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.
>