Unsure of Mum's stage of vascular dementia, doctors telling me nothing.

Woozysue

New member
Mar 27, 2022
3
0
Hi there,
My mother has vascular dementia.
She started with small signs in 2019, but then COVID lockdowns came so her actual diagnosis was very, very delayed.
As such, she has not received any treatment.

My mother developed Sepsis a year ago and has declined quite badly since having that, to the point that a carehome was needed, since our family were no longer in a position to fulfill her 24/7 needs.
It's been years since she was able to cook or look for herself, even unable to make a sandwich and get showered etc, she'd just eat a piece of dry bread and lost the ability to know what time of day it was, at least 2 years ago.

I'm very unsure however of the stage she is at and what to expect.
The doctor at the carehome has given me no information, in fact the carers give me none either, always just saying she's fine. They're a great home though and make Mum very happy!!

So this is where my mum is at;
She is unable to make any sense, you cannot have a tiny amount of conversation with her, as she has less than a 5 seconds memory span, so halfway through saying something, as an example, she'll see a bird and then something jumbled up ends the sentence about a bird. She mainly babbles nonsensical things, laughs and we nod along, encourage her and laugh with her.
Mum is also struggling quite a bit with reading. She's always been an avid reader, to the point of reading all signs and words everywhere, but she cannot pronounce even simple words quite often now, but she still notices all signs! It's like she's forgotten the basics of vowel sounds and combined letters etc.
My mum can still tell the time 50% of the time, but says something like 8 to 2, or 10 on 6, the rest of the time. It's weird how it fluctuates.
She's been urinary incontinent for around 3 years now and cannot go to the toilet without care staff helping any longer.
Mum can walk, but just slides her feet along, not lifting them and she holds onto a rail.
She's eating ok and has completely forgotten that she dislikes or never ate certain foods, which is great!
Mum swears like mad now, yet never swore in life, she still very much enjoys a laugh, even though nobody knows what she's laughing at most of the time.
Mum cannot understand anything except the very simplest of things being said to her, quite often you have to repeat what you said, even if it's simple, as she just doesn't understand or follow it. Her babbling responses never match the questions or conversations.
In the carehome, she generally believes she has no children. She recognises us when we visit, but mostly knows that she knows us somehow, but mostly not understanding exactly who we are, although on a rare occasion she does know us as her children. Mum still thinks her parents are alive and that she lives with them, not knowing she lives in a totally different county and has for 60 plus years. ( I became her Mum to her for a while, but that appears to have passed now.)
Most of the other residents sit quietly and watch TV etc, my mum however does not. She notices every movement of every person and has something to say. Mum has sadly upset quite a few of the residents calling them names, as she has no filter whatsoever and hasn't had for a while.
Even taking her out to, say a cafe, is a huge ordeal due to her walking, as she can't slide her feet as easily outdoors, she cannot manage stairs or steps either and is offensive to everyone. In addition we can't encourage her to eat, like the carehome staff can.
Mum is also repeatedly getting infections, urinary and chest infections and lives with an oxygen level at around 88-90, for the past year, which seems low to me!

Does this seem consistent with middle stage vascular dementia to other people, or are we heading towards the end stages?
I'm struggling to find info as to how far along the journey we roughly are and how long we roughly might have left.
I know there's no definitive answers, but a rough idea would help with the financial planning at least and maybe prepare me a bit for what is to come.
It's been 5 years now since I noticed signs, but my mum still seems so alert, despite her inability to speak and make sense mostly.


Thanks in advance for any advice, or suggestions. I'm very grateful for your time in reading xx
 

Sarasa

Volunteer Host
Apr 13, 2018
7,338
0
Nottinghamshire
A very warm welcome to Dementia Support Forum @Woozysue.
I'm afraid it is very much a how long is a piece of string question. Your mum may carry on as she is for a few more years or she might suddenly decline in a matter of weeks. I would say from your description that she is in the early late stages of dementia, but that doesn't mean that she is in the last few months or even years of her life.
My mother also had vascular dementia. There were signs of it from about 2012 and by the time of her 90th birthday in 2018 things were getting very tricky. She could more or less look after herself but she was convinced the neighbours were stealing from her and was starting to get very confused about things. She moved into care in 2019 and by 2021 could only walk in a shuffle and didn't really know who I was. Sepsis at New Year 2022/23 knocked out her ability to walk but she could still feed herself after a fashion and occasionally said vaguely appropriate things when you talked to her. She appeared pretty healthy apart form the advanced dementia and then in October last year she had a sharp downturn and was dead four days later. I was really shocked by that, as I thought she would rally.
I think just keep on visiting and doing things your mum would like. Mine was partially sighted so looking at pictures didn't work, but she enjoyed music and when still able to, dancing.
 

Jessbow

Registered User
Mar 1, 2013
5,788
0
Midlands
Every single peron is diffrent, and they all progress at different rates
My mum became double incontinent fairly early on....but talked reasonably sensibly almost until the end, knew who were were, although muddled names up sometimes
She never got agressive- oposite actually, but lost the ability to cook and look after herself
urine infections almost weekly....the nothing- no rhyme nor reason

Just go with the flow, happy & contented is good
 

Kevinl

Registered User
Aug 24, 2013
6,696
0
Salford
Couldn't have summed it up better than Sarasa has done, it's not always a linear progression.
For some a passive person can become aggressive, previously aggressive people can become quite placid.
Just take a day at a time early stages and never be too proud to ask for help or decline it when offered. K
 

Woozysue

New member
Mar 27, 2022
3
0
Thank you all for your responses, it's such an awful thing to watch a loved one go through and it's so difficult not knowing how long it will last, especially as she'd previously said when she saw my grandma go through it, she never wanted to live like this😥

I'm very grateful for you taking time to read and respond, it's great to have somewhere to turn to.

We felt completely abandoned and without help, or advice, for so long, struggling along 24/7 on our own.
Our mum was completely unable to do anything for herself, she would even try eat inappropriate things, wander around outside at night half dressed as she no longer knew what the clocks meant, even though she could still tell the time and she would give money to strangers.
So our own families suffered as a consequence for 3 years, as one of us needed to be there with her 24 hours every day and night, without taking holidays even, as the burden was too much for less people.

That's something that really needs to change! A diagnosis shouldn't be the end of it and likely others are unaware of their options, same as we were.

If mum hadn't had sepsis, we'd still be struggling now!!
The hospital got someone involved to help us out and give us some advice, as I'd mentioned how very much we were struggling, they couldn't believe she wasn't in a carehome, or receiving any help at that point with her needs, but we hadn't been told anything about social workers helping etc so didn't know!

We didn't even know we had the option of a carehome, we assumed that the doctors told us when it was time!
I'm very grateful that she's in a good carehome now and our families have us back! It's just the worry of how long her money will last, paying the fees now 🫤.
 

Sphynx

Registered User
Oct 19, 2020
40
0
Finances are really difficult. Once your mum’s savings go beneath £23,250 she will be eligible for some help with fees and that will increase as her savings drop.

My mum has been in her care home for about 4 years now. She has deteriorated in that time, but having visited for all those years (bar Covid restrictions) I have watched other residents come and go and you really can’t predict how each individual will be. Some seem very well when they enter care and deteriorate quickly, some, like my Mum plateau or decline gradually. Mum was continent when she went into care, but is now becoming incontinent. She hasn’t been able to speak anything intelligible for at least 3 years. She is still mobile. It is very hard not knowing what to expect. I am glad you are getting some relief from the caring 24/7 side of things, it’s so draining.
 

Karenlansbury

Registered User
Jul 18, 2023
16
0
Finances are really difficult. Once your mum’s savings go beneath £23,250 she will be eligible for some help with fees and that will increase as her savings drop.

My mum has been in her care home for about 4 years now. She has deteriorated in that time, but having visited for all those years (bar Covid restrictions) I have watched other residents come and go and you really can’t predict how each individual will be. Some seem very well when they enter care and deteriorate quickly, some, like my Mum plateau or decline gradually. Mum was continent when she went into care, but is now becoming incontinent. She hasn’t been able to speak anything intelligible for at least 3 years. She is still mobile. It is very hard not knowing what to expect. I am glad you are getting some relief from the caring 24/7 side of things, it’s so draining.
I would say my mum is at a very similar stage she is 6.5 years post diagnosis mixed dementia and she lives with us… it’s very tough, she isn’t it’s just so very sad… like you we have asked similar questions and no answers as nobody really knows or actually wants to really consider but we are thinking my mum is halfway through stage 6 or coming towards the end of middle stage hope that helps x