Is there anything more I can do for my dad?

[freshpotatoes]

My poor dad is waiting for a hip replacement and at his last appointment (over 12 months ago) he was told he has no cartilage left so it’s now bone on bone.

I attended the appointment with him and the surgeon was realistic. My dad has a complex cardiac history and also has Parkinson’s. He said his pre-op checks were ok and they would be willing to do the surgery but there were heightened risks. They also want it to be done at a larger hospital so an ICU bed can be on hand if it’s needed. My dad is in agony and said he’d be happy to take the risks rather than live in this kind of pain. He’s nearly 80 and they’ve said there’s a 15-20% chance of ‘complications’ as opposed to about 5% in someone without that history. I’ll support him in whatever he decides to do.

Since then, he’s deteriorated further. He can take a few steps to the loo and back but that’s it. He now needs to use a bottle to urinate as the pain of getting to the loo is too much. He’s on morphine/oral morph and the only time he leaves the house is when I can gently persuade him into a wheelchair as I think it’s not great for his mental health to be housebound.

They’ve said there’s no other pain relief he can have and once every few weeks I ring the appointments line to see where he’s up to on the list. We explored having a family whip round to go private but were told it wasn’t possible due to needing to have an ICU bed on hand.

I feel so powerless as there’s nothing more I can do. We’ve got him set up as comfortably as we can at home. He has a through-floor lift, carers three times a day, every pill and potion you can think of, but on a bad day, it’s really bad. Despite it all, he remains as cheerful as he can but it’s getting harder to keep his spirits high.

Has anyone been through anything similiar? He is absolutely sure he wants to go ahead with surgery (assuming he’d pass another pre-op) but is there anything else I can try?

Have you tried your local MP /press , as a last ditch attempt really and out of desperation. I think it's the only way to go . I am so sorry and l hope your DDad makes a full recovery. Good Luck 🤞 🍀

Haven’t really thought of that but I might talk to the MP. My dad is of the view they’re taking their time because they don’t really want the risk! To be fair, if I was surgeon I might feel the same. 😢

Dad did actually have a second opinion (privately) and that surgeon said he’d be more than happy to do it but the issue was, no ICU bed in a private hosp and he would want one on hand.

Good luck whatever you decide @freshpotatoes, with decisions like these you are damned if you do and damned if you don't but he could be fine and he could be out of pain so l think if it were me l would have to give him the chance which you are doing bless you 💐

I had surgery privately but was in an NHS hospital as there was access to ICU if needed. The 2 hospitals are on the same site. It wasn't hip replacement, but maybe explore further about private with access to ICU (in case of complications, which obviously I hope won't be needed).

Sorry, can't help with the immediate problem, but some advice for the op itself. Some sedatives and anaesthetics have a really bad effect in people with Parkisons. In my experience some anaesthetists either don't know or don't think about this.

I don't have an up to date list of the bad ones, but a Google should find them. Make sure you have take a printout to the preop meeting and alert them to the problem so they can plan alternatives.

Thank you…that’s set me off on a new google search. I’ve found a NHS hospital close’ish to him that does private. I’ve emailed them.

Oh thank you for that. I’ll take a look.

Is your dad fit enough to do the post op physio? A friends husband 84 had surgery here in France but wouldn't do post op exercises and is now in a far worse situation. Surgery isn't always the answer. Has physio been suggested? It would also help with the Parkinson's.

Go to your dad's MP and ask that they get in touch with the PALS team at your local Integrated Care Board, to see if they can progress a clinical expedite via your Dads GP, or if another local health board has shorter waiting times, or if he can have his op privately but at a hospital with an ICU bed. your dad will need to give permission, they usually ring up to obtain this.

We paid for my mum to go private with a moonlighting NHS surgeon, it was tight but we managed it. I was exactly the same as you, did everything at home I could, but it was just mitigating the main issue - my mum was getting stooped, she couldn't drive anymore, it was really awful. Also lots of places offer payment plans - my mum didn't need an ICU but the local NHS hospital was only a five-minute blue lights journey. She didn't have the complexity of issues as your dad but surgeons are so used to doing operation on older people who naturally have co-morbidities. I really feel for you and your dad. My mum had the op just before Christmas and honestly, it's a new lease of life for her. She can drive to her art class again, go and get her hair done. Sending love.

Yes, I think he would be. He can’t move at the moment due to pain but the physio has been out to see him and thinks if they got him out of pain, he’d be much more mobile. The Parkinson’s complicates things but prior to this, he was able to get around the house at a decent speed using his wheels.

No advice but I feel for him. At 79 he could have years left if he gets it done.

I would talk to the surgeon about the possibility of your father only having a very narrow time frame for this surgery due to his parkinsons possibly being a negative impact on his post surgery physio if they wait too long.

My DM was in a similar position waiting for a shoulder replacement, also needing it to be done at a hospital with an ICU. So no private option.

Getting on to the waiting list is the main thing. After a couple of months I phoned up the secretary to get an idea of dates and she booked her straight into the next slot. So being polite but pushy pays off.

I had also resigned myself to my DM dying from the op but honestly her life was completely miserable due to the pain. Post op she has gone from strength to strength and the pain had gone very quickly - her pain from the arthritis was far worse than the surgery.

Oh this is so good to read. And yes, my dad and I have had a few honest chats about this and he says he’s got nothing to lose. His affairs are in order, he’s got a strong faith (we’re Christians) so he’s ready to go for it.

The surgeon did say they wouldn’t do it if they believed it would kill him but it’s the post op complications which could be challenging. But so glad to hear your mum has got her life back.

If he can afford it, I recommend private post-op physio with someone who specialises in Parkinsons. The NHS offering is often fairly minimal and standardised, and he may need adaptations like different cuing to initiate movements.

The surgery comes with risks, my dad had to have surgery after he broke his hip after a fall, already disabled and with similar additional health conditions. He developed post operative delirium and is now just a shell. Please make sure that your dad has made a power of attorney for health and welfare at least. Our dad always refused and its meant we were ignored by doctors when things started to go wrong. Make sure someone has this so that you will be asked about decisions. During his time in hospital, dad also contracted pneumonia and had a stroke. Please make sure that your dad is aware of the risks where there are other conditions involved because though he may feel it would 'take the pain away' how would he feel if he ended up in a nursing home and essentially his brain not being able to work as it should.
I'm not saying that it would happen, but weigh up the risks carefully

Having LPOA for both health and finances is always wise. If you haven’t already please set this up. It is relatively common for people like your dad to need ICU access, they don’t always require it and even if they do it’s often not for long. However post op delirium is always a concern, especially if you are already concerned about any cognitive issues. Sadly the wait for a hip operation is so long and it really affects a persons quality of life. Have they given you any idea of timeline? You can always make it very clear if he is willing to take a last minute cancellation.

Thanks everyone and yes, we’ve got LPA for both in motion and are just waiting for the OPG to send the confirmation.