Is all care just "palliative" from here?

[Dustyblue]

I've just been reading through this section on MN; my heart is literally heaving for what you've all been through.

My FIL is 80, vascular dementia, we had to intervene (his partner was in denial) and bring him down to us from another state (we're in Oz).

He's had a rapid decline and is now mentally gone, no idea who anyone is. We did the usual things of putting up family pictures with name-labels to remind him- he can't recognise his wedding picture or say who his children are. You get the idea.

He's had a catheter in place for over 6 weeks now, and they don't seem to want to do anything about it. He's had urinary problems for years, wouldn't be surprised if he has prostate cancer. They won't even do a PSA blood test to check.

Am I right in thinking they're just trying to keep him eating, moving and comfortable? Is that why the doctors don't bother?

Not that I'd want him put through extensive treatment, no point, but is that why the staff are moving so slowly?

Nasty fucking disease this is.

He could realistically live like this for another 2-3 years, vascular dementia is a cunt of a disease but it doesn't mean health care professionals can ignore his discomfort or urinary issues

I think some of it depends on what the treatment would be if it was cancer. Say it was, or even a benign prostate he may need surgery (TURP) and the recovery could be fatal for him. Higher risk of chest infection, reduced mobility leading to increased frailty and acceleration of his decline in general. That said there is mediation that can help with prostate problems so a PSA test should be a basic non invasive measure of there being something wrong / treatable.

People with advanced dementia are unable to consent to medical tests or possible treatments / surgery etc . Often tests are not undertaken as no treatment could be consented to anyway .

Thanks so much.

We have Enduring Power of Attorney and all the necessary documents.

I think part of the problem is that he was admitted to the place just before Xmas. If anything admin-related is going to stuff up, it's at that time of year, right?

@Fedupofdiets Thank you, what you say rings true. AFAIK, a simple PSA blood test could tell them a fair bit about his prostate situation and is largely non-invasive. Then again, you probably wouldn't treat it, I'm thinking.

Then again, surely they can't just leave the catheter there for so long... risk of sepsis etc?

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.

No, he doesn't recognize anyone as his people now. He asked for a photo of me b/c he couldn't remember who his grandson's mother was. Etc etc.

No memory of who visited (we're still on daily visits).

I'm just unsure how 'hard' to go at the medical staff. They have their hands full already!

@Wishiwasatailor Thanks for telling me about your Grandma. So nice that she still somehow knows you're her people X

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

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.

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

Thanks again for your advice. 12 weeks is reassuring. Yes he's in a care home.

The problem has been catching the GP, bit of a skeleton staff over the Xmas/NY break.

We could potentially bring in our own GP, maybe, but not sure how bolshie we should go on this.

Thanks again, I appreciate the advice

Far out, that's horrible. Makes you think hey? I'm so sorry for your Dad and yourself X

I should say here, that my own beloved Grandpa was diagnosed with Alzheimers at age 80, and killed himself at age 83. He had older sisters with similar disease and saw what it did to them, and their families.

He drew his own line in the sand, whilst he still could. I'm very proud of him for that. Not every has that option though.

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.

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.

Thanks all for the replies, I appreciate your stories very much

@StopGo I cannot imagine 10 years. Surely that's not right?

I dunno, the world is confusing me at the moment.

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

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.

Sadly it does happen.

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.

Thanks for this. Everything you say rings true X

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.

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.