Palliative care at home

Hi…my 31 year old daughter is now at the stage of palliative treatment for her non Hodgkin lymphoma…after a roller coaster ride since 18/02/18 of umpteen rounds of chemotherapy with numerous admissions to hospital with infections and finally two weeks of intense radiotherapy to her brain she now knows she cannot beat this awful disease. Half way through treatment she got married and now spends the week with me whilst her husband is working and the weekend at home. Helen is immobile and requires full time supervision and care. She has chosen to die here at home or in the local hospice and the reason for this is she has two wonderful step sons who adore her and she does not feel comfortable dying in what will continue to be their home after she has gone. As any mother knows this has to be the hardest situation to ever be in and I feel I have started my grieving already and yet it feels so wrong because Helen is still very much here and full of life even though as she says everything is such hard work. I cry allot but rarely in front of her unless she cries first…the other day after a GP visit she said to me “they are preparing for me to die Mum” it broke me…I just thought maybe there are some words of wisdom that will help me through the dark days that are ahead of me. Thank you.

My wife died at home 11 weeks ago today. It was a great relief to me that she was at home. Like your daughter she was completely immobile for the last few weeks of her life. We were fortunate in that carers came four times each day and I was available for her 24/7.She came home from the hospice 3 weeks before she died and then deterioration became more marked. District Nurses attended every day and the were brilliant and like the carers they had a good rapport with my wife. Being at home made it much easier for family and friends to visit. I slept in the same room and my wife had a hospital bed. I now feel it was a privilege and a blessing to help her in so many ways in the last few weeks and days of her life. I thought I may have a problem in being able to feel comfortable using the room after her death but it hasn’t been much of a problem. I’m not sure what else I can tell you but if you have specific questions please let me know. It will be difficult but the rewards can be significant in terms of your future thinking and peace of mind.

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Thank you sharing your experience with me…it is of some comfort to read how you now feel after your wife’s death…for which I am so sorry…I go from feeling proud that she has chosen to be here at her childhood home to extreme fear of whether I will be able to cope and it’s just nice to be able to voice these worries on here.

I worried whether I would be able to cope at an emotional level and at a physical level. All that was forgotten once she was home. I would have found it much more difficult without the carers and District nurses, and the continuous support from Sue Ryder. I’m really glad I got the opportunity. My greatest difficulty was my need to see my wife eat and drink and to take her medication. It was difficult to accept it when she gave up those things as it goes against the Carers instinct. It’s a great opportunity to show someone how much you love them. My son was with me at the end and my daughters had all had to leave earlier in the evening. My son told my wife it was all right to go, and she did without much delay. She died of a brain tumour, Glioblastoma, and she was peaceful, comfortable and pain-free.

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My daughter’s lymphoma is in her brain and the one thing she has said all through this is that she just doesn’t want to be in pain so this is my aim to ensure that she isn’t…am sure there will be allot more support for her when she deteriorates at the moment it is more the emotional support we both need.

I was a frequent reader of the Macmillan forums where there are groups for virtually all cancers. Through reading that I got good support and lots of information about how the illness would develop and I knew pretty much how she would die. It was massively reassuring to me and I’m confident my wife was reassured. I think you may find it useful to look there. Towards the end my wife’s confusion increased which might not have been a bad thing in hindsight.

Thank you I will have a look,

Hi Janey my husband passed away at home in October this year. We had some lovely conversations and I recorded on my phone a couple of messages for the kids and he said he loved me. I play these back and love listening to his voice. I just wish I had more of them. I was nervous about Chris passing away at home and we agreed if it got too much for me Chris could go to the hospice. But infact it was definitely home was the right place for him and he passed away surrounded by love. I don’t feel uncomfortable at home knowing this in fact it brings me comfort because I feel that he is still here with me. Sending love and strength to you and your daughter Miki x

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I am so saddened to read this - 31?!! Life is so cruel. My sis (38) who was really quite well one week then terminal for 9 weeks before she died earlier this year was largely at home. It was the most stressful time - in that we were trying to keep it ‘normal’ for her and not make too big a deal about it so as to not freak her out, meanwhile cherishing the time. Also being aware that she would want time alone with her partner. She was completely immobile too. My mum went onto autopilot during that time - focusing on medicating at the appropriate times and doing her ‘job’. It really didn’t hit her that it was that serious. No words of wisdom - but cherish the time. I read that ‘it comes quick’ and it did and quite honestly I think you don’t realise it because you don’t really believe it will happen. When my sister died, I actually without realising skipped out of the hospital. I felt light as a feather. She felt at peace. I know it sounds selfish, but it was such a relief. It had been the most anxious time ever. It wasn’t her to live this awful disabled life in her 30s. You have a long road ahead. One of anger and extreme sadness. Sending you loads of best wishes. Just really cherish the time. It’s amazing the inner strength that comes from nowhere, which has never been needed before - from all sides I found X so sorry

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I am so sorry Janey, its so hard. I know you want to care for her at home but make sure you can cope. I cared for my darling Martin at home but he insisted on being at the hospice when he needed it and he was right. The care he needed and received would not have been possible at home, for Martin anyway! Make arrangements with the hospice just as a fall back position. Your her mum and if you get sometime to just be that and not be her carer, those times will be so precious. I cared for Martin at home with the carer team, but when he needed to be hospitalised again due to an infection, the hospice was the place to be, they’re were brilliant at caring for not only him but all of us. Its got to be so hard for you but make the most of your time and smile when you can. Tell her you love her and remember that smile and look she gives you back its so precious. Sending love Bernie xxx

Hi Yorshire lad, is there a specific page of the McMillan website you are referring to with regards to what to expect?
My pal who is like a father to me is at end of life and I am the sort of person who want / needs to know what will or could happen so I can prepare myself as much as possible.

At present he is still mentally alert, carers 4 times a day and District Nurses to address the wound where his cancer is (sarcoma), we have been informed it is likely to be pain free and depending on which organ is affected first, will determine how he passes so as you can see, I’m needing some more insight to prepare myself to be as strong as I can for him.
Hope you are coping. :slight_smile:

Hi Frank, Your question just randomly popped up on my email this morning but I would LOVE to answer you if I may!.. This is the SINGLE thing I repeatedly kept asking McMillan and I never got an answer. I remember at this hugely anxious time thinking that if I just knew what to expect things would have been easier. My story is that my sister, only sibling, 37 got diagnosed with cancer which as she said was ‘everywhere’. It truly was - she went from being fine and enjoying Christmas to being diagnosed with being riddled and then lived for 63 days. It was in those 63 days I repeatedly asked McMillan. Anyway - the simple answer is - they’re immunity becomes so low / non existent that any infection can’t be fought. My sister had lung cancer too and a drain was fitted. This wound became infected which resulted in Sepsis and then organs shutting down and then the end. My sister’s best friend, Jess (27) also died from the same - she lived for 11 weeks, not 9. She was the same - she died from a flesh eating disease. Again her immunity was zero. These were both two gruesome deaths and I really hope you are not freaked out - but basically, I am guessing when your immunity is that low, any infection, germs could do it. It happens quickly too, enjoy every moment my friend. X

Hi Frank, I’m very sorry to hear that your friend is at the end of life. We have a page on the Sue Ryder website with information about What to expect at the end of life, which you might find helpful.

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