If my husband is going to die I believe he needs to be in his home with me.

[canada]

I’m really stuck on a decision I’m being pressed to make about my husband. He had a heart attack less than 2 weeks ago was admitted to hospital. Sent home to me 6 days later on lots of pills for heart ,cholesterol and thinners.
3 days later admitted again just drooling and not speaking, ambulance men said his blood pressure had dropped drastically.
I want my Dave home but hospital want to put him in a care home. He wants to be with me.
we had a good day yesterday together at hospital. I still see my Dave although he’s dropped weight.
He’s ready for discharge but the doctor said his care needs are more now and they want to put him in care home . Dave wants to come home I want him home desperately.
If he is going to die I believe he needs to be in his home with me.

 

[karaokePete]

Hello and welcome @canada

There is little doubt that home is where most feel they would get a better death so I understand your feelings.

The hospital may have a Social Worker who could work this through with you so it may be worth checking for that.

 

[Sarasa]

Hi @canada and welcome to Dementia Talking Point. I'm so sorry that it was having to make such a hard decision that bought you here. I'm sure others will be along soon with their experiences and advice, but I agree with @karaokePete about talking to the hospital social workers about why they feel a care home would be best. Whatever decision is arrived at you'll always find a listening and sympathetic ear here.

 

[nitram]

You could ask the Local Authority for needs assessment for both him and yourself as carer, and then ask for a best interests meeting.

Does anybody have Health and Welfare Lasting Power of Attorney?

 

[Shedrech]

I'm so sorry that your husband is so unwell and that you are facing such a challenging decision @canada

might you ask if there is a dementia matron in the hospital and talk this through with them .... certainly ask the consultant to explain why they believe residential care is necessary .... there will be a Patient Liaison Service, ask them if they can indeed liaise for you

having your husband home will be demanding ... the social worker may be able to look into suitable home care to support you and aids eg a hospital bed

has it been said that your husband is at end of life ... if so your GP can make a referral to Marie Curie Nurses who support with eg night visits

maybe a move to a Hospice might be considered ... they are different from even a nursing home

may I gently suggest that it may be that hospital medics think that the nursing needs your husband now has cannot be provided at home, even with visits from District Nurses, and they believe he will need a Nurse available at all times .... I'm sure they don't doubt your willingness to care for your husband, just that you won't have the specialist knowledge required ... it may be that they are concerned for your health and welfare too

to talk this through with someone maybe call the Support Line as the advisors are good listeners and knowledgeable
www.alzheimers.org.uk

very best wishes to you both

 

[nitram]

End of life is difficult to define.

However if an 'appropriate clinician' is prepare to sign
'The individual fulfils the following criterion:
He or she has a rapidly deteriorating condition and the condition may be entering a terminal phase. For the purposes of Fast Track eligibility this constitutes a primary health need. No other test is required. '

NHS continuing healthcare fast-track pathway tool

Identify individuals who need to be fast-tracked for immediate provision of NHS continuing healthcare.

www.gov.uk

all care will be free.

Note that this can be care at home in which case AA is still payable.
Fast Track CHC is usually subject to a 3 month review.

 

[DennyD]

I support your wishes that when the time comes, your husband should be allowed to die at home if these are your wishes. I agree with others is to find out what, and to help you understand, his nursing needs are. Do express your desires that you as a couple should be together when the time comes. Find out about the arrangements that can be made until then consider for his needs to be looked after by the medics.
My best wishes to you both.

 

[canada]

You could ask the Local Authority for needs assessment for both him and yourself as carer, and then ask for a best interests meeting.

Does anybody have Health and Welfare Lasting Power of

 

[canada]

I do not have a health or any kind of power of Attorney, David has no money bar his pensions and we live in a council home.
I never thought about it for those reasons,
However now I wish I had put one in place for my Dave and his health.
I’ve just been on the phone actually to his health visitor Jo and she said this is being done for Daves and my best interest as Daves needs have increased.
They say there are 2 people involved in this , that is Dave and me.
I said I don’t care about me it’s Dave that’s ill.
Just care about him
They said it’s the best thing for him where he can get 24hr care.
I know I’ve been dragged down low lately but I need him with me too

 

[canary]

Hello @canada

I am so sorry to hear about your husband. Everyone wants to die in their own home, but it is not like you see on TV - their body shuts down slowly over several days. Many years ago when most people died in their own home people regularly saw people dying and there was always an older relative who had learned how to nurse someone who was dying and could stay with them, but this knowledge has been lost to the general public.
I was with mum for three days, sleeping on the floor, before she died in her care home and I found it harrowing. The physical changes can be upsetting and I would not have known whether it was normal or not. Luckily mum was in a care home and I could find someone and ask them and they were able to reassure me, or deal with it then and there (I would not have known what to do). Mum needed washing, changing and turning every two hours - day and night. She needed painkillers injected and other medication and the staff could administer it as and when required. Eventually she needed a syringe driver at 2 o'clock in the morning.
If you are at home alone (and you will be most of the time) it can be distressing wondering whether he needs assistance and/or waiting for the district nurses to arrive - particularly if he is in pain.
I know that there are people on here who have looked after a relative at home right up to the end, but most of them have found it traumatic.

Most care homes will now allow you to stay with them when they reach End of Life and IMO, this is the best of both worlds - you can be with them all through to the end, but the worry and decisions are taken out of your hands so you can just concentrate on being with them and reassuring them.

 

[Banjomansmate]

I have experienced both sides of your problem.
My husband was dying of lung cancer and said he wanted to stay at home and this is what we managed BUT we were lucky ( and I use this phrase in all honesty) because he actually died suddenly and unexpectedly when his heart just stopped beating without warning as he was holding my hand. He was totally compos mentis but physically deteriorating rapidly, without strength to get out of bed. Although on call, the District nurses were unable to access some of the medication he needed as it was out of hours and they were busy when I called on them. I have always been thankful that things turned out the way they did , both for my husband and myself, I do not like to think how we would have coped if things had continued for several more days as his deterioration continued.

Eighteen years later and The Banjoman was in residential care in the final stages of Lewy Body Dementia. He was almost immobile, curling up more and more and needing turning by at least two people on a regular basis. There is no way he could have received the 24 hour care he required if he had been at home. When I said my “Goodbye” to him he was semi conscious and I knew he was in the best place for him. I didn’t stay to the end because I believed his family should be there. When it came to it, his brother was holding his hand and while he felt it was the right thing to do he said it was a horrible experience just waiting for those last breaths.

Those are my experiencees and I fully understand your longing and wishes for your Dave to be at home with you where he belongs however I feel there must be a very strong reason for the medics and SS to be suggesting nursing care for him as they don’t come up with that option lightly! I think you need to find out exactly why they believe that it is the best solution. It might well be that they think it could be a long drawn out process which will be draining on you both, although I sincerely hope that is not the reason.
Whatever your final decision I am sure everybody will do their best to ensure the best care for Dave.