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

SusanRuth

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

  • Offline

    Hello

    My Mum was diagnosed with Terminal Pancreatic Cancer on 2nd Jan 2018 and Mum died on the 31st Jan 2018.  Mum wanted to die at home where she was born there and had lived there 75 years.  We had brilliant care from Mum's GP practice, Macmill, daily carers and we also had night sitters for 3 nights.  Mum had morphine drive fitted for the last two weeks of her life and we had mediaction for the driver delviered daily. It was comforting for me and my sister to know we were doing what Mum wanted. We could not save our lovely Mum but we held her hand till the end and made sure she as comfortable.  Mum also had so many friends and they were able to call in and see Mum.  It was heartbreaking to watch my Mum fade away but she just wnted to be at home.  Take care

     

  • in reply to Jenlou

     Hello there, thank you for taking the time to respond and I’m so sorry for the loss of your lovely mum. 

     I too want to do what’s my lovely husband wants, But I have to go on living in the house and if we make the wrong decision for us both this isn’t something we can “do over“. I don’t want to wipe away the memories I have of 30 years here, of love, laughter and so many family occasions and parties  and be left with the memory of my beloved husband dying here.

     It’s just so difficult isn’t it? 

  • Offline in reply to SusanRuth

    Hi I’m just taking it a day at a time. The kids are keeping me going. I’m sorry about your husband, I hope he goes peacefully. I don’t know what else to say. Take care xxx

     

  • in reply to neverhappyagain

     There is nothing else to say, that is all we can wish our love ones who are in this position. Be kind to yourself honey, I will keep in touch xx

  • Offline

    Hi there; have just got back from being away and saw your post.  So sorry you are having to go through this.  Perhaps you should speak with Steve about your conflicting wishes as you might end up feeling bad that you were unable to fulfil his wishes.  When my next door neighbour died of cancer at home there were no problems but I realise things can vary from area to area.  His (grown-up) children were out at work - they lived in other parts of London and it was mostly his wife and myself who spent the time with him.  Also a regular number of visitors from family and friends.  In his case the nurse came quickly on the odd occasion when needed in a hurry and his wife was pleased to have him at home where she could spend more time with him.  If you can share your worries with Steve you might be able to sort it out between you without adding extra worries  to your stressed days.  Thinking of you.  Annie

  • Offline in reply to SusanRuth

    I'm so sorry about your husband and the difficulties you face. .  Since Norman was diagnosed I've spoken to a few ladies in the same situation,  most struggled with husbands who wanted to be at home and said they would never want to go through it again.  From reading your replies it seems you have made a decision.   My thoughts are with you Susan Ruth.  Love Carol x

  • in reply to Annieliz

     Hello, thank you for responding. Our doctor has just been round and offered a third option, a local nursing home which Steve can move into as last minute as necessary.  

     My issues were not all around whether or not I would be able to get the right amount of care and support for Steve but probably more around living in the house that we have shared for our entire marriage life if he died here. Some people would find that comforting I’m not entirely sure I would

     Thanks again, take care 

    xxx

     

  • in reply to Dor06

    Thanks Caz – I hope you and Norman are  keeping on, keeping on! 

    xxx

  • Offline in reply to SusanRuth

    Can I offer my sincerest condolences to you, I have only just found out after reading another post.  Love Carol 

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