Mum has Lewy Body dementia, is 73 and was diagnosed 2013. She lives in Ireland with my stepfather who refuses to let her leave to live in England with her 4 children or go into care. She has 1 hr a day help along with 3 days in a day centre. He is struggling but barely feeds her or gives her drink to try and control the incontinence. I was there battling with him this week. He resents me trying to help him and mum (he’s an alcoholic). I think she should be somewhere for her care. She shuffles with support but now can hardly turn, she can’t use the toilet frame herself, she doesn’t know how to use pads or clean herself anymore, she doesn’t know any of us most of the time, she has paranoia etc, she refuses food if asked but eats if it’s there, she holds liquid in her mouth for ages and dribbles and usually chokes, she sits all day staring with her head well back and her mouth gaping open, she falls and so far has avoided serious injury. I’d say she’s in year 7 from when we first noticed of being notably ill. What will happen this year? At my wits end.

I am really sorry about your Mum. It sounds like you have had a really frustrating time trying to get her the help she needs while also advocating for her right to be cared for the way she deserves. What a really tough spot you are in.

You have asked the million dollar question. Caregiving for a loved one with dementia is very difficult and unfortunately, there really isn’t a timetable. Each patient responds differently to outside stimulations, to medications and therapies, to every aspect of care and living. It seems part of the frustrations as a caregiver is never knowing exactly what to expect around the corner.

It does sound as if your Mum is in the later stages, so she will become weaker and probably fall more. Each time she falls, there is a risk of injury and with that a decline in her health. If she becomes incontinent, there is also more care that is needed and also an increased possibility of infection. If at all possible, you may be able to talk your step dad into hospice care, which will help him with her needs and to access where she is with the disease and what might be in the near future for you all.

This is a most difficult time and I would like you to know that I feel for the pain and heartache you must be enduring every day. Please stay strong and remain her advocate as best you can.

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