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A rough start

Milvus

Registered User
Sep 5, 2019
22
Mum was finally diagnosed with Alzheimer's yesterday. We've been coping with her increasing problems for about four years so this only confirmed what's been obvious to everyone for ages, that she has dementia. I feel I've had to chase people every step of the way to get to this point.

Anyway, she has had a good care package in place for the past couple of years and although she is totally dependent on others for everything (she doesn't even understand that she has to put medication in her mouth and has to have her hand guided to her mouth) she is living in her own flat and in good physical health.

I was thanking the care team yesterday for all their wonderful help and commenting on how Mum hasn't been in hospital for well over a year, ever since the care package was increased and her needs were finally being met. Well, famous last words! This morning the carer found her on the floor where she may have spent hours during the night. She simply doesn't have the mental capacity to press the alarm fob around her neck when she needs help. She was absolutely exhausted and out of it this morning and the doctor has sent her to hospital for tests in case her kidneys have been affected (I haven't yet got round to finding out just why this might be the case).

Talk about bad timing! Mum's medical records haven't yet been updated with yesterday's diagnosis so there's nothing to suggest she has dementia or to explain any confusion. If the hospital waits for her confusion to go away she'll be there for ever! I've spent the day trying to get the message through to those who need to know.

I have a horrible feeling that this whole incident is going to set her back enormously. She will be so bewildered in hospital and of course we're not allowed to visit. Any tips on how to help her pull back from this would be appreciated.

Mum is also going to be prescribed Donepezil to see if it benefits her. I'd be interested to hear how much this has helped others. I wish she'd had a chance to try it a few years ago. Her condition has really gone downhill so much that I wonder how much good it will do now.

Anyway, that's been Day 1 of her officially confirmed Alzheimer's status. My brother and I waved her off in an ambulance this evening. The future is so unknown. Thanks for listening to this long ramble.
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,243
69
Dundee
I’m so sorry to read about your mum. It must be so difficult under the current circumstances and not being able to visit.

My husband was on Donepezil for a number of years but he was prescribed this in the early stages of his dementia. I have no absolute proof of course but I feel it slowed the progress of his dementia. I’m not sure that he would have been prescribed it if his dementia had been has advanced as your mum’s sounds.

I hope your mum’s stay in hospital is a short one.
 

jaymor

Volunteer Moderator
Jul 14, 2006
13,315
England
I’m sorry to hear your Mum has needed hospitalisation and you not being able to see her.

In 2005 when my husband was diagnosed with Alzheimer’s he was prescribed Aricept, Donepezil being a version of the same drug. He suffered no side effects and took it for many years. I believe it gave him at least four good years where he could function well enough to continue to run his business albeit with some help. He continued to take it up until he went into a nursing home in 2012.

Like Izzy’s husband this was given in the early stages of the disease, though I feel the beginning of Alzheimer’s was there a good two years before. Just forgetfulness put down to stress of work.

I hope it can help your Mum.
 

canary

Registered User
Feb 25, 2014
13,907
South coast
Im sorry to hear about your mum and hope the hospital can get to the bottom of why she collapsed

My mum was given donepezil and a combination of that and a good care home gave her two good years. She was, however, in the moderate stage and could still do quite a lot of things for herself.
 

Palerider

Registered User
Aug 9, 2015
2,127
North West
That is a rough start. My mum was the same though as her dementia advanced -she had an alarm pendent but was unable to press it in the end as she didn't understand its purpose and often left it in her bedroom hidden in her draws. Mum was also on donepezil which she intially refused to take (she wasn't one for tablets) but after some persuasion she took it and seemed to be more functional for some time, but like @Izzy says my mum wasn't advanced as your mum sounds at that stage of the journey. Falls are a worry in an older person -mum fell while I was at work one night and had been on the floor for sometime before she some how managed to correct herself -it frightened her as she was not advanced at that stage. If you get time can I suggest you google rhabdomyolysis -which can affect the kidneys after a fall and period of down time.
 

Milvus

Registered User
Sep 5, 2019
22
Im sorry to hear about your mum and hope the hospital can get to the bottom of why she collapsed

My mum was given donepezil and a combination of that and a good care home gave her two good years. She was, however, in the moderate stage and could still do quite a lot of things for herself.
She either slipped out of bed or got out deliberately. It's only happened once before. She can't go far as she's attached to a urinary catheter night bag by a long tube. She has bad arthritis in her knees so can't stand for more than a minute so perhaps her knees gave way. It's odd because she had been saying to the diagnosing consultant that afternoon that she knew of people with dementia who wandered off in the night and the consultant asked her if she was worried that it would happen to her too. Maybe the idea suggested itself to her, or perhaps she wasn't sleeping well because she was thinking about the diagnosis. Who knows.

You mention 'the moderate stage'. I asked the consultant which stage Mum was at and she said that they don't describe it in terms of stages as everyone is an individual. They just look at the person's particular needs. So I'm none the wiser.
 

Milvus

Registered User
Sep 5, 2019
22
That is a rough start. My mum was the same though as her dementia advanced -she had an alarm pendent but was unable to press it in the end as she didn't understand its purpose and often left it in her bedroom hidden in her draws. Mum was also on donepezil which she intially refused to take (she wasn't one for tablets) but after some persuasion she took it and seemed to be more functional for some time, but like @Izzy says my mum wasn't advanced as your mum sounds at that stage of the journey. Falls are a worry in an older person -mum fell while I was at work one night and had been on the floor for sometime before she some how managed to correct herself -it frightened her as she was not advanced at that stage. If you get time can I suggest you google rhabdomyolysis -which can affect the kidneys after a fall and period of down time.
Thank you for the information. I'll look up rhabdomyolysis. Just didn't have time to look into it yesterday as things were a bit hectic. There was nothing in Mum's urinary catheter bag when the carer came to empty it at lunchtime but then she had been asleep in her chair all morning and hadn't been drinking fluids. The whole situation was a bit worrying as she had been on the floor during the night, the carer went away after her morning duties and Mum was left alone until the doctor arrived late morning (I got there at lunchtime as I have a bit of a journey) and then the ambulance didn't arrive until the evening. She would have been left alone for hours if my brother and I hadn't rushed through.
 

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