Comfort Care

Hi all, my Dad (70yo), had a major hemorrhagic stroke early Feb and has been fighting ever since, however two days ago the doctors decided to change his care plan to end of life / comfort care. As upsetting as this is, I can understand the decision. However, coming into the hospital today I have been greeted with the question of where is he going to go as he doesn’t need hospital care. I know they need beds, but its a bit insensitive and has piled on an enormous amount of stress. He has not been able to swallow since the stroke and therefore now he is off all food and water so I can’t imagine he will be able to survive for too long (I may be wrong). I wonder has anyone else had anything similar?

1 Like

Hi there,

I am so sorry to hear about your father. It sounds like at this stage the best thing to do is keep him as comfortable as possible, I’d imagine the best option for his end of life care would be at a hospice. You can have a look here to find options in your area.

We also have publications surrounding this topic that you may find useful.

Feel free to also call our Helpline and information centre on 0303 3033 100 for more info and emotional support should you need it. They are a very friendly bunch.

I hope this helps.
Alex

1 Like

@clg1988 welcome to the forum. Sorry to hear about your dad. It must be so difficult for you all.

I echo what @CommunityAdmin & @Mahoney have said.

It is a very difficult time but maybe your dad had some wishes? I know my dad wanted to pass away at home so thats what we sorted but we had a care package in place to assist us with his medical needs & things like turning him etc.

Sadly the hospital will try & move him out as he’s no longer receiving medical care but please make sure you have everything in place before he’s moved.

Wishing you all the very best.

Ann xx

1 Like

So very sorry to read this. Your poor dad and family. I have very recently been through end of life care with my mum who had a stroke on 31st Jan, was transferred to end of life care 3 days later and died two and a half days after in hospital. Here are some things from our experience which I hope might be helpful to be aware of. I’m sorry if it’s upsetting though. If your dad does go home, he will need a hospital grade bed. You can request these from the Red Cross. Unfortunately they took too long to provide one for my mum. If your dad does go home, he will rely on the district nurse team for care and morphine. They can take 4+ hours to respond to requests and that’s a long time to see a loved one in pain. Towards the end (last 10 hours or so) mum needed oral suction. Foaming from the mouth is very common in this sad situation. No one told us that. Mum wouldn’t have had access to this suction machine at home. My mum’s hospital care was awful, but moving her wasn’t an option. Once food and water were withdrawn for mum, we were given no helpful medical advice to prepare us. There was a hospital palliative care person, who was very nice and had some authority over the useless ward staff, but her attendance was brief. I definitely recommend asking the hospital where your dad is if they have a palliative care team. We were told that death can take hours to weeks, and there is no way of knowing how long an individual takes to die. I have since discovered that there is actually a grading system that the doctors are meant to advise on and update which helps score the decline. There was no mention of that for mum. In fact, it very much felt like the ward washed its hands of mum early on as she fell into their category of ‘too far gone’. Mum was very fit outside of the stroke so it took 2 and a half days for her organs to fail without food and water. Mum was given a muscle relaxant. I wish they had told us that once that is given, the ability of your loved one to hold your hand is gone. Mum was unconscious but still had a slight grip on my hand before the relaxant was given.
I chose to stay with mum right until they took her body away. Another thing they should have told us, is that when they come in to prepare your loved one before being taken to the morgue, they cover the whole body quite tightly in sheets. It was quite a shock to re-enter the room to see mums face covered like that. Luckily I had kissed her before leaving the room for that process.
If you can get your dad to a hospice that specialises in end of life care quickly, I’d say do it. If not, I’d insist on remaining in hospital. The last thing you need right now is to be dealing with the logistics of that though.
Finally, I’m just so very very sorry. My heart breaks for you. Please please do ask any questions and I will answer with complete honesty, no matter what.
Ruth

4 Likes

Hi CLG1988 - just a quick note to say that I have been thinking about your dad and hoping that he is as comfortable as he can be and that you are coping in such terrible circumstances.

1 Like

Thank you all for your messages.

My father passed away on Monday.

Your messages at the end of last week were very helpful. Thank you.

Xx

@clg1988 sending my heartfelt condelences. So sorry for your loss.

Sending my best wishes to you & your family at this sad time xxx

I’m so sorry and sad for you. It’s just utterly crap. I do hope that you got the support from the medical people. I know there are no words. X