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

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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.

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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.”

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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.

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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.

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Well, we are now two months forward and I think 12 months backwards. He is still deteriorating, the Parkinson’s consultant has issued yet more tablet to try to slow down the progression. He has been to the doctors last week with a plea for help but all he could say is that he would refer him for a brain MRI - talk about two steps forward and three steps backwards. he is continue to deteriorate as we speak - now trying to arrange for a PRIVATE MRI which will cost an arm and a leg - but I suppose you can’t take it with you… we continue to live in hope but that is decreasing with each day that goes by…

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Hi my husband got very confused back last October with also having hallucinations we got in touch with our Parkinson’s nurse who did nothing to help. Who wouldn’t speak to my daughter who was helping me to find out what was going on , he wasn’t sleeping and was spray spiders which he seen crawling out of the walls. He had people who wasn’t really there watching him and following him around even got to one stage the he wanted to chase people out street with a bat that wasn’t really there, he finally ended up in hospital as our gp didn’t know what else to do to help. After being in hospital for 3 weeks he was diagnosed with Parkinson’s dementia. The Parkinson’s nurse told us on our appointment 3 months later that they didn’t want to diagnose anything too quick, didn’t answer when I asked how long were we supposed to go through all this before they were willing to tell us. The young onset dementia team has been really helpful and always at the end of the phone. Just had our new appointment with Parkinson’s pushed back to next March 2022. Like to know what they are supposed to do for people like this


I do this and it does work…The secretary is almost like the gatekeeper!

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I just want to say thank you all for replying. We’ve had some good and some bad. Basically he now has a new consultant and the Parkinson’s nurse has been better at getting back to mum but not great. He was doing much better when they changed from ropinerol to levodopa but then they added another pill and he’s gone right back- not able to get up easily, not able to walk properly, really bent over, paranoid, delusions, he’s being horrible to my mum and he was rude to me this evening. It’s so difficult when he’s like this as it’s also hard to know how much of it is not his fault and what he could help.

Still waiting for another call back this week from the Parkinson’s nurse… she was doing better but she’s gone quiet again.

I said to mum this can’t go on as she doesn’t deserve this abuse all the time. I wonder if he could have someone to come in and sit with him sometimes so she can go out.

My experience of the local PD nurses wasn’t great, I could be wrong but I think there’s only so much they can do? Ultimate responsibility lies with your father’s consultant. Honestly I would contact the secretary again and request a call back. Since Covid they seem to be more open to telephone and video calls, which might suffice until the next appointment in person? Good thing about video call is that they can see how bad your father is?

Make a list and try keep a diary of how often the issues are occurring, are they specific to a time of day or night. This might be relevant to one particular med as often they are planned like building blocks, some are boosters some can be slow release. Mention the deterioration when the medication was last changed. Maybe discuss with consultant, some referrals for memory testing. They will do what’s called ACE testing and there will be a rating at the end. This gives a good indication of brain function and unfortunately that can indicate early dementia onset but medication can be prescribed to slow progression. If this is a factor, the earlier he gets these the better. Your father might benefit from a referral like physiotherapy or chiropody, to help with muscle stiffness or how he walks on his feet.

AFAIK you can also contact your local authority and request an assessment of care. You can explore the effect everything has had on your mum and they will explain your options. Sometimes there are community organisations or carers that can help with sitting with your father. If housework is an added stress, there might be a service available for this, it really depends.

It’s worth having a private conversation with your mum about separating these behaviours from the person. Try explore ways to for you all to stay calm but distract him when these things happen, a piece of music or a prompt to watch a bit of TV or sport, audio books, jigsaws etc. Something to ground him. Maybe little reminders around the house for things he struggles with, phone numbers on the fridge door, labels on things etc.

If he was always a person who liked to be out, he likely is very frustrated at the way his mobility has deteriorated. This may be giving way to anxiety about the future. I know it’s difficult but it’s not him, it’s the illness xxx