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Elderly parents
Original poster

End of life care at home for 90 year old dad?

33 replies

prettycosmos · 04/10/2023 19:15

My Dad is 90, and has pulmonary fibrosis and a coule of other health conditions and we believe is now nearing the end. He has lost a significant amount of weight, very little appetite, sturggles to swallow so is eating soup and porridge and fortisps mostly. He has been spending more and more time in bed over past few weeks and has not been able spend any time out of bed for the past 2 dyas due to his breahtlesness. He can just about shuffle to to the bathroom (next to his bedroom) with help. He lives in his own house, with my Mum who is 82 and also has some health and mobility issues.

This may sound silly, but I dont know what we can expect in terms of support from helath services at this stage? His GP saw him a couple of weeks ago, acknowledged not much more to be done and we have completed a RESPET form.His preference, which we support, is to remain at home.My Sister and I both hold LPA for health and finances for him and my Mum.He has had a SALT assessment re his swallowing who just advised adding cream to his soup for calories. A district nurse came round , suggested he needed a hospital bed which he declined(wrong decision imo) no plan to come again as far as we can tell(sadly neither me nor my sister were there when she came so were not totally sure what the further plan was re this as both him and my Mum get confused)
He isnt eligible for input from social care as he has savings, so we have arrnaged for carers privately from an agency and they are going for first time on Friday to discuss needs.
But it just feels everyone has abandoned him! WIll anyone else see him again?(eg district nurse?) or do we just now have to watch him slowly fade away in bed (appreciate this is actually inevitable) Im worried about him being in pain, being more distressed from breathlesness, developing pressure sores etc - who would monitor those things?

Any adice would be much appreciated. This is the first time I have had to deal with anyone at the end of life (for which I am thankful) and although I relaise it is his time, and he has had a long and good life it is obviously still very distressing and I am finding it quite hard to navigate.

OP posts:
TheLancelotoftherevolutionaryset · 04/10/2023 19:23

OP I’m so sorry you’re facing this. It’s very hard.

I think it would help to speak to his GP again- if he is acknowledged to be needing ‘end of life care’ then he is entitled to care regardless of savings, as he would be with any ‘illness’. This can include care visits to his home but it can take some pushing to get it set up.

I would also ask for the district nurse to visit again. You can change your mind about the bed and their May be other useful aids such as a commode etc that can be arranged for you. They can also arrange visits to monitor pain etc and provide for speedy prescriptions where needed.

You can also speak to your local hospice- even if you are comfortable in your decision for your DDad to be at home, they can still offer support, advice and even visits. Again this can take time to get in place.

Very best wishes to you, it’s such a hard time.

Jennalong · 04/10/2023 19:25

You could ask for an elderly social service call , they will come to the home and see if their is anything that will help for his care i.e equipment to help him get up , a portaloo if he cannot get to the loo , he might qualify for free end of life care ( someone to assist to wash him everyday )
With my mum she also did not have much of an appetite but loved things like stewed apple & custard , crushed pineapple & ice cream / cream , things like that.

Would he enjoy helping to answer crosswords , listening to his favourite music , a talking book , hand / arm massages with a lovely smelling oil .

olderbutwiser · 04/10/2023 19:26

In your position I'd go back to his GP and ask if he can be referred to the palliative care team.

You've found out the hard way that H&W POA only kicks in when the person has lost capacity and they have the right to make unwise decisions!

TheShellBeach · 04/10/2023 19:30

Ask for the district nurse to come back, get the bed sorted out, and she'll also arrange the medication for end-of-life care.

I'm so sorry you're in this position. It sounds like your dad's lucky to have you.

TheShellBeach · 04/10/2023 19:31

You may need to go through the GP to get the nurse back, though.

Smartiepants79 · 04/10/2023 19:31

Gp and district nurses should be involved in any actual ‘medical’ care- pain relief, antibiotics etc.
Get the hospital bed. and any other aids they can give you - raised toilet seat/ commode/incontinence pads etc
what kind of timescales did they suggest? A couple of weeks is perhaps different to a few months.

Smartiepants79 · 04/10/2023 19:32

You need to start making decisions for him. Eg the bed.

TheShellBeach · 04/10/2023 19:33

You definitely need the hospital bed! The carers will not appreciate trying to look after him in a bed which doesn't adjust.

Pixie2015 · 04/10/2023 19:33

So sorry to hear this - Your district nursing team - can refer for “fast track care” if you are in England which gives access to carers / nursing homes if you are end of life - this fast track care is free and is not means tested.

it is worth contacting your GP and asking for anticipatory medications and a care plan.

normally if the district nurses are offering a bed there will be a follow up plan - may just be a phone call in a few days / week. Call the nurses in the morning to see what’s going on.

Original poster
prettycosmos · 04/10/2023 19:54

Thank you all
we did contact social care - they stated nothing they could do as soon as they found out he had savings. We have bought and got installed a stair lift which he was using , but last few days has been too breathless to even get down stairs using that. He hasnt been out of bed since sunday, other than shuffling to the toilet which he is still just about managing.
I am going to ring distric nurse back tomorrow (possibly through gp) and also need to speak to gp to get form to apply for attendance allowance (sr1?) They have been very vague about timescales so im going to push them a bit more on that, although appreciate may be impossible to say.
It just all feels so hard, with all the emotional stuff on top of it all.....

OP posts:
PermanentTemporary · 04/10/2023 19:57

Do they have the sort of money that would pay for some private input?

I think if I were you I would go for a private occupational therapist. That will help with sorting out decisions on what equipment would really help. Alternatively ask for a referral to NHS occupational therapy, but it really sounds as if you've been messed about and need some fast advice.

PermanentTemporary · 04/10/2023 19:59

Looking again, also ask for a referral to the community palliative care team because his breathlessness means he can't fully access his home. They should have occupational therapists in the team.

TheShellBeach · 04/10/2023 19:59

You can apply online for Attendance Allowance OP.
Just Google it. You don't ask the GP for the form.

AllrightNowBaby · 04/10/2023 19:59

My daughter and myself have just been through this with my husband.
You need to get the Doctor back and tell him that you are worried about him being in pain, getting breathless and pressure sores.

Our Dr then got the District Nurses involved who can organise the Palliative care team, in fact make sure you get the telephone number for District Nurses, as everything seems to go through them.
We were ringing them often as he became more frail and weak and they were totally amazing.
You just need to get them on board first.
Also, don’t worry, we were floundering at first but once you are on their radar (so to speak) they are very available and will usually visit the same day.
My Dh passed away from old age, 4 weeks ago peacefully at home, as he had wanted.
We were so grateful to the kind District Nurses who were very available and Paliative care team, who we never actually needed but were on call 24 hours a day, for pain relief if needed.
The support is all there, just get the Dr back, we explained to ours that we needed an idea of time, as we needed to be there (as my husband and myself did not live together) and they gave us a 2 hour window but in the end my daughter had time off work to look after him, then we looked after him between us, with caters going in to make him comfortable 4 times a day….,she was amazing and as he was fully cognisant, he was so happy and grateful to her.
Btw, he wasn’t sure about the hospital bed but we were advised to keep his bed in another room, while he tried it, it had an air mattress and he found it very comfortable and didn’t want his old bed back.
All I would say is, make sure you lower it at night and ask for a crash mat (you out at the side of the bed when you’re not around) as Dh fell out once in the night, although didn’t hurt himself.
Hope I’ve been able to help you.

Original poster
prettycosmos · 04/10/2023 20:02

thanks, and sorry to those who have been through similar
And yes, Iknow about applying for attendance allowance. Im going to apply under special rules as less that 12 months left to live, and that requires the additional form from GP to be snet as well.

OP posts:
TheShellBeach · 04/10/2023 20:06

prettycosmos · 04/10/2023 20:02

thanks, and sorry to those who have been through similar
And yes, Iknow about applying for attendance allowance. Im going to apply under special rules as less that 12 months left to live, and that requires the additional form from GP to be snet as well.

Ah yes, of course.

It sounds like your father would have been entitled to it ages ago.

Original poster
prettycosmos · 04/10/2023 20:09

TheShellBeach · 04/10/2023 20:06

Ah yes, of course.

It sounds like your father would have been entitled to it ages ago.

Show quote history

yes, I think he would have been but I had no idea it even existed until I came on here and started reading these threads. No one tells you these things do they!

OP posts:
TheShellBeach · 04/10/2023 20:14

OP if your mother has poor health you should apply for AA for her as well.

Original poster
prettycosmos · 04/10/2023 20:17

TheShellBeach · 04/10/2023 20:14

OP if your mother has poor health you should apply for AA for her as well.

That's a very good point. I think she would also be eligible. Can't believe that didn't actually occur to me! Thank you

OP posts:
TheShellBeach · 04/10/2023 20:17

You can get a lot of help from Age Concern to complete the forms.

DustyMaiden · 04/10/2023 20:21

you can contact your local hospice.

Nousernamesavaliable · 04/10/2023 20:24

Hi,
You need to contact the spa line for your local DN team.
They can come and complete a CHC referral which may entitle him to carers free of charge if they feel he is in the last 12 weeks of life.
Hospital bed is an absolute must...no carers/DNs will be able to assist if dad becomes bedbound due to manual handling. It is also much kinder to have one at home now rather than trying to organise it later on as other services will need to be brought in etc.
Have your number added to the record...so that if you can't be there you can ask they contact you with up date etc.

Get back in touch with GP, tell them you want a pain review, with JIC meds prescribed and in the property should the time come that you need them.

PuggyInTheMuddle · 04/10/2023 20:25

Hard times, OP, it's not easy.

There is getting old and frail and starting to fail - and then at some point the GP will declare him officially on palliative or End Of Life Care. At this point help will (should!) ramp up. You should have access to a community nurse who will come and administer drugs, deal with any medical issues etc. Not means tested.

PuggyInTheMuddle · 04/10/2023 20:28

A hospital bed is a godsend once he becomes less mobile. They have some sort of air-supported mattress that helps prevent bed sores. They go up and down, easier for him to get out of bed when mobile, less back breaking for carers if he is not. The middle adjustable bits are good for circulation, putting his legs up etc, and putting the head up to help him sit for food and drink.

Would he be convinced on the grounds that it would be like a recliner chair - luxuriously letting him sit up in bed and rising to help him stand?

afromom · 04/10/2023 20:30

Agree with others regarding contacting the district nurses. But also look up your local hospice and give them a ring. If they can't help right now they will be able to refer you to other services who can help. They also have a wide range of services that can support, for example ours has a CAB adviser to support with things like Attendance Allowance. They also offer therapies to help with pain and relaxation, counselling to support family members as well as patients and can offer home care at end of life if your Dad wants to stay at home.