Palliative Care - Where do we go from here?

My mum is in hospital & we were told last weekend that she has untreatable (secondary) cancer in her stomach. It’s now just a question of managing her symptoms & keeping her as comfortable as possible for whatever time she has left. The doctor said hospital isn’t the best place for her & that a nursing home or care at home would be best. My brother & I have already taken it in turns to care for Mum at home for 2 years & we are both exhausted. I have a demanding job as well as 2 children & a husband who have seen very little of me. My mum is very conscious of this & wants us to bring in professional help now. The doctor said they’d put in place a “Gold Standard Care Plan” to support Mum, involving dieticians, district nurses, MacMillan, GP etc but absolutely nothing is happening. No phone calls, no-one to see Mum to assess her needs, no follow up of any kind. She’s just sat there in a hospital bed feeling very weak & poorly. I’d really welcome any general advice on the order in which things happen re. Care plans, how long it all takes, is it better just to go ahead & arrange our own (self funded) care, is care in the home better than residential care etc? I just don’t know where to start. My mum would prefer to be at home but Im worried about her being on her own between carer visits, at night etc. She’s happy to try residential care & see how that works out. Any words of wisdom would be gratefully received. Thank you

  • Hi Daisy, I can only say from my own experience, that most homes these days are dual registered and thus are both residential and nursing homes at the same time. It could be good for you to call some and see if you can go visit and have someone explain how it all works? 

    The one where my friend's husband was, and the one my father-in-law was in, had 3 floors. 'Residents' were on the ground floor, then as the floors went up, the nursing needs increased. Which meant that as a loved one got more poorly, they only changed floor, not home. 

    My father-in-law wanted to stay home alone, but when they told him how much the constant care would cost, the home was actually much better value. 

    I hope this helps. 

  • Hi, sorry to hear. My mum was put on "Gold Standard" months ago but nothing changed from her GP or District Nurse etc. Get the name of the hospice you McMillan Nurse is allocated to, the consultant will know. Honestly the McMillan Nurse has been my go to person for advice or help with medication etc. The Oncology Dept also has a social worker attache who has been useful for some practical stuff. Once McMillan have you int he 'system' things flow well from there in my experience. There are so many directions need pushing but make the nurse the priority and things will work out from there I'm sure

  • Many thanks - the MacMillan team have been in touch & we’re starting to make progress now. Not quite Gold Standard but heading in the right direction & lovely helpful people. 

  • Daisy,

    Sorry if this has come up twice, I'm not sure at times if my posts go in right place.

    My wife got similar news and went into a hospice. The care team have been simply wonderful, just wonderful. It's worth looking at the nearest one to you, that is if your mum is happy to consider it as an option. 

    WDJ

  • My dad has come to be carec for at home. I'm finding it a total rollercoaster..we have everyone in place to support but it is draining and emotional and numbing for me. 

    I worry about everything. From not knowing the process, the prognosis etc.