Rapid decline

[AliCat123]

I’m feeling at a loss as to what to expect for my mum. She was only diagnosed with Alzheimer’s /Vascular dementia in February this year she’s just 73yrs old. In the summer she was reasonably independent, living alone, walking to the shops, seeing friends and looking after/walking her dog every day. I would do her shopping and drop in food supplies and help with taking her places but I had no major concerns about her.

At the end of September she had a crisis of some kind and started night wandering and a week later I found her confused, hallucinating and completely unable to look after herself. She was admitted to hospital and is still there. Her decline is rapid - we think she’s had at least one delirium while in hospital. She now shuffles around, is hunched over, barely opens her eyes, is lucid only for a few minutes each day, often doesn’t know that I am there and cannot hold a conversation, when she does speak her voice has changed (more childlike). She is having problems toileting and takes no interest in being clean or dressing.

When she was diagnosed by the psychiatrist we were handed the usual dementia information and given our previous knowledge of dementia (my step-grandmother has had it stably for several years, my friend’s father likewise), I feel completely unprepared for this sudden decline and change in her life. Each week the decline is noticeable and I am wondering what to expect and how long she may have left. I know that everyone is different and we may find her plateauing for a while and becoming more stable again but we have had no information about this speed of decline.

If anyone has any knowledge or experience of what we should be prepared for and what we can do for her I would really value your advice.

 

[MrCanuck]

With ALZ you generally have a slow decline, while with Vascular Dementia it often happens in steps. When you have both, as my mother did, you get both a gradual decline with what seems like random sudden drops thrown in for good measure. In my mother's case she went from independent to requiring 24h care in about 6 weeks. There was a delirium during that period as well. Then there was a period of almost a year and a half or so where the decline was much more gradual, she settled in (mostly) after a few months and we were able to salvage some quality of life for her.

I recall New Years day, 2018, I was visiting and she was in good spirits and physically well, though I could tell she had declined over the last 6 months and I admit I was wondering how things would be over the next 6 months. However, she picked up a virus 2 weeks later, then a chest infection, antibiotics did nothing. She was gone 4 weeks later.

There just isn't much you can do to plan for these things because you just never know. I'm the type of person that likes/needs to have things planned out to the nth degree but trying to keep things controlled started to make me sick. All I could really do was "go with it" and deal with what was thrown at me. During that "good" period I eventually found that bringing in videos of dogs really made her happy so I just kept doing that. I found something that worked and just went with it for as long as it worked.

It is difficult but basically you have to expect the unexpected. Everybody progresses differently so don't get too worked up by what "could" happen. I kept my sanity by reminding myself that I was keeping my mom safe and cared for which was what matters. As for her being "happy", well, I did what I could with what the disease would allow. Looking back now I know I did the best for her that I could and that is what she would have wanted me to do. That leaves me at peace with it, which, at the time I was going through it all I wouldn't have expected.

 

[Kennyboy]

I’m feeling at a loss as to what to expect for my mum. She was only diagnosed with Alzheimer’s /Vascular dementia in February this year she’s just 73yrs old. In the summer she was reasonably independent, living alone, walking to the shops, seeing friends and looking after/walking her dog every day. I would do her shopping and drop in food supplies and help with taking her places but I had no major concerns about her.

At the end of September she had a crisis of some kind and started night wandering and a week later I found her confused, hallucinating and completely unable to look after herself. She was admitted to hospital and is still there. Her decline is rapid - we think she’s had at least one delirium while in hospital. She now shuffles around, is hunched over, barely opens her eyes, is lucid only for a few minutes each day, often doesn’t know that I am there and cannot hold a conversation, when she does speak her voice has changed (more childlike). She is having problems toileting and takes no interest in being clean or dressing.

When she was diagnosed by the psychiatrist we were handed the usual dementia information and given our previous knowledge of dementia (my step-grandmother has had it stably for several years, my friend’s father likewise), I feel completely unprepared for this sudden decline and change in her life. Each week the decline is noticeable and I am wondering what to expect and how long she may have left. I know that everyone is different and we may find her plateauing for a while and becoming more stable again but we have had no information about this speed of decline.

If anyone has any knowledge or experience of what we should be prepared for and what we can do for her I would really value your advice.

Hi I was wondering if perhaps your mum had a little stroke and it has not been picked up, with people with dementia it can be missed especially if it caused no paralysis. My sons Nan has deteriorated in the last few months that we have been caring for her, she will not shower I have to keep telling her to change her clothes, or I sneak them out of her room to wash them dry them and put them back, she is definitely sundowning, and has halicinated on s few occasions, she has regular accidents bladder and bowel and will just leave her dirty underwear on the floor in the bedroom. She lost her husband a few months ago and I think this has caused a sudden deterioration in her condition, I realise that she will only get worse. I think that all dementia patients are different and some will have a long journey and others a short one. Must be so distressing for you to see your mum like this my heart goes out to you take care

 

[AliCat123]

@MrCanuck - Thank you for such a personal and honest response - that's really helpful and your mother's illness sounds much likes my mum's. It's given me hope for a period of settled and stable life for her and us.

 

[AliCat123]

Hi I was wondering if perhaps your mum had a little stroke and it has not been picked up....

Thank you @Kennyboy She had two TIAs a while ago (two years ago) and the hospital have done further CTs to check but no sign of TIA or other brain issue at this point. They thinks it's a rapid decline which I can find very little information about.