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.
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.
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 - 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.
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.
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.
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.
Well here I am again, we finally made our move but that didn’t quite work out as on the day we finally moved I was rushed to hospital with pneumonia. I was there for 5 weeks which left hubby alone and he ended up in same hospital due to a fall.
I’ve been home since end of May and life is difficult as husband has become more and more difficult. I can’t physically do much as still in recovery and have no strength. He is so scattered brained I don’t know where to begin. But for example he tried to make me tea in a glass today. Then sat on a dining chair obscuring exit from open plan kitchen, I asked him to move he put on his angry voice and said ‘the problem here is you’ve taken overdose of drugs’ I said who has, he said you. I said I don’t take any drugs, and told him he’s confused, he insists its me that is confused. This behaviour more and more frequent. I know we can’t go on like this, I have told him so over last few weeks but I can’t see way forward. If he goes onto care - I don’t know what I will do as I cannot afford to live here alone, and really I think he needs to as I can’t help him when he freezes and he becoming more aggressive. I called ambulance twice on Sunday as he froze for long periods. But after a while he manages to move, took him about an hour to get to bathroom and bedroom using a walker. Duty Dr calls and says he is alright. I called GP last week as he said he was not coping, she said she’d contact his Nurse, the one who never helps! He takes to his bed best part of day, he is there now. He has carers but not really helpful as rarely here when needed, needs 24 hour care really. I cannot keep home nice as he leaves stuff all over the place and keeps moving things so I cannot find them, then gets angry when I ask him where he’s put them.
It sounds from your description like he may have what is called Parkinsons disease dementia or PDD, which is not uncommon with someone who has had Parkinsons for awhile. Here is a link to an article that suggests some medications. You may want to speak with your GP about them, they might help: “medications are called cholinesterase inhibitors, and they can help if a person with PDD is having memory problems. Some examples of these medicines are donepezil, rivastigmine and galantamine. Sleep problems may be managed by sleep medications such as melatonin.”
Thanks for link, it seems mainly concerned with sleep disorders, and although he suffers with that other issues are more concerning. Sudden outbursts of extreme rage are getting more frequent. Today I saw one of his pills on the floor near my chair. I cannot bend with my current condition, can’t even stand more than 2 minutes I tried telling him about pill thinking he may think he had taken it. He couldn’t hear me so asked him to come to me to show him. He went absolutely crazy screaming, waving arms and said he could kill me. I said I was trying to be helpful but he was screaming saying that I couldn’t treat people like that. I just shut up until he stopped. I’m seriously thinking long term care is only option. Luckily he is uutenot bigger than me as he came dangerously close using his hands to demonstrate strangling effect.
I have sent you a private message regarding the concerns about your husband’s behaviour. Please respond to my message as soon as possible - we’d really like to offer you further support on this.
- very hyper, must be meds affecting him.
