End of life care - NOT end of life care?

[Jennyc]

Can you be end of life and then not end of life? My husband has not eaten for 21/22 days, sips of fluids from time to time. He was taken into hospital after week and a half of respite care, mainly not eating (I was very ill in January, no choice about respite care), had a couple of seizures and into hospital. I was told he was on fast track, end of life continuing health care, to go and sort out a nursing home, given a couple with vacancies, went to see and the first assessed him and said they would take him, and he was transferred there on Wednesday this week. All this has happened since 1st February. Not very long, though it seems a lifetime.

I've been visiting each day since I got well enough, first care home, then hospital. Then care home again since Wednesday. Daughters and grandchildren have been to say goodbyes, we are just waiting it out. He seemed settled, comfortable, not in too much distress, refusing food but the odd sip of water.

When I visited today he seemed less out of it - very weak and a bit confused, but less so than he has been. Talked about being hungry, though he didn't actually want any food, a whisky might be nice (hasn't had alcohol for some months). I'm not sure I could cope with it all starting again, I really want it to be "end of life". Is that a dreadful thing to say? it would seem kinder all round. What is the point? I felt quite panicky driving home, can you just come back from "end of life"?

 

[lemonjuice]

Don't feel guilty jennyc. Most people on here would empathize completely with your feeling,
'I'm not sure I could cope with it all starting again, I really want it to be "end of life". Is that a dreadful thing to say? it would seem kinder all round. What is the point? '
and I myself wonder each time we have this scenario, "Please let this one be the final one!"
However if your husband is not eating at all for 3 weeks now, this little rally might be just that- a 'little rally'. My mother only has 24 hours after an 'attack' and then pretty soon gets back to normal.

 

[Jennyc]

Thank you for understanding. Today he just slept. It is all very strange and unreal.

 

[Toddleo]

Hello Jenny, I just wanted to say that I have some sympathy with what you're going through.

When the hospital consultant gave us the "end of life chat" about our mum, It was a really odd feeling, we knew that she was in a bad way, but found it hard to accept that her life would shortly come to an end.

Mum was granted fast track CHC funding, like you have described and eventually placed in a local nursing home with a secure dementia unit.

In the hospital, the consultant explained that often people "bounce around on the bottom line" when they are end of life, and can change drastically from day to day, and to a certain extent, this seemed true. Mum certainly had times when she smiled, and held our hand, and other times when she just sucked my fingers and gripped my hand like a vice.

It was all very distressing. I would just say that you will see changes from day to day probably, and I know that there are some folk on TP whose loved ones, have lasted a very long time in the end of life phase.

Our mum lasted 6 weeks from the hospital end of life diagnosis to her death, and I hope that you find the strength to wait it out - it is a very difficult time for you and your family. You have my sympathies.

 

[Clanic]

Any Help Please?

Dad has had dementia 14 years, he's been in a Nursing Home for 4, 3 weeks ago he was admitted to hospital and ended up with pneumonia in there, we were actually told he was going to pass overnight but 3 weeks later, he's back in his nursing home but just asleep the whole time, he becomes semi conscious at meal times and eats a little but that's it, although he's over the pneumonia, he's far less responsive now, he literally can't move a muscle in his body anymore and is in bed the whole time. I feel guilty because I want him to give up, he would hate to be this way and it's tough on my 85 year old Mum too.
Does this sound like he's near the end? I haven't seen him awake for a week now. Thank you

 

[Jennyc]

It's 10 days since I first posted. My husband has not eaten in all this time, about 32 days in total now. No fluids at all for the last 3, tiny occasional sips of water for the days before. I sit here and watch him and wonder how he can keep going. Called out at 1am Sunday morning, drove the 20 miles, stayed. Stayed again last night, home briefly for shower and change of clothes. Will be staying again tonight. He is peaceful, on pumped medication, my daughters come each day for a couple of hours vigil. How can he be so strong? At first he seemed aware I was here. I don't know now. I wish he could let go.

 

[Merrymaid]

It's 10 days since I first posted. My husband has not eaten in all this time, about 32 days in total now. No fluids at all for the last 3, tiny occasional sips of water for the days before. I sit here and watch him and wonder how he can keep going. Called out at 1am Sunday morning, drove the 20 miles, stayed. Stayed again last night, home briefly for shower and change of clothes. Will be staying again tonight. He is peaceful, on pumped medication, my daughters come each day for a couple of hours vigil. How can he be so strong? At first he seemed aware I was here. I don't know now. I wish he could let go.

Oh Jennyc, you sound so weary-can only offer you virtual hugs xx

 

[cuppatea]

So sad. Thoughts with you all

 

[Jinx]

Jenny, it's a very hard time I do feel for you. My husband was in hospital for four weeks, not eating but once fluids were withdrawn and he was put on the morphine pump he died within two days. He was very, very weak before that and hadn't eaten properly for weeks before he was taken into hospital. I hope for all your sakes that the end isn't too far away. xx


Sent from my iPad using Talking Point

 

[Raggedrobin]

Jenny sending my thoughts to you, such a very tough time.

 

[lemonjuice]

Nothing more to add other than to wish you strength and tell you not to feel guilty that you wish he'd give up. To see them like that is so painful.

 

[Toddleo]

Jenny, sending thoughts and prayers your way.

 

[Timeout]

I'm pitching to say that my thoughts are also with you. Please try and look after yourself during this difficult time. I hope your loved one finds peace soon xx

 

[suzy64]

Dad

My dad is being sent back to the home doctor said nothing more can be done for him I'm beside myself

 

[LadyA]

My dad is being sent back to the home doctor said nothing more can be done for him I'm beside myself

This will be a hard time for you. Know that there are people here who understand, and who've been through it, and will be thinking of you.

Sent from my Moto G Play using Talking Point mobile app

 

[Jennyc]

My husband died peacefully early this morning. Our younger daughter and I were by his side. Our older daughter was with us yesterday. We had all said our goodbyes. It is a blessed release.

Thank you so much all of you for your help and kindness over this and all the years leading up to it.

 

[LadyA]

Aw, Jenny, I'm so sorry for your loss. As you say, a blessed release for your husband, but that doesn't lessen your own grief or pain at his loss. Will be thinking of you in the coming weeks and wishing you strength. xx

Sent from my Moto G Play using Talking Point mobile app

 

[suzy64]

Thank you it's dreadful I live so far away I ring every day to speak to his carer as his partner doesn't contact us she kept dads illness from us until it was too late I will be going next week to see him alone I saw him 2weeks ago and he smiled and looked deep into my eyes and held my hands so tightly the whole time he was mumbling to me but couldn't understand . When I got home I was called to say he had declined more and not long left .i just want to be with him I can't sleep or eat


Sent from my iPhone using Talking Point

 

[nannylondon]

Jenny, so sorry for your loss, but I hope you can take comfort that he is at peace now my deepest sympathies to you and your family. Xx

 

[lemonjuice]

Oh jenny! What can one say?

To lose any relation is hard, but to lose one's husband is infinitely worse.

Yes the 'sensible head' is thankful that he's no longer suffering, but the 'emotional head' will be feeling completely different and bereft. may not even 'hit' you for a while yet.

Be kind to yourself and family as thye all grieve in their own way.