Advice from people in similar situations?

sarahe91

New member
Feb 28, 2024
3
0
Hi All.

I’ve just joined today as seeking advice and information if possible from people who have been in a similar situation.
My 90 year old Grandad has had dementia a few years now (not sure how long exactly, my granny is very guarded lady and never told us when he was diagnosed).
Start of November he was admitted to hospital with a UTI which affected his kidneys.
When visiting him I noticed first hand behavioural changes and aggression / confusion. Granny had never indicated this at home and some of it could have been a symptom of UTI as well as his dementia.
The UTi came back and granny (who is frail and late 80s) opted to move him to a nursing home as she was unable to provide adequate aftercare (up to this they had a carer twice a day).
Since Christmas he has rapidly deteriorated. My mum questioned how sleepy he was to be told oh he’s fine.
This week she pressed on whether he’s being over sedated due to aggression during personal care and they said they barely do that and his condition has gone downhill.
He’s now bed bound and has lost a lot of weight and is constantly asleep.
He eats and drinks but only when prompted.
I am 99.9% sure he is late stage dementia now and potentially end of life and am going to speak to a nurse today to get a better understanding.
I just wondered if someone could help me understand what to expect next?
I lost my first grandparent last year and at this time last year I was seeing this and feel like history is repeating itself (granted, they didn’t have dementia but my mental health has been hit hard).

Thanks so much, I know it’s different for every individual but my mind is all over the place.
 
Last edited:

Dirge

Registered User
Dec 20, 2022
45
0
Given the information that you have, I would absolutely agree with your own assessment, however there is no timeline from this point on. Your words could be written about my own mother who was designated end of life in October 2022 but continues to fight on. I would ask to see the GP for the nursing home and put those very words to them, they seem to find it easier to address a situation if you put it to them first and show that you understand what is happening.
 

Kevinl

Registered User
Aug 24, 2013
7,452
0
Salford
Hello and welcome to the dite.
Unfortunately a UTI make people dementia act very strangely and out of character, other infections can do the same but for whatever reason a UTI seems to the most common one talked about on this site.
I don't know why but it seem to be quite common in people with dementia, poor personal hygiene maybe, possible a poorer immune system no one seems to know why and why a UTI seems to hit them so hard.
K
 

sarahe91

New member
Feb 28, 2024
3
0
Hello and welcome to the dite.
Unfortunately a UTI make people dementia act very strangely and out of character, other infections can do the same but for whatever reason a UTI seems to the most common one talked about on this site.
I don't know why but it seem to be quite common in people with dementia, poor personal hygiene maybe, possible a poorer immune system no one seems to know why and why a UTI seems to hit them so hard.
K
Yeah he had multiple ones back to back since November and pulled his catheter out twice.
I believe he has been without catheter for roughly a month now due to the care home being concerned it was causing the UTIs to continue.
They said themselves they haven’t been able to get him back to how he was since the last one which before he was up, dressed and awake more.
 

sarahe91

New member
Feb 28, 2024
3
0
Given the information that you have, I would absolutely agree with your own assessment, however there is no timeline from this point on. Your words could be written about my own mother who was designated end of life in October 2022 but continues to fight on. I would ask to see the GP for the nursing home and put those very words to them, they seem to find it easier to address a situation if you put it to them first and show that you understand what is happening.
Thank you for your reply.
I didn’t want to be jumping to conclusions but was expecting it to be what I thought.
Your mum sounds like a fighter! I hope you are doing okay.
My mum has POA for him so I will suggest she gets in touch with the doctor after we speak to care home today. Thank you for your advice.