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?

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 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

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.

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!

Typo - 🙄AI should read all!

I looked into stair lifts, around a bend they are 3/4000 I think Less if reconditioned, well worth considering as most stairlifts are in use only about a year

I second the recommendation of going for a reconditioned stairlift. That’s what my parents had installed and it’s still going strong six years later. Just have to make sure the batteries are checked/serviced - we didn’t realise and they just failed but after they were replaced all is well again.

My mum has COPD and it is getting worse. She has other serious conditions too. It all falls on my sister too. Mum regularly stays with my sister when things are particularly bad.

The trouble with breathlessness is how scary it can be and it definitely impacts my mum mentally in the sense that she always wants to speak to my sister before and when speaking to any kind of health professional and she won't try to do anything she thinks is hard and I don't press her. My siblings tend to race ahead to the next step, but sometimes it is better from my mum's point of view to just react and make sure she remains in control.

I just feel bad for my sister who bears the brunt of it, but equally she gets to be closer to my mum who is also not interested in living with me or my other siblings.

As people have suggested, there's a lot you can do to help her stay at home.

From experience, I would use this time to search out a couple of residential homes and nursing homes that she'd like, and try and get ahead of the curve. Their needs can change really quickly and it's so much harder to make decision in an emergency situation than to have a previously thought out plan that you can put into action. At least if she has a fall or an illness and needs short term care or even Ionger term, if you already know where you'd like her to go, it will make the whole situation less stressful. Do not think you'll be able to rely on the assistance of a social worker because, honestly, they're not that helpful (being polite there!).

Get POAs done asap if not already.

I would look into a companion type carer. Often self employed carers they are a helping hand in terms of errands/ bins/cleaning and companionship. It's easier to get someone to accept one person will be coming on a daily basis, rather than the hodgepodge of carers sent from agency.

Is your sister really too busy or does she just not want to commit to it? If your mum is 83 then your sisters children are presumably adults now?

This is all really great advice. I do get that I might be pushing to ‘organise’ everything too early, when in reality there are so many possible scenarios.

Part of this is because I find it very difficult to talk with my sister. She is very defensive that our mum is ‘hers’ as it were, emotionally, but in reality does not like spending time with mum. Her work is very busy and she has a lot on her plate, but she also wants to be ‘in charge’ of mum. She is pushing mum to go into a care home.

Because I talk to my mum a lot, then I see all kinds of small things that she is needing help with, like repairs to the house or putting her heating on. My mum hates to complain especially to my sister, so won’t say if anything is hard. Shes’ not on oxygen yet but not far off. Refurbished stair lift sounds like a great idea! Also POA, attendance allowance and try a carer even for odd jobs like getting her milk from the shop.

@Bananasinpyjamas21

I posted earlier - but I really sympathise and recognise absolutely everything you are saying. My sister gave me no help, but I completely get where you are coming from in seeing all the little issues when you are in constant contact, which others aren't aware of. I do think a POA is a matter of urgency. At the moment I believe they are taking 6-7 months to be registered and they can't come into effect until they are, so I would crack on with that urgently. I did everything financial for my Mum latterly and we'd have been stuffed without the POA.

My Mum also had a 'cleaner' twice a week, who was wonderful and much more like a 'home help'. I had to put a lot of input into helping my Mum stay at home in spite of her having lovely carers twice a day AND her 'home help' and I was exhausted - without the home help, it would absolutely not have been possible to keep her at home until she died. So, if it can be afforded it would be a very good idea

Also - with regard to the Attendance Allowance, probably be a good idea to get help from Welfare Rights/citizens advice people etc. to fill out the form. I got it first time for my Mum, but many people don't, because older people minimise their problems. For example they will say they don't have problems with dressing themselves - when actually they can't deal with buttons/zips so they buy loose clothes without buttons/zips, so, actually, they do have problems!! I filled the form out for my Mum absolutely 100% truthfully - and her comment when she read the application was 'You make me out to be a poor old soul'. So just a bit of helpful ( hopefully) advice.

Good Luck OP. It is so very hard when our parents reach this stage in their lives

Thank you so much @Silvers11 that is such good advice. I’ve already filled out a lot of the attendance allowance form, it’s kind of brutal isn’t it! I think what helped me fill it out is ‘what can’t my mum do compared to someone without copd’ and it’s actually quite a lot! Or what can my mum do but it takes a very, very long time and is very difficult. Mum of course is against me claiming for anything! But in reality she’s not got a lot spare. I will get onto POA, what might hold it up is healthcare wishes and mum being happy with that which probably means discussion with the doctor.

I would be very happy if my mum moved in with me, I have the space for her to make a downstairs bedroom, my DD would love her being around, I work from home and I enjoy her company. I’ve asked her a few times. But she won’t, she feels loyal to my sister. So I just have to respect that but I won’t lie it will be quite hard for me to see her struggle and not be able to pop in every day.

It took nearly 3 months for the AA to pay out, just to warn you - and that was only because palliative care sent in a special form. I would hate to add up how many hours I've spent on the phone to them.... and yes to the other PP suggestion of POA. Dad fell ill too quickly for us to do this, and it's made things so much harder.

Thanks @Badger1970 I was thinking of sending the AA soon. She’s due a lung test though - hasn’t had one in a while - do you think I should wait until results of this? (Even though the last one was very low)

My friend was adamant he didn't want to go into a care home. But he had no one able to care for him. And just wasn't coping at home. So it was the only option. He settled Very well, and is quite happy devouring books, quicker than I can get them to him!

Get onto the POA quickly. DHs mum is now profoundly disabled and can't do anything for herself and was totally reliant on FIL. We got POA sorted for FIL a long time ago but he was reluctant to sort it for MIL as he was convinced she would die first. In April he was told his prostate cancer had spread and told 12-18 months. It took a while to sort out the paperwork due to her communication issues ( can't talk , read or write) and it was sent off at the beginning of June. Approval was received 2nd week in December.

In her situation you might look at:

Stairlift
Grab rails around the house eg at front door, in shower
Wet floor shower (preferably downstairs)
Shower chair
Bed aids to help her get in and out of bed
Those aids to help put socks on
Grabber thing to pick stuff up from floor
Trolley for carrying cups of tea/plates of food from kitchen into front room
Tesco delivery of food if she isn't already doing that
Falls alarm
Ring doorbell so she doesn't need to go to the door every time
Appropriate exercise - whatever is good practice for COPD
Help getting to social events eg taxi to church/bingo/friend's house etc - you do not want her to withdraw and start spending all her time in the house because she will get less and less mobile and it's a vicious spiral.

Power of attorney
Cleaner if needed
Contact Waste Services at the council and ask if they do assisted bin collections - you can go on a list where the bin men will come up to collect your bin and you don't have to wheel it down to the gate.

Can't think of anything else right now!

My mum had copd. It got worse. She couldn't walk anywhere in the end. We bought her a wheel chair for leaving the house e.g. appointments, and social services funded a stair lift. I arranged to have her groceries delivered. She died of the copd. Could she move to a bungalow? If she lives downstairs, is there a downstairs bathroom?

Some good advice I received when completing the AA application form was to think about and describe my dad’s problems on his worst days, not his best days. That really helped focus what I wrote.

Oh and Wiltshire Farm Foods have proved to be a godsend!

The difficulty for many people in deciding what they want is that they have no idea what’s likely to happen to them, what they are likely to be able to manage or not, or what the options are.

With COPD it is likely she will gradually get less able to get around - so she will need a stairlift or a bedroom and bathroom on the ground floor, help with things like shopping and cleaning. She may need oxygen all the time, and a machine to help her breathing especially at night. She is also likely to get chest infections over the winter, likely resulting in some hospital stays. She may also have heart problems. However there is no reason to believe she won’t be able to make her own decisions.

Does she have money to fund her own care (care at home or a care home) or would she be dependent on the state? If state, then she is more likely to get care visits at home unless she needs significant nursing care (not personal care). If she is self funding then it’s up to her to decide what she does.

I would say it’s worth discussing what you should decide for her if she does become unable to make her own decisions - ie if she develops dementia. If that was the case would she really want you to have the weight of caring for her, or does she think residential care would be better for everyone?

I would not move her from house to sheltered accommodation as they do not offer much, but extra care housing with on site restaurant, on site care if needed, help with housework and laundry, social activities, sensible accessible flats with rails and level access showers etc.
Buying a curved stair lift recon will not save much as the rail has to be made specifically for the stairs so only the carriage you would save a bit on.
I would suggest sitting down with your mum and saying you do not want her to be forced into a long term decision about housing on the back of a health crisis but need to prepare.
She should have an advanced directive about her wishes.
She should have POA for finances and health and wellbeing sorted out
She should be asked her wishes about adapting where she is, moving somewhere easier to manage whilst she can still cope, moving in with one of you when time comes.
If she could exist on ground floor of her house she may not even need to move.
These are all her decisions whilst she has capacity so try and talk to her. Good luck x