Get husband home for final days....

Christabella

Registered User
Sep 10, 2023
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0
We really want my husband to spend his final days at home in his own familiar surroundings rather than in the nursing home; wondering how difficult this might be in reality as his needs are so great.....
 

SAP

Registered User
Feb 18, 2017
1,549
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I can understand you wanting to do this. I suppose it will come down to finances, who will pay for his care . Also if there is a DOLS in place it might be more complicated. Speak with any professionals involved and ask for a best interest meeting.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
82,359
0
Kent
Hello @Christabella

Will your husband`s home surroundings still be familiar to him? Will you be able to meet his needs or arrange for support to meet his needs?

Bringing him home for end of life care may comfort you but be sure it is practical rather than sentimental.

My husband needed more care than I could provide when he first went into residential care. When it came to end of life care , he needed more care than ever, especially when he developed aspiration pneumonia out of the blue.

End of life care is heartbreaking and I hope you are able to make the best decision for both of you.
 

Mumlikesflowers

Registered User
Aug 13, 2020
220
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Hello, you may well have shared this before but how long has he been in the nursing home? I guess that has a lot to do with what is 'familiar'.

Re @SAP's post, I know someone who has a Continuing Healthcare package for her partner's end of life care but then by a miracle she has managed to follow his wishes and kept him at home throughout. I'm guessing it's rather different if the person has made a 'permanent' move already.

It's good and important to talk round what you are head as opposed to your heart might be saying as you are doing by airing this. It's true we can't take ourselves totally out of the equation and we have to weigh up whose interests we are serving by our decisions. It must feel very burdensome. So many difficult decisions we have to make with this journey.
 

Christabella

Registered User
Sep 10, 2023
28
0
Thanks for your replies. My husband has been awarded CHC funding, and has been in a nursing home for 3 months. I couldn't cope at home as he needed 24 hour care, and his condition had a very rapid downturn.
He's a long way from family but we endeavour to be with him most days of the week. I suppose we can just ask the various agencies about the practicalities and really think about the feasibility ( head over breaking hearts..)
 

canary

Registered User
Feb 25, 2014
25,379
0
South coast
Hello @Christabella

You are talking about your dad's final days, but I am wondering what stage he is at. Has he just been put on End Of Life? If so, this does not necessarily mean that death is immanent. Most people with dementia can stay on EOL for several months, sometimes up to a year or more. When someone dies from dementia it is not like you see on TV, it is actually neither quick nor pretty. The pattern is usually one of slow decline as their body closes down gradually over days weeks or even months and there is frequently decline when you think you are looking at the end only for them to rally.

Some people do indeed pass away quite quickly, but you need to be prepared that it may well not be so. I found this final stage incredibly hard and mum's final few weeks utterly harrowing. She stopped eating and drinking entirely and took no food or fluid for 17 days, which I found so distressing. She lost a lot of weight very quickly and there were other physical changes so that in her last week of life she honestly looked like a corpse and I did not honestly know how she was still alive, but she was.

Mum was in a care home and she passed away in there. I stayed with her for the final week, sleeping on the floor for the last 3nights. In that last week mum was totally bed bound and drifting further and further into unconsciousness. The carers were wonderful, so gentle and respectful. They washed and turned her every 2hours so that she didn't get pressure sores (her skin was so fragile) and they monitored her for distress caused by pain, contacting the District Nurses out of hours when necessary. Mum initially had injections for pain relief, but in her final 3 days she had a syringe driver that delivered a constant supply of pain killers and drugs to dry up the secretions to keep her pain free and comfortable.

The carers also looked after me. They made up a sort of bed on the floor of mum's room though TBF I did not sleep much that final week, and they also fed me and there was almost a constant stream of tea! I was so grateful as I couldn't think of anything beyond my mum. Time seemed to stand still and I was glad that I didnt have to make any decisions like whether I needed to call out the DNs at 2.00 am

I'm sorry if this is too much information, but if you are planning for your husband to die at home you need to plan for the worst. I could not have done it. Having them die at home sounds such a loving and almost romantic idea, the reality is quite different. Be prepared for a long, hard slog. Once he reaches the point of actively dying the GP will organise the DNs and probably some additional overnight care, but most of the time you would be on your own. Until you get to that point, the maximum you are likely to get is 4 double handed carer slots a day, unless you can affort live in care. And there is no knowing how long this will last.
 

Christabella

Registered User
Sep 10, 2023
28
0
Phew; thanks Canary for your frank and grounding reply...definitely gives me a lot to ponder on.
I'm struggling though with considering the wishes my husband would be expressing were he able to... especially that being in his own home at the end of his life is where he'd want to be.
I've witnessed the death at close hand of both my father and my brother (very recently), so I know the harsh reality of the process.
I'll think on, but I'm so grateful for this forum amongst people who are enduring this whole ghastly journey.
Love to all of you x
 

Jessbow

Registered User
Mar 1, 2013
5,831
0
Midlands
Doing that very thing with my 93 year ol M in Law at the moment.

Discarged from Hosp, wants to die at home ( has capasity)

Catherised- has no urine output control- ordering catheter supplies has been a nightmare.
this assessment , that assesment

Pad, bowel control has gone- again assessment after assesment of need ( and it took nearly two weeks to get the assessment, never mind another 7 days to take delivery

Carers 4 times a day,double manned still needs changing after evening call before settling down for the night. Do they make Poonami pads for small adult?

Has a stomach/bowel issue- puree diet - which she doesnt get- have what you like, but now choking etc etc
Did i mention she cant weight bear, so when the bed needs a change s well as the pad, and happens to be 20 mins after the carer has gone, worse still at 2am, and again at 3 am

Secretions causing endle fits of coughing- I know I have just sat beside the bed all night, moving pillows, hauling her up, raising the bed, lowering the bed, putting the quilt/sheet/blanket on /off because shes too hot/too cold etc etc

Palliative care nurse coming this morning- I think- someone is coming maybe the Dr? not sure, too tired to know what day of the week it is, never mind who may or may not turn up, at a time they can never specify

Just remembered, washing is in the machine, not switched it on, we'll have a nighty crisis tonigh- despite having 8 or 9 on the go
Distraced by delivering 4 year Grandaughter to nursery as I do every Monday morning

Its hard, all harder than I though