Live in palliative care advice

[steveT350C]

So my father in-law has been given a few weeks to a few months to live.

He wants to go home to die. His wife is at home but semi disabled and we are thinking of getting a live in carer to help with continence care etc.

Just wanted a bit of advice if anyone has had to deal with this.

Thanks in advance.

Stephen

[mrpurple]

steveT350C said:

So my father in-law has been given a few weeks to a few months to live.

He wants to go home to die. His wife is at home but semi disabled and we are thinking of getting a live in carer to help with continence care etc.

Just wanted a bit of advice if anyone has had to deal with this.

Thanks in advance.

Stephen

Macmillan nurses were absolutely marvelous with my father in law.....not sure they live in full time but worth contacting them Steve.

Edited by mrpurple on Monday 2nd December 16:57

[Fozziebear]

Macmillan nurse would work alongside live in carer to give a balance, it's a exhausting job. You may need 2 carers to split the shifts etc. I hope you get the best help, my thoughts are with you

[steveT350C]

Thank you both.

[Shaw Tarse]

Macmillan are brilliant.
Also worth speaking to local council to see what home care services they can offer.

[thepeoplespal]

.Difficulty arises when carers can't cope and the home based health service can't respond fast enough. That leads to crisis and a trip to hospital, too much intervention and an undignified death (in my view) in a place the person doesn't want to be.

Getting Carers, is a good idea, get a plan for what intervention is wanted and unwanted, get it written up and make the decisions sooner rather than later. Also need to think what alternatives there are if things truly get too much to cope with, so a hospice might be the least worst option, if the alternative is hospital. GP should be able to pass medical notes and care plan to Out of Hours and (sometimes) ambulance service.

Hope things go as well as they can in the circumstances

[ali_kat]

Marie Curie also do this

However, I would strongly recommend getting him into a hospice for the end few days

[JumboBeef]

Sorry to hear this.

If he is going home to die, then please make sure that there is a DNACPR in place (and the paperwork is always close by). Otherwise, if someone calls 999 when he does pass away, the ambulance crew (if not a Paramedic crew) will have to, by law, drag him out of bed, put him on the floor and perform CPR on him for 20 minutes (which almost always breaks ribs in the elderly). Very distressing for everyone.

[steveT350C]

Thanks guys.

Looks like he will be accepted by a hospice in the next few days, so we are entering the end game. He is going down quite fast now.

[ali_kat]

It's an awful time, ensure your wife is able (and you!) to spend as much time with him as possible now

[eybic]

I agree with the hospice option. When my Mum was on her way out, the hospice was the best place for her, we wouldn't have been able to manage her pain as well as they did.

My thoughts are with you.

[drivin_me_nuts]

hospice at the end is by far the best solution. Do not underestimate how hard it is to watch and care for someone dying at home. It will change your life in profound ways and change your relationship and memories. You need to be a son in law and not a carer.

[Herbs]

I'm 35 and both my parents came home to die in the last 4 years as that was their wish. You wouldn't get a live in carer but they do shifts covering 20 out of the 24 hours and were fantastic. I'm still friends with a couple of them who were there when my dad died and even came to my mums funeral 2 years ago.

Yes, a hospice is easier and that is where my grandparents went , but, surely if it is his wish to be at home, it could lead to world of regret if you/family go against their final wish.

stty time of year for it to happen.

[BlackVanDyke]

We cared for my grandpa at home at the end of his life and I'd gladly do the same for anyone I loved - I'd want the same for myself, too, if it came to it. Don't rule it out - it's hard, no mistake, but some people cope better with the awfulness that is their loved one dying better when they're in a familiar space, and of course the dying person might (this isn't universal by any means) well prefer to be at home too. Having had a very bad experience in a nursing home I'd fight tooth and nail against returning to any not-at-home care environment - I know hospices are better but I'd never be able to relax and feel safe, not for a second and that's no way to spend your last days.

OP, I hope you guys have all the support you need.

[ali_kat]

Sorry BVD but there is absolutely no comparison between a nursing home & a hospice

A hospice has no stress for the patient or family, has 24hr Drs available on site, no waiting, real Nurses specialising in palliative care.

You simply cannot get that level of care at home

[BlackVanDyke]

ali_kat said:

Sorry BVD but there is absolutely no comparison between a nursing home & a hospice

A hospice has no stress for the patient or family, has 24hr Drs available on site, no waiting, real Nurses specialising in palliative care.

You simply cannot get that level of care at home

I know full well that they're different. Many people are admitted to nursing homes for "hospice care" in the mistaken belief that there's some sort of equivalence - I saw it happen several times.

But I don't think it's always true to say no stress, you're still not in your own space, strangers all around (however kind, compassionate and well-trained they are), not your bed etc.

[ali_kat]

I read what you are saying, but trust me, having been through this very recently, a Hospice is the best place not home.

At home you cannot have a person in pain immediately seen by Drs that can give them the correct drugs, and increase them to lessen the pain over a few hours until they are settled.

If you truly love the person you are attempting to care for at home, do not put them through the extra pain of having to wait for a Dr to arrive too.

[Catz]

My Mum was adamant that my Dad was coming home in the last few weeks of his life. Had the bed/ wheelchair etc etc arrive then she realised that, even as a previous nurse, it would be a hard toil. I wish he had been able to come home but realistically it would never have worked out.

Best of luck if your father-in-law goes home. It seems the best place to be but sometimes the best place is with professionals who know exactly what they're doing.

[thepeoplespal]

I guess we all seem a bit harsh, but I'd plan for the home thing for as long as possible, but have a backup plan for the hospice, if if all gets too much. I've seen too many home cared patients end up dying in hospital when the carers get exhausted and can't get adequate pain control & that really is very distressing for all concerned.

Good luck with your plans.