My wife came home from the hospice on February 24th so it will be eight weeks on Tuesday that I have caring for her at home and now we are coming to the hard yards. For about a week now she has been all but bed-boun̈d, only getting out to use the commode and there's the rub. Normally i help her to do the transfer, but twice this week she tried to get out whilst I was in another part of the house (watching on a baby monitor) and she fell and we have had to call the paramedics to get her up. Happily, she was uninjured on both occasions and the paramedics arrived quickly. Then yesterday afternoon she needed to use the commode and I helped her transfer but swivelling around from the bed to the throne we lost our balance and down we went in slow motion, landing very gently on our carpeted floor. I was able to get up and call for help only to be told the wait would be at least two hours and likely longer. Well, after an hour she got really fed up and said could I try and get her back into bed, which I did with some improvisation to use the raise and lower function of the bed to do the heavy lifting.
So, last Monday, when she could no longer get to the bathroom with the carer, it was decided that bed baths would be the way forward. However, this requires two carers for all parties to be safe and the care agency hasn't had sign off on the funding for this to happen so I have stepped into the breach. The big problem though is her using the commode. Everyone, the carers, the district nurse, the CNS, the paramedics and the Early Intervention Team say the same - "tell her to do it in the pants". But she refuses to do that, my darling is a very determined (some would say stubborn) and she wants to keep her dignity, something I am desperate to support. So we come to the point of this post, does anyone have experience of this situation? Any ideas, no matter what they are, would be most welcome.
One last thing. Today there has been a noticeable drop in her appetite and fluid intake. I know that this is to be expected and is a sign that the end is coming. It has been said to me by the medics and by others that perhaps she should go into the hospice, but I have promised her that her wish to die at home with me at her side and our cat on the bed will be honoured (the cat is easiest to arrange, he's been a fixture on her bed since she came home, bless him).
HI BobbyChocolate
I can empathise with where you are at with this journey although we didn't reach that stage at home. G had a few falls in his last few weeks at home but was able to get himself up each time.
Things were taken out of our hands largely towards the end. G had said he wanted to die in the local hospice rather than at home so when he suffered a stroke/seizure that left him pretty much unconscious he was transferred there about 36 hrs later.
At first, despite being barely there, he was unhappy with the diaper option but he surrendered to it within a day or two. (I suspect the level of medication helped with that acceptance.)
Take this stage of the journey one day at a time and please don't discount the medical team's guidance. Sometimes this final phase does need some degree of compromise.
sending you a huge virtual hug and lots of strength
Wee Me xx
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