Is all care just "palliative" from here?

My dad died with (of?) Vascular Dementia (frailty of old age on the certificate). He’d had his pacemaker battery changed about 4 months beforehand. I did not have health POA so could not stop that but I did query with the consultant how bad he’d have to be before they wouldn’t do it (answer: certainly bedbound would be needed). I knew my Dad would have opted not to have it done. Anyway, at some point in the process he punched the surgeon. Apparently this is not uncommon.

The progress of his Vascular Dementia had quite large steps and was more rapid than I understand Alzheimers is. There were 14 months between a sudden downturn (that took him from walking miles each day to wheelchairbound, incontinent and confused) to his death.

My mum died of/with vascular dementia - she had a catheter for the last 8 months of her life. It’s not unusual.

Im so sorry - it’s a grim disease 😢.

PSA if significantly raised would mean prostate cancer. Not necessarily that you would treat but if he developed a lot of pain it would be a useful pointer to help type of pain control etc.

Just to say - is your power of attorney financial or health? They aren't the same and sometimes people assume they are.
I'm very sorry to hear about your FIL. It is a fucking awful disease.

I work as Community Nurse Practitioner and get called into care / nursing homes each and everyday because the home have a concern about a resident. It is really hard to tell at times what is going on with them as they are not able to verbally communicate. They may be quieter than usual, off their feet, off their food. I would never want to see anybody suffer but it really does raise the question of treating patients who have zero quality of life (doubly incontinent, no comprehension, nursed 24/7 in bed) it is so incredibly undignified, cruel and heart breaking for those who love them.

I'm going a little against the grain here. My father is living with prostate cancer. He is early 70's, no dementia and very fit (now he's had appropriate treatment, he can hike and cycle for miles again).

To give you a timeline of what happened to him, he was admitted to hospital with a DVT, a side effect of kidney failure due to the size of his prostate. He had a blood test (PSA I guess, but not sure) which identified prostate cancer. He was immediately given medication to reduce his testosterone levels; this is a monthly injection. He later had scans and a biopsy (which confirmed and identified the cancer), but he was started on the testosterone treatment immediately, and I would have thought your father might benefit from that? It's the only treatment my father has had, and seems to be working. It's (relatively) non-invasive, and pretty free of side effects. It has brought his cancer under control.

My father needed a catheter, and had one in place for a year before surgery to improve the flow of urine from the bladder. He now urinates normally. During that year he did have UTIs, which weren't much fun (one landed him in HDU) so they are definitely worth looking out for. I suspect your father wouldn't be recommended for surgery.

Happy to answer any questions about the cancer treatment - I'm afraid I can't help on the dementia side.

Sadly it does happen.

The gold standard of care for people with dementia definitely is palliative, or should be. That doesn't make all the decisions easy ones. Why do a blood test (painful) and discover perhaps he has a raised PSA, when the next step would have to be a scan that would be a noisy and scary experience for him, plus because he would struggle to stay still the images might not be clear enough to diagnose? Then the step after that would be a biopsy, painful and confusing again, in order to decide... not to treat? Because he would find radiotherapy very difficult to cooperate with safely, he'd be likely to be delirious after surgery for possibly the rest of his life...

Treat pain, yes, and make sure the team are using pain assessments designed for dementia. Antibiotics are another question, I personally think they are overrused but I'm not a doctor. They probably have a role. Avoid hospitals at all costs. Maximise music, laughter, peace and touch.

My mum died of vascular dementia in November. She had been diagnosed 6 years earlier so lasted a long time. I can say the last 2 years of her life were a living hell. Pressure sores, doubly incontinent, she was home with truly wonderful carers but the agony and stress on me and my dad was intolerably cruel. I honestly prayed for her to go snd the day she died was a relief. I am so sorry you are going through this. My honest hope for you is he goes peacefully snd asap as it just gets worse and worse. Sorry but it's the truth

If he does have prostate cancer then inserting & removing the catheter might be extremely uncomfortable for him. Repeated removal & reinsertion increases infection risk enormously. He is bound to have a long-term one in place.

My DM has vascular dementia and Alzheimer's. She has been on palliative care for over ten years.

It's a living hell for her, DSis and me. However, it is the correct decision. She gets antibiotics for infections that cause her pain and pain relief as needed. As said upthread dementia is the pits.

I lost my dad to dementia with hindsight we took him for test and treatments over the years thinking we were doing the right thing

looking back we weren’t only thing it did was buy him more misery pain is the only thing I would treat

Sorry you didn't say he was in a care home but I presume he is? There would be nothing stopping family having a chat with his GP if you're concerned.

Catheters will be charged regularly max of every 12 weeks and are designed for long term use. There is the increased risk of UTIs but many older people are susceptible to them even without a catheter in. Good catheter care by the home should be at the forefront of the home and monitoring for any change in his usual behaviour that could indicate he is unwell. It's really hard OP my sympathies, dementia is a bastard that robs people of any dignity and quality of life

Does he recognise that you’re husband is his people? My grandmother hasn’t been able to remember my name for about 10years even though we have almost always been living together but she knows that I’m her people. Name memory is fairly early on to go.