Tearing my hair out

I’ve written before about extreme difficulties with my PK husband. After 5 spells in hospital last year due to his condition, they eventually modified his meds and life was a little easier. We had to sell our home 2 years ago due to enormous gambling debts accrued by him when on mind altering meds. We now live in private rented house. I’ve managed to get us accepted into McCarthy and Stone apartment. We move in a month and I have to sort out all admin change of address etc. His physical condition worsened again over last couple of weeks and even more so this week. I tried to get help but his nurse works remotely and can only leave message on her office no. No reply as yet. I called the helpline but they can only ask one of their health team to call me back at a later date due to being so busy. His GPS surgery are not really interested I’ve tried calling them in the past.

Last 2 days he can hardly function physically, his freezing practically 24/7 to the point I’m wondering how I will get him from here to car for move. Now, his mental attitude is again becoming difficult and he gets angry so quickly. For example I’ve been talking to Water Board about closing bill. He wanted me to pass phone to him to speak to them. Now, they told me clearly we were up to date to Nov 2020. Closing bill is Nov to our move date. He started asking them about bill from our old address - we sold it in Oct 2018 - and asking when the water water meter was put in - apparently 2015 - we moved in July 2019! I cut him off saying that it has nothing to do with current bill. I got phone back and explained to the lady he was confused. After I hung up he got highly stressed saying he knows what he’s talking about and is angry with me for cutting him off. I tried to explain the bill was up to date in November, but he insisted it is related to old address. I told him to phone them again as he would not listen to me. I left him and came to my bedroom to get away. I initially phoned them to advise of our move, 2 days ago at which time he asked about bill for old house, he was told there was nothing outstanding, now back to same thing 2 days later…just one example of how difficult his cognition can be to live with…now with lockdown there is no way to get out for a break. Makes my headache. I’m not 100 per cent fit myself with diabetes and under kidney consultant. Waiting for ear surgery and my hearing is poor - with his speech severely impaired I can hardly understand him, he just tells to listen harder - that in itself is mentally grueling as I struggle day after day trying to understand what he is saying.

Sorry for moan and for sound self pitying but I need to vent! No one to share with, not through lack of family or friends but because they all.struggle in this difficult time and I don’t want to put my burden on them. His own family washed their hands of him back at time of selling our house. His apparently doting daughters from first marriage not contacted him since.


Hi @autumnlady, :wave:

Welcome back to the forum.

We’re very sorry to hear about the difficult time you are your face husband and currently facing. It sounds like you’ve tried every option to get your husband the medical attention he needs but to no avail which I can imagine been incredibly frustrating and disheartening. Unfortunately, due to Covid-19 many medical professional in the NHS have had to prioritise people that have been affected by the virus which means many people, including people with Parkinson’s have experienced delays with their GPs and Parkinson’s nurse.

As you’ve already spoken to our helpline, I will contact one of our helpline advisers to see if there’s anything else we can do to support you and your husband. Please be rest assured that you’re not moaning and I’m sure your comment has resonated with other members of the community and we’re here to give you as much support as well as safe space to speak openly and honestly about what you’re going through.

Best wishes,

Update… well, as often happens with PKD, we’ve gone to extreme other end. Today like he’s on speed, talking and muttering to himself, set to work on clearing old photos- good, yes, but not with dozens of photos over bedroom floor, I left him to it. Later he came into living room armed with sofa cleaners and van cleaner and, a torch looking for dust on insets of tv unit. I’ll give him a duster to clean it :slight_smile: - very hyper, must be meds affecting him.

Hi autumnlady - sounds as if you still have a little of your sense of humour still there which is good! I can imagine it is so frustrating at the change in your OH moods with one thing and another, it is a challenge as it is moving house without what you have to contend with. Please don’t apologise about how you feel as you are not on your own as other carers are somewhat at their its-end, which is natural to have some sort of reaction to any frustration. Hoping the move goes as smooth as ever and hope to hear from you when its all over - keep smiling, come back and report on it - Sheffy x

Hi there sounds like you’re battling daily/ constantly with Parkinson’s and the stress of moving, both horrid, put together no wonder pulling your hair out. Glad you at least have a bedroom to escape to. Can you take phone to your room to make necessary calls so he isn’t aware so doesn’t stress ?
Do you have support from a local council or county council carer’s group or forum. Check them out they maybe another source of support to you.
Wishing you a more peaceful time once your move is complete - a smile a day goes a long way xx

autumnlady don’t give up there is help out ther I know its hard but you must keep trying, if only for your health. Do you have a local "Parkinson’s " group near you if you have a computer you can find nearest by your post code. Don’t get bogged down with money matters ask you local council to help, our’s gave us a lot of help and advice and one of the council fianace came out to see us. Also give your local counciliour a ring, as they surposed to be there for you. Keep poasting we are all friends here and will give as much help as we can. I have PD but i must praise my nurse as she keeps me going.

Hi @autumnlady,

I agree with @mary1947, please don’t give up!

I would encourage you speak to one of our advisers via our helpline - they can arrange for a local adviser to get in touch with you and see if they can help your husband get the medical attention he needs e.g. by liaising with Parkinson’s nurse on their behalf, if you want that of course.

Please consider this and I hope your husband receives the support he needs.

Best wishes,

Very sorry for what you are going through.

In addition to my normal PD meds, what I use to help me cognitively and keep me clear headed with no brain fog is a combination of exercise, Ambroxol and Acetyl L Carnatine - they absolutely work for me, and they give my spouse confidence I will not become a burden to her. If you want to know more of my experience, just let me know.

I, for one, would like to know more of your experience. As I,too suffer from brain fog, confusion as well as many other things.

apologies for the delayed reply, will help however I can, what would you like to know?

Good to hear the meds are working for you, I am still at the stage of considering the meds and am reluctant to begin. Do you have an exercise regime? How long have you been on the meds and have you managed to stay on low doses?

yes, I do have a daily exercise regimen, my own daily stretching, free weights, push ups, etc. + more recently added LSVT big program, also 2-3x week my boxing bag, and of course walking daily with the correct form. yes, I have managed to stay on a low dose of C/L.

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