it's the beginning of the end.....worried!

[tomp9]

So my dear nan has undiagnosed dementia. We are working on the diagnosis and is due an assessment at some point. She is 88. Nan has probably had dementia for a couple of years which has slowly been getting worse, REALLY fast in the last week.

Nan has really gone downhill in the last two months, and especially in the last week and it's all happening so quickly.

So I think it is the beginning of the end

She's had a few unstable angina episodes this week which she hasn't has before. The doctors suspect it is Angina but cannot confirm without invasive tests, which due to her age and frailty are reluctant to do.

At the same time, it was also found that a UTI was present. Antibiotic wise, a weeks worth was prescribed, and we are on day 3.

Over the past week she has been getting worse.

Her appetite seems to have changed, she hasn't lost it completely, but is eating and drinking less, and what she does eat is not the whole meal or even half. For example, for breakfast this morning she only has a few spoonfuls of porridge, and for lunch, 1 and 3/4 of avocado sandwich, and dinner a few mouthfuls of a ready meal.

Nan's mobility is getting worse, she literally couldn't move/walk earlier today, but could when I saw Nan yesterday. Small steps and shuffling.

She has been very confused. Not knowing what day of the week it is, (although she does get it right sometimes) or thinking that where she has lived for 40 years is not her home.
She got out of bed last night and managed to take her entire duvet into the lounge and sit on the sofa. Mum found her asleep in the lounge in the morning! Nan has never done this before.

Whereas in the last several weeks the confusion would last less than a day, to then 1 day per week, to now almost daily. I don't put this down to the recently discovered UTI.

For the first time we saw the dementia mood changes today where she was snappy at my mum who cares for her, and was bringing up things about how my mum doesn't care about my nan in the same way my nan cared about her mum. She was then snappy at my mum for a while, before I made a call to my nan to see how she was and I think she was better after!

Mum did say nan was like her normal self for a while this afternoon, before she had a nod and woke up confused and annoyed. For some reason I think the confusion is worse after a sleep.

Nan is also incontinent now in the day and night (urine)

Also in the last couple of months; Has made calls to either me or my mum to ask where we were (at work) ... had clearly forgotten the time and the day.

Has been worried about my mum If mum doesn't return from work bang on time.

I think it's the beginning of the end.

I don't think all this is as a result of the UTI and the recent days spent in A and E / dellerium. I think the dementia has suddenly got an awful lot worse.

 

[Grannie G]

Welcome @tomp9 I hope posting here will help you off load your feelings and you'll feel supported.

It sounds as if your nan will have lots of ups and downs but you won`t know how near end of life she is until she has finished her course of antibiotics.

She could surprise you all and rally.

 

[TNJJ]

Hi. Your nan sounds very similar to my dad. He is eating and drinking less. Plus he is immobile. It is very difficult to predict if this is the beginning of the end. Dementia changes so suddenly.

 

[tomp9]

Thank you both.
We are all hoping that this severe confusion and the sudden worsening is just the UTI, but don't think it is...after all we're on day 3 of the anti biotics and the dementia symptoms are worsening

 

[canary]

Hi @tomp9 . UTIs do horrible, horrible things to people with dementia making the dementia symptoms much much worse. When OH gets a UTI his mobility takes a huge hit and his confusion is much worse. Incontinence is a common symptom of a UTI, though fortunately OH doesnt get that as he has a catheter. If your mum is still bad at the end of the antibiotic course it would be worth checking that the UTI has actually gone. Sometimes the antibiotic doesnt work and they have to have another course of a different one.
Infections can also cause delirium, which can take up to six months to resolve.

I think that at this stage its going to be impossible to predict what will happen. 2 years ago OH had 6 back to back UTIs (with a couple of bouts of sepsis thrown in for good measure) and I honestly thought we were looking at the end, but he recovered and is still at home with me.

 

[tomp9]

Thank you all for your helpful comments

Nan is still confused as to where she is, but I have spoken to her this morning and sounds much more like her normal self.
Mum also has said nan has eaten what she was given for breakfast (less than normal but food has been left the last few days) and has also drank far more than the last few days, including nearly a whole glass of water...which is great news.
Nan is also less sleepy than yesterday ans hasn't had a nod yet, which had happened by this time yesterday. Her mobility is also back and has done her usual walking to the loo and kitchen.

However, nan was alright yesterday, just not as perky,then deteriorated as the day went on.

I guess only time will tell but I am praying for more good news later.

 

[Jessbow]

Sounds typical of the effects of an infection to me, UTI in particular can cause all sorts of strange issues, but they do tend to improve

 

[SidDavid]

So my dear nan has undiagnosed dementia. We are working on the diagnosis and is due an assessment at some point. She is 88. Nan has probably had dementia for a couple of years which has slowly been getting worse, REALLY fast in the last week.

Nan has really gone downhill in the last two months, and especially in the last week and it's all happening so quickly.

So I think it is the beginning of the end

She's had a few unstable angina episodes this week which she hasn't has before. The doctors suspect it is Angina but cannot confirm without invasive tests, which due to her age and frailty are reluctant to do.

At the same time, it was also found that a UTI was present. Antibiotic wise, a weeks worth was prescribed, and we are on day 3.

Over the past week she has been getting worse.

Her appetite seems to have changed, she hasn't lost it completely, but is eating and drinking less, and what she does eat is not the whole meal or even half. For example, for breakfast this morning she only has a few spoonfuls of porridge, and for lunch, 1 and 3/4 of avocado sandwich, and dinner a few mouthfuls of a ready meal.

Nan's mobility is getting worse, she literally couldn't move/walk earlier today, but could when I saw Nan yesterday. Small steps and shuffling.

She has been very confused. Not knowing what day of the week it is, (although she does get it right sometimes) or thinking that where she has lived for 40 years is not her home.
She got out of bed last night and managed to take her entire duvet into the lounge and sit on the sofa. Mum found her asleep in the lounge in the morning! Nan has never done this before.

Whereas in the last several weeks the confusion would last less than a day, to then 1 day per week, to now almost daily. I don't put this down to the recently discovered UTI.

For the first time we saw the dementia mood changes today where she was snappy at my mum who cares for her, and was bringing up things about how my mum doesn't care about my nan in the same way my nan cared about her mum. She was then snappy at my mum for a while, before I made a call to my nan to see how she was and I think she was better after!

Mum did say nan was like her normal self for a while this afternoon, before she had a nod and woke up confused and annoyed. For some reason I think the confusion is worse after a sleep.

Nan is also incontinent now in the day and night (urine)

Also in the last couple of months; Has made calls to either me or my mum to ask where we were (at work) ... had clearly forgotten the time and the day.

Has been worried about my mum If mum doesn't return from work bang on time.

I think it's the beginning of the end.

I don't think all this is as a result of the UTI and the recent days spent in A and E / dellerium. I think the dementia has suddenly got an awful lot worse.

I feel for you and so sorry. We experienced this with partner's mother ( 89 ) and the delirium caused by a UTI was competing with the dementia. It took a hospital stay with intravenous antibiotics to clear up UTI and delirium. Once it cleared up we were a lot clearer about the impact of the dementia .

 

[tomp9]

I wonder how long the anti biotics take to work and how long the confusion takes to clear up after a UTI?

Nan is still very confused, still doesn't know what day it is etc, even tried to have a shower by herself this afternoon which she never has on a Sunday afternoon, but has eaten and drunk much much more than the last few days, and is more talkative today.

On the right path I am praying, and also for more improvement tomorrow

 

[tomp9]

I feel for you and so sorry. We experienced this with partner's mother ( 89 ) and the delirium caused by a UTI was competing with the dementia. It took a hospital stay with intravenous antibiotics to clear up UTI and delirium. Once it cleared up we were a lot clearer about the impact of the dementia .

Did your partners mum return to her 'normal' self or did the UTI permanently progress the dementia?

 

[tomp9]

update on nan this morning
No change this morning, still doesn't know which era we are in.

 

[tomp9]

Another update. Nan is still very confused. Again asking where her Mum was. Remembered where she was when told, and then remembered other family members were in the same place.

I asked Nan where Mum was and Nan told me she had gone down the road to get a paper. Turns out this was made up and Mum was making Nan lunch!

Did manage to answer her mobile by herself today, couldn't yesterday.

Was very breathless when waking up/getting up this morning and couldn't move head much (could be because she had a good night of sleep!)

The UTI anti-biotics end on Thursday morning. Nan wan't like this before the UTI. How long does it take for the confusion to go?

 

[canary]

Was very breathless when waking up/getting up this morning and couldn't move head much

Has she had a covid check?
It might be worthwhile doing one - covid makes people with dementia much more confused.

 

[tomp9]

Has she had a covid check?
It might be worthwhile doing one - covid makes people with dementia much more confused.

Yes, there is no covid.
Not sure where the breathlessness has come from, usually get this when walking (and has done for several years)
Mum has put it down to laying down all night which Nan never usually does as a few trips to the toilet are usually required. And the lack of head movement, the same. E.g if I sleep funny I can't move my head much either!
Head movement and breathlessness is OK now though!

 

[canary]

Good that there is no covid.

I think you will just have to reassess the situation at the end of the antibiotics.
Do you think she has delirium? This can take quite a bit longer to resolve
Sometimes following an infection, they never get back to where they were before.

 

[tomp9]

Good that there is no covid.

I think you will just have to reassess the situation at the end of the antibiotics.
Do you think she has delirium? This can take quite a bit longer to resolve
Sometimes following an infection, they never get back to where they were before.

I am not sure if there is delirium any more. I'm not sure how to tell the difference between it or the worsening of the dementia because of it.

On day 2 of 7 of the anti biotics, this was when nan was at her worst, couldn't move, was snappy with my Mum, and saying that Mum doesn't treat Nan the way Nan would treat her Mum! There was little fluid intake nor food. Phone rings, nan didn't know it was the phone.. doesn't know location or day of the week. Was putting spoon into cup of tea, rather than into pudding bowl. This didn't happen before the infection.

Today much the same as yesterday, (which was a huge improvement on Saturday) apart from bringing up her mum and making a few things up and forgetting where Mum had gone just one minute previous.

What's happened is almost certainly down to the UTI...which, as nan looks healthier now and is eating and drinking (albeit less than before, but is not a big eater now) has been cleared up by the antibiotics. There are 4 tablets left to take.

So I'm just praying that after the antibiotics have finished there is an improvement on the confusion and Nan goes back to her previous baseline of one week ago. But as you say, sometimes there is not an improvement.

 

[tomp9]

Today's update then. Confusion still remains. Still convinced that she does not live at home and that her home is in a place lived over 40 years ago. Told me on the phone that she does not feel settled in her actual home. Apparently yesterday, Mum left her for 30 minutes, and came home to find her starting to pack up her clothes to go home!

Anyway....Mum says Nan is much more alert today, had the Dr out for a separate issue, did a Urine test, urine was extremely strong and UTI is still present. The current lot of antibiotics have clearly had some effect, the Dr did say to wait a couple of days after the final anti biotic is taken (tomorrow morning) to see the results. I am a bit concerned by this as I don't think it'll clear the inflection with only two tablets remaining and I don't want it to grow or get worse!
Nan does seem to have frequent UTIs, two last year.

What happens if this UTI does not clear up by tomorrow? Some different anti-biotics? What if that doesn't clear it up? I'm worried the bacteria is now anti-biotic resistant!

So there's still a chance the worsening in the confusion over the last week is down to the UTI and that Nan will return to her previous baseline if and when it clears up. #Pray

 

[canary]

What happens if this UTI does not clear up by tomorrow? Some different anti-biotics? What if that doesn't clear it up? I'm worried the bacteria is now anti-biotic resistant!

This does happen quite often. The doctor may just decide to prescribe different antibiotics, or s/he may decide to send it to the path labs to check what anti-biotic will work.
There are quite a few antibiotics to choose from.

 

[Canadian Joanne]

It is very likely the UTI is causing additional confusion and clearing it up will help your grandmother return to a more even keel.

 

[Weasell]

Sometimes the GP’s can be two trick ponies, prescribing Nitrofurantoin and Trimethoprim.
It may be worth discussing the use of a second line antibiotic, example, Pivmecillinam.
Second line antibiotics cost more money.
Obviously it would depend on the lab result and other health conditions.