I apologise. This might be a long post but I need to vent and I’m hoping this is a safe space where other family members and/or carers might understand, and perhaps fellow people with Parkinson’s can offer insight.
We should be on holiday at the moment, for a week, but came home after just 3 nights because my husband was struggling with long periods of violent tremors, which seemed to come on just after he took his Co-Careldopa tablets and last almost to the next one. It was awful for him to experience and for me to helplessly watch. We thought it might be related to his change in medication: On the advice of his Neurology Consultant, he has, since January, had to gradually reduce his Ropinirole from 12mg to 8mg and then replace the Entacapone he was taking (alongside 4 of his 5 Co-Careldopa doses) with one nightly dose of Opicapone. Then a further 2mg reduction of the Ropinirole. This has been a struggle, I suspect as much psychologically as physiologically. This last week, he has also been asked to wear a symptom tracking device (PKG?) which may, or may not be related to the new drug but which he hated wearing (he refuses to wear a watch!) and probably was a constant, unwanted reminder of his PD.
Anyway, 3 days into our much needed, long awaited holiday, we abandoned ship and came home because I could tell he was only going to get worse if we didn’t. Fortunately, I’d made the decision to restrict any holidays to within an hours drive from home (after a nightmare journey to Yorkshire, last summer, but that’s another story!) so there we were: dinner finished cooking, eaten, washed up, packed up, cottage tidied (all by me as he just sat there) and home within 3 hours.
I’ve been feeling disappointed, frustrated and angry but also worried about the future - not least a fortnight holiday in July/August that I don’t know whether to cancel before the balance is payable (we have no cancellation insurance due to PD!) I’ve tried so hard not to share this with him because I don’t want to add guilt to the mix but he’s so much less shaky now we’re home (so obviously not drug related!) that it is difficult to maintain any sympathy, especially when he’s just told me that, as soon as he entered the cottage, he realised he wasn’t going to cope.
I’m afraid I lost my temper. Told him if he’d only shared that thought we might have been able to work through it - and I certainly wouldn’t have spent so long worrying that the new drug was doing more harm than good!
I understand that anxiety is a terrible thing and I feel for anyone who suffers with it but it is so hard to live with too. I feel like my whole life revolves around his PD. I retired early, at 60, from a job I (mostly) loved because he was home alone, no longer able to drive and was struggling to accept me working. I retired right into the middle of Lockdown but, when those restrictions lifted, our lives didn’t change because he rarely wants to go anywhere.
When we do go out - to the same, few places - it is always quite stressful because he can’t walk more than 100 yards or so without needing to sit down but blankly refuses to use the wheelchair we bought. I was so desperate for a change of scene!
In February, I was supposed to visit our daughter and family, in Norwich. It is a 3+ hour train journey that he no longer feels able to do (I’ve tried suggesting we book assistance, but he won’t) so the last few visits I have gone by myself (a pleasant respite, if I’m honest). This time, however, he had a bit of a meltdown at the mere thought of me going and being home on his own. He is still physically capable of looking after himself… at the moment… or I wouldn’t consider leaving him and I always make sure there are a selection of homemade meals in the freezer for him but, due to the medication change, I had some sympathy and cancelled my trip.
All this is to say; I can’t have a break without him and now, it seems, we can’t have a break together. I feel so trapped. Like my entire life revolves around his PD. Having been diagnosed with breast cancer, 12 years ago, and got through it, it feels such a waste to be not making the most of my life.
I’ve recently joined the U3a and have started going to some group meetings and making friends, which helps combat the sense of isolation and I swim once a week, but even these escapes sometimes have to be cancelled because he has an appointment or doesn’t seem well enough for me to leave him.
He says he’s grateful for all that I do, and I appreciate that, but he doesn’t understand how much PD affects my life too and I can’t complain to him about it as it’s not his fault and will only feel more guilty. I hate PD!! I’ve had 40 years living with his anxiety (although, recently, he announced he’s “never had mental health issues” despite being on antidepressants ever since I met him!!) and there have been times when I have wanted to leave but I committed to “in sickness and in health”, but lately I have found myself day dreaming about what life could be like… perhaps a flat near the sea - and my granddaughter - in Norfolk…?
Sorry, I did say it would be a long one. I feel better for getting that off my (lopsided) chest! Thank you.
) with no nearby street parking except 30 mins or residents only. When I had to pick up his new drug prescription (goodness knows why Consultant couldn’t send it, electronically to our chemist!!), I parked half a mile away and walked. When I take him for appointments, I have to drop him off at the door and drive around, for up to half an hour, until someone vacates a space, hoping I can get to him before he’s called. Stressful.
) improve.
