Hospice at home vs nursing home… help!!

[Libby]

Hi all, My mum was diagnosed with inoperable pancreatic cancer on 1st July. She’s 78 and not able to tolerate any chemo. She had a bile duct stent fitted in hospital after which I transferred her to a lovely nursing home where she is very comfortable. She also suffers with Alzheimer’s and can’t remember her diagnoses which results in her not understanding why she is in the nursing home. She has enjoyed her ‘convalescence’ but would now like to go home. Sadly she wasn’t coping well at home without my help prior to her cancer diagnosis and now I feel she will need 24hour care despite still being physically quite well for the time being. I know she wants to go home but I believe she’s in the best place for her medical and practical needs. Does anyone have any experience of a hospice at home system that they can feed back to me? I don’t know what to do! Thanks! 

[Borobi]

Hi. After unsuccessful attempts to put a stent in, my husband came home with a brilliant care package. Carers came in 3 times a day (in fact I cancelled most of them as I didn’t need that level of support). The district nurses came twice a day to manage the syringe driver. Hospice nurses kept the care plan under review and I could ring the hospice at any time and they’d send the Marie Curie nurses out if needed - including at 2am. They provided equipment. I can’t fault the level of care. It was exhausting because he wasn’t sleeping well so I was surviving on a few hours sleep, but it didn’t go on long. I guess if it had done I could have requested overnight cover from the Marie Curie nurses. With pancreatic cancer where you can’t have chemo your mum probably won’t have very long so I guess it depends on whether you’re able to devote the time to caring for her. I wouldn’t have had it any other way, but you feel differently when it’s your husband. Hope this helps. 

[Libby]

Hi Borobi,

thank you so much for outlining your experience for me. Not easy for you to do so very very much appreciated. I’m so sorry to hear about your husband but by the sound of it you did everything in your power to make him happy and comfortable. 
Unfortunately I can’t care for my mum in the same way for 24hours a day, I have children at home and I work (only part time which helps) but it sounds from what you say as though the hospice care at home is not only possible but really effective too. 
I think I will contact Marie Curie nurses and see what the provision is in her area. 
thank you once again. X

[Skippy]

Dear Libv I'm so sorry to hear of the prognosis of your mother. I'm female aged 69.

 

I cared for my 6' 4" 75 yr old brother for the last few years with PC and in the early days we coped at home when he was on his legs and self mobile. He eventually became frail with his loss of weight and a build up of fluid retention in his lower limbs.  Overall he and I initially coped well. I claimed Personal care allowance for him which paid for 3 hrs per week attendances by private care agents. They assisted me in all areas from house work food prep and personal care of my dear bro.

Then when he became more immobile we were assisted by the Drs 'home care plan for him' in addition. The nurses were on hand at short notice, but his last four weeks of life became so very scary and difficult and distressing. I rang the NHS helpline on one occassion and was ringing over an evening several times but the line was so busy. No one to talk to. One evening he complained of being unable to breathe when in his bed. I felt the urgency around us, but there was no medic at hand, no reassurance or ready to hand equipment to make him comfortable. I know the Care package of ' pop in helpers' are there "24 hrs" but usually its not at the time oclock moments when he really needed it and to watch your loved one in such distress is heart breaking. His mobility in the latter 3 weeks ended and he was confined in his bed. I couldn't lift him. Toileting and personal washing was difficult for us both. We needed the experts and not at fixed timed appointments My dear proud brother volunteered to enter his local Hospice. He became a different new regenerated person. He looked more relaxed, pampered, reassured of his safety and he loved his professional help in the Hospice. I was still with him by his side and we were able to spend our precious moments being socially chatty. The pressure was lifted from me, and we had the reassurance of the M Curie staff with us. They are so experienced in measuring a patient's distress they have confidence to deal with the situations with this disease. They calmed an awful nightmare situation. If I were in the same situation I'd not hesitate to hand myself over to a MC hospice and I pray that a slot would be found for me. My brother died peacefully and the measured timing of his fading away was due to the exceptional experienced staff. Id gladly put myself in their hands. If anyone becomes so poorly with limited time for life  I'd pray they wont leave all their caring needs to their loved ones or partner/their children etc - as they will have to cope with the memory of it all and I am sure, they will never feel they DID enough. 

Home dying is not for me. I've been with my sister who died at home. Id say Hospice care is the best esp for the patient.