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Home or nursing home for end of life?

Discussion in 'I care for a person with dementia' started by rubytubes, Jun 3, 2017.

  1. rubytubes

    rubytubes Registered User

    Jul 11, 2015
    Hi, I wondered if anyone can offer advice about my dilemma.

    My dad has been in hospital for the last 3 weeks, having gone off his feet a few days before. On admission he was diagnosed with a twisted bowel, but we agreed with the doctors that surgery and a stoma was not appropriate as he has severe AZ, and therefore expected him to last only days/weeks. Unusually his bowel spontaneously untwisted, but by then he had deteriorated. Prior to admission, he lived at home with my mum with 3 days a week at daycare. He was able to walk, and ate OK but needed assistance. Now he is completely vacant, is not eating or drinking (coughs at even a teaspoon of food or drink) and hasn't been out of bed for at least 2 weeks. He's on a drip but has lost over a stone in the last 3 weeks.

    The doctors have advised that he is no longer acutely unwell (eg. no bowel issues, no pneumonia, no infections, no stroke), but that it seems likely this is a progression of his condition. They have tried to do a swallow assessment, but failed as he can't follow instructions. They are arranging for a nutritionist assessment next week, but the likely end result is that they will now withdraw IV fluids for end of life (we have declined PEG or NG feeding). To be honest, he has just stopped engaging with us, and clamps his mouth shut when anyone tries to feed him. I wonder whether he has made a purposeful decision that he has had enough or whether he has just completely gone mentally.

    So my dilemma....

    The hospital are talking about discharge for end of life - either home or nursing care home. My mum's automatic reaction is that she wants him home, but I am not sure that this is the right thing for either of them. He hasn't recognised their house as his home for 2 years regardless. We will be speaking with the discharge nurse next week to plan, but I want to make sure we ask the right questions.

    My concerns about him going home (I don't know if these are true or not): he won't have access to pain relief, mum will be alone with him most of the time, it will traumatise her (neither of us know how horrible this is going to get), association of their home with his death...
    Otherwise we would hope to get him into the nursing home where he goes for daycare. At least there, they have people who have seen it before, he'll have easier access to pain relief injection, mum will be supported by staff who she already knows and likes.

    I'd be grateful for any advice. What things do we need to consider in making this decision?

    Many thanks
  2. Hamster Wheel

    Hamster Wheel Registered User

    Apr 20, 2017
    Sorry haven't experience in this but would a hospice be appropriate?
  3. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    From what I gather many hospices are so short of beds that they won't usually take on dementia sufferers.

    I know when f-i-l was dying last year of cancer and we wanted him moved to a Hospice, we were told they had 6 potential people who needed hospice care and had to decide in panel who had highest priority.
  4. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    hello rubytubes
    I'm sorry to read of your dad's condition
    I'm wondering what your mum has said - you say her automatic response is that she wants him home, as though she hasn't thought it through but maybe she has - maybe, as your dad has been at home all this time, your mum wants him to go back there for however long he now has, whether or not he recognises his home, or even whether or not he recognises her
    I appreciate that you are concerned for your mum now, and for her future welfare - maybe this is what is best for her despite how challenging it may become; she is willing to accept that - declining interventions is a signal that your mum is aware of the situation and accepted that this is most probably moving towards the end for your dad
    the discharge nurse will organise a full home care package - ask about end of life meds and visits from the district and community nurses - ask about a hospital bed and any other equipment to make your dad comfortable, and consider your mum's needs re sleeping - maybe also contact your dad's GP and ask about a referral to Marie Curie nurses, to help in the nighttime - maybe contact the Admiral Nurses for advice
    maybe this factsheet End of Life Care will have some useful info for you
    a hospice may not be what you are considering, or may not be able to take in your dad, but if there is one locally, a chat with the staff there may ease your mind and provide you with some concrete suggestions for the care of your dad
    there have been members here who have taken their loved one home, and others who have chosen to move them into a nursing home - if they see your title, I'm sure they will have some thoughts to share with you
    I hope you and your mum are offered the support you both need at the meeting next week
    best wishes to you all
  5. Hamster Wheel

    Hamster Wheel Registered User

    Apr 20, 2017
    Ting help

    It makes you think lemonjuice! It just seems to be a struggle getting help from the system when people are at their lowest :(
  6. marionq

    marionq Registered User

    Apr 24, 2013
    When my BIL reached this stage his wife took him home. A hospital bed was placed in their sitting room and he got regular visits from medical staff. It was fairly traumatic for her but she did have a lot of help from her children who bathed and shaved their father every day.

    It will depend on how healthy your mother is and how much support she has whether or not bringing him home will work.
  7. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Mum has recently died from her Alzheimers in her care home. She had had a fall and broken her hip. She had had surgery, but although she initially seemed to make a good recovery she suddenly went into decline. The hospital discharged her back to her care home where she had lived for nearly 3 years. She survived 17 days with no food or drink, although I gather that most do not last this long. Initially the staff hoisted her into an armchair, but as soon as this started to distress her she remained in bed and the staff would turn her every couple of hours. I found the last 3 days pretty harrowing, although I thought I knew what to expect, and stayed almost constantly in her room for this time - the home made up a camp bed for me. I was grateful that the home gave me meals and an almost constant supply of tea, as I wasnt able to think about anything else apart from mum. They continues to change, wash and turn her every 2 hours, night and day. The only problem we had was that her home was not a nursing home, so there wernt any nurses on duty during the night and although the carers were lovely and could change, wash and turn her, there was no-one on the spot to give pain relief. Consequently, although she had had her medication already prescribed and made up (the "just in case" box) there was no-one on hand to give it to her and we were dependent on the district nurses to come in. This had been arranged, but obviously, they had to travel and there was a delay of a couple of hours before they arrived. Once she was put on a syringe driver it was all much better.

    This is only my experience and others will have their stories.
  8. LadyA

    LadyA Volunteer Host

    Oct 19, 2009
    If your dad is to be discharged home for end of life care, then all the pain relief etc. will be provided. I'm not sure how it works over there, but it should be arranged as part of the discharge (and DON'T take him home, unless they have the proper care in place for him at home!). It should be arranged for carers/district nurse etc. to come in, it won't all be down to your mum.

    When my dad died at home 16 years ago, he had been in a hospital bed in the living room for a month. When he was gone, my mum immediately had that room completely redecorated, carpets, curtains, furniture, everything. She said it helped, to totally change the room. My own husband died in a nursing home. But when he first moved to the nursing home, I moved out of what had been our bedroom, and into the spare room, making that mine. I just couldn't go on sleeping in "our" room on my own.
  9. rubytubes

    rubytubes Registered User

    Jul 11, 2015
    Thank you all for your advice and experiences.
    I think the crucial part is that we find out from the discharge nurse the reality of each option, and then mum can make an informed decision.
  10. jknight

    jknight Registered User

    Oct 23, 2015
    My lovely dad had cancer. He was discharged from hospital but no one told us he was end of life or that someone had written that he wanted to die at home! His GP told me he only had a couple of weeks left. A week later he developed pneumonia. I called an ambulance and he died in hospital. He didn't know he had gone to hospital and mum was spared seeing her husband of 64 years die in their home (mum wouldn't have coped well with it and mum's needs were always dad's priority)
    Bit of a ramble.......
  11. SouWester

    SouWester Registered User

    Dec 11, 2012
    My experience

    My Mother's situation was similar and just for once against all my better judgement I kept my mouth shut. Just for once I was right.

    End of life came in a hospice. As the final moment approached my father was told to go home 'There is no point in you being in on her death'.

    I nearly accused him of cowardice but on reflection wondered if maybe they were able to 'speed up' the inevitable process. I hope they did.

    Either way I now realise it was the right decision and he suffered far less anguish.

    My wife and I were with her mother until the final moments (Alzheimer's) in a care home and maybe that was right.

    I now have to face her death as she has early onset which has speeded up recently.
  12. 17-yrCaregiver

    17-yrCaregiver Registered User

    Jan 30, 2015
    Caring at home

    If you decide to care for your spouse at home, you should review the book, Alzheimers Care with Dignity, published by Headline Books in the USA.
  13. Baggybreeks

    Baggybreeks Registered User

    Mar 22, 2017
    #13 Baggybreeks, Jun 17, 2017
    Last edited: Jun 17, 2017
    Husband in care home

    In a way I didn't have to make the choice.
    My 72 year old lovely man with mixed dementia (diagnosed dramatically 4 years ago on holiday , after having a psychotic episode, and admitted to a pschiatric hospital in Germany) became aggressive 3 years later, towards anyone trying to help at home, and the doctor organised for him to go as an emergency, into A&E.
    After 16 HOURS overnight waiting for him to be found a bed, causing chaos as he rampaged around A&E, he fell asleep for 2 hours , only to get up again, in the small ward, where he was temporarily put. I had been with him all this time and when he fell on the floor the nurses finally took notice that I couldn't manage.
    I left to go home to sleep and returned 3 hours later, and found he had been transferred to the psycho geriatric ward where they had assigned a security man to protect the staff from him!
    Finally he was given a small sedative injection and he calmed down enough to be confined to a quiet relatives room where we found a cd player . Dusty Springfield got through to him and the nurse managed to give him another small dose of sedative.
    At this point at last, the doctor came to speak to me .
    My husband was being sectioned and would be taken to a secure ward in the Mental Hospital.
    He spent 4 months there until his medications had settled him. i found a care home with nursing care, nearby, as he was not well enough to come home.
    He also has had 10 seizures so has been treated both in hospital and at the care home, so I have had the discussion about DNR.
    It is such cruel sad fate for my intelligent creative husband.
    I had no choice.
    I looked after him at home for 3 years ,and he was double incontinent for the last 6 months.
    He hardly knows me now, but smiles, and enjoys listening, and whistles along, to his favourite music.
    I visit him every day to help him with his tea, and walk in the garden where he can shuffle
    round with my assistance.
    I never thought our 48 years of marriage would end like this, but I value the time l have with him as he disappears. He is well enough looked after, better than I could manage at our home.
    But I miss him terribly. And grieve, in limbo.
  14. Baggybreeks

    Baggybreeks Registered User

    Mar 22, 2017
    Care home v home

    Sorry. I told you my situation, which was forced on us, but from my experience, if you can find a decent care home with dementia nursing, that seems to be the answer.

    Caring is exhausting and my health suffered.

    It's a difficult decision and I keep asking myself if I could have my husband home. But in reality I couldn't manage anymore. I can enjoy our short time together peacefully, as a couple again, rather than resent my role as carer.

    I hope this helps. It is not a clear cut choice, and has to be thoroughly discussed.
    Maybe if you can find a respite place for a short time, it will help decide what is best for your family.
  15. Baggybreeks

    Baggybreeks Registered User

    Mar 22, 2017
    Reply for Rubytubes

    I hope you have managed to come to a decision.

    It's very hard for a wife to give caring over to a nursing home and your mum may already have done this in the last 10 days.

    I wish you all the best at this sad time.
  16. Lancashirelady

    Lancashirelady Registered User

    Oct 7, 2014
    My dad was put on end of life care and my Mum was adamant she wanted him at home. His own reaction to going home from hospital was one of delight, though he was incapable of showing much emotion by this time. I am so grateful that Dad had excellent palliative care - NHs carers twice a day, district nurses daily and always on the end of the phone. I cannot fault the care he received, though I would say another family member needs to be there besides your Mum unless you can get extra support eg Macmillan or Marie Curie nurses. I stayed for the last week of my dad's life and only had to call the district nurses once. They were brilliant and came within the hour to make Dad comfortable without Mum even realising anything was happening. His passing was painless and everything I could have hoped for.
  17. jknight

    jknight Registered User

    Oct 23, 2015
    Oh, Souwester,

    How awful for you. You will find a lot of support on this forum.

    Sending you hugs xxx
  18. carer13

    carer13 Registered User

    Dec 24, 2012
    Home or Care/Nursing Home in general

    My wife has been in a Care Home for 14 minutes months and hasn't really settled just seems resigned to being their I see two or three times a week.
    Her general demeanour is calm and due to the CPN putting her on resperidone doesn't
    seem to be declining. I would like to know if she can have a assessment as to where she is in her decline because it seems strange to me that the care home doesn't give a monthly review am I asking too much?
  19. rubytubes

    rubytubes Registered User

    Jul 11, 2015
    Thank you everyone for sharing, I'm very moved by your personal stories and grateful for your support.

    Things have not progressed much for us and we continue in limbo. Dad is still in hospital, now 5 weeks without food and becoming skeletal. The hospital has been keeping him going on IV fluids whilst he was passed around continual referrals - dietitian, nutritionist, SALT, care of the elderly team, psychologist and neurologist, several times each! I think the main issue was that he is on a surgical ward and they just don't know how to deal with this situation.

    They have finally admitted defeat and accept nothing can be done. Fluids were finally withdrawn on Thursday and he just seems to sleep all the time. The discharge nurse passed us on to the Continuing Healthcare team, who apparently arrange end of life placement and funding, although we haven't heard anything from them yet despite being referred on Wednesday and being classed as fast-tracked. And unfortunately our 2 preferred options - local cottage hospital and nursing EMI home where dad had daycare - have no capacity.

    So mum is back to saying that she'll have him home for the end, although I wonder whether he'll last long enough to arrange it. She's cleaned the dining room and been looking at private companies who will provide carers for night-time. I guess we'll just have to wait to see what the team offer us and make the best decision we can at the time.

    Thanks all.
  20. Shedrech

    Shedrech Volunteer Host

    Dec 15, 2012
    hello rubytubes
    my gosh, what a sad situation for you all
    you and your mum must be beside yourselves, just wanting your dad settled
    if he comes back home, do consider contacting his GP for a referral to Marie Curie nurses; they support at end of life for everyone (not just those with cancer as some believe)
    much sympathy and best wishes to you all

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