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Change is the Only Thing in Life You Can Count On

Unlike most of the country, Southeast Wisconsin has enjoyed above average temperatures for the month of November. Even the typical gray skies and rainy weather have gone on a hiatus . . . until tonight. Believe it or not, we’re expecting four to eight inches of snow.

I bring this up because when the weather is lovely, I figure it is my responsible to take advantage of it, so I’ve been bumming around instead of plunking my butt in my chair to write. As you might have noticed, I haven’t posted any “words of wisdom” in over a week.

One thing I want to share with you is Ken hasn’t fallen in almost two weeks! It’s an occurrence to celebrate because he was falling at least twice a week. What has caused the change? I’m happy to tell you all it took was a couple of changes.

Because he typically fell during the night, I made a house rule that he was not allowed in the bathroom whenever I was sleeping. To accommodate his late-night bathroom urges, I put a commode in the bedroom. He fought me tooth and nail saying he wasn’t “comfortable” to use it. I told him he’d better get comfortable because I was tired of the firemen seeing me in my jammies in the middle of the night. After a couple of weeks, he admitted the commode was a good idea.

The other change was to have a physical therapist come into the house twice a week. She has shown him better transferring methods from his wheelchair to the bed, recliner, toilet, and car. It’s Ken’s natural tendency to make every thing as difficult as possible; I tease him he chooses the most difficult way because he’s a born engineer. It’s innate.

For over a year, the doctor has insisted Ken do thirty minutes of exercise a day. I’ve worked around him with this therapist because she has given him exercises he can do while sitting. . . of course, he puts them off. Again I need to lay down the law to get him to help himself.

I don’t know whether his reluctance to face something new is due to his fear of failure or just procrastination. Perhaps it’s a little of both. Being the exact opposite of him, I find his willingness to succumb to these little challenges frustrating.

I’ve resigned myself to the fact if I wait long enough, he’ll do what is expected. I really hate having to be a task manager — when I supervised people in corporate I usually had self-starters. I had no tolerance for people I had to micro-manage.

I also realize, though, things are different with Ken. I can’t fire him. He says I can’t lay him off either.  🙂

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Queen For a Day

Once a year the Aging and Disability Resource Center in our town invites care givers to a special luncheon. The theme this year was a “Virtual Cruise.” Having enjoyed at least ten cruises in my lifetime, I wondered how they would carry this off.

The theme was set at the front door when we all were greeted with “Aloha” and a colorful silk lei was put around our necks. Ken was greeted in much the same way, but he would spend his day being cared for by professionals in a different room from where I would spend the outing.

Care givers were ushered down a long hallway where Hawaiian music wafted through a grand ballroom. Large round tables covered in white linen each had a silk star lily centerpiece. We were invited to sip a drink from tall, tropical glasses with paper umbrellas; of course, the rum was left out of the fruity drinks. It was morning, after all; entirely too early for rum. 🙂

From ten until two o’clock about fifty care givers were able to relax and laugh. We also were encouraged to learn about some of the area services available once the care giving mantel gets too heavy. The organizers had a clever way to get us to visit all of the vendors present; we were given a “passport” that needed to be stamped by each vendor as we completed our “worldwide tour.” The passports were then collected for door prize drawings at the end of the day.

Unfortunately I didn’t win a thing, but I did have a nice day out of the house. Our group enjoyed entertainment including teenage dancers, a ventriloquist, and a massage therapist, who gave five-minute chair massages to anyone who wanted one. When it was my turn, I was flabbergasted he found very sore tight muscles on both sides in my shoulder area. I guess I carry more tension than I ever dreamed.

One of the best things about the day was the view. I sat and stared at the beautiful fall color outside the floor to ceiling windows. For some reason, colorful trees just do it for me, you know? The natural beauty reminded me I’m a small cog in a very big machine. When the same humdrum experiences go on day after day, I forget that.

During the ride home, Ken shared he had a good time, too. Two other people he knew from “Harmony Club” — the respite service he attends twice a month — were there. But I never worry about Ken in a social gathering; he’s so congenial he can make friends with anyone.

If you’re a care giver, I encourage you to seek out help from the local Aging and Disability Center in your area.  The hardest thing you’ll do is make phone call. People working in such an organization are caring, empathetic, and helpful. They also help keep things in perspective. They let you know your anger, frustration, and searching for answers are part of the package when you’re a caregiver. They know how to maneuver through the state obstacles and restriction. I’ve found answers to the problems Ken and I encounter as we travel through this MS journey.

Who knows, maybe you’ll have the pleasure of being “Queen for a day” like I did yesterday.