Bring him home..

[Christabella]

I really want to bring my husband home for his last days; he's as weak as a kitten, lost loads of weight, surviving on one meal a day... he's in a serene and peaceful space and I think, with nursing support, home is the place he should be.
He's receiving CHC funding, and I believe that can apply at home as well as in a nursing care facility??

 

[Jacko123]

I really want to bring my husband home for his last days; he's as weak as a kitten, lost loads of weight, surviving on one meal a day... he's in a serene and peaceful space and I think, with nursing support, home is the place he should be.
He's receiving CHC funding, and I believe that can apply at home as well as in a nursing care facility??

Hi, yes Mum had CHC funding and she came home, with carers four times a day, district and community nurses and I did a self referral for hospice care. I am so grateful she passed away peacefully in her own home.

 

[Grannie G]

I hope you will be able to get the support you need to bring your husband home if that is what you really want. @Christabella

 

[Gosling]

@Christabella you are right in that CHC funding should allow you to bring your husband home for his final days if that's what you wish for. Do talk to the home. Wishing you strength at this difficult time.

 

[canary]

Do remember, though, that CHC funding will probably only give you 4 carer visits a day and there is no way of knowing how long this stage will last before he gets to the stage of actively dying - it may be only a few days, or it may be several months. Once he reaches the stage of actively dying, or sometimes when it looks immanent, your GP can prescribe the "just in case" box (meds which are to be used to keep him pain-free and comfortable) and you may be able to get more help from the Marie Curie nurses and some overnight sits. There will almost certainly be long periods when you will be on your own with him, though, and I found when mum died the whole process of actively dying (which took 17 days) truly harrowing and I was glad that I did not have to make decisions, like calling in the District Nurse at 2.00am, on my own

Do think very carefully about this. When someone dies from dementia it is neither quick nor pretty

 

[Christabella]

@Christabella you are right in that CHC funding should allow you to bring your husband home for his final days if that's what you wish for. Do talk to the home. Wishing you strength at this difficult time.

Do remember, though, that CHC funding will probably only give you 4 carer visits a day and there is no way of knowing how long this stage will last before he gets to the stage of actively dying - it may be only a few days, or it may be several months. Once he reaches the stage of actively dying, or sometimes when it looks immanent, your GP can prescribe the "just in case" box (meds which are to be used to keep him pain-free and comfortable) and you may be able to get more help from the Marie Curie nurses and some overnight sits. There will almost certainly be long periods when you will be on your own with him, though, and I found when mum died the whole process of actively dying (which took 17 days) truly harrowing and I was glad that I did not have to make decisions, like calling in the District Nurse at 2.00am, on my own

Do think very carefully about this. When someone dies from dementia it is neither quick nor pretty

Thanks canary; I hear you. I know that the end process is neither quick nor pretty, but why would that be more distressing if he was in his own home? Amongst his own family, who know about the reality of his situation.
Anyway, I'm talking to our CHC contact tomorrow, so we'll take it from there x

 

[mhw]

I think what canary was trying to say is ' it ain't like in the movies'
It's long ,drawn out, unknown, scarey, as in what's happening? Am I doing the right thing, there's no one answering the phone, if I panic and can't get anyone only an ambulance then they will just cart him away and he'll die on a trolley in a corridor, will they think I helped him die quicker if he dies suddenly?
In a home or hospice you're just there, everything is controlled, over seen, calm, the right amount of drugs exactly the right times not wait til the next nurse visit, hours that feel like days.
It all sounds the most normal option , to die at home, but sadly, like I said, it's not like in the films.

 

[Kevinl]

"it's not like in the film's" about sums it up, turn your back for one minute and I say this as a former NHS nurse, turn round and you're closing their eyelids because they've passed away while you went to get some tissues to wipe up a spill.

The whole journey and it's been over 10 years on here for me, for both my mum and wife does wear you down, it is hard but I did it for them because I know they would have been there for me too. K

 

[Christabella]

"it's not like in the film's" about sums it up, turn your back for one minute and I say this as a former NHS nurse, turn round and you're closing their eyelids because they've passed away while you went to get some tissues to wipe up a spill.

The whole journey and it's been over 10 years on here for me, for both my mum and wife does wear you down, it is hard but I did it for them because I know they would have been there for me too. K

Do you mean that you looked after them at home?

 

[Jacko123]

This was my experience, Mum was sent to a nursing home (D2A) after four weeks in hospital following a fall where the hospital said they would not intervene as she was too frail. Mum continued to deteriorate in the home, it was a nice home and the staff were nice people but Mum said she wanted to be in her own home. She wouldn’t eat, drank very little but still knew us all and I spent everyday with her. The GP assigned to the home visited Mum and told us she had 6 months, a nurse in the home told me Mum had maybe two weeks. I knew then I wanted Mum to come home and the nurse completed the necessary paperwork alongside me and on the same day the wheels were in process. A hospital bed was arranged, transport, carers, I telephoned Mum’s GP, the district nurse etc. Mum came home two days later.
The help was there for Mum, district nurse, community nurse and I did a self referral and the hospice too. The GP called in to see Mum and confirmed it was a matter of days. I was so grateful she was at home, her children, grandchildren and great grandchildren spent time with her. Yes, sometimes it was just me and Mum and yes I did call the nurse in the middle of the night but I have to say Mum had more care in those last few days and everyone was so kind, it’s something I will never forget.
As I said at the beginning this was my experience and I know it is different for everyone.
Just a note, the nurse at the nursing home said that sometimes when an end of life patient gets their wish and they come home they may pass away sooner than expected,
I wish you all the very best in any decisions you will make.

 

[Kevinl]

Do you mean that you looked after them at home?

Yes, had my own little nursing home here.
Wife and mum the 2 women a man cares about most in life, both at the same time.
Wife had mixed, atypical, early onset Alzheimer's mum just a mild to moderate cognitive impairment.
Hard though it may be I'd do it all again tomorrow if I could, I did it for them because had it been the other way round and I had Alzheimer's I know they'd have been there for me too. K

 

[canary]

Yes, had my own little nursing home here

Hi Kevin. Im a little confused here. I used to read your posts before you developed encephalitis. Im sure I remembered you describing visiting your wife in her EMI home and I know you said that she passed away while you were in hospital.
I dont remember about your mum, though

Have I got this wrong?

 

[Kevinl]

Of all the things you don't want in your world viral encphilitis is one of them, been there, done that got the t-shirt as they say.
It can be reoccurring and although I have photos to show I was at my daughter's wedding in France I've no memory of it,.
My mum came to live with after an incident and it ended up her helping me care for my wife with early onset AZ, not what you want to happen in your life.
My encephalitis appears to be fine for now, at home sitting alone, no medical appointments or anything but such a whole piece of my life has disappeared.
Maybe I've not come back from the dead, but I've certainly come back from the other side.
Just what happened in the middle bit I still understand messing me up, as I say one thing you don't want to get is encephalitis. K