End of Life Care a decision of Home Care or Hospice

1summer, sending love to you. It’s good to see you’ve agreed with your husband that hospice care is needed. Our hospice also has hospice at home care, which enabled one of our close friends to die at home. Others have gone into the hospice as their care needs meant that was essential. All best wishes to you all ?

I may be too late to suggest this, but would at Hospice at Home work for you both? www.nahh.org.uk/about-hospice-care/what-is-hospice-at-home

My husband died a fortnight ago of prostate cancer which had spread everywhere. I cared for him in his last 4 months.

I received fabulous care from the local hospice in including carers twice a day and the community nurses can’t be faulted as they arranged the equipment, sorted out the medications, etc. I had no night help, neither Marie Curie nor McMillan offered me any.

Like you I had promised DH absolutely that he’d die at home and I kept that promise.

DH had been to two of the local hospices for palliative care and their care was beyond reproach, but they weren’t home.

I’m afraid you have to make the decisions yourselves but perhaps occasional respite care would be the answer.

All the best.❤️

I haven’t read all the replies to your post but I just want to say I’m so sorry about your situation and I feel for you. I have had close relatives who wanted to be looked after at home but in the end it was easier and better for all concerned for them to go into the Hospice as the nurses and doctors there were much more experienced on how to care for them, and keep them as comfortable as possible. I know that they originally wanted to stay at home but were so grateful the decision was made for them to go into the Hospice so please don’t feel have a second thought about putting him in a Hospice.

So glad to hear you and your family have made this decision.
We had to check the lifting people when they fall for a friend and it seems the health authorities do not like it as you could further injure someone.
You will all be able to relax. Your husband will have constant care and attention, you'll get some sleep and your final days together will be much pleasanter.
I will be thinking of you and hope you both find peace and contentment together.

I too am glad that you have discussed it and worked out a plan that is right for you all; and will be thinking of you all.

I'm so glad you've managed to speak with your daughter and your husband and come to a conclusion. I hope things are more comfortable for everyone.

That didn't come out as I meant it.
I meant if you are with him, that is what matters.

Thank you for updating us and I hope arrangements work well so that what remains of your time together is positive. I shall think of you.

My girl died in hospital, and that is the very least important thing about the end of her life.
She was in a side room, it was peaceful, and I can't remember much more than that.
It wasn't what she wanted, really, but it was how it had to be.

Hospitals, absolutely not, but a hospice is generally very different, really kind staff and a nicer atmosphere all round .... it is what I have written in my 'care plan thing' cannot remember what it is called? No to a hospital but yes to home or hospice,

Oh just read the above, am glad that you have made a decision and now you can have time to be a wife and just 'be' with him rather than the washing machine, it will be a horrid time all round but I think you will find the hospice will be quite comforting .... sending hugs x

Thank you all for your really kind and caring responses and for telling me your experiences. I think I know in my heart that the best thing is for him is to go into the Hospice. I know it fairly well and know how good it is, my MIL was in this hospice a few years ago and we all thought it amazing and did and still do some fundraising.
I just wanted affirmation from people who may have been in the same situation that I am going to be doing the right thing.
My daughter is saying lots of the same things, I am exhausting myself being a carer and little time being a wife.
I have little or no sleep, feel constantly fearful of him falling and know I need a break but feel guilty saying that.
My daughter has just read all your lovely messages, and said all these people really know and understand what You are going through. We have just spoken to my husband together and our Daughter is going to speak to the palliative care team tomorrow to see how soon he can go into the hospice,
Thank you all once again.

If I were you I would have another chat with your husband and see if he is agreeable to hospice care.
My husband's oncologist suggested hospice care to him " to give CocoPops a break" but DH refused. I had nursed DH at home for 14 months. DH viewed hospice care as a step too close to the grave so the prospect frightened him. He was only 50 years old and had not totally accepted his prognosis.
However I knew DH was deteriorating quickly and although I was exhausted (mentally and physically) I battled on until he died.
Our GP insisted I did not return to work but when I said I intended to he said, " Do as I say CocoPops"! and I took several weeks off and slept and slept. I was very grateful that my GP had pushed me to do so because my batteries had completely run down.
If your DH opts for hospice care he will have excellent nursing care and you can be with him as much as you like.
It is an extremely difficult time for you both. Do let us all know how it goes. You are in my thoughts.

Isummer I am so sorry that you and your family are having to make this difficult decision.
I am a hospice nurse and recently cared for my dad at home during his last weeks. Despite my knowledge and having 2 nurse sisters sharing the care it was exhausting work physically and emotionally and we suffered with health problems afterwards. We all felt privileged to have been able to keep him at home and ensure he had “a good death”. However those weeks took their toll on us all and I honestly don’t think I would feel able to do the same for my DH.
As a hospice nurse I have seen many families visibly “relax” when they arrive at the hospice and the nurses welcome them into the embrace of their care. It is not home and we know that but the staff will endeavour to make patients and families feel as comfortable as possible.
Of course it is a very personal decision to make. There is no right or wrong. Wishing you strength in the difficult days ahead

My OH sent the last few months of his life in an excellent nursing home. WE tried everything to keep him at home, but even the live-in carers said they could not cope without an extra person. My OH was very paranoid, but a part of his reasoning brain must have been working as he suggested that he should go into a nursing home. He received excellent care there and I was able to be with him during the day to keep him company and help feed him his lunch. He was talking about wanting to spend a day at home - which I would have arranged somehow - when he suddenly took a turn for the worse and slowly died. The home gave me a room of my own free so that I could be with him,

It was the right decision - I could not have coped much longer. He had good care.

My heart goes out to you - it is a hard decision I know, but it was so much better when I no longer had the responsibility of catheter, bowel care, etc. etc. and the worry of transferring him. I could spend more peaceful time with him, although his paranoia meant that he was very frightened all the time.

Peaceful time with your OH, free from the stress of care tasks might be worth giving consideration to. Also he received better care from the staff at the NH with their equipment and off-duty times to recharge their batteries.

So hard for you, and nobody can really tell you how tough it will be. Despite DH wanting to die at home he spent his last seven weeks in a wonderful local nursing home where he was safe and lovingly nursed. The upside was that I was able to stop being a carer and remember that I was a wife, and that was a great consolation to us both. Don’t feel bound by a promise willingly made but impossible to keep and take comfort from the knowledge that he will be so well cared for.

Please don’t feel guilty, you can undoubtedly be with him. A hospice is not a hospital. You will have so much support and there can be no doubt it will be a better experience for you than the exhausting time you are having now.

OMG I cannot praise the Kilbryde
hospice in South Lanarkshire highly enough...My father was diagnosed with terminal cancer and died 18days later....We tried to keep him at home but fought a losing battle as his cancer was so rapid... Spent a week in hospice and so did the family...We did alternate nights...They put in a single bed and 2 huge recliners for us....We got breakfast in the morning.. Nurses treated my father with so much dignity....just like he was their own dad....I will be eternally grateful to all the staff....I'm crying writing this.. Everybody deserves to be able to have this kind of care at the end of their life

I would give serious consideration to hospice care. You will then be able to give all your concentration to your husband in a calm and peaceful environment.

Your husband will probably be realising how much work he is giving you and may well prefer that the load is taken off your shoulders.

I worked in a hospice, and the standard of care was first class. Could you and your husband maybe arrange a few weeks’ respite, both to give you time to just be with him, and to let him hopefully be able to relax a bit more in the informal atmosphere?
I know it’s a difficult decision to make. I probably kept the Bodach at home for too long, as he also had a couple of falls, and it was just luck that he didn’t sustain more serious injuries. I know he seemed less anxious in the hospital setting, where we had input from Marie Curie, as he wasn’t fit enough to be moved to the hospice.

Isummer, I am sorry, if you can visit the hospice it might help make up your mind.
You are wearing yourself out and with the best will in the world it’s not easy. A hospice will provide excellent care and you can enjoy time together without the stress of the physical and mental stress that looking after a very ill person can bring.
Wishing you and your husband well.

I’m so sorry you are struggling. I did what you are trying to do. I nursed my husband for only 2 mths with end of life care but I really couldn’t of done it without the support of my local hospice team who arranged for carers to come in at first once a day but increasing to four times as he became more reliant. For the last 3 wks Marie Curie were able to give us a night nurse to tend to him so I could get some rest they were amazing truthfully.
The hospice support end of life care at home perhaps your GP can advise if this service is available to you, they also supplied a hospital bed and all the other paraphernalia needed at this time everything was arranged by them. You shouldn’t be struggling alone. Good luck I hope you get the help you need.
Please do PM me if you ever want to chat.

I’m sorry you are going through this.

My husband ended up in a lovely hospice after colon cancer spread to his liver and brain.

I would strongly suggest a hospice for your husband and for your own sake. I know that you have promised to take care of him at home but that was before you understood what a dreadful burden it can be to take care of someone so ill.

You, sadly, will become exhausted just doing the routine care. It’s not your fault at all but just the way it is.

If he goes into a hospice they can take care of the energy sapping care and leave you to visit (all day if you wish) in a ‘happier’ frame of mind. I found that I could take more care of my husband’s happiness as I wasn’t ground down by the medical and physical care. We could just hold hands and talk although the liver tumours caused jaundice and dementia type symptoms.

I have a lasting memory of him talking to the birds in the large tree outside his window rather than the physical aspects of caring.

Please consider yourself in this decision and be kind to yourself. A hospice is geared up for what is facing you and I’m sure they will be a great help to you.

I hope I have not been clumsy in what I have said and upset you. I wish you and your husband all the very best.

I'm so sorry 1summer. I don't have personal experience but didn't want to not respond.

PollyDolly's offered some good advice and it's worth considering that the quality of your time together may benefit if you're not physically and emotionally worn out by trying to care for his needs at home.

I would honestly do what helps you the most - living in that world 24/7 knowing how it is going to end is exhausting

It is up to each individual, I would personally need a retreat from it, to take a break once on a while.

So I vote for hospice care, not home care