Mum 83 refuses care home but what are the options?

[Bananasinpyjamas21]

My mum is adamant that she never wants to go into a care home. However she has severe COPD which means she now gets breathless going up the stairs and cannot even make it to the bus stop anymore. She lives on her own, my sister lives near but she is very busy with work and kids and won’t be able to provide care.

I live too far to provide daily care, but would be able to if she moved in with me, but she doesn’t want to move (sister is her favourite child!).

I want to respect her wishes and help her, and my sister, by doing whatever I can. Am looking into carers in the home, attendance allowance and home mobility aids. There is very little care for her from NHS. I’m just worried there will be an emergency like her going into hospital, and either my sister will say she can look after her (but she cant’ really) or she will go into a care home without any time to even look into this. I want to be prepared. Any advice?

[Consufed]

I don't think anyone wants to move into a care home. However it is still the right thing when a situation gets to a certain point. Being able to visit your mum and have proper quality time with her, is very different from being exhausted in a caring role.

[NerrSnerr]

Your mum needs an adult social care assessment who can look at carers/ finances etc. Ultimately it's her choice and YABU to be clear to her how little support you can give her.

People are allowed to make decisions that other people think are poor and that are stressful for others. It may just be that she needs to come to terms with the idea in her own time so she doesn't feel like she is being 'put in a home' which is really dehumanising.

[CMOTDibbler]

It might help to break down the things that will need to happen for her to stay at home long term. So, if she can't get upstairs, does she have a downstairs loo so she could have a bed downstairs and stop using them? Or would moving downstairs mean a commode and so carers morning and evening to empty it (totally possible). If she could get to the shops etc if she could get to the bus stop, a mobility scooter would let her get out and about - might need a shelter for it in the front garden or a little ramp.
A cleaner once a week might be a good start to having someone come in and help her change her bed and so on and you've broken the mental barrier of her having someone come in.

[Badger1970]

Been through this with Dad.

They will only get frailer, and changes/moving gets harder as this happens - it's better to do things too early than too late. We had care in 4 times a day, but it was sods law that Dad needed the commode/had a fall when no one was around. It's really diffcult keeping someone at home when they're ill (Dad has got cancer)and it's not just general aging.

My only regret is tiptoeing around the issue when we should have confronted it head on.

[startingline]

If your mum has no dementia and has the ability to make her own decisions about her life then it's time to throw the discussion back to her. There's no magical solution to this one. She's not going to get back to full health if she has COPD, so it's time for her to make her own adult decisions about her old age.

If she doesn't make any proper plans she runs the risk of events taking control of the situation and an emergency making the decision for her. If she's admitted to hospital she could end up going into whatever care home has a bed. Would she consider moving to sheltered housing?

[Bananasinpyjamas21]

@Consufed yes it might be the best option when the time comes, but if it does come to a care home I thought it might be a good idea to see what was locally available beforehand so be prepared?
@NerrSnerr not sure I understand your post! I am supportive of what my mum wants, but want to be prepared and to be clear in advance what the options are so that it’s not a last minute panic.
@CMOTDibbler yes she does have a toilet downstairs which is handy as she would find it difficult to go up the stairs more than once a day now. I feel for her, it can’t be easy. I guess my main concern is that both my sister and my mother have their head in the sand about the realities. I don’t want to ignore it, have heard too many panic stories from friends about their folks.

[Bananasinpyjamas21]

If she's admitted to hospital she could end up going into whatever care home has a bed. Would she consider moving to sheltered housing? yes this is exactly my fear and could happen if she gets a lung infection, or my sister, with a good heart, says she can look after her after hospital, but can’t in reality (just too much with her work and kids tbh) and she is back in her home and us scrabbling after social services.

[Bananasinpyjamas21]

@Badger1970 what did you do about your Dad? I can see this happening to my mum. At the moment she absolutely refuses to move again to anywhere, and even my sister didn’t want to get her a falls bracelet when I asked her to go half’s. She also didn’t see any point in getting her carers yet, and neither did my mum, but when I go in to the house it’s clear she’s struggling with even putting out the bins.

[Coxspurplepippin]

Agree with PP about looking into sheltered housing. DMum's next door neighbour aged 89 moved out of a 3 bed bungalow after her husband died. She's now in a studio style flat, bedroom, wetroom bathroom and open plan living room/ kitchen. She absolutely loves it - company in the resident lounge if she wants it, activities several times a week, town centre location. Her little flat is still big enough for family to come to tea, and there's wardens on-site.

[CPL593H]

You are putting the cart before the horse. Being breathless going upstairs and not being able to walk to the bus stop is nowhere near the threshold for local authority funded care, if you use that as a benchmark, most especially as she seems to be cognitively OK. What help with washing and dressing, preparing meals and essential housework does she actually need? You would be better to identify things that are real problems now or becoming so and encourage her to accept help with those (I know it isn't easy) than go for Defcon 1 and start even thinking about care homes. She won't be receptive to that and has every right and reason not to be.

[CPL593H]

And YY to previous posters, if the house is too much now, sheltered accommodation would be worth talking about with her.

[endofthelinefinally]

Sheltered housing with a warden can be a really lovely half way house. I used to visit lots of elderly people in various kinds of sheltered housing. The level of independence varies. For the residents that needed a lot of support, there were blocks of flats - usually one bedroom - with a resident warden, communal gardens and lounges, often with a meal service included in the communal dining room. Most retirement flat options offer a bit less than that, but still very safe for residents.
The flats usually have alarm cords that connect to emergency help.
No worries about maintenance or repairs.
They are not cheap, but IME worth moving sooner rather than later.

[Cuppasoupmonster]

I feel for you my grandparents were like this and like PP, I regret not having a frank chat with them before it all got out of control and spiralled into multiple hospital admissions due to nasty falls and an eleventh hour care home admission for my gran (dementia) while my granddad died on a hospital ward. Had they moved in earlier, not only would he not have had the fall but he would’ve passed away with his wife there surrounded by his things in vaguely familiar surroundings. He would also have been comforted knowing my gran was staying put and not subject to a confusing move without him.

But… they didn’t. He died on a hospital ward without anyone there, worrying about what would happen to my gran.

The stubbornness of a lot of elderly people not only causes heartbreak and stress to their family but also results in a lot of worry for them at the end.

[Bananasinpyjamas21]

To be clear I’m not suggesting moving her into a care home now! Or even that she needs a lot of care now, but she will soon and she takes a while to get used to things. I also, like a pp want to head off emergency scenarios, which she would find extremely difficult.

She has agreed to write down her health and care wishes with me, and I suggested talking to her GP also about this. But I don’t think I completely understand the options available. Sheltered housing is definitely worth a rethink, there is a scheme near her but places don’t come up very often, and she’s very adamant that she doesnt’ want to move again, but if this was a choice between care home and sheltered home she’d definitely take the latter.

She thinks she will be able to not go into a care home, and that she just stays in the house and goes into a hospice. But I just don’t think it works like that?

[Bananasinpyjamas21]

@Cuppasoupmonster that sounds utterly heartbreaking, I’m so sorry for you all.

[startingline]

My own mother stayed in her home until her death with a private carer coming in four times a day. She had about 36 hours a week cover for the last year and it cost her £800 a week. She had moved from a large 5 bed house with land to a small bungalow in her eighties, so the property was suitable for her

[Badger1970]

My Dad is currently in a hospice, and we're not sure if he will come out again. If he does, it will have to be a nursing home as opposed to a care home.

Just bear in mind the difference between care homes and nursing homes.... care homes are for those who need support in old age such as washing/dressing/eating etc, but there aren't nursing staff who can take care of medical issues. It may be worth looking at nursing homes as your Mum has got COPD, or ones that have both on site.

[MajorCarolDanvers]

Ideally she should remain as independent as possible for as long as possible.

Sheltered accommodation or assisted living would be a better first step than jumping straight to a care home. And she'd be more likely to agree.

[pinneddownbytabbies]

Does she have a stairlift? That would help with the problem of breathlessness going upstairs. It might also be worth arranging for social services to send somebody to come round and assess her home, to see whether there are any adaptations that can be made, to make her life easier. For instance, my MIL has had a slope to the front door, a downstairs wet room installed (basically in a cubby-hole but it does the job) and her bed has been moved downstairs. The dining room is now her bedroom.

She's further along in years and needs carers coming in three times a day, which she has to pay for.

[justgettingthroughtheday]

Personally I would do all you can to support her remaining at home for as long as she can. If she has capacity she may well be able to remain at home until she dies.
Things I would do:

• find out her wishes and organise POA for her so you and your sister can carry out her wishes if needed.
• look at her home from a practical point. How many rooms downstairs? Could she if needs be have a bed downstairs? Does she have a stairlift fitted.
• I would arrange for carers to come in and support her if needed. They will assist her with day to day tasks.
• organise for a cleaner to come in once a week.
• encourage her independence and movement. Keeping her as mobile as possible will help her keep her chest clear.

I have been a carer for more than 13 years. I've known many people remain at home and never go into a care home. I've also known a lot of people who live downstairs and never go upstairs. There's nothing wrong with this.

But I would keep her home as long as you can. Even the best care homes are not your home. And if she ends up in a less than brilliant home she could be really unhappy

[Nat6999]

Would she accept moving to a bungalow? If she isn't managing at home you could discuss an OT assessment to see if she would qualify for a council or housing association bungalow.

[Bananasinpyjamas21]

This is very good advice. I think if she could stay in her own home she would be happy, so I would definitely support her with that. I looked into stair lifts, around a bend they are 3/4000 I think. Have got a charity to check the house who put in stair rails, but not an OT. There is an online ‘OT check’ that I’ll use.

I don’t know what kind of nursing care she might need, as COPD progresses, are we being realistic can someone live on their own downstairs when their oxygen levels are very low? I just don’t know.

[Bananasinpyjamas21]

@Nat6999 I tried to get her to move to a bungalow, but she moved last year to this house, sister was all for it, but it’s too big, big garden etc. It’s unfortunate but it’s done now.

[toomuchlaundry]

Have you or your sister got POA?

[AlwaysLatte]

I really sympathise, I've had this same issue. Dad didn't want to sell his 3 storey house, or have outside help (also COPD and other health issues). We tried to persuade him to buy something smaller but no go. So we made a micro environment downstairs and had a rota of family and neighbours, eventually persuaded him to move in with my sibling 'temporarily' (still didn't want to sell his house). I went to see him every lunchtime and took him to appointments and organised his medication. Then we got carers in morning and afternoon, so he wasn't alone much. If they won't downsize then there's not much you can do. Very very difficult.