First dx in 2013 almost 10 yrs on

I never thought this day would ever come.
My oh has done so well over the years managing this awful awful disease, it has been an extremely long and difficult road.
He is currently in hospital (3 weeks now) dx with covid a week ago so on high-risk ward now.
I also have covid and cant visit and there’s no body else.

He became dramatically worse over a period of a few weeks, cant stand, cant walk, no appetite, has weight loss, no voice, visual impairments, hallucinating worse than ever, completely delusional going into fixed states through the windows I had to keep shutting all the blinds in order to shake him out of that continual glared stare into something I can’t see.
Pain in his lower back, hips, thighs the list is endless.

They seem to want to blame it all on a uti infection? he has become incontinent over the past few months with his waterworks just can’t hold it and can’t get up to get there in time.
He was chronically constipated when he was admitted into hospital he was in agony.
I feel so guilty not knowing about the constipation he didnt discuss it.
it seems he has ever symptom under the Sun.

As poorly as he still is they talk about him being discharged when he gets a clear covid test.
I won’t be able to manage him at home on my own anymore, but I will do my damndest to do everything I possibly can for him.

I am thinking of applying for NHS Continuing care, I don’t want him in a home, I promised him that over the years.
This infection can’t be the cause of everything, he’s on so many PD meds, the highest dose of Rivastigmine, and talking about starting him on a drug for paranoia called Seroquel?
This isn’t going away now, some of his symptoms may settle but I feel like this is the beginning of the end.
I’m thinking of writing to his Neuro and his GP, as you can’t get any appointments with anyone. Hoping that they will understand the complex needs that are required and fight his corner for him.
sorry about long post just feel so alone at this time xxx

When PD people get an infection or ill from something else they change quite dramatically the PD gets worse but it can stabilise again once the infection or whatever other illness they have is better, I have seen this with my Husband over the years. My Husband fell some months ago and was Hospitalised, he was discharged with delirium and was hallucinating, confused, climbing in/out of bed, shouting alot and he lost his mobility, his mobility hasn’t returned and in 5 months we’ve seen a Physio 3 times, he remains confused to a degree and shouts for me quite alot as if he’s anxious if I’m out of his sight, he is now doubly incontinent and wasn’t prior to the fall. Constipation in PD people is quite an issue becomes the medication cannot be absorbed properly, also UTI’s can knock people off their feet and cause confusion. You mention NHS Continuing Care, you could ask for the assessment while he is in Hospital it’s usually a joint assessment between health and social care, it is based on numerous domains that you have to score quite high on to be awarded it, I regularly look at it for my Husband and know he wouldn’t be eligible currently, I used to be involved with assessing for it when I was working as a Social Worker in a Hospice. Regarding appointments I agree it is so difficult to get an appointment with even a GP, it is hard caring for someone with PD I care for my husband 24/7 alone as we have no children and I don’t want carers involved but its seriously hard work. I do hope your husband improves.


So good of you to respond and share your experience.
I’m not alone, we also have no children so no one to turn to for help or support.
I don’t know what age group you are in my husband is 75 and I am 64 and it wasn’t for the age difference and me being a tad younger I wouldn’t be able to cope as well as I have done over the past 10 years.
How on earth can people like us be left to deal with something so difficult all on our own?

Could I ask if your husband has paranoia ? I find it so hard to deal with, using a jar to try and collect spiders and insects on the stairs.
Water coming up through the floor, he gets transfixed at a window his eyes glazed over there’s something there he’s glued to, I have to force him out of it, I spend most of the day in darkness as I have to shut the blinds to stop him going into this strange fix.

I could go on and on the affects of his PD are mega and massively challenging.
I don’t think I have a choice other than apply for continuing health care, but if it’s so difficult to qualify for this, where else do we turn?

I hope your husband is doing ok at the moment and I wish you both a good day hugs and well wishes always x

Hi Holly,
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Hi again,
No my husband hasn’t had paranoia but delirium and his symptoms involved a plane crash, train crash etc one day I came home and he wouldn’t let the dog go he was holding her tight he said she will get caught up in the explosion from the plane crash, luckily these have passed but he has declined cognitively and now thinks he is still working when he actually retired 10 years ago, he’s 76 and I’m 65. You sound as if you will need carers involved when he is discharged home and the Hospital should be having these discussions with you now if they are talking about discharge, tell them you can no longer manage. No harm in asking for the Continuing Care assessment to be done if he doesn’t meet the criteria he might in the near future, it can be repeated. There seems little in the way of help these days. My OH was diagnosed 9 years ago but he’d had symptoms for some time before then, until the last couple of years he wasn’t too bad but as its progressed its become quite a challenge, he has severe low blood pressure and faints regularly, I know what to do to raise it but he’s had some nasty falls due to it as there is no warning and I’ve had some real struggles getting him off the floor or back to bed when its happened.
Hoping you see some improvements in your OH. Best Wishes.

Thank you I will do just that xxx