Thank you too, @KK1, for replying. It is such a comfort to know there are people who “get it”. I feel rather ashamed at whingeing on here, where there are so many of you either actually suffering with this ******** disease or coping with far more serious caring roles.
My heart goes out to you, @Plus1, with elderly parents to worry about/care for as well. I sometimes realise that the horror of losing both parents too soon (Mum, suddenly, aged 51, of a heart attack. Dad, 20 years later, at 73 - heart condition brought on by alcoholism) does have its silver lining. I’ve also lost both sisters, at 49 and 60 respectively, with (different) cancers: All the more reason to want to LIVE myself now!!
Don’t get me wrong, I’m not a party animal or even particularly sociable myself: lockdown didn’t make that much difference to us, if I’m honest, although I do need some other human contact besides “him - almost permanently - indoors”. I missed that aspect of working but the U3a and Knit and Natter, when I can go to them, do go some way to replace it.
As to holidays: all we ever do is a self catering holiday in a cottage, static caravan or similar. Just somewhere different to be. He now rarely ventures further than 100yds from the accommodation but I have new places to explore and somewhere different to sit with my book and knitting. We used to camp - I suspect I loved it more than he did; he just enjoyed how cheap it was! - but, obviously that’s out of the question for him now. Most years, if possible, I’ve camped for 3 or 4 nights with my daughter: both of us enjoying escaping our responsibilities and spending time together. Such happy memories… but I don’t think we will be able to do it again because of childcare now GD is in school, not year-round nursery, as well as His PD.
Now that we’ve finished the meds adjustments and he seems to be more stable, I have decided, for the moment, not to cancel our fortnight, in a lakeside lodge, just half an hour away, in July/August. I’ve said he owes it to himself - and me! - to at least try. If necessary, we could use it like a beach hut and come home at night. Lol. I’d rather lose all the money having tried than forfeit half of it and wonder if we’d have been OK. Final payment isn’t due until May 5th so that plan might change.
Back in a bit… got to organise dinner: have to feed him regularly or all hell breaks loose with the the PD symptoms!!
Later:
Where was I? Oh yes, holidays. We’ve done a couple of coach trips, years ago, before PD. I loved them. It was worth having to be sociable at breakfast (argh!) and put up with a few too many people to have the driving done for me. Not to mention the catering! But He hated it. And now travel by coach is out of the question because of his need: frequent, sudden and urgent, to empty his bladder. (See also shorter car journeys!) One of the respite care suggestions was a coach holiday for both of us. Nope! Maybe one day, I’ll get to do some more coach trips…
Even before PD, holidays were a nightmare because he got so anxious beforehand. It’s been better since I’ve had to do all the driving. But he still blankly refuses to travel on Saturdays. Even though Fridays are busier!! Grrr!
In answer to your question, K, yes he does take antidepressants alongside his PD meds. He’s been on Amitriptyline since forever. Tried to come off it, by himself, years ago but felt so ill he is now psychologically dependent on it. It is no longer prescribed for anxiety but when Dr suggested changing it, he had an instant panic attack. Dr just increased dose. Then, later, added in Citalopram (?) Disaster!! Week of hideousness involving 2 ambulances (one of which ordered by Dr!) as it triggered tremor/panic/tremor/dangerously high heart rate cycle. Now he has Mirtazipine (spelling?) which works well (provided PD drugs are also working properly!) Definitely insist your GP listens to your neurologist’s advice. Quite frankly, I’m appalled he/she doesn’t!
When I last posted on here, we were celebrating a huge improvement after a 2mg increase in Ropinirole. However, the following day, Good Friday, was awful. I was close to phoning 111 because, when we tried the PD helpline, it was closed for B. Hol and I was terrified of having 4 days of tremory, panicky hell before we could access help. Fortunately, Saturday was better and he continued to - slowly (but he does everything slowly now ) improve.
Anyway, whilst at my wits end, I looked into getting carers allowance: started an online application but hit a brick wall when it said I couldn’t claim it unless he was receiving disability benefits. He isn’t and probably wouldn’t, even if he could be persuaded to apply, because he is receiving both a state pension and his local authority teacher’s pension. (My L. A. pension, however, is peanuts because I worked part-time for half my working life and retired 6 years early!)
I also found a website where I could refer myself for a carers assessment. I just wanted to do something proactive. Didn’t expect a response anytime soon, what with Easter and everything. Imagine my surprise when they rang me today! I have been referred to the Crest charity (Don’t know if it’s local or national) who will be in contact soon with more information. Apparently, I can claim up to 36 hours free support a year: someone who can come and sit with him so I can go out, which might, possibly, eventually, also enable a couple of days away. I won’t get too hopeful and/or excited though! It doesn’t matter that, now he’s much improved, we probably won’t need them: they’ll be there anytime I do need to access it. However, they can’t guarantee to come at a certain time unless booked in advance. Hmmm. Like taking cough meds before you start coughing?!
I am registered as a carer with GP surgery, although I did it again, online, on Friday to be sure. I got my Flu and Covid jabs when he had his, just by saying I was his carer. I don’t know if they checked or took my word for it. (I’m 64 this month and he will be 73, three days later.)
Daughter, her wife and their 5 year old are making the trek over, this weekend. They have decided to stay at a hotel half an hour away so that if it’s too much - for any of us - they can retreat. How things are now, we could probably have coped having them stay here, as usual, but, in the circumstances, it’s perhaps for the best.
Dear me! Apologies. I have tried your patience by writing a book! I really appreciate your replies and understanding.