Elderly carer, new to the forum, struggling, more than a bit

Hi, my name is David, I am 76 years old and the sole carer for my wife Anita, who will be 74 next month, we have been married for 54 years & have 2 children & 5 grandchildren. We also have two dogs.
My wife has suffered from type 2 diabetes for 20 years & has multiple conditions as a result of this. Most significant is heart failure, following several heart attacks and hospitalisations over the last 15 months. My wife also suffers from macular edema and requires injections to both eyes every six weeks. As a consequence of the heart failure, my wife has limited mobility and requires a stairlift at home & a wheelchair outside the home. Additionally my wife has recently been diagnosed with OCD & hoards clothes.
I am in good health, both physically & mentally, apart from some arthritis in my hip. I was diagnosed with prostate cancer in 2005 & had my prostate removed. In 2015 I suffered a relapse & underwent radiotherapy. Since then I have remained in remission, although I have six monthly PSA tests.
My wife, who has mental competence, I believe, despite some psychiatric issues, will not allow me to employ anyone to help with her care or help with the housework, nor to allow our family to help me.
We have a large 5 bedroom house, & I struggle to cope.
At the moment my greatest challenge is maintaining my wife’s mental health, as she is prone to depression, particularly in the winter months.
Several years ago we made out our wills and took out mutual LPA’s for finance & health & social care.
My wife is registered disabled.

Why let your wife force you to do the cleaning etc.?
If you love her enough to care for her, she should love you enough to let you have help.

Dear Bowlingbun, that is a question I have asked myself. The answer lies in the ocd/hoarding, she is ashamed of the clutter, yet unable to let go of it. Hence the aversion to outside help. The OCD is irrational, but my wife is well able to understand information, has excellent memory & therefore mental competence. It’s a kind of catch 22 situation. Our GP is aware of the situation, & the clutter also constitutes a trip hazard, but he doesn’t seem to want to get involved.

I sympathise, it took me a year to empty my hoarder mum’s house after she moved into residential care - which could have been avoided as she wouldn’t agree to letting her stuff go so I could arrange for an ensuite disabled friendly bedroom. All very sad. Now I realise that really it ruined my life too, although I didn’t live with her. It was so frustrating.
I wish I’d had a blazing row years ago, and laid down some ground rules for my continued support.

You mentioned she hoarded clothes. Are they hung up in wardrobes tidily, or in boxes, or ???

Do you have a “Man Cave” room in the house?
If she is embarrassed about the state of the house, then it’s time she admitted that and had a carer/home help to do one room at a time.

It’s YOUR HOUSE TOO!!

Dear Bowlingbun, haven’t logged on for a while. Thanks for your response. My wife’s clothes have filled 8 double wardrobes, plus four additional double clothes rails in the garage, dozens of boxes and now hang from every door, cupboard, and wardrobe as well as some bunk beds, bought to put up our grandchildren. They are all as new. I have sought help from from my GP, who has arranged for a mental health nurse to contact me & I have arranged a telephone appointment for Friday. I don’t have a man cave but I have a single bedroom, with a door I can shut and where I have turned the heating down. I like a cold dark bedroom. My wife sleeps irregular hours & has a large TV in her bedroom.
You understand the situation due to your own experience & the choice I will have to make after Xmas is whether to act according to her wishes or in her best interest, as the two are not the same.
I know I sound pathetic, but I am an 18 year army veteran & a retired managing director, quite bright & very resourceful in all other areas.
Tomorrow is another day.

NOT pathetic!
I’ve had a rather unusual life, lived in Australia for a few years, shipped steam engines round the world, mortgage free at 24. Somehow ended up running a national lorry club for 20 years… you get the picture??
It took counselling when I was 60, newly widowed and newly disabled, that made me realise that I was still behaving as an obedient child as far as mum was concerned, that as an adult I could say no to her, and I did have a right to do my own thing. Years too late I realised her hoarding had ruined not just her life, but mine too. In 34 years of our marriage we never ever ate a meal there, but she had over 60 dining chairs, 10 dining tables, sideboards galore. You can’t deal with this on your own. Ask your GP to refer you to a private counsellor, so you can talk things through over a few sessions, and work out an action plan.
You should not be expected to live like this.
Stop all her access to any more money.
Take photos of each room.
Is there any system at all to it?
What gap in her life is she trying to fill?

Realistically, your wife cannot stop you making your home habitable again. If she needs a stairlift, you could even disable it, call in a removal company and put everything into storage. The only time I ever saw my parents large front bedroom empty was when we had finally emptied it, ready to hand the keys over. They moved in when I was 16, I sold it 50 years later, they had been doing it up all that time, never finished it.

Just remembered something. Google Diogenes Syndrome.

Thanks, I have a telephone appointment with a mental health counsellor booked for tomorrow & I have booked an appointment with our solicitor to ascertain my legal position. I will also check out Diogenes Syndrome . Thanks for the help.

David my heart goes out to you. I have just googled Diogenes Syndrome and yes, fits my husband perfectly - the intelligence/lack of shame and the hoarding and aggression.

I hope you can get some help/support from the Mental Health Team. My husband has ‘mental capacity’ District Nurses asked GP to assess which he did over the phone basically asking him date and name of PM plus to count back from 100 in 7’s. Pretty facile for someone who was once MD of a PLC…no point getting skip and help moving the old computers/printers/DVD/Videos as husband will have them arrested for moving his property. I cannot do it alone as weigh 7st and even at 82 and frail, husband is 2st heavier.

I really do wish you the best of luck.