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

[prettycosmos]

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.

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

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.

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.

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 .

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

How are you getting on, OP?

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.

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.