Hello everyone. This is my first post although i have been a member for a couple of years and have found it so helpful to read your posts as my mum has steadily deteriorated. I'm hoping someone might be able to help now, probably only to confirm my instincts are right, but any advice is gratefully received.
She's 83, was diagnosed with vascular dementia about 4 years ago, but looking back we suspect it began 3 or 4 years before that.
Her illness began with speech problems; she started to lose words when speaking and her written sentences got more and more garbled. She lost verbal communication completely about a year ago. Now even non-verbal signs are diminished and it's difficult to know what's going on inside.
She's been living in an excellent care home for the past year or so. She's settled, calm, seems to enjoy sitting and watching life go on around her. I had expected her to go on this way for years; her parents lived into their late 90s and mum is physically fit and well. However, she's had increasing difficulty with eating, and is now dependent on family or staff to hand feed her. The last few weeks she has been refusing to take food on and off, and of course has steadily lost a lot of weight.
The staff at the home are of course concerned and I think some of the carers are finding it quite distressing to see her starve, as they put it.
She's been seen by her SALT (who's known her for years, which is good), and she's on a smooth puree diet/thickened fluids etc. GP is good and keeps us informed.
Sometimes she will take a whole bowl of soup/a yogurt etc, sometimes she won't even open her mouth. Sometimes she gets halfway through and then holds the food in her mouth and won't swallow it. The she won't open her mouth again, so we reach a stalemate.
The home are talking about PEG feeding. I really don't think this is appropriate for mum, and my two brothers agree. If we do go down that route she'll have to move to nursing care ( a different home) which is a disruption that I don't think she needs right now.
If she was more frail or less mobile (she walks with help) I'd accept that this is probably the end and refusal to eat is part of that process. As it is I'm going round in circles in a dilemma.
I should add I worked as a registered nurse for a long time, caring for elderly people with dementia in hospital and in the community, but its so very different on the other side of the fence!
Hope this isn't too rambling…..
thanks for reading, Lisa
She's 83, was diagnosed with vascular dementia about 4 years ago, but looking back we suspect it began 3 or 4 years before that.
Her illness began with speech problems; she started to lose words when speaking and her written sentences got more and more garbled. She lost verbal communication completely about a year ago. Now even non-verbal signs are diminished and it's difficult to know what's going on inside.
She's been living in an excellent care home for the past year or so. She's settled, calm, seems to enjoy sitting and watching life go on around her. I had expected her to go on this way for years; her parents lived into their late 90s and mum is physically fit and well. However, she's had increasing difficulty with eating, and is now dependent on family or staff to hand feed her. The last few weeks she has been refusing to take food on and off, and of course has steadily lost a lot of weight.
The staff at the home are of course concerned and I think some of the carers are finding it quite distressing to see her starve, as they put it.
She's been seen by her SALT (who's known her for years, which is good), and she's on a smooth puree diet/thickened fluids etc. GP is good and keeps us informed.
Sometimes she will take a whole bowl of soup/a yogurt etc, sometimes she won't even open her mouth. Sometimes she gets halfway through and then holds the food in her mouth and won't swallow it. The she won't open her mouth again, so we reach a stalemate.
The home are talking about PEG feeding. I really don't think this is appropriate for mum, and my two brothers agree. If we do go down that route she'll have to move to nursing care ( a different home) which is a disruption that I don't think she needs right now.
If she was more frail or less mobile (she walks with help) I'd accept that this is probably the end and refusal to eat is part of that process. As it is I'm going round in circles in a dilemma.
I should add I worked as a registered nurse for a long time, caring for elderly people with dementia in hospital and in the community, but its so very different on the other side of the fence!
Hope this isn't too rambling…..
thanks for reading, Lisa