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?
