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Life-limiting illness

End of life care at home- 90 yr old Dad?

3 replies

prettycosmos · 04/10/2023 06:58

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 a bit 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:
MrsTomHardy13 · 05/10/2023 21:00

I’m sorry to hear you are going through this with your Dad; it’s a very difficult time.

I would say speak to his GP or district nurses if you have a direct number for them. District Nurses should be able to assist with pressure sores if he gets any- a hospital bed with the special mattress would be a good idea to help and prevent / limit them to start with. They can also help with other things like fitting a catheter if needed.

My Dad had a ‘just in case’ box of medications with things for pain, distress etc Speak to the GP to see if this is something they can put in place for your Dad’s condition. He may not need them but they’re there just in case, say for example if you needed them on a night / weekend an on call Dr can come and administer what’s needed without the added stress of getting something prescribed.

I should add district nurses are 24/7 as far as I am aware if you need them. There may be a palliative care team that you can be put in touch with as well who may be able to advise further.

StopStartStop · 05/10/2023 21:23


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