Rapid decline

imthedaughter

Registered User
Apr 3, 2019
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I posted the other day as Dad was struggling in the heat, they thought with a UTI.

It's not apparently a UTI. He isn't really better. I'm sort of diagnosing a stroke of sorts from a distance here.

He is very unsteady on his feet, incontinent and hasn't been able to leave his room since Tuesday. Dr can't pinpoint the reason for it and suspects a sudden decline. I'm a day of driving away otherwise I'd have gone to see him already.

The care home have been brilliant but they aren't nursing and will struggle to deal with him if he doesn't improve.

Referral to OPMH has been made.

Does anyone have any experience of this? Is this decline trajectory likely to continue? I don't know what I should do next.
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
Hi @imthedaughter . Im very sorry to hear about your dad. If hes got vascular dementia, or a vascular component of mixed dementia, this could be one of those steps down, albeit a large one. In this case it may stay the same for a while - but there again, perhaps not. Thats the problem with dementia, you just never know, so play it by ear.

The first thing I would do is speak to the care home manager. Reduced mobility and incontinence does not require nurses - carers can deal with perfectly adequately, so it is not inevitable that he will require a move. Mum became incontinent and lost most of her mobility and stayed at the same care home (not nursing home) right up to the end. It is something that happens with dementia, so unless the care home that your dad is in only wants the early, easy stages of dementia they should be able to cope - at least at this stage. Ask the manager what sort of things they would not be able to cope with.
 

Sarasa

Volunteer Host
Apr 13, 2018
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Nottinghamshire
Sorry to here that @imthedaughter , your dad is usually such a sparky person. No real advice to give, but I hope he rallies, at least a bit. Mum's care home deals with people who have limited ability and/or incontinent and manage to keep most of them in the home with the aid of district nurses etc, so I hope your father's home is the same.
 

imthedaughter

Registered User
Apr 3, 2019
944
0
Hi @imthedaughter . Im very sorry to hear about your dad. If hes got vascular dementia, or a vascular component of mixed dementia, this could be one of those steps down, albeit a large one. In this case it may stay the same for a while - but there again, perhaps not. Thats the problem with dementia, you just never know, so play it by ear.

The first thing I would do is speak to the care home manager. Reduced mobility and incontinence does not require nurses - carers can deal with perfectly adequately, so it is not inevitable that he will require a move. Mum became incontinent and lost most of her mobility and stayed at the same care home (not nursing home) right up to the end. It is something that happens with dementia, so unless the care home that your dad is in only wants the early, easy stages of dementia they should be able to cope - at least at this stage. Ask the manager what sort of things they would not be able to cope with.
Thanks @canary - I spoke to one of the senior carers on Saturday and he was a bit better, but still staying in his room and clearly not really himself. She also reassured me that the mobility and incontinence is less of an issue, it would be more about his behaviour and refusals of help which may push him towards an EMI home. However this particular carer really does care about him and she told me she wants to care for him for the rest of his life in the home he's in now, which I found quite touching.
I agree with you though, I think this is a vascular related step down type of thing, although he's improved in the past few days he's still not right. They have got him on antibiotics but I'm not convinced there's an infection.
 

imthedaughter

Registered User
Apr 3, 2019
944
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Sorry to here that @imthedaughter , your dad is usually such a sparky person. No real advice to give, but I hope he rallies, at least a bit. Mum's care home deals with people who have limited ability and/or incontinent and manage to keep most of them in the home with the aid of district nurses etc, so I hope your father's home is the same.
Thanks @Sarasa he has rallied a bit but I fear it's a step down from where he was. I hope he can stay as well but I will deal with it if he has to move.
 

imthedaughter

Registered User
Apr 3, 2019
944
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Has your Dad improved with the cooler weather @imthedaughter ?
Hi @lemonbalm - a bit, but I'm not sure it was the weather so much although it can't have helped. Apparently he's still eating and drinking well, so no problems there, his mobility has been a bit changeable although it's far better than it was. I am wondering if there was some kind of vascular issue which kicked this off as he does seem to be recovering slowly and there's no apparent infection.
 

imthedaughter

Registered User
Apr 3, 2019
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Spoke to a lovely nurse earlier who drew the short straw - I mean, had the pleasure - of the care home round this morning. He told me that the paramedics should have called me to discuss his hosptialisation or not - and we are completely aligned with what is best for dad re: DNAR and no invasive testing, but yes to obvious needs or treatable conditions.

He also agreed with me that Dad probably had a TIA which caused the decline and explains his now gradual recovery. Dad is still a bit unsteady so not 'mobilising' as the nurse said but there's no reason to expect he will not recover that as well.

And with regards to the home placement, although he will be assessed, the nurse seems unconcerned about the refusal of personal care, given it's extremely common, and if he was left alone (even if unwise!) he wouldn't get aggro in the first place. So I think if they can put in place some coping strategies; I assume they mean things like ensuring he is in pull ups so accidents are prepared for and so on (as if he does have an accident during the day when not wearing pull ups he would need immediate clean up, and he's not always keen on that!)

Dad has continued to improve so I'm feeling a bit more positive, and he's happy enough in his room watching the Olympics, bless him.

Oh and the nurse described dad as having advanced dementia. So there's that.
 

northerndaughter

New member
Jul 31, 2021
2
0
I posted the other day as Dad was struggling in the heat, they thought with a UTI.

It's not apparently a UTI. He isn't really better. I'm sort of diagnosing a stroke of sorts from a distance here.

He is very unsteady on his feet, incontinent and hasn't been able to leave his room since Tuesday. Dr can't pinpoint the reason for it and suspects a sudden decline. I'm a day of driving away otherwise I'd have gone to see him already.

The care home have been brilliant but they aren't nursing and will struggle to deal with him if he doesn't improve.

Referral to OPMH has been made.

Does anyone have any experience of this? Is this decline trajectory likely to continue? I don't know what I should do next.
The first thing is whether your dad may have a delirium. New confusion due to medical cause. Often first thought is whether UTI but many other causes. Eg dehydration, constipation etc. If you want to read more theres an excellent info sheet on delirium on dementiaunited website, go to our work, delirium, then education. Hope it helps
 

imthedaughter

Registered User
Apr 3, 2019
944
0
The first thing is whether your dad may have a delirium. New confusion due to medical cause. Often first thought is whether UTI but many other causes. Eg dehydration, constipation etc. If you want to read more theres an excellent info sheet on delirium on dementiaunited website, go to our work, delirium, then education. Hope it helps
Yes I did look into this. However, Dad exists in a state of constant confabulation and confusion. He hasn't had a grip on what month or year it is for years now. It seems it would be hard to diagnose.
However given his history and with him having vascular dementia it seems most likely it was a TIA, especially as the way he has recovered from it is in line with this.
His key carer was not convinced it was a UTI or dehydration as apparently he drinks a lot more fluids than the other residents, and when tested his urine was apparently clear and showed good hydration.
 

MM62

New member
Sep 13, 2021
2
0
I posted the other day as Dad was struggling in the heat, they thought with a UTI.

It's not apparently a UTI. He isn't really better. I'm sort of diagnosing a stroke of sorts from a distance here.

He is very unsteady on his feet, incontinent and hasn't been able to leave his room since Tuesday. Dr can't pinpoint the reason for it and suspects a sudden decline. I'm a day of driving away otherwise I'd have gone to see him already.

The care home have been brilliant but they aren't nursing and will struggle to deal with him if he doesn't improve.

Referral to OPMH has been made.

Does anyone have any experience of this? Is this decline trajectory likely to continue? I don't know what I should do next.
My mom has been having hallucinations the last few days, incoherent speech, and just sitting and staring. She us probably mid level. I am wondering if she had a mild stroke as well??. Mom is unsteady on her feet, but she still goes to the bathroom with help.
 

lemonbalm

Registered User
May 21, 2018
1,799
0
My mom has been having hallucinations the last few days, incoherent speech, and just sitting and staring. She us probably mid level. I am wondering if she had a mild stroke as well??. Mom is unsteady on her feet, but she still goes to the bathroom with help.

Hello @Mmorse

I would definitely get your mum checked for urine infections which can cause these types of symptoms, if you haven't already. It's best to consult a doctor about any sudden changes.
 

imthedaughter

Registered User
Apr 3, 2019
944
0
My mom has been having hallucinations the last few days, incoherent speech, and just sitting and staring. She us probably mid level. I am wondering if she had a mild stroke as well??. Mom is unsteady on her feet, but she still goes to the bathroom with help.
Dad was literally bent double and was gripping furniture etc to get about, falling out of bed - that's how they found him. I would definitely get her checked out for infections etc. I didn't want Dad scanned as it's too much for him.
 

lushr

Registered User
Sep 25, 2020
192
0
yeah, my mum went crazy, violent, they found no UTI, she was hospitalised, a week later the cultures showed there WAS a UTI it just hadn’t grown enough gor the tests yet… she went back to normal once the antibiotics kicked in.