I Feel The NHS Has Given Up On My Dad


My lovely Dad was diagnosed about 2 years ago with Vascular Parkinsonism.  He is nearly 88.

He was put on Levodopa but warned it probably wouldn't help and to stop taking it after a month if there was no change.  He did persist just in case but after 3 months there was no positive change, quite the opposite, so he stopped.  He has not been offered any other medication at all.

The neurologist at the local hospital said she would see him for a review on an annual basis.  I couldn't believe this but she said there was not really any point in more regular visits.  He is next due to see her in June.

I tried to apply for a Parkinson's Nurse but we were told he does not qualify for one because his condition is vascular.

My Mum has Vascular Dementia and her condition has worsened since August last year when she had a stroke.  She's had several TIAs since and is now unable to be fully independent.  She is reliant on my ad to prompt and guide her to do things.  Luckily he is still pretty sharp (although I've noticed a few memory issues lately) so she is the brawn and he is the brains - for now.  I visit daily and make their meals in advance, put them in foil trays and load up the freezer so they can maintain a level of independence - for now.

My Dad took my Mum's attacks very badly and ended up in hospital just after she came out.  He was constipated for a week before this but despite me taking him to his GP, contacting the Out Of Hours Emergency Doc on 111 and then demanding his GP visit him at home nothing was done to relieve his discomfort and he fell trying to get out of bed and couldn't get up.  His treatment in the local A&E was beyond disgusting, they just didn't care.  If he'd had even a tiny bit of mobility left I'd have taken him home again, honestly I'd rather have left him in a Syrian prison!  It became apparent that getting him mobile again would be down to me, the nursing staff weren't making any effort, so I spent most of my time in the hospital getting him to use the walking frame and also taking him home cooked meals and helping him eat as he couldn't manage himself.  Eventually we got him home but now he can barely get round the bungalow and has huge difficulties getting up from his chair, which is raised up.

He was also denied physiotherapy but I kicked and screamed and eventually got him in.  The first session the physio pressed down on his kneecap trying to straighten his leg and he has been in pain with it ever since.  I have complained but whatever happens he is now worse than before because of it and I feel dreadful because I was the one who persuaded him to go.

The other day my Mum was crying because she realised she'd forgotten who I was earlier that morning and my Dad was struggling to get out of his chair and saying 'I hate myself'.  It was beyond awful and I suddenly felt like I was drowning..  I feel as a family we have been abandoned by the NHS and there doesn't seem to be any other help available apart from getting carers in which would upset my Mum and besides we are not quite there yet.  When my Dad loses his mobility altogether of course it will be a different story.  However they don't want to 'squander' our inheritance on such things and are determined to stick it out.  I am not sure how realistic this is but don't want to cause upset.  I know if they both have to go into a home they will be separated because of their very different needs and the consequences of that are unthinkable.

I know there's probably nothing further that I can do apart from continue to try and support them, I've Googled until my head was about to explode and phoned up pretty much every organisation going and have hit the wall now. It's so frustrating and I feel totally useless because I can't help them.  I guess I just need somewhere to rant where people will understand!  AAAARRGGHH!!!!



Hello Suzanna, we must between us be able to do better than aaarrrgh! for you and your parents. It's probably a wider question than PD - but I'd start with the helpline here:0808 800 0303. Then your local Citizen's Advice, Age Concern, and family carers. But it sounds as though you've tried all of those?

Thre must be help available, I'll keep on thinking.

Best wishes t oyou all



Thank you for replying Semele.  I am in regular contact with Age UK and they have been FANTASTIC in sending someone round to help us with forms for LPA and Attendance Allowance.  I get Carer's Allowance and will be applying for Income Support soon as I've had to give up my part time job.  Obviously then I can apply for Council Tax Support, Mortgage Tax Relief etc but it doesn't help with the practical side and, aside from a time machine, I don't really know what would actually help with that.


I just feel like it's all swallowing me up.


But I have found there are amazing support people out there, official and not.  


Thanks again for replying x


Hello Suzanna. What a story!  My heart goes out to you and your parents. PUK say that they ".....are here for everyone affected by Parkinson's and all types of parkinsonism" so I would echo Semele and urge you to ring the helpline (shown at the top of this page).  You could also look under the Support section to find details of your local PUK Support Worker.   I cared for my late husband who had Parkinson's and Lewy Bodies dementia and found our support worker invaluable in accessing the help available.  They know what help is out there and who to go to. 

And you can always come on here and vent your feelings!

love and hugs  W. 


Hi Suzanna,

I am so sorry that you and your parents are having such an awful time.  Have you tried NHS Continuing Care.  Its not well publicised and the assessment period can be testing.  However I understand that you can be funded for things like specialist therapy in the home.  My friend tells me that they assessed her parents multiple needs and put in a programme of support including a break for her as the care provider.

Hope you get the help you all need.



Hi everyone.

It’s been nearly 4 years since I made my original post. Here is an update and a request for advice is possible.

Mum, who had advanced Vascular Dementia, died last February. Despite overwhelming odds I managed to keep her at home where she felt as safe as her condition would allow. She had a fall which brought on a stroke, Sepsis and Pneumonia, all within a few days. The local hospice were amazing and helped me to give her the most peaceful end possible. She died in her own bed with me holding her hand a month before their 52nd wedding anniversary.

Dad will be 92 in June and his Vascular Parkinsonism has progressed. He is housebound and uses a frame to get around the bungalow. He is fiercely independent and insists on doing as much for himself as possible. The ‘freezing’ is now terrible and it takes him 20 minutes to get from the bedroom to the living room, but he does it.

His memory did improve a little for a while (I think the stress of the ‘new normal’ made things worse) but lately he has had problems finding words and remembering what is happening from day to day. We had kind of accepted that as part of his being 91 but there has been a disturbing development of late.

He seems to be hallucinating, only twice so far (well, as far as I know). The hallucinations seem to start off as dreams but they carry on when he wakes up, gets out of bed etc. The other morning, about 8am, he was convinced there was a dismembered hand in his bed grabbing his fingers. He got up and went to the kitchen, got a plastic bag out of the drawer and went back to trap the hand in the bag. He stripped the bed looking for it. He was still disturbed when I arrived an hour later. Then a few days later my brother arrived to find a zip-up cardi on the floor inside the front door. Dad told him he had put his hand in his pocket and there was a small furless creature in there. He’d tried to catch it but couldn’t, so he took the cardi into the lobby and stamped on it to kill the creature. He realised this must have been a ‘dream’ but wasn’t sure what time it had occurred. He must be awake at some stage as he takes so long to get around and has to use his frame to do so.

I have Googled like crazy but I can only find instances of hallucinations connected with PD and Dad has VP, which has no information regarding hallucinations. I have read about Parkinson’s Disease Dementia and this seems to fit what is happening to Dad (Lewy Bodies seems to happen much earlier in the disease) but I wondered if anyone here has experience of things like this with any form of Parkinson’s and if medication has helped?

I plan to contact the GP tomorrow but they seem to have checked out as far as Dad is concerned (I’m pretty sure they didn’t expect him to live this long). I am aware how dangerous this new development could be but if he goes into a home I honestly think he will just give up and be dead in a month.

Once again… AAAAARRRGGHH!!!


Hi, is your dad on any medication for his VP? A couple of years my husband suffered horrific hallucinations and delusions and these were caused by his meds. He was admitted to hospital while they changed all his meds and now he rarely has any sort of hallucination. However, because its a fine balancing act, his mobility is greatly reduced but we consider that to be the lesser of the two evils. Hubby was diagnosed just before his 47th birthday and it will be 20 years in March since diagnosis. He also is in the early stages of Parkinsons Dementia. I sympathise with your frustration with your GP. We have a marvelous PD consultant and nurse so are very lucky. Go down to the GP and don’t move until you have a referral to the Parkinsons Clinic in your area. His age shouldn’t have anything to do with it. I’ll be thinking of you and your dad. Take care x


We used to see the Chief Neurologist once a year (yeah, that often!). It was clear she didn’t have any interest in helping Dad either, it’s not helped that he has Vascular Parkinsonism as opposed to Parkinson’s itself, so doesn’t respond to Parkinson’s medication, although he is on Co-Careldopa (I suspect this was more to appease us that she was doing ‘something’ than any actual belief that it would help. We don’t qualify for a Parkinson’s nurse either for the same reason - he doesn’t have actual Parkinson’s.

Anyway this evening I did some stern questioning and it turns out that he has missed ‘a few’ of his Mirtazapine lately. This is a strong contender for the cause of hallucinations and the least problematic one - if he takes the wretched things properly from now on!

All I can do is monitor things and ‘just keep swimming’ I guess.


Hi @Suzanna1969,

I’m sorry to hear that your husband has been experiencing hallucinations. Unfortunately, hallucinations and delusions are a common side effect to the medications used to manage Parkinson’s, there’s more information here - https://www.parkinsons.org.uk/information-and-support/hallucinations-and-delusions-side-effect

Given that your husband has vascular Parkinson’s, he may also be experiencing something very similar, however, I think you may find it useful to speak to one of our advisers via our helpline service. They can offer you a lot more help and support on this and can put you in touch with a Parkinson’s nurse.

Do give them a call on 0808 800 0303 from Monday-Friday: 9am-7pm, Saturday: 10am-2pm, or you can email [email protected].

I hope this helps!

Best wishes,