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End of life planning for non cancer terminal care.

(11 Posts)
Theas18 Wed 28-Jan-15 07:52:49

Eek. I already feel im in the wrong place. Cancer is terrible but there is a kind of "brotherhood" to it. I know it accesses services better than over reading to die (I know sweeping generalisation) but looking on here there are few non cancer threads.

If anyone's followed my elderly parents thread we are having a rough time with mum im hospital.

She is old, and basically has terminal heart failure with renal failure of sorts and myeloma too just to add into the mix.

Treating her isn't easy. Her amount of improvement is going to be very limited. She may get home but is v breathless , poorly mobile, eating little etc. Many complications. Been in since 24/12.

I'm thinking we need maybe to persue a terminal path here but it's just too hard for me to decide . My thoughts are to try to get her home thrm talk maybe mo re admission but I don't know sad

We also have my dad with dementia to think about.

Anyone any experience of this?

LastNightADJSavedMyLife Wed 28-Jan-15 20:36:55

I don't I'm afraid, but wondered if you could speak to a Social Worker at the hospital to see what the options are. Are you thinking for her to come to you, or does she live with you dad?

Muchtoomuchtodo Wed 28-Jan-15 20:38:55

Have you spoken to her team in hospital?

If they think it's appropriate they could ask for input from a palliative care team.

Jackieharris Wed 28-Jan-15 20:43:10

You need to speak to her allocated social worker and ask for a care planning meeting asap.

If there is any chance she will need to move into a care home start visiting them NOW.

Find out how much care home and home care costs and if she will be eligible for help.

Does your dm want to go home? If she has capacity her views are paramount.

Theas18 Thu 29-Jan-15 09:03:40

Her wants- to go home to her home, with Dad. I don't think she sees her self as terminally ill.

She realises this might not work as she might not be up to it. Has half agreed to a rehab place - we know the place and it's where dad is in respite. I fear that if we had a terminal care plan in place they wouldn't take her for rehab IYSWIM though I'm not sure why as the plan would still be get as a good as possible to go home and keep her there when she deteriorates.

I'm sure if we ever suggested a care home at the moment she'd just die so it didn't happen LOL. I rather fear they'd see her as nursing home material too.

Any medical choice she defers to me. Always has done even though I've tried hard to get her to actually choose.

We are looking at care homes next week for dad. The ideal would be to get them both somewhere nice and her looked after and him accommodated forever but that's no doubt pie in the sky

fairyfuckwings Thu 29-Jan-15 09:11:57

I'm in a similar position to you with my grandmother. She also has heart and renal failure and is currently in hospital.

She's 95 and fully mentally competent but the hospital and other family members are trying to push her down the residential home route. She's absolutely devasted. She doesn't want to sell her own and just wants to be back in her own home surrounded by her things.

After a sleepless night I think I'm going to support her decision. Rightly or wrongly. It's just so hard knowing what to do isn't it?

LastNightADJSavedMyLife Thu 29-Jan-15 09:44:29

I think that's completely right fairy, just because someone is older it doesn't mean they are unable to make decisions. She should be able to get care in her own home.

Would you DF need a nursing home OP? If so perhaps your DM would be prepared to go there as support for him?

Jackieharris Thu 29-Jan-15 09:54:34

If you're thinking of a double space in a care home then yes this will take a lot of forward planning. If I were you I'd phone every single home in your local authority area to get an idea of occupancy rates, costs etc. look up their inspection reports. Visit as many as you can.

You need to have a solid idea of what her care needs are.
Her care assessment will consist of:
Does she need constant supervision to stop her coming to harm?
Can she get out of bed herself?
Can she get out of a chair herself?
Does she need any help toileting?
Can she cook a meal?
Can she remember to take her medications correctly?

If she is thinking of returning home then contact the hospitals occupational therapist and ask them to visit the house to assess it. They will see if safety equipment/rails etc can be fitted. Arranging this can take some time so don't delay.

Does your local authority have telecare? Find out from the ot/social worker as this can be very useful in helping older people to remain at home.

This process takes an awful lot of time and work so you really need to crack on with it. If families don't do the pre planning legwork then older people can end up just being dumped back at home with inadequate support or in a care home that isn't suitable for their needs.

Theas18 Thu 29-Jan-15 10:12:45

Fairyfuck my sympathy and a hug for you.

Dad doesn't need a nursing home. He's really " very good" given he has dementia. Needs a bit of prompting and general care needs ( and a lot of understanding as he can't express things sometimes which is awful as he is normally a great communicator) . At the moment after his recent hosp admission he's needing watching when walking as he's tottery but that should recover .

I think the only thing we can do for Mum is to go with her wish to get home and in her own bed and support her from there. she has capacity to decide that and I don't see it'll be unsafe. She can get in and out of bed, might need a commode if the loo is too far ( thinks .... can you put a raise seat over a chemical loo?? you probably can! we have 2 in the attic!). She really must have a terminal planning chat with her GP and without me though then.

(I tried to get her favourite consultant involved with that but she picked up and then slipped again a bit so the time hasn't ever been right given that she's never choose hospital as a place of death)

Muchtoomuchtodo Thu 29-Jan-15 19:45:00

She should be able to get 4 calls a day from carers, as well as one from a District nurse if she has any ongoing nursing needs.

Things like a key safe box (so that carers can access the house), community alarms (to call for help in an emergency), commode, loo raise, shower stool, appropriate mobility aids will all help to make her d/c safer. Have you had a multidisciplinary meeting (with Drs, nurses, physio, OT, SW etc)? They can be enormously helpful to plan complex discharges.

If her condition is unstable, has anybody mentioned a continuing healthcare assessment? If she meets those criteria then the onus to fund ongoing care shifts from social services to health services. This can be a double edged sword so worth reading up on if it's appropriate.

Musicaltheatremum Tue 03-Feb-15 20:56:41

Sometimes a hospice will get involved with the care. It depends on the hospice and their funding but they can give enormous help and advice.

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