What additional support options for my dad?

Hi all,

I’m worried sick about my dad and have just come across this forum, so thought it worth asking if anyone knows of further help options for him.

Long story short, after ongoing balance issues and some other symptoms, my dad had various tests, and was diagnosed with Parkinson’s in March this year. At that point, it was so early that the MRI came back negative for Parkinson’s, it was only at a follow up consultant appointment that they noticed something very minor about how he held one arm, that led them to send him for a DaTSCAN which then confirmed the diagnosis.

Dad was never directly told his diagnosis. All he got was a copy of the letter that was sent to his GP, which said he’d been diagnosed with Parkinson’s and asking the GP to prescribe levodopa.

At the time I tried to encourage dad to seek a follow up appointment but he didn’t see the point. So he took the levodopa and that was that.

Mum and dad are old school, they innately trust the system and don’t like to cause a fuss. After a few months of no improvement, I had been trying hard to say he should seek a follow up to ask about options, but they refused. I found out about Parkinson’s nurses and eventually they agreed to go. First appointment was beginning of September, and my parents came out saying how wonderful the nurse was and were glad they went. Nurse didn’t want to try multiple changes at once as then we wouldn’t know which one helped, which makes sense. So she said to increase the levodopa, and come back in 3 months.

If that hadn’t helped, she said she would refer him to some sort of class (don’t know the details) that teaches you movements of some sort to help. It’s not available on NHS or even in all parts of the country, but the Parkinson’s nurse had access to it. It apparently has a 100% success rate at improvements, so sounds fantastic.

The problem is, from being so mild that the MRI came negative for Parkinson’s in March, my dad has gone very very rapidly downhill so quickly. His walking slowed more and more, his balance issues got worse and worse. He now cannot walk more than a few yards, and that is at a painfully slow shuffle, with lots of wobbling and struggling.

Mum and dad have a caravan in Wales, in a very quiet out of the way place. Dad lost his balance and fell over, and could not get himself up. My mum is in a wheelchair (dad is her carer) so she couldn’t help. He was there for ages, and eventually someone came along who helped him up.

Last week mum has told me of other issues that are starting. Firstly lots of toilet problems which she didn’t go into detail of, but results in her doing lots of difficult washing and cleaning up - which she can barely manage with her own disability.

More worryingly dad’s now started memory issues. Couple of examples - mum found him sat in silence and asked what he was doing, he couldn’t remember how to turn the TV on - as in just turn the power button on, not even fiddling with the TV guide or anything. Another is that mum had a conversation with him about having to take his pills late as they had eaten slightly late. 2 minutes later she found he’d gone ahead and taken the pills, and couldn’t remember the conversation.

So all in all, I’m extremely worried about them both. Dad is mum’s carer as she’s in a wheelchair - she can get around the house with a crutch, but can’t do much of the house chores etc, dad does those. But due to the memory issues mum is now having to hover around him and check on him constantly, as he keeps doing silly things and she doesn’t dare leave him unattended for long. She’s now not sleeping as a result, as every time he gets up in the night (frequent now due to Parkinson’s) she is dead alert, listening, to make sure he doesn’t fall over.

After much pestering from me, mum finally rang up to chase up the promised follow up with the Parkinson’s nurse. She was told it wouldn’t be until January which is clearly far too late. After ‘begging’ as she put it, she was given an appointment 6 weeks from now. But honestly, if dad goes down as much in the next 6 weeks, as he has in the last 6, I don’t know what is going to become of them.

I’m sorry for the long post, but I am hoping someone out there with Parkinson’s experience may know, if there are any other avenues for help that I could try for them? The nurse seems a great contact, but beyond that is there anything else? I know there is nothing else via the NHS, as the nurse has said there is next to no funding for Parkinsons.

Thanks for anyone who has read all of that.

Their own GP would be a good place to start. They are good general medics. Also they should be able to access physiotherapy, occupational therapy and memory clinics. As well as the medical side it sounds like your parents are getting to the point of needing carers to help and the GP should be able to help with this process.

Hi and welcome to the forum, @lancslass. You’ll find everyone very friendly and supportive here and I’m pleased to see that @Podd has already joined in with some useful information.

Your dad has been through quite a journey with this and when you add it to your mum’s situation, it’s not hard to see that it’s a struggle and a worry for you. I can’t imagine how difficult this is for everyone, especially with this sudden decline. I’m sure six weeks feels like a very long time.

@Podd is quite right to tell you to ring your doctor and let them know urgent help is needed. This obviously can’t go on for very long.

Do take advantage of our Helpline on 0808 800 0303. It’s a free and confidential service where you can speak to local advisers who can support you with any concerns or just simply listen. Please also see our section for Carers here: Caring for someone with Parkinson's | Parkinson's UK.

Let us know how things go. I’m crossing my fingers that you have some solutions soon.

Take care
Forum Moderation Team

Good morning lancslass. I am so sorry to hear that your parents are struggling. It is no doubt more worrying for you than it is for them.

You don’t say how old your parents are or what type of accommodation they live in.

We all get older & unpleasant things happen to us & we have to deal with them.
There is no magic button to press & everything will be fine. There is very little free help out there. Their GP should be a first port of call to see if any help can be given.

I live on my own & now live in a ground floor, one bed flat with a cleaner coming in every 4-6 weeks for a couple of hours. I have just applied for a Blue Badge to help with parking. It is a practical thing that will make my life easier. I find this flat brilliant. It is easy to keep clean & tidy & I have my groceries delivered by a Supermarket once a week. I do not have to leave the flat.

I note that your Dad had a Brain MRI scan … Parkinson’s does not show up on these brain scans. They were most likely testing for other non Parkinson’s potential issues. The DATscan is the most reliable test for Parkinson’s. The DATscan tests for Dopamine in the brain. We need Dopamine for everyday tasks & us Parkinson’s sufferers are Dopamine deficient.

Clearly where & how your parents live is a decision that needs to be made.
Getting a live in helper. Moving to assisted living accommodation. Living with you or other family members etc …

Getting advise on what type of accommodation your parents should have is a good idea. But I’m sure you have your own ideas on what would be best.

Again going to a caravan on their own is something that needs to be discussed & stopped.

Parkinson’s Exercise classes are a good idea as they will get to meet people & carers in a similar position.

Best of luck

Hello again lancslass … The other think to ask is which of your parents drives the car?
I assume you know that anyone that has been diagnosed with Parkinson’s has to inform the DVLA to confirm they are fit to drive.

Your Father may also have other health issues not related to Parkinson’s.

Best of luck.


Thanks so much to everyone has replied, I didn’t expect so many people to take the time and so quickly.

I’ll try to address the points raised…

I absolutely agree they should see their GP, but, in any scenario they are both so reticent to go that I have a battle of many months to get them to go for anything. AND with the Parkinson’s, they tell me that the Parkinson’s nurse has said that the GP can’t do anything, that any medication changes, treatment etc, all goes through her. Whether that is true or not I don’t know, but having a ‘formal medical person’ tell them that, means there is simply no way I will be able to change their minds.

They already have a blue badge due to my mum being in a wheelchair. Dad is the driver, first thing I did when he was diagnosed was make sure he notified DVLA, which has been done.

I didn’t go into every last detail in my post, but the extra complication here is that mum has depression. She’s had this since at least 2019, and we have been on a battle to try to get her to seek help. She is on antidepressants but they don’t work at all, and I have honestly been trying for years to get her to go back for more help. Because of the depression every little thing is an uphill struggle with her unfortunately, I know she can’t help it.

In terms of their living arrangements, they used to live a few hours away, and about 6 years ago I discussed them moving to be nearer to us, which thankfully they did. The plan was to get a bungalow (no stairs) but they ended up buying a house with stairs, with the intention of getting a stair lift at the appropriate time. So that may be something I have to pick up with them again.

I agree on the comments about getting help to the house, but I can categorically say there is no way they would consider this just yet. I think there will have to be some further issues/falls before I can get any traction on this with them.

The caravan has been a point of contention for a couple of years. My dad wanted to stop going there a few years ago, but my mum’s depression means it has somehow become her safe place. She mostly just sits inside the van and doesn’t go out, but we have both tried over the years to get her to see that a 5 hour each way drive is no longer practical, plus they are so out in the sticks with medical help a long drive away, hardly any mobile signal. It’s a huge worry.

It is difficult, as they are very set in their ways, and it’s almost impossible to get them to do anything outside of their normal daily routine. So I have to pick my battles as it were, saving it for the mega urgent things.

Sorry didn’t answer the question on dad’s age, he will be 80 in January.

Hello again Lancslass … I can see why you are worried. As soon as his GP or Neurologist is aware of his deteriorating condition that will be it on the driving front.

My widowed Dad started to suffer from dementia in his early 70’s. Sadly it became clear that he should not be driving so my Brother took his car keys away & he moved in with my brother. A few years later Dad moved into a care home where he was very happy till he died aged 79. Yes there were a lot of tears & my Dad was very angry that his independence was taken away from him. But in hindsight the right decision.

I’m 69 & at my age I can see your parents point of view as I can see yours. They want their independence & don’t want family interference. You as a loving offspring are worried about them. There is no easy solution. Clearly there is going to be an “event” that will dictate a course of action.

I like to be in control of my life. I like to plan how things will happen. I am pleased that I do not have any family that will make my decisions for me. I think it makes me self-dependent.

Best of luck.

I feel for you. I can empathise with a lot of what you say. My parents sound quite similar in their attitude and that they refused help/ thought that they would ‘battle on’ for years.

My mum is 82 and my dad is 84. My mum has Parkinsons. She has had it for 20 years. The first port of call is usually through the GP.

There would need to be a care assessment to look at what kind of package can be put it place to support your parents as they clearly need help. My mum and dad were resistant to this happening but we had several critical situations where they now have a team of carers coming in through an agency and my mum has 24 hour care. There is no other way.

I feel that your parents (from what you have said), may be in the same boat. My parents are now very grateful for all the help that they receive and they have come to depend very much (naturally), on those carers and have developed good relationships with them. It’s not going to be easy.

I would say a key thing to sort out is to get Lasting Power of Attorney with your parents to allow you to step in when any health decisions need to be made in the future. It is sensible to do this whilst your parents are still in a position to agree it and for you to know their wishes.

Myself and my brother both have joint Lasting Power of Attorney and we have been grateful that we got this sorted many years ago. We have had to rely on this quite a few times in rocky periods with my mum. I would strongly recommend you go for this.

I know what you are going through:- utter fear/ worry/ feeling helpless and frustrated in a highly challenging situation. I wish I’d have known back then that help was actually out there as I often felt there was no one to turn to when things reached critical stages. A key point is talking to your parents and getting them to agree (with your assistance), in reaching out for that help.

Sorting out power of attorney’s while they still have capacity is excellent advice. It will make life much easier in the long run.

I hope everything get’s sorted out.


I assume they have claimed attendance allowance?
I think one of the side effects of the c19 jab is neurological problems? MS, Parkinson’s and otherwise? A possible claim ?
Another point of view

Hi iv just read your heart felt post and can relate to all you’ve said. My husband was diagnosed 4yrs ago at 67 but symptoms didn’t progress to bad until this last 6months. Now memory, constant toilet needs, shuffle, balance, sleep problems. He has a Parkinson’s nurse & consultant I can ring for support. Also we attend a Parkinson’s support group. The booklets given had some good information & the sleep was outlined as Parkinson’s. Also symptoms differ from person to person. But it was good to here general information. The medication is trial & error some made him worse & some helped. We are still trying to get it right. Life has changed as you are finding. Keep strong, seek help good luck

Hello and very sorry to hear of your fathers diagnosis and your concerns. I would suggest you research hospitals that specialise in the care of Parkinson’s sufferers, more preferable than a general neurologist service. I’d also suggest if your father will allow it you attend appointments with him to ask questions plus be first hand to hear the answers.
An MRI scan does not show Parkinsons so I don’t understand you being told there was no sign of Parkinson’s in his MRI scan :person_shrugging:t3:. The DATscan I understand to be the only diagnostic tool for deciphering the presence of Parkinsons.

The Parkinsons UK helpline is a great resource open to you.

It may also be time to request a social adult services review for your parents for consideration of their ongoing practical needs.
Good luck, Parkinsons UK is there to help. Best Wishes Jane