Hospice decision

Can anyone help me with decision about hospice care? My Sister age 81 has PSP for about 4/5 years in a nursing home which is o.k. she is fully dependant now doubly incontinent and has to be fed, can't communicate any more just goes from recliner chair to bed and that is all her life consists of now. Would she be better off in a hospice, maybe getting more care and attention, just don't know if she is coming to or in final stage of this horrible disease. We are in Scotland. Would like to hear any views on this.

7 Replies

  • You could get the hospice involved and they would be able to advise you about whether she needs to be transferred into there care. But speaking from experience if she is settled in a care home and she is being cared for and her needs are being met she would be better off staying where she is. Most care homes are able to deal with palative care. Sometimes a move can cause major upset to peoples systems and hasten their demise

    and to be honest if she is still being got out of bed and is eating it sounds as if she isn't at the end yet. Janexx

  • Hi nanny goon

    My mother sounds similar to your sister but she still has some communication. She was diagnosed in September 2012 after going into a nursing home. It's a scary business choosing but we asked her social worker and were lucky with the first one she went into. We are happy where she is and we can pretty much turn up anytime any day. My mum wasn't keen, anymore than you or I would be, but that is partly because she was in denial about the level of care she needed. She is very settled and her care is good. We are fortunate to be able to see her and take her out 3 or 4 times a week which breaks up her week. There is a website which I think is care home.co.uk but I am not sure if it covers Scotland, which is a good place to start. Good luck

  • Thank you Rose is settled in the home as far as we can tell although she can't talk and tell us she can say a few words but can't answer any questions not enen thums up or down or squeezing my hand. Like you we can more or less visit anytime and feed her if it is meal times she has a lovely big room where we can go and play music and have so private time but I just don't know if I should be doing more? And if she is end stage and ready to get hospice care?? Will see how she is today and try hard to decide.take care and thank you.

  • Hi Nannygoon, have you talked to the care home? They are fully aware of your sister's needs and will know if they will be able to cope in the future.

    Lots of love


  • Yyes have spoken to them in the past but not about hospice care, just that I would not want her put into hospital unless it was something they could not cope with, it's just recently she seems so sad looking and no communication I thought maybe a more sort of end of life care and compassionate care, it's just not knowing that gets me.

  • I think it's just a case of speaking to anybody and everybody, for their advise. Try the PSPA, as well as your local hospice, although I do have to agree with the others, if you think she is happy and is being well care for, what else could the hospice do?

    Lots of love


  • Hi Nannygoon

    I agree with Jane that if your sister is settled in the home (and it sounds lovely), and you are happy with the care she receives, it might be best to let her stay there. I think mum is a little further on in this awful illness, has had a pallative nurse for nearly 3 years, and health has deteriorated dramatically in the last year. However, the hospice can't admit mum permanently as we don't know, and no-one can predict, when end of life might be. We have mum didn't have long for the past two years, and she is still battling on and not ready to give up yet, although I do sometimes wonder if it is because she is peg-fed, so no risk of aspiration.

    Keep strong, thinking of you xx

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