Where to die - Hospice or Home? Thoughts and advice please

Hello

My wonderful husband is nearing the end of life.  He is still completely alert, up and about, and smiling.  But pretty much house bound and eating/drinking very little.  We've been told he has anywhere between 2 and 4 weeks, but the District Nurse seemed to think he could have longer.  At the moment he is pain free, but suffering quite badly with phlegm, coughing and last night some sickness (he has oesophageal cancer).

Steve has elected to die at home and I am trying to support him in that last final wish.  We live in an old Edwardian end of terrace so when the hospital bed arrives it will have to go into the front room, (it won't go up the stairs) and our existing furniture moved out.

We have been assured by all our medical team and the District Nurses/Macmillan nurses etc.that they will keep Steve as comfortable as possible and manage his pain and symptons.  However I am concerned that we are ultimately taking a risk, one I am not sure I am comfortable taking.  What happens if we can't get medication or a nurse to him fast enough?  I read today on the BBC website that Rachel Blands (of YOu, Me and the Big C fame) husband said she really struggled in the last few days of her life and had they known it would be such a struggle, he feels sure she would have elected to go into a hospice.

My other fear, very selfishly, is having to live in the house that Steve died in after he has gone.  I worry I will be haunted by memories of a painful struggle if that were to be the case.

Does anyone have any help or advice for us?

I should we add have had BRILLIANT, FIRST CLASS care by the community team thus far and I know our hospice (Haywards House in Nottingham) also have a fantastic reputation.

THanks everyone.

Sending love to you all

  • Hello

    My wishes will be a hospice (I have bladder cancer)

    My beloved hubby McMillian nurse recomended hospice he went into our local one but fell & broken his hip was taken to hospital he died before having the hip op.

    My brother his first wife died in hospice (her choice)

    His later partner wanted to die at home but a few days from the end of her life elected to go into hospice she died 2 days later.

    Its a personal choice if alert enough to make it.

    But please don't feel guilty if you have to make the choice for him

    Hugs x

  • Good morning SusanRuth

    My amazing husband has terminal bile duct cancer. We have spoken about end of life care and he has chosen to go into a hospice. Mainly because of my mobility issues due to polio at birth. He is still up and about at the moment but realises when the time comes that we will need a lot of help. The Macmillan nurse explained that they can take all that responsibility away from me leaving me free to be with him to be able to hold him and talk without the worryof everything else.  I also would not want to do continue living in the house that my beloved husband had died in, I think it would be too hard.

  • Hello hunny ..

    I would choose a hospice for me ... but you have to weigh everything up ... my thoughts are in a hospice, you don't have all the work.. so you get more quality time with your wonderfull hubby ... and I think they let you stay as long as you want to ... 

    My heart is always with you both ... and a vertual hug as always ... Chrissie

  • Hi again,

    This is a question I’ve been struggling with since I was diagnosed and I can’t decide - partly for some of the reasons you mentioned.

    For what it’s worth, my Mum’s end of life experience at home was a good one. They’d already moved into a bungalow, which helped. 

    Mum had my Dad as her primary carer, the GP made regular home visits and he had support at different stages from community nurses, MacMillan nurses and Marie Curie nurses. Towards the end the Marie Curie nurses covered the nights and MacMillan the days but that may just be a local arrangement. 

    Her pain management was good as the GP was clear in his communications about maximum dosage and when her condition deteriorated she was on a syringe driver.

    My Dad is a very logical person - he redecorated the bedroom and changed the furniture not long after the funeral as he didn’t want it reminding him of her final days.

    I’m still undecided - I can see advantages in both settings. 

     

    Best wishes

    Dave

  • hi Susan

    my husband died in hospital and it was organ failure. He never got to the really poorly stage and never got to the terminal stage either. I was having nightmares though about it if it did get to the terminal stage and I would have probably wanted him at home but then was worried what memories me and the kids would hold each time we walked into a room and remembered him lying there so I know where you are coming from. I would say just do what feels right. Sorry I can’t be more help xx

  • hello there

    thanks for that, I hope you're doing okay 

    I know each day must be so hard but hoping you are finding some sunshine after the rain.

    Ruth x

  • Thanks Dave, i hope you never have to make the decision - it's so wonderful that you are still going strong - LONG may it continue

    x

  • Chrissie - thanks I think overall we're going to go for a Hospice for all the reasons you've just given

    xx

  • Hello, thanks for taking the time to respond. I wish you well on your journey

    I think we are ultimately going to go for a hospice for all the reasons mentioned by you lovely helpful people

     

    xx

  • Hi Dotty, thanks for your help and advice.  I think it's going to be a hospice.  I wish you and your husband lots of love and peace and I hope you have many months of quality time ahead of you to make more happy memories.  Alas our story with end sooner than either of us could ever have dreamt but it is a story filled with so much love, laughter, joy and happiness and that will keep me strong in the dark times ahead.

     

    Ruth x