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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:
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MereDintofPandiculation · 19/10/2023 09:37

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?

Yes, I was going to suggest stop talking about a hospital bed and suggest he might like an adjustable bed where the top can be raised so he can sit up.

MereDintofPandiculation · 19/10/2023 09:30

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. He totally is entitled to social care! Social Services are required to carry out a needs assessment for everyone who requires it. The only difference is that he has to make a financial contribution. But if you’ve managed to get private care, you might not have the energy for a fight with social services.

TheShellBeach · 18/10/2023 22:37

How are you getting on, OP?

TheShellBeach · 05/10/2023 12:15

Google district nurses + your area.
And yes, hospices can provide home care

lobeliahorizon · 05/10/2023 08:02

Ask your gp to apply for fast track continuing healthcare- this will pay for carers. Carers may come up to 4 times a day if needed. Look up the national charity Crossroads care, they are amazing and can give carers support .

Original poster
prettycosmos · 05/10/2023 06:06

thanks all. so much helpful advice on here. Sending love to those who have been through similar. It is hard.
He was offered the option of hospice but stated he would prefer to remain at home - which we support if that is what he wants. The RESPECT form has documented this, although adknoweledged he did say he would go to hospice if we (me and my sister) couldnt cope any more looking after him at home. 🙁
I didnt know that maybe hospie could offer advice or even input at home, so will try calling them too if I can identify which one.
I cant find a number for the district nurses so will try and get this from GP
I just feel so helpless with it all
It feels as if GP completed the respect form, identified he wanted to stay at home then dissappeared and left us to get on with it.

OP posts:
POTC · 04/10/2023 20:42

I worked as an end of life carer a couple of years ago. There is funding for end of life care at home regardless of savings etc. In simple terms if you are at a stage that a hospice placement would be appropriate they can fund care at home instead if that's what the patient would prefer.
The district nurse team were generally amazing at supporting end of life care alongside us as carers, we were able to call if we had any concerns and they'd come out same day on top of regular visits that increased as required.

Furryrug · 04/10/2023 20:37

I'm sorry you're going through this, my sister and I had the same with our dad a few weeks ago. We had the palliative care team in place but tbh they were useless. We asked for dad to go into a hospice (which was agreed when we first got the news he was terminal) but when it came to that time, they refused. My sister and I nursed him through his last couple of days and it was traumatic.
I really hope that you get the help you need and your dad deserves. Sending you love and strength. X

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.

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?

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.

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.

DustyMaiden · 04/10/2023 20:21

you can contact your local hospice.

TheShellBeach · 04/10/2023 20:17

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

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 20:14

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

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 20:06

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 20:02

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:
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.

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.

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.

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.

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:
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.

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