sister, however well meaning make those decisions for you and your mum, get her involved.

Thank you madratlady your comments make a lot of sense.

I have had some good replies and have read them all. It has helped a great deal.

I have reported this thread as it is a little easy to identify and I dont want to upset my SIS as I said she has done this with the best of intentions and we need to work together on this.

x

Not sure about your DM's finances or what the family can contribute. But you can get live in care from decent kind people via some of the private care websites but it's around £800 pw and doesn't tend to cover emergencies but that can be dealt with. My DP was compos mentis but had a degenerative neurological condition. She died as she wanted in her own home. However her DC were within reach for visits and weekly checks.

Hi Pregnant, I wanted to add our experience of dementia. My MIL suffers from it. She was always adamant she never wanted to go into a home. She also swore she didn't need carers and wouldn't have them. My SIL found it much harder initially to see that she needed help and over riding. Social workers came tovisit and were very little help, they said she was better in her own home for as long as possible and wouldn't do much else than listen to her telling them all of the things she managed in daily life (she was talking about what she used to do five years previously). The social workers wouldn't look at the gone of food in her fridge, or the used teabags she put in her bedside cabinet, or anything else that we were worried sick about. We got private carers for three or four hours a day, who were wonderful and definitely helped, but they didn't help for the other 20 hours of the day. My husband was having to spend more and more time there, trying to get her to settle. We'd get phonecalls when we were out from the neighbours telling us that she'd wandered off again. She got in cars with people and persuaded them to give her a lift home, then wouldn't know where that was. It was a very stressful and worrying time. She also got very agitated and angry, and would frequently lash out at us all verbally and physically. It would be a huge job being a full time live in carer to someone like that, you'd never get time off..

Eventually we all agreed that she needed to be in a home. We found a few nice ones and even took her to see one. She went crazy, saying she was disgusted in us and she wasn't going into a home, when she got home she threw ornaments at us, slammed doors and sulked. About six months later we looked again, found a lovely home and the home suggested telling her that we were all going away and that she stayed with them for a month while we went. She wasn't overly happy, but she half agreed. The home suggested we left her a month to settle. So off she went. The first night the home rang us up and said we might need to collect her as she was so angry and shouty that she was upsetting the others. But thankfully she got slightly better and ended up staying. Sometimes when we visit she says she doesn't want to stay and wants to go home, and it tugs the heartstrings, but you have to be rational and remember that she used to say that when she was in her own home too.

Nowadays she's happy there. She's clean and well dressed, her room is lovely, she's put on weight because she's eating properly. All the time we spend with her is now quality time. We go out for lunch or an afternoon at the garden centre. The part of the home she is in is a dementia wing, so they do lots of activities similar to the groups that your mother attends, craft sessions, colouring etc. There is always something like The Sound of Music playing on the TVs, it's a nice place. It's taken a huge weight off our shoulders. My husband was getting ill from the stress of it all.

So basically what I'm saying is that most of us don't want to see our parents in a home, but that sometimes it is the best thing, the safest thing for them. And that not all of them are the awful places that they have the reputation to be. But your sister wasn't fair not involving you. Could you have a chat with her, tell her you accept it might be for the best, but ask if you could be involved in where she goes - somewhere easy for you to get to as well. Although in our case, the home wasn't in a place we'd have chosen, it's 10 miles away, but actually it's much nicer than the more local ones (which are fine).

It does sound like a care home is the best solution (if not now then it will be soon) BUT it needs to be one that is near you.

Has your sister looked at homes near you and explained why they aren't suitable? Could you do some research yourself?

If your DC are adult, are any of them likely to be moving out soon - if so could they take the cat...? Or any friends/neighbours/other family who could?

RosieSW's deferred loan suggestion sounds excellent.

There is no way I would let my sister dictate this if I was willing to look after my mother.
Just tell your sister you will look after her. It's not up to your sister to decide.
If you will always regret moving her to a care home don't do it.
We cared for my mum with cancer at home, admittedly with a lot of carers coming in. But it can be done

Oly once her mum no longer has capacity it is her sister's decision - that's what POS means. I'd assume - as her mum nominated her sister as an attorney - that this is what she wanted. And, as attorney, it is her sister's duty to make sure her mum's care needs are met, not just hand her over to her other daughter and hope that it all works out.

POS not POS

POA!!! Damn autocorrect.

It's very hard when people are refusing help at home.

Nobody ever wants a parent to go into a care home, but despite the horror stories in the media there are some very good ones out there, and many people do very well in them.

To be honest, it's often better to act before there is an actual crisis (which is all too apt to happen when you have dementia coupled with a refusal of care) and when you need to find a care home place in a hurry, it's all too likely that the one you like best will not have a room available.

Your mum may be just about OK at the moment, but sadly, dementia will only ever get worse, sometimes quitenquixkly, and there will often come a point where the person needs 24/7 care and supervision, I.e. someone on hand ALL day, ALL night, 365 days a year.

Such care is often very difficult, or impossible to provide at home.

DH has moved back in with his parents to help DFIL as DMIL has Alzheimer's. TBH it has been an absolute nightmare the last few months, nobody is getting enough sleep, she wanders around the house half the night, barges into bedrooms, tries to get everyone up. She's gone from being one of the kindest loveliest people I've ever known, to a bad tempered and hideously rude old lady. She makes loud, embarrassing and/or racist remarks out in public, something she would never have done before.

I'd think v v hard before considering moving back in with her, DH says it's hell 24/7 now :(

My DGM went from flying abroad on her own to Spain, to having to go into care within 18 months. Incoherent and incontinent when I last saw her, she didn't even know who I was. My DM ( with no other responsibilities) ended up on blood pressure medication and anti depressants trying to look after her. And that was without cancer thrown into the mix.
You and your DC needs and safety come first here. Not your mother's wants. Her insistence on not going into a home was completely unfair on you, and sadly, typical of many of that generation.
As an ex district nurse I've seen many many families insist on taking their families home to die, and very soon be unable to cope with the reality. Your DS sounds so practical and sensible, ditch th guilt and come together to find your DM a suitable home before you end up having to do so on your own in a crisis!