Hoping someone may be able to help. My mum is in the advanced stages of Parkinsons. She has had it for 14 or 15 years now. She is 77.
Over the last year or so, her thought processes haven't been as good but we have noticed a peak in confusion for the last week. We don't know if it is progression of Parkinsons or whether it is being caused by a Water Infection (which she does have and has been on antibiotics for just over a week) or the antibiotics themselves (Nitrofurantoin) which are not mixing well with her other medication?
We are definitely at the stage where we need some advice and support as a family now. My dad is the main carer so I am sure he would benefit from having someone to talk to (although he probably thinks he doesn't need a counsellor as he would say 'what good is talking going to do?'.
My mum now faints regularly due to low blood pressure which causes added stress- obviously especially to my parents as they are the ones coping with this for 24 hours a day.
The kind of advice/ help I am looking for:-
- Has anyone gone through anything similar and can give wise or re-assuring words?
- Does anyone know if the antibiotics could be causing a peak in confusion? Or is it simply the water infection?
- What support is out there for my dad as a carer to give him a rest and also for my mum? How would we go about getting a great carer to help support my dad for a few hours a week etc? I live in a different town to my mum and dad and have two babies under 2 so do as much as I can from afar and having daily Facetime!
- How do you even broach the subject of the future and decision making for the person who is currently confused?
Hi, I’m no doctor, but have been through similar with my dad, my dad wasn’t pwp, I am. I would almost certainly say that the infection is causing the confusion, make sure Mum is on the correct anti b’s for her infection.
With regards to support, I would urge you to contact your local social services and have an assessment done on both Mum and dads needs, they will help you decide on a care package to suit and are very sympathetic and understanding.
Urine infection is far and away the commonest cause of worsening confusion in the elderly, Parkinson’s or not. It should settle with the antibiotics, and make sure she gets plenty of fluids - doesn’t have to be water, tea and fruit juice are fine. I can’t advise about carers, I live in Scotland where such services still exist. I agree with Ali P, contact social services for an assessment for home care needs.
I'm really sorry to hear about the challenges your family is facing right now. You've had some good advice here, for example about getting an assessment.
In the very short term, it might be a good idea to have your mum and dad get in contact with our helpline advisors. They are closed 30 December through 1 Jan but they will be there tomorrow. You can find out more about their opening hours here: https://www.parkinsons.org.uk/news/living-parkinsons-festive-season.
Am having a very similar situation with my Mum, HavanaS. Nightmare at the moment - I hope things improve for you & your folks soon.
My mum (78) has had a ‘mild’ UTI over Xmas and it has caused enormous problems for her & us. She has been living independently (alone) with our support for 5 yrs but things have taken a real downturn lately. Confused - mistaking night for day - up at all hours - taking her meds God knows when.
We’ve had the GP out (3 day course of antibiotics - apparently, NICE guidance is it should be 7 days for a neurogenic UTI - wish I’d known that last week).
She’s still disordered in her pill taking so we can’t trust her with them now. I think the meds are wearing off much more quickly & she feels she craves the next one well before it’s due.
This morning, for eg, she’d taken 2 before 9am!!
We realise she’s no longer managing so have started a care assessment & have also arranged for the local Parkinson’s UK advisor to pay a home visit. Christmas/NY is a rubbish time to try to get things done!
I’m going to ask for an urgent clinic appointment with her consultant (hard to get hold of Parkinson’s nurse) & more anitbiotics. Wonder if the GP will give me a repeat prescription for ABs so I can start earlier treatment in future?
It’s all very distressing. I dread the phone ringing at the moment. It doesn’t help that I have MS & have to try to manage that to avoid my own health going own the pan…
Sorry, I think I just ‘splurged’ all over your post there. I do hope your mum gets better soon
Am having a very similar situation with my Mum, HavanaS. Nightmare at the moment - I hope things improve for you & your folks soon.
My mum (78) has had a ‘mild’ UTI over Xmas and it has caused enormous problems for her & us. She has been living independently (alone) with our support for 5 yrs but things have taken a real downturn lately. Confused - mistaking night for day - up at all hours - taking her meds God knows when.
We’ve had the GP out (3 day course of antibiotics - apparently, NICE guidance is it should be 7 days for a neurogenic UTI - wish I’d known that last week).
She’s still disordered in her pill taking so we can’t trust her with them now. I think the meds are wearing off much more quickly & she feels she craves the next one well before it’s due.
This morning, for eg, she’d taken 2 before 9am!!
We realise she’s no longer managing so have started a care assessment & have also arranged for the local Parkinson’s UK advisor to pay a home visit. Christmas/NY is a rubbish time to try to get things done!
I’m going to ask for an urgent clinic appointment with her consultant (hard to get hold of Parkinson’s nurse) & more anitbiotics. Wonder if the GP will give me a repeat prescription for ABs so I can start earlier treatment in future?
It’s all very distressing. I dread the phone ringing at the moment. It doesn’t help that I have MS & have to try to manage that
I’m sorry to hear that your Mother’s health has been deteriorating; I can imagine how distressing this has been for you and your family. You mentioned in your post that it has been hard to get hold of a Parkinson’s nurse and I just wondered if you’ve tried contacting our helpline?
If you contact our helpline, a Parkinson’s nurse will be in contact with within 24 hours and will be happy to answer any queries you may have regarding your Mother’s condition. You can contact them on 0808 800 0303.
A belated thanks, Reah. I took your advice & contacted you guys and a Parkinson’s nurse called the next day (what a great service - in my NHS trust area, there’s one p/t consultant who is retiring soon, a Parkinson’s nurse who is also retiring & the remaining nurse is doing prescription training. Very hard to get hold of anyone).
She was able to confirm my woolly thoughts about end of dose deterioration and ideas to raise with mum’s consultant. Many thanks again.
