My husband of 75 has had PD for 24 years and is in the advanced stages. Can’t walk far, difficulty feeding, big balance issues/lots of falls (some with fainting), lightweight PD dementia which seems to be getting worse now. We have no family, and pay for daily morning carers, and for two mornings a week of them (on those days I’ve spent £165 before I leave the house). I’m struggling to cope emotionally and am facing the prospect of having a live-in carer (we’ve done that before for short periods and it’s not all honey) or putting him a care home privately funded at £2000 per week with me starting life over on my own, except that I’d still have to be his advocate/pay the bills/visit regularly, so no new life really. He’s been refused CHC, even the nursing element, twice in the last two years.
Because we know exercise is second only to medication for PD, I pay for 3 private personal trainers a week, but his mobility is now so poor, I’m wondering whether to continue with it. However, if he becomes confined to a wheelchair (a care home would do that) he will lose the use of his legs.
I’m deeply resentful that my husband’s disease has deprived me of my retirement years, and his, and now the dementia is worsening I’m struggling to be kind and considerate (which I do anyway, being truthful). He’s become a danger to himself and can’t be left on his own for any length of time.
He did a lot of welding in his working life without regard for health and safety and I feel I’m being made to pay for that. We’ve been together over 50 years, have no children and have worked hard. He was a kindly, down to earth, rock of a person, and we were a team. But things are so so different now.
I attend local carer’s groups and from talking with others am impressed by the support services (get togethers with transport provided, medical, emotional, management and financial tips) provided for people with MND and cancer. The support we get for Parkinson’s is very poor by comparison. We see an Addenbrooke’s neuro once a year and he has as good as said there is nothing more he can do for my husband medicinally. He has never been very proactive in attitude. I’ve told him things about PD research/things in the community he doesn’t seem to know! We only see an NHS physio if we specifically ask to see one. They visit and show my husband exercises then tell him to do them in his own time… His huge apathy means he doesn’t do it. We’ve had occasional visits from OTs, again mostly on request, who want to provide equipment that would turn our home into a cross between a mobility equipment warehouse and a care home.
There is a local PD group who meet at a venue monthly, but they seem to talk about everything except the disease, plus my husband doesn’t converse and when he does his speech is so quiet, poorly constructed and mumbled no-one can hear what he says. He also has toiletting issues which make going out for any length of time difficult.
My husband has no interests, is not a highly literate man, can’t cope with using a smart phone properly or a laptop, and due to apathy can’t amuse himself other watching TV (he can’t master streaming)
The latest PD newsletter talks about psychological support - my husband has never been offered that, nor have I. He sees a PD nurse once a year, and if I ring them for advice I’m triaged and often have to wait several days before I get a call back. There is no emotional support. People just say ‘get out more/look after yourself’. Under pressure from me his neuro recommended a private psychologist. After describing my husband’s mindset and capability by phone he was honest enough to say, I don’t think my sessions could help your husband and I don’t want to charge you.
I feel very trapped and like my life is over.
