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Date: Wed, 10 Feb 1999 10:34:03 -0500 From: alan richards <[log in to unmask] Subject: Canadian Parkinson Post To: [log in to unmask] Here's the article Don McKinley wanted listed. It appeared in the Parkinson Post, a new quarterly magazine for Parkinsonians, published by Maclean-Hunter: (The headline was something like, Silk Pyjamas Can Be A Problem) I have been asked to write about what it's like to be a caregiver for a spouse with Parkinsons. I guess I'm qualified, because my wife, Judith, was diagnosed in 1993 and, like everyone else with PD, had it for some time before the diagnosis. However, I know my experience has been unique. So has every other caregiver's. It is said that Parkinsons is a 'designer disease' and no two people have the same symptoms or problems. That's true also for the caregivers, partly because of the differences between patients, but also because of personalities and habits and many other factors. Some couples have gone through Hell in their relationships since diagnosis. Others have been able to carry on with their normal lives, making minor adjustments to accommodate changes as they appear. Judi and I have been somewhere in the middle. There's a Parkinson Partners support group here in London, Ont., which meets in the afternoon once a month. Besides giving us an opportunity to compare notes with other caregivers, it gives us a break from the chores of caring for the partners with PD. But best of all, that's where I learned some of the things I know now. For instance: * It's not unusual for a Parkinsonian's moods to change without notice. * It's not a good idea to pepper them with questions when they're 'off.' * Satin sheets make it easier for a Parkinsonian to turn over in bed, but don't wear silk pyjamas at the same time or you might slide right out of bed. (It happened!) * It's very rewarding to be able to help your loved one realize they can do more things than they can't do. Some of these things I was already learning by trial and error, but having other partners talk about similar situations made me realize others had been there, done that, and they either had suggestions or sympathy for me. Much of what a care partner must learn is basically common sense. For instance, if your partner has trouble moving, don't push (I learned that in a supermarket checkout line when I gently nudged my wife and she almost fell into the person ahead of her -- boy, did I learn fast!). So far the most difficult thing I've had to do as a caregiver is help Judith work through the stages of acceptance of her diagnosis. It was traumatic for her, as it must be for everyone who has to change a way of life, give up a career, and realize they will have to depend on others for much more than they ever did before. But reassuring her that I'm in this for the long haul has helped, I think. And so has stepping back while she takes longer than she used to to do many things. Everything I've read about being a caregiver emphasizes that we need breaks too. We need to take care of our own health to be able to help our partners. All of this is true, and sometimes it takes some work to achieve, but who ever said work was a bad thing? Unfortunately it took the help of a psychiatrist to make me realize that I shouldn't get upset and frustrated when my favourite Parkie seems to shut me out of her thoughts. With the changing moods and on/off periods she goes through, I have learned to wait a while until the 'real' Judith returns. I know many Parkinsonians with physical problems, such as tremor and slow gait. I know their partners have different problems than I do, particularly with such things as helping with eating, or sitting up in bed, or lifting them up when they fall. Judith can do most of the things she always did. They just take longer. All I have to do as a caregiver here is help with the housework, provide a shoulder to cry on sometimes, and hold the car door for her. I did all of these things before PD, to some degree, so life hasn't changed much. There's just more of it now. For me, the best thing about my new job is that I can be helpful to someone who has helped me for many years. I can show my appreciation in tangible ways. I can be a care partner, not just a care-giver or care-taker. I kind of like it like this.