Elderly parents - palliative care

[Miffed1233]

FIL is mid 80’s and has long term mobility issues. Incredibly he has survived lung cancer and bladder cancer - both identified by chance at a very early stage and dealt with through surgery (a few yrs ago). The last few weeks and months his mobility has significantly deteriorated and he is almost bed bound now. He’s unable to wash himself and his and her quality of life is very poor with a lot of stress for each of them and between them. The wife being his sole career. We are doing what we can around full time jobs. I called age concern and they are sending some info. The family are catastrophising about the GP who finally paid a homer visit and referred to palliative care. I’m trying to reassure (having seen palliative care in action through my Mums recent passing) that this could be a good thing and maybe he will get plugged in to a proper support programme. I’m thinking he needs a carer to help him up in the morning, washing and putting to bed. Am I being unrealistic? The problem is they don’t have a lot of money but possibly sufficient in pensions that might mean they don’t qualify for help? We have a benefit assessment next week with age concern for info. Help! Anything or any advice you can recommend? It’s horrible to see to be honest

This sounds very stressful, Im sorry to hear about it.

Did the GP explain why this referral? I think it’s a good idea as community palliative care can be brilliant at a holistic view of symptoms like pain, incontinence etc that aren’t going to be fixed but which need input. it may be that really they are the only service like that currently remaining - that 50 or even 30 years ago their GP would have had the district nurses in every day, would have visited every week, but that’s very rarely possible now. Depending on what the GP said, can you explain that it’s the modern equivalent of the district nursing service?

Age UK are very good but yes, your dad clearly needs carers. I think in your situation I would call social services first, get an assessment for care needs via the duty line, but I would also ring the community palliative care team and find out what they think they’re going to be providing. Also don’t try too hard to sound calm! If you end up crying on the phone, that’s a good thing, you sound very stressed and they need to know that.

Thanks - the problem is we don’t know what the MIL told the GP (she is convinced he has dementia which none of us agree with) I like your analogy of palliative care being the modern equivalent of district nurse. I’ve said to my partner that she (or her brother) absolutely needs to be there when the palliative care people come and do their initial assessment so we can be sure the right information is being passed to them and also just as another set of ears.

Do you already understand the financial rules? You may well be a veteran of this if your dm has recently died. It’s a lot to cope with.

I’m unfamiliar with the financial rules tbh. Where my Mums diagnoses was immediately terminal from the outset it feels like a whole system just kicked in automatically - plus her husband handled that side of things. I guess we will find out more at the age concern assessment.

After a hospital admission for a fall (earlier last year) there was a care package for a few weeks after he got home (we pushed the hospital for that) but that came to an end (although i’m not sure why)

The hospital care package only lasts for a set number of weeks then it is handed over to the council if further care is needed. Then you have to pay for it and it is worked out on your income and even if your income is low you are still expected to pay something.

As PP suggested, ring the palliative care team and see what they’ve asked to do. I wouldn’t call social services until he has been seen by them as they can refer back to SS and also get other services involved if and when necessary and are likely to be more responsive, IME.