Elderly DM with dementia and recurrent UTI hell

[Donm999]

DM is 78 with early stage Alzheimer’s, alongside some other health needs, including incontinence. Lives alone with private care visits a few times a week, won’t let them do much, and won’t accept further help.

We are stuck in a cycle of recurrent UTIs for the last year. Alongside discomfort, they also seem to massively impact cognition as she gets quite frenetic and panicky, and also can start hallucinating (even when infection at milder levels). To be honest, it’s ruined some of the Christmas period as she had one just before Xmas, ran around sorting that, and then seems to be back again just in time for New Years Eve.

I don’t live locally, am the only one supporting her, and am just overwhelmed with feeling responsible for sorting her medical needs as she won’t do anything unless I step in. We just feel stuck in the hell of repeated infections which nothing seems to shift. She’s had prophylactic antibiotics, but then the strain became immune to them and it’s then been 1-2 infections per month.

Her self care isn’t great, but won’t accept any further care or personal care.

Part of this is a moan, but also be very grateful for any advice or empathy if anyone has had similar to manage.

Random, but my urology specialist nurse recommended D Mannose to me for recurrent UTIs, you can get them from Holland and Barrett and they def help me (when AB failed)

She needs an urology referral really, I’m
now having bladder installations, which are helping, but I appreciate that this is A.N.other thing for you to deal with
hugs, because it’s hard

Does she drink plenty to help flush out any bacteria?? You can get jelly drops, look like sweets but actually are very hydrating. Sending hugs x I'll try and find the link

D Mannose, also vaginal estrogen can help - but it will take a whole to take affect. It sounds really tough.

They sre called jelly drops

Vaginal oestrogen, but I'm not sure how you would get her to be compliant with it. How often do you see her, as it needs using twice weekly?

Does she get constipated? That can put pressure and cause the bladder not to empty completely. Which leaves a reservoir of urine that bacteria like to grow in.

Sometimes treating constipation ( if it's there) can help.

Thanks - she’s had uro-gynaecologist involved…but also won’t leave the house so can’t get her to any medical appointments and she is refusing any further medical procedures to investigate too (not that she’ll go to them). Might try them again and try and get a phone appt if they’ll allow it.

Have given her D-mannose gummies. Shes taking them but not 100% regular. However, didn’t want to mess with her pill box!

She drinks but probably not enough. I’ll look at the jely drops idea as she loves anything sweet!

@Donm999 good luck x I know its difficult with a relative who's stubborn x

It really is. D-manose we’ve done. Esteogen cream she wouldn’t apply regularly (you will sense a theme here with non compliance/confusion with medical stuff!). I managed to get the gp to prescribe an oral tablet which can help with dryness as an alternative.

Yep. She has an atrocious diet, and also won’t take the Movicol sachets regularly either 🙄

I’m fighting a losing battle on this one to be honest as she won’t help herself, and isn’t ‘bad’ enough to be deemed without capacity

I really don’t want to be a harbinger of doom here but my DM’s recurrent UTI issues (which she didn’t push about and her GP didn’t refer soon enough) were in fact bladder cancer.

I don’t know what to say to you because it’s clear your DM needs to engage with medical services but unless you can force that, there may be nothing you can do, save sort out a Power of Attorney and take over. Which is itself a can of worms if she still has some capacity. I just really feel for you and suspect you will have to wait until there is a major falling over, metaphorical or physical.

Really, I would just let her be

She is ruining your life.

You need to put yourself first before you have a breakdown.

Some people can't be helped.

I agree. There is absolutely a chance that something bad could be lurking and we just don’t know as she won’t engage with any procedures. To be honest, I’m not sure she’d manage surgery, major intervention etc anyway so likely not much that could be done anyway. Just trying to manage quality of life as best I can.

I have LPAs in place; but she’s not completely lost capacity and I don’t feel happy to overrule.

I am sure there will be fallout!!

Thank you. I am trying but find I’m struggling with boundaries when she’s medically unwell and knowing if I do nothing it will end up being potentially life threatening.

it is a no win situation. I’ve really struggled over Xmas (and ongoing) with it. I do have support in place via counselling and a lovely husband and will keep working on boundaries!

My gran was the same, dementia with recurring UTIs. It’s so cruel and would be kinder if they just allowed them to pass with dignity (sorry, I don’t mean to cause offence) x

My Mum had similar and eventually at my strong urging Dr prescribed longterm antibiotics which helped massively.

You have my sympathy, my mum has been in hospital with delirium stemming from a UTI, she is now on her 3rd separate set of IV antibiotics for 3 infections. Her delirium is so bad that she won't be able to return home, she has gone from being fully independent to being bed bound & double incontinent with behavioural issued including swearing, throwing things & taking her clothes off, she has now stopped eating & has lost over 6 stone in 12 weeks. It must be very difficult in someone with dementia because so many symptoms in dementia & delirium cross over. If your mum pays for her care, check out if you can claim continuing health care if you haven't already claimed, frequent UTI are one of the conditions that count towards getting it.

I'm sorry to be blunt but her getting something life threatening would be best for her.

She is not living. She is existing and that is why she is refusing treatment. She doesn't want to be alive and if she is a good mother then she won't want you to suffer either.

PLEASE PUT YOURSELF FIRST.

Hello, Are you me?? Very similar issues with a very similar mother (I have a thread, my mum climbed out the window!)

I have no advice as I'm just trying to figure this out myself but bucket loads of empathy.

I feel sometimes I'm being judged for not looking after her better but when you're dealing with mothers with personalities like ours it's incredible difficult.

Lol, no my DM hasn’t made it out the house in months, so a window would be a bit of an event 😂

The lack of engagement in their own medical needs is very hard to manage. Due to the dementia, they then seem to live responsibility free whilst we stress.

Thank you for all the responses. It has helped as reinforced all the things I have done and the myriad challenges in trying to manage another adult!! Especially one with little reason or agency 😫

I’m going to try the doctors again on Monday to see if there is anything else we can try.

I feel for you. My recently widowed mother doesn't like to attend to her own health either. And as for my lovely mother in law!

It's so hard isn't it.