Are these the characteristics of advanced dementia?

[Samantha895]

My 98 year old grandmother has been in a care home for 2 years following multiple falls/uti's and a diagnosis of unspecified dementia. Whilst care received is good, I am confused about how she actually is.

She is bed bound, incontinent, unable to dress herself, unable to recognise some close family members and at times presents as agitated/on the verge of aggressive. When the agitation occurs the carers administer diazepam to calm her down. Medicated or not, she wants to sleep most of the time and eats minimal amounts. She has to be spoon fed soft foods - which she eats tiny morsels of - but will eat sweet foods such as rice pudding. She has lost a significant amount of weight, to the point where she looks emaciated (weighing just over 6 stone) and as a result is given fortified cream shots. She can still speak - can be overly vocal at times, however, often is not intelligible.

Based on others' experience, I am wondering if it is possible my grandmother is experiencing the later stages of dementia? I appreciate everyone progresses differently, but having not experienced this cruel illness before, I am trying to gain a little clarity and understanding of where she is/what to expect.

Thank you!

 

[Shedrech]

hello @Samantha895
a warm welcome to TP
yes, from what you describe your grandmother is later stage
these pages from the main AS site may have useful info
https://www.alzheimers.org.uk/about...iagnosis/how-dementia-progresses/later-stages

 

[myss]

I also agree with Shedrech. If you took out the diazepam and the eating habits, you could have been describing some of the behaviours of my dad.

 

[karaokePete]

Hello @Samantha895, welcome to the forum from me too.

There are many sites with differing definitions of the stages of dementia as it's such a difficult thing to tie down.

One site that has always seemed popular with many members is the detailed one that can be found with the following link
https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

I wish your Grandmother and you well.

 

[Samantha895]

Thank you for the replies! It is reassuring to have my suspicions supported re later stages of dementia. The information contained within the links is most useful. It's terrible to see my grandmother as a shell of her former self.

 

[Kikki21]

It does sound like your grandmother is definitely at the later stages from what you describe. These can present differently from person to person. Have you had a conversation with a GP/care home staff? It is horrible to think about the next stages but sometimes better to do so when you can think about it instead of doing it in a hurry xx

 

[Samantha895]

Thank you for your reply. Unfortunately, while the care home tend to her needs, they aren't great at communication. Whenever we ask direct questions we are often told "she's fine" or "she's doing really well" and then they often say "this is just a bad day". It gets frustrating hearing it, as a picture paints a thousand words and she now looks so pitiful in her bed bound state. x

 

[Moose1966]

Thank you for your reply. Unfortunately, while the care home tend to her needs, they aren't great at communication. Whenever we ask direct questions we are often told "she's fine" or "she's doing really well" and then they often say "this is just a bad day". It gets frustrating hearing it, as a picture paints a thousand words and she now looks so pitiful in her bed bound state. x

I have had exactly the same with my mum , she’s bedridden , very little communication, eating tiny amounts and asleep most of the time . Two weeks ago the palliative care nurse met with me and the CH it was decided Mum needed to be moved to NH as soon as possible, this was very distressing for me as it panicked me into thinking mum was in her final days and I had to take my attention from her and try to find NH accommodation which is tough as most have a waiting list . I found one which is nearer to me so fast forward to this week and she moved Monday , doing ok all things considered . It maybe worth finding out if your able to start the process of moving her into a more suitable and calmer place . It’s tough but I’m happy that I had to do it otherwise I think I’d have just carried on non the wiser ❤️

 

[canary]

Two weeks ago the palliative care nurse met with me and the CH it was decided Mum needed to be moved to NH as soon as possible, this was very distressing for me as it panicked me into thinking mum was in her final days and I had to take my attention from her and try to find NH accommodation which is tough as most have a waiting list . I found one which is nearer to me so fast forward to this week and she moved Monday , doing ok all things considered . It maybe worth finding out if your able to start the process of moving her into a more suitable and calmer place . It’s tough but I’m happy that I had to do it otherwise I think I’d have just carried on non the wiser ❤️

It depends whether the care home is able to care for someone at end of life.
Mum was in a care home, not a nursing home, but they were able to care for their residents when they reached end of life because they had an arrangement with the GP, who would prescribe the End of Life medication and the local district nurses, who would administer them and organise a syringe driver when necessary. My mum passed away in her care home and they looked after her wonderfully.

@Samantha895 - find out whether the home your mum is in will be able to care for her once she reaches end of life, and if not, start looking for a suitable nursing home for her.

 

[Moose1966]

It depends whether the care home is able to care for someone at end of life.
Mum was in a care home, not a nursing home, but they were able to care for their residents when they reached end of life because they had an arrangement with the GP, who would prescribe the End of Life medication and the local district nurses, who would administer them and organise a syringe driver when necessary. My mum passed away in her care home and they looked after her wonderfully.

@Samantha895 - find out whether the home your mum is in will be able to care for her once she reaches end of life, and if not, start looking for a suitable nursing home for her.

Mums care home had GP support and had the EOL medication on site for her , they expressed concern that mum was time consuming ie turning her every 2 hours , feeding her as not able to feed herself etc . I was happy with her there and we had discussed mums wishes should she take a turn for the worse and it was all noted down , it was then a shock when 24 hours later they then sadly said we needed to move her I agree if CH can manage it’s best to leave your loved one where they feel comfortable.

 

[Samantha895]

Thank you for your replies. It's so useful reading experienced comments. The care home have said before that they will provide EOL care when needed. They have general arrangements in place (for all residents) with a local GP, district nurse and hospice. I suppose I am just anxious about the next stage. The care home constantly say she's fine and is doing well (despite my observations) which confuses me - the state she's in doesn't match my view of "fine". I therefore am concerned that the next stage will come out of the blue, given the care home's positive view. Just such an uncertain and emotional rollercoaster of a time!

 

[canary]

I think that when they say that she is "fine" they probably mean "fine for someone at this stage of dementia" ie, there are no infections, she is not in pain, she is still eating and drinking (albeit small amounts), etc.

This stage can go on for a surprisingly long time - months, sometimes years - and when the end comes it comes slowly. The body shuts down gradually over days (17 days in my mums case), so you are unlikely to be taken by surprise - unless there is something sudden and unforeseen, like a heart attack.

 

[Samantha895]

I hadn't thought it of it like that, I think you're absolutely right - she's fine for someone in her condition! I'm starting to understand that the later stage can go on for some time. She's been like this (with slow deterioration) for the past year. Thank you for providing some.clarity.