Active discussions

Please or to access all these features

Talk
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:
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.

Smartiepants79 · 04/10/2023 19:32

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

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.

TheShellBeach · 04/10/2023 19:31

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

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.

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!

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 .

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.

Swipe left for the next trending thread