Mum 83 refuses care home but what are the options?

Typo - 🙄AI should read all!

My elderly neighbour had COPD and lived in his 3 bed semi to the end, with a stairlift District Nurses (?) visiting and dropping off oxygen very frequently. His family chose not to have home carers, but split morning and evening visits between themselves. They were very willing but it absorbed so much of their lives when some still had small children themselves. Only really possible if not working I think.

My own DM's situation is different. Middle stage dementia and living in her own small bungalow. She bought this 20 years ago when in mid 60's and it felt early to downsize, but it proved a wise choice as is now perfect for her limited mobility. Sheltered accommodation would have been even better.

Things that help us support her from a distance are:

LPOA -health and welfare and financial. Set up now and only àctivate when needed. This could be years down the line or next week if your Mum is suddenly very ill or has an accident. For your Mum's reassurance she can write in the point st which she feels they should be used. For example if a doctor advises she is too ill to act for herself. Also get her current GP surgery to give her a form to complete so you can speak to them about her medical needs/care/test results/make appointments etc.

Local authority telecare service - they can provide fall wrist bands and pendants. We were also given a free automated tablet dispenser. There's a small weekly or monthly payment for the monitoring of the wristbands etc that can go out of your mother's account on direct debit. You and your sister won't have to buy anything. Later you can add chair/bed/movement sensors etc. They also do fire alarms connected to a call centre. All in with the price. For my mum it's £5 a week for Al, the telecare she has.

They won't do security cameras due to privacy/data issues. But with your Mum's consent you can put one in for example the hall and view/scan the area only when needed - if you think she's had an accident or fall maybe. Ours doesn't record so there are fewer data concerns. It's just drop-in (live) and also has a loud speaker so I can talk to her if fallen/lost phone. You could do something similar with Alexa. Our system can covers smart light bulbs and plugs so we can switch lights and heaters on remotely. The app was free and just buy the camera (£40), plugs (£8) etc on Amazon.

Age Concern - fit free grabrails etc. Also installed a free keysafe. This means you can give the number to emergency services or later on, carers. If she has a fall or illness, they're not delayed by smashing the door off to get in.

Carers up to 4 x per day. It might be too early for this yet. It's not a perfect system and standard is variable. Before we got to this stage I wish we'd investigated a cleaner and one of the meal delivery services that have replaced meals on wheels. Some deliver a hot lunch with 15 min welfare check and pop a sandwich in the fridge for tea.

Bins - contact your local authority. They can send you stickers that mean the refuse collectors will collect them and return to normal place. She doesn't have to do that herself at all.

All this won't work for ever but should mean that you and your sister are dealing with less day to day support and have more time to help her socially, or with real emergencies. Good luck!

My Father in law had COPD and was in oxygen tanks for the last few years of his life. He died at home. It is perfectly possible to live at home. But what makes sense is getting any adaptations needed now. So a downstairs shower, grab rails, those kind of things.
Unless you are paying privately for a very posh care home, most care and nursing homes are full of people with dementia or at the very end of their life. They are not good places for anyone without dementia.
Does she go to Breathe Easy exercise classes and support groups? They run very gentle exercise classes for people with severe breathing issues, you can sit doing exercises if you need to. But they would help to ensure her lung function is as good as it can be. The support group would also help and people who are further along the journey who attend will pass on their wisdom of things she should do. She may be more likely to listen to people who have COPD like her.
Would she use a mobility scooter to get out and about? Does her belongings need reorganising so she has everything she needs when she comes downstairs and never has to go back up?
And yes lots of elderly people live permanently downstairs. But simply being breathless climbing stairs is not a reason to live downstairs yet.
There is no point exploring care homes. She may never need to go into one and even if she does, the one you like may have no vacancies when you need it or may have changed management.
I would also be ensuring that everything is being done that can be to treat her COPD i.e. if appropriate inhalers, medication, physio, heart function checks, etc. But it obviously depends what is causing her COPD. COPD is very common as people come towards the last years of their lives.
In terms of outside help, usually the first help people would need is housework and laundry. Especially with COPD, tasks like hoovering can be hard. But if she is managing this, do not encourage her to give them up too early. Being as active as she can be will slow any progression.

I understand where you are coming from, I really do. My 93 year old Mother was exactly the same ( she died in the summer sadly). The thing, is that while I understand you want to be prepared about 'options', reality is that there are too many things that might happen for you to be able to plan like that.

A previous poster said you were putting the cart before the horse and I think that's right. I suggest that you ask for a Social Work Assessment of her current needs - they provide a lot of aids, including personal alarms for free or for a small fee. With my Mother, as she got frailer, she had more need for disability aids and then needed carers twice a day, but everyone's needs are different and you do not know exactly how your Mum's increasing needs are going to show up as time goes on

I do agree with a PP that perhaps looking at some sheltered housing without stairs would be a good thing to look at - but your first stop should be asking Social Work for an assessment of her needs, as you may find that very helpful

Social Work will pull out all the stops to ensure that people can stay as long as possible in their own homes ( it's cheaper), so if your Mum insists she doesn't want to go into a home there isn't much you can do about it

is she on oxygen therapy?
have you discussed with her clinicians? They will have lots of experience with this. I think you need to think about your aim here. Is she able to handle her medication? Is she able to clean and tidy the house? Is she able to take care of her personal hygiene? Can she phone for help?

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.

Have you or your sister got POA?

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.

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

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.

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.

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.

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

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.

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.

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

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.

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.