New and feeling guilty

[Martij]

Hi I care for my mum with moderate Alzheimer's I work full time too. I love her to bits and wouldn't not care for her but I feel so guilty if I go away for a few days even though I put extra care calls in. I am due to go out the country for 3 nights in a couple of weeks and always get so worried. This is being made worse at the moment due to ongoing Uti's which are really knocking her off her feet hopefully next week they will agree to a low dose anti biotic to prevent these as I seem to be forever taking in urine samples they say there are traces of protein do nothing and within 2 weeks I have had to ring for an ambulance because she is so weak and has an awful uti. The difference after a few anti biotics is amazing it's just they are so slow to give them out. Anyway now I don't know whether to go on my break sorry am rambling so much to say .... I have a brother and sister but they do nothing on a practical level I have sorted social workers care plan DlA appointments etc etc anyone else have family but feel alone??? Anyway Hello and what I have already been reading helps

[Frito]

Hello and welcome.

I'm not sure if you've already discussed this but what about respite care instead of increased calls? If your mum has dementia exacerbated by recurrent UTIs it is risky for her to be alone and I understand your concern.

[Martij]

Hi Frito

Thank you for your welcome I have tried respite before but Mum digs in her heels and flat refuses to go ( she has always been a strong person something I love and admire) I am going to commence day care again next week to see how she goes in the hope she will enjoy it and build trust in the place as they also offer respite I can but see. She just so loves to be at home with her cats and where things are familiar to her and it would break my heart to force her to go. I am going to look at a care service that checks in the night. The uti situation is so frustrating as when she recovers it's like having a spring chicken around and she manages at home so well with carers coming in. Sometimes it's fighting against the system that wears you out the Uti's have been ongoing since October I just wish someone would make a decision on a continuous low dose of anti biotic instead of it dragging on she has just finished her 7 th course since October and already since finishing them a week ago I can see the infection returning:-(

[Frito]

Well that's fair enough Marti.
Does your mum have an extra bedroom? It might be worth asking social services for 24 hour carer instead of respite so you can have a break. It's a long shot though and you might have to put your foot down.
Good luck with the antibiotics. If you GP is reluctant to prescribe antibiotics it might be worth asking them about other prophylaxis ie cranberry extract (didn't help my sister mind).

[Martij]

Hi SussexRokx

Thanks for reading your parrot has made me smile:-)
Relief I am not alone on the uti situation they are very wearing for Mum and for us as carers am sure Dr will sort it just seems to be a battle at the moment as they are wanting to check with ultra sound etc but in the interim they keep coming back
I think you are right a review of the care plan would be useful I will request it and not had a carers assessment but they have put in place a respite budget but no idea what that is
I know how it is to feel stuck my cats help keep me sane

[Martij]

Hi Frito

Yes am going to ask for a review of care plan and yes spare rooms so that is a good option thank you I think the dr will prescribe the anti biotics it's just the battle to get them in the interim that's starting to wear thin but we keep going

[SheWolf]

Hi Martij

Welcome to the forum, you're in the right place to get lots of advice and moral support.

...hopefully next week they will agree to a low dose anti biotic to prevent these as I seem to be forever taking in urine samples they say there are traces of protein do nothing and within 2 weeks I have had to ring for an ambulance because she is so weak and has an awful uti. The difference after a few anti biotics is amazing it's just they are so slow to give them out.

That's probably because they're worried about the 'overuse' of antibiotics and the emergence of antibiotic resistant bacteria. All very frustrating in your situation, when they are slow to prescribe the one thing that you know will work. My Dad (83) has dementia and is in a care home now, but prior to moving there he had repeated UTIs, which might have been partly caused by his poor hygiene back then. Now that he's in the care home they make him shower or bathe once a week (quite an achievement as he HATES anything involving hot water these days!), and he hasn't had a UTI since moving there. So, I was wondering what your mother's personal hygiene is like? Maybe if her hygiene is poor that could be a contributory factor?

...anyone else have family but feel alone???

Yep, I'm in the same boat really - two sisters but neither of them live close enough to be of much use. One in particular is something of a 'helicopter', swooping in when it suits her, stirring up all manner of things, then zooming away just as quickly. All very frustrating, but it's all too common in families that one person seems to carry the bulk of the care burden while the others get off lightly. From what you say though, I think you need that trip away, so why not ask your siblings to help out with the care during your absence? Maybe they'll be more appreciative and understanding once they've had a taste of what your life is like.

[juneo]

Hiya Martij,
Same here im afraid ,family just walk away & leave me to it , mind you they are always telling me how i should be doing things & UTIs are a nightmare , quite a few of us on here have carees that suffer with those , they cause a lot of problems as you know , hope your Mom does get the Antibs .
Nearly forgot to welcome you to the Forum , Juneo

[Martij]

Hi Shewolf and Juneo
Thanks for reading and yes I feel better already just from one post it's good to know others are experiencing similar issues. I wash Mum every morning but due to working am not here to wash every time she uses the toilet when well her hygiene is pretty good but it declines once the uti takes over they are a nightmare
Everyone I know who has been or is a carer is usually on there own regardless of having siblings so yes one carries the burden. I tried my sibs before when away but they just pop in for a max of 3 hours on 1 day then go again I know there could be reasons for this like finding it hard to see mum this way but really it would be nice if at least they could spend one night but I don't hold out much hope as they haven't in 3 years.
Am defo going to try daycare so respite could be an option in the future but I will have to go with Mum on that one . Thanks for sharing it helps

[SheWolf]

Martij,

It is very hard watching a parent going into decline with any form of dementia and I must admit, after just 3 or 4 hours with Dad, where he repeats the same questions and comments over and over again, I've had enough and am relieved to get away. So, I understand why your siblings might not be able to cope with longer visits, but there are 2 of them so maybe if they set up some sort of rota between them, alongside the support of paid carers, everything could be covered?