Not sure who to ask for help or what’s normal

Hi all. My dad has been diagnosed with PD in 2016 and has been ok, but deteriorated a lot during lockdown. Recently he’s had episodes of extreme confusion and we really haven’t been given any indication of what is ‘normal’ and what to do about it. He is so mean to my mum when he is confused and he doesn’t mean to be, but he just isn’t rational and forgets words and gets very angry and confused which I understand but we’ve been given no indication of how to help him. He was in hospital for a bit and then came home with no longer term plan.

The last time mum called the Parkinson’s nurse she basically said she couldn’t help with anything and we would have to ask his doctor anything at the next review… six months away. We still don’t know what the nurses are ‘for’.

Just feeling a bit adrift and that all the advice leaflets say is ‘talk to your GP and Parkinson’s nurse’ but they don’t help at all :frowning:

Hi @SouthSpecific and welcome to our forum.

It sounds like your whole family has been going through a really tough time. Not only is your dad confused but he is also having mood swings and seems to be taking it out on the people who love him. This is upsetting and hurtful.

I know that the other members here will be very supportive and will share their experiences as carers and people with Parkinson’s. Coping with Parkinson’s can be very stressful and upsetting for many reasons and this will impact the whole family, especially during lockdown. As well, some medications can add to these symptoms, so it’s important to talk to your dad’s doctor about this before his next review in case a modification would help. You could also share your concerns about the Parkinson’s nurse.

There’s a lot of helpful information on our website for carers. Do give it a read. A search on this forum for Confusion and Mood Swings will also be very fruitful.

Finally, I’d encourage you to contact our confidential helpline. We have a team of amazing advisers that would love to offer you more support on your situation so do give us a call on 0808 800 0303 for advice.

Best wishes,
Forum Moderation Team

Thats really not good practice from the Parkinson’s nurse. Do you know your consultants secretary. If not find out who she is! phone or , always best if you can get on speaking terms with them. And explain what you have told us here, she has the consultants ear. say you need to bring any appointments forward urgently. That is what i would do.
Esme x

Hello SouthSpecific, reading your post I can only imagine how difficult it has been for you all and understandably you are feeling lost and alone. Well we may not be able to be physically with you but you are most certainly not on your own here on the forum. Janice P has given you some excellent pointers and I would encourage you to follow these up.
You ask is it normal. My own view of that in relation to Parkinson’s is that everything is normal and nothing is normal. That is whatever is happening to your dad is normal for him but it doesn’t necessarily follow that it is normal across everyone as it affects everyone differently. A more appropriate question in many cases is why is this happening, what has caused it? Often it is linked to medication issues, maybe the onset of depression or anxiety for example. That is why it is important you get review ASAP. Esme’s advice is exactly what I would do.
It should not be so but sadly the quality of service across the country is not consistent and you may need to be tenacious and keep at it until they take notice if they are hard to get hold of. Don’t give up. It is your dad’s consultant that is needed here but if he has a good GP he or she may be able to assist communication with the consultant but your best course as Esme said, is to speak to the consultant’s secretary.
The quality of service provided by the Parkinson’s Nurses is also variable the good ones are worth their weight in gold but that’s clearly not your experience. There are not enough of them, my own carries a big caseload covering a large geographical area so can’t always be readily available; but she has an excellent rapport with my consultant and between them I am one of the lucky ones who gets a good service.
I do hope these replies have helped. I know that it still remains up to you to get things moving and that it may not be easy to do, but hope you now feel you have something to work with.
Let us know how you get on. Good luck.

I’m sorry to read your post. Sadly it mirrors my experience.
My local Neurology services include a Parkinsons nurse but she is a “non-dispensing.” The local service advised me to contact my consultants hospital to get a prescription whereupon I was removed from the local Neurology service support “because I had asked for help elsewhere.”

I can concur with all of the above posts.
My husband has deteriorated considerably over the last 6 months - and we both do not not what is normal and what is expected with the progression of Parkinsons - how quick/slow it can progress.
Having spoken with the Parkinsons Nurse - has helped with chasing up his consultant appointment but that is about it really - we are still both treading water until his next review in yet another 6 weeks time.

How frustrating for you MandyB and situations like yours and the others are sadly all too common. It would helpif there was consistency in services across the country at least everyone would know where they stood but that’s not going to happen any time soon. If I might make a suggestion, which is often repeated advice but none the less valid for that, and that’s to make a note, keep some sort of record of your husband’s deterioration and be as specific as you can. The clearer the picture the consultant has the better his position regarding decisions on what happens next. It may also help clarify in your own mind what the key issues are and that may include the impact his deterioration is having on you and others for example which should be as much part of the equation as anything else. I hope the appointment goes well when it finally comes around.