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. >