Mum is now in the End Stage of Alzheimer’s Disease. 
Mum has now been moved out of the ward that she shared with 3 other patients, and has a side room to herself. There is no bed in her room, but a series of mattresses on the floor that must be made up like a bed a night. She cannot use a bed now as one night recently she managed to stand up on her bed and fell off it. The mattresses also soften her fall if she manages to get out of her chair and starts wandering during the day.
Mum is now 46 kg, which is about 7 stone. I can’t believe she is actually that heavy for she is now skin and bones. Having said that, she was weighed over a week ago so she is undoubtedly less than that now. Monday was the first day where feeding became a major issue. Yesterday I watched as my step-dad tried to feed her the lunch of mashed chick-peas with gravy and rice pudding with custard. He had no luck at all and his frustration was evident. It was painful watching. She had no breakfast either. It appears that she may be unable to eat now, as those muscles are beginning to shut down.
We are now facing the difficult decision of whether to instruct the doctors to feed her intravenously (or via her nose) or to stop feeding her altogether. What kind of decision is this? We either perpetuate her suffering by keeping her alive, by forcing fluids into her, or we make her suffer by not feeding her and let her body start to shut itself down. Having to live with either decision is beginning to haunt me. It’s the first thing I thought of when I woke up this morning and it was the last thing I thought of before I went to sleep last night.
I came across your blog via The Veg Box Diaries. I have been both interested and moved by your account of your Mum’s decline. We have a friend who has early onset alzheimers, it is a cruel disease.
I had the same decision to make for my maternal grandmother. She had a massive stroke the day before my Mum’s funeral (it never rains….). After a couple of months visiting this shell of a person at weekends the doctors phoned me regarding the feeding decision. I decided that the suffering should not by prolonged and therefore instructed the staff to stop feeding her using a tube down her throat. This was not a decision I took lightly, but I’m sure my gran would have made the same decision for herself. When we visited at the weekend we found that she was being fed
ntravenously, straight into her stomach (one of the junior doctor’s pet project for a paper they were working on). Understandably I was upset by this, why make the decision and then be ignored, I could have taken it further but it would not have acheived anything. The opening for the feeding tube then became infected – it just seemed so pointless putting her through even more trauma. Eventually my gran died of pneumonia. Mostly I felt relief. I guess what I’m trying to say is to put yourself in their position, what would you prefer? The end will be the same, it’s just how you arrive there. Don’t feel guilty and rememeber to look after yourself. Everything I want to say just sounds like a cheesy hollow cliche.
Best wishes
I feel I have to comment, but I don’t know what to say. As Shelley says, I feel whatever I write will just sound like a cliche.
Your Mum’s illness seems to have been very swift in it’s decline, through reading your blog – it probably doesn’t feel like it to you, I’m sure.
Perhaps that is a very small mercy.
Keep the memory of the Mum you knew from the photograph in the post below. The radiant, happy Mum you know.
I have been so touched by your blog, and wish I could in some way help.
Take Care, Soph x
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I wish there was something we could say to comfort you. There’s no more advice anyone can give you, no more soothing words that will help, I’m sure, but I hope you know that we’re all thinking of you. If there were something any of us could do, we would.
In the meantime, big virtual hugs, and a shoulder to lean on if you need it.
Cara,
Just finished reading your blog – and seeing the photo of your mum. As you know, if you need any help, just give me a ring. I can get hold of a gerontologist for you – or a solicitor, who may be able to see what can be done about moving her- finding somewhere more specialist. As for the whole continuing care thing, yes, the forms may have changed (they had to this summer as all NHS Trusts were basically operating unlawfully) but the information gathered has not . Difficult as it is, you need to demand that this is done asap – there is no excuse for it to take six weeks to complete in any event (each Trust usually has a Panel which can make decisions within a week/fortnight). Thinking about you all the time and sending you all my love