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How to help relatives negotiate ageing and disability

(15 Posts)
Granmarie123 Sat 08-Mar-25 13:16:08

Hello: This is complicated, but I'll try to be clear. And be as brief as I can.

I am shocked and worried about the mental and physical state of my older brother and his wife, both aged 75 and no children. I am 68 and have a husband and 3 grown-up children, who need my help and input from time to time, in what I think is a healthy way.

My brother has been disabled since childhood as a result of an RTA: he is missing an arm. This happened in the mid 1950s when there was little or no understanding of the psychological impact on this on a small child. The whole family was traumatised by the inept ways it was dealt with. Nevertheless, he did well academically at school and graduated from a prestigious university. A combination of his difficulty in dealing with other people (as a result of the harsh treatment and outright bullying he experienced, including from family as he grew up ) and economic circumstances at the time, meant he didn't have the glittering career he perhaps deserved, although he worked in supportive (to others) academic roles for most of his life, but without job security and the status that brings. His wife is similarly intelligent but also poor at dealing with other people (again a result of childhood trauma). They made the most of their lives, travelling a lot, doing cultural things but they have always been very socially isolated and they are both unable for physical (him) and emotional (her) reasons to deal with the practical side of life. Things get broken and they just put up with it. They rarely ask any workmen to do jobs in their house and unfortunately, when they have done this, the service they received was often sub-standard, They just accept this and feel sad and misunderstood.

They have both had several serious illnesses in the last 20 years. He recently had a stroke which has left him with limited mobility and I think he has recovered as far as he can: is able to get around his house with a walking stick, but needs carers twice daily to get him up and put him to bed. His wife has worsening rhematoid arthritis and her mobility is very limited, as is her physical strength. They both look very frail, in a sad contrast to their previous good health: they used to walk miles in local countryside and get around locally, nationally and internationally, on public transport. Which is all commendable.

Anyway, they are increasingly sad about their situation and his wife blames everyone else, e.g. 'I expected the NHS could do more about my health conditions than just give me medication.' She is very unscientific and doesn't understand either her conditions or their treatment and endlessly worries that she has been prescribed the wrong meds/they will interact badly with each other/ the system is out to get her. She is a little paranoid, I think. He understands more about his health, but hasn't engaged with the physio he's been advised to do - his wife just criticises him about this but doesn't do anything to help him.

The other problem is that their house is very cluttered and moving around it, even for someone able-bodied is very hard. There are so many trip hazards, including electric flexes (they won't accept they could get an electrician to install some more power points) and their living room is cluttered with 8 large cardboard boxes of the medical consumables his condition needs. She says she resents having to take this equipment upstairs for the Carers and feels as if she lives in a hospital, not a home. I do understand this. I offered to move the boxes upstairs to their spare bedroom and help to organise the contents so she could easily get out what was needed each day but she refused, saying there was no room in their spare bedroom and the only solution was for them to get a bigger house. This is impossible. She won't accept that moving some of the huge number of clothes into better storage (I could see 50 sweaters for instance) is do-able, even though I'm happy to do it for her. All helpful suggestions are stone-walled like this. They won't move any of their books on because they say charity shops just burn them and that's a waste. I think you get the idea - I could go on but I won't.

What they aren't realising is the precariousness of their position. I have some medical/care background and have professional experience in making life easier for disabled people. But I don't seem able to help them.
I worry that a fall in their house is extremely likely and could spell the end of any independence for the, If he needed to use a wheelchair, she isn't strong enough to push it. She just says she is careful to avoid falls...if only it was that easy!
The way they are living is making their conditions worse and they don't accept that there are things they could do to improve...the house is also dirty and dingy. I appreciate they can't do housework easily, but suggesting they get a cleaner was met with a flat refusal from her. I think my brother would like to live in more cheerful and practical surroundings, but she seems to almost want to punish both of them, by refusing to be proactive and accept help.
If they become more disabled or when one of them dies, I wouldn't be able (nor would it be good for me) to become their full-time carer. We don't live near each other, my home isn't suitable, I do have my own life to live etc etc.

I think they have understandable mental health problems /trauma and I feel so sad about this and desperately want to help - without taking over. I do respect their autonomy and desire for independence, but they aren't going about it in the right way and are heading towards disaster.
Any advice please?

keepingquiet Sat 08-Mar-25 21:54:52

There isn't very much you can do. You have offered lots of solutions and have been turned down. You sound like a very caring sister but your brother has a wife and it sounds like they have been together a very long time. This is how they have chosen to live and it sounds as if they continue to make their own choices.
No one is asking or expecting you to be a full-time carer, as you put it. You say you have your own life to live and it sounds like they are giving their permission for you to live it.
Maybe they are headed towards disaster, but maybe they aren't. Leave them be.
You do come across a little judgemental of their lifestyle, and maybe this is why they don't want to listen to you.
Do they have neighbours who look out for them? Maybe you could give them your details to contact you in an emergency, but it sounds as if they are getting help with their medical problems. They have carers coming in too.
My advice would be to keep up the social contact but otherwise let them be and enjoy your own life.
Getting older and more dependent has challenges of its own, so just enjoy their company if you can. If you can't just leave them alone.

Cabbie21 Sat 08-Mar-25 22:17:14

Very wise advice.
I am reminded somewhat of my own parents. Their home was dreadfully cluttered, making it hard to move around. Dad used to be good at DIY but as he aged, he couldn’t do what he used to do, but wouldn’t get tradesmen in, so repairs were not done. Their house was flooded and twenty years later they had still not made good everywhere. Mum eventually claimed Attendance Allowance, but didn’t use the money to pay for extra help although she struggled with arthritis. I didn’t live close by and had a demanding job so could only help out occasionally. They looked after each other and had good neighbours and rarely complained.
Eventually Dad had a stroke and died aged 85. Mum had already said she would go into a Home if he died first. She had no idea about the cost but Dad had an insurance which paid out. Mum had a new lease of life in the Home, with six good months before she died aged 92. It all worked out for them. There was no point wringing one’s hands and worrying about them. They were happy with their lifestyle and had each other.

I hope you are worrying needlessly about your brother and his wife. They may be just as happy in their own way.

Whiff Sun 09-Mar-25 07:16:17

Granmarie sadly there is nothing you can do. Unless they want and accept help they will carry on as always . They have to realise they need to change but from what you have said they won't.

So try not to worry about them and concentrate on your own health and your family.

Granniesunite Sun 09-Mar-25 07:48:19

Your love and concern for your brother and his wife is clear to see throughout your post. I had a friend who was in the same situation and it was so upsetting not to be able to help her.I understand where you are coming from.

My friend was quite religious and it was her parish priest who persevered so he was the one who managed to get her help it took a very long time.

All you can do is visit when you can and keep communication lines wide open. I wish you well. They are lucky to have a kind and caring sister /sister in law walking this road beside them.

LaCrepescule Sun 09-Mar-25 08:06:31

I have a brother younger than yours who causes me great concern due to his poor mental and physical health. He’s single and has no friends. I’ve done all I can to support and encourage him.
All my suggestions fall on deaf ears and I’ve accepted that I need to stand back and the decision to try and help himself needs to come from him. I’m there for him of course because I love him but I’m powerless to make him change his attitude.
I suggest you change your approach. They won’t change unless they want to.

Granmarie123 Sun 09-Mar-25 10:01:39

Thank you for all your replies. I understand why some of you thought I was being 'judgemental' about their lifestyle, because I was! I judge their lifestyle to be one of inviting things to get worse!!! people have to make lots of judgements in their lives - it's an adult thing - and it's a shame that making a judgement or having an opinion is so lazily seen as a 'bad thing'. It would be bad if I said they were as they are because of being stupid/lazy/thoughtless or any other insult, but I think they are victims of their own circumstances and experiences.
What really worries me is that are not happy. They are both depressed. They have few friends, no children and are often difficult to be with. You have to understand them make allowances for them and be persistent. I have known them for many decades and many other people, including some of their family, give up on them.

loopyloo Sun 09-Mar-25 10:08:16

With regard to your brother is it possible he is on the spectrum? It would go with his history?
And your sister in law does sound depressed and a bit paranoid.
Perhaps a discussion with gp might help?

loopyloo Sun 09-Mar-25 10:12:09

How far away do they live?
I think a bit of ongoing "interference" from you might be worth a try.

loopyloo Sun 09-Mar-25 11:12:09

Granmarie, there are other threads where people talk about our changing values and decline in moral values.
You show you are a caring and supportive person and I think you should continue to try and help these two. Don't quite know how but chip away at it. It does become a safeguarding issue. Also some people have a knack of building connections. The right cleaning lady might be able to gradually help.
Perhaps contact Mind for advice.

25Avalon Sun 09-Mar-25 11:48:36

I’m afraid they aren’t going to listen. Could it be because the suggestions come from you? Is there a care plan? The carers could refer back to their supervisor and perhaps an OT could come in whose advice they may listen to more readily. At the end of the day it’s down to them. My granny used to leap in front of cars waving her white stickers expecting them to stop immediately. When mum,her dil, warned her of this her response was that if she got run over mum would be able to say “I told her so.”

Grandmabatty Sun 09-Mar-25 12:16:44

Does anyone have poa? They made need reminding that if one of them has an accident or is taken ill, matters will be taken out of their hands, as I know to my cost. Would the fire service visit and point out all the hazards? I feel for you as I don't think there's an answer when both are quite intransigent

loopyloo Sun 09-Mar-25 12:44:02

Think you need to talk to whoever organises the carers. Presumably he has a social worker involved in his case.
Hoarding is a recognised problem.
Not sure SiL gets her meds right. Does she have a dosset box.?

Hithere Sun 09-Mar-25 12:49:27

You are a good sister for trying to help them

This situation is compounded by the decades of trauma of both spouses - there is nothing you can do unless they want to help themselves

The poa is good advice

annodomini Sun 09-Mar-25 13:06:04

Granmarie123. I fear you are hitting your head against a brick wall. Your brother and SiL aren't going to change now as they have created their own situation - and. as you say, they don't realise how precarious it is. If they can't, or won't, take themselves in hand, it's not - or should not be - up to you to take them on. Their clutter is a form of security for them - the piles of clothing, the vast quantity of books, probably symbolic of a past they cling to.
There is no reason for you to feel responsible for them. You have your own family and your own health to consider. They won't accept help or take advice. Keep in touch, let them know you are here for them. Do their carers have you down as next of kin?