long story short, mum 87 Parkinson’s and now Parkinson’s dementia. Diagnosed 84 so decision between her and neuro was no dopamine due to risks of falls and dizziness. I appreciate this is a longer post
recent UTI put mum in hospital and then rehab. Left last week with care 4 times a day. An hour before discharge OT rang to ask if I could stay the night with her as she’d been up all night (excited about coming home she thought) and was confused this morning, I did this and mum was up most of the night, pacing. ( One of the nurses had told me she did this and they had moved her to a separate room near the nurses station). Continued through day, I rang the rehab team and said I think this is a failed discharge she’s been up all night and I think she has another UTI. We were lucky enough that they said bring her back. told OT I’d been told she was up the night before that too. Now worried I’ve slighted the nurses by saying failed discharge and didn’t want that to happen, they were brilliant with her.
Doctor treated her for UTI and has also given melatonin to help with sleep and checking iron for restless legs.OT said discharge maybe to a care home as they won’t provide anything more than 4 times a day at home.one of the nurses told me on the way out yesterday that mum was back because she couldn’t cope at home rather than a UTI so i felt it was my fault, Another said she should be in a home. They are writing an activity report on her
yesterday mum said she wanted to keep peeing and did she have another infection - I mentioned it to the nurses and one of them was very short with me, saying it’s her age and we can’t keep giving her antibiotics (3rd infection in a month, last does “one shot”) I said all I’m doing is mentioning it; I’d been in the day before and mum had wet herself which I changed and cleaned her up (she’s not done that before)
my questions are
how long does this stage of Parkinson’s and Parkinson’s dementia last from anyone’s experience; from what I’ve read and seen on YouTube I’m guessing we’re at stage 4 (and I know I’m asking how long is a piece of string)
all this seems to have come since being in hospital
is care home or at home care better given the above and your experiences. Can’t see Mum being accepting of either. She has times of what feels like full lucidity and is fiesty!
I thought we could do it all and keep her at home. i wanted to give mum a chance at home but feel it’s all my fault as I took her back to the hospital and now that chance is gone. I feel like mum is fading away.
I’m trying to learn what I can and support mum in the best way I canthanks for reading this and I really appreciate any advice/info.
thank you xx
Regarding her UTIs... if you can get her to the point of being 100% free of infection, you can then start her on a supplement called D-mannose which works really well to reduce the number of UTIs in elderly women. It worked great for my MIL in LTC. In the US it can be purchased on Amazon. It's not a prescription drug, so you should be able to find it.
"...feel it’s all my fault..." No, not your fault! Please don't feel guilty! You're doing the best you can with a complicated cluster of conditions in your Mom.
You don't send a sick person to rehab. Its for PT and OT. If Mom was in rehab with these UTIs, IMO, she should have been sent to the hospital for IV antibiotics. And you as her daughter can request she be sent there and call the ambulance if they don't do anything.
they have said today they are referring her to a neuro/memory clinic consultant as some meds are needed to help her with the pacing and constant being on
I’ll get her on the cranberry and d mannose and I think the probiotic would be good with the antibiotics.
they did a culture test but haven’t mentioned it and doing another one which I think links in with the referral.
shes also low in iron so they will do a poo sample to check if there’s any colon cancer, apparently the iron may help with restless legs which would be good
thanks too re the guilt. Ipyoure right it’s a complicated set of stuff xx
thanks a really good point about the PD if she’s pacing and appreciate knowing about the paranoia Shirley