Tag Archive | The MS Journey

It Happens Faster Than You Think

Hi Everybody! I hope those of you who followed me in the past are still willing to do so. I’ve been away to dedicate my time to writing three books. One is the second edition of my first attempt at a novel. During the past several years and six other books, I’ve learned a thing or two. I still like the story, but the writing—not so much. The second book is a sequel to “Finding Gessler.” And the third is the more difficult tale to tell—“Barbie and Ken, A love Story.” This book chronicles our journey through Multiple Sclerosis. So you get it—I’ve been busy.

But I had to write about an important subject—aging. This summer I will have a milestone birthday. Yes, I will turn 65. I think this birthday is tougher than turning any other milestone birthday like 18, 21, 30, 40, 50, 60 etc. Inside, I feel no different than I ever did, but for the first time outside, there are tell-tale signs—gray hair, glasses, and moving a bit slower. What I didn’t count on was the government and different professionals reminding me almost every day  I’m getting close to the big 65.

It started when my Medicare card arrived a month ago. Following that memorable event was a plethora of advertisements for Medicare supplement plans. Next came the phone calls from every insurance agency that sells the old fogy plans. Okay, I’m tough. I can take it. But when my family doctor came into the exam room saying, “So, Barbara, how’s the hip?” Weeks later, the optometrist said, “You’re eyes are in good health, but I do see the start of cataracts.”

It’s bad enough to look at my birth certificate and KNOW I’m getting older, but to have all these outside influences reinforcing the fact, well, it is a bit overwhelming. And considering my birthday is not until the end of July, what’s the rush?

For all of you who are younger than I am, don’t hurry to grow up. It happens sooner than you think. Just saying’.

A Month of Good Stuff

If you’ve been reading my blog for awhile, you know I often talk about the trials and frustrations of care-giving. It’s been six years since I took this position for my husband Ken who suffers from the nasty disease of MS.

Today, I’d like to talk about some successes we’ve experienced during the past month.  In fact, we’re celebrating because Ken hasn’t fallen in a month! How did this happen? Well, it was three simple changes.

He usually fell during the overnight hours trying to get to the bathroom. As you might imagine, his fall was a shock to both of us. So, I brought the mountain to Muhammad and put a portable commode beside the bed. Now all he has to do it slip out of bed, go to the bathroom, and then slip back into bed.

I also brought in a physical therapist to teach him safe ways to transfer from his wheelchair into his recliner, into bed, and into the bathroom. They also gave him a few exercises he can do sitting to help his balance issues.

The final change was adding a couple of ibuprofen to his nightly meal of pills. Because his legs and arms jerk a lot, falling asleep some nights can be challenging. The over the counter drug helps him relax and get the sleep he needs. He hasn’t experienced a day of overwhelming fatigue since.

We’re so happy such minor changes have made such a big impact on his daily life. It’s nice to see him have more good days than bad ones. Hopefully this will continue for several months before MS decides to give us a different challenge.

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.  🙂

A Surprising Train “Trip”

The weatherman said to enjoy the warm temps today because the REAL November is tired of waiting. He will make his cold, rainy appearance tomorrow. Luckily, Ken and I will venture out today and head to Milwaukee. Our destination is a doctor’s appointment. And here you thought we might be doing something fun, huh?

Well, with his declining abilities to do travel of any kind, we make fun out of the most mundane things we must do–like going to the doctor, dentist, or just out for lunch at a hamburger joint. We do miss traveling, though, so we fulfill that need by watching pieces on PBS or the Travel Channel to learn about places neither of us will probably never visit.

Last night we learned about the cities of Poland–Warsaw, Poznan, Lodz, and Krakow. We traveled by train from city to city–which in itself would have been a wonderful thing to do. At each stop we were amazed at how beautiful the buildings and city squares were.

Each city had its own charm even though the underpinnings of the many conquers the Polish have endured by Austrians, Nazis, and Russians showed in its architecture. Warsaw was razed by the Nazis during World War II, but today there is no evidence of the war. After WWII was over, ordinary citizens scavenged through the rubble to find unbroken bricks and other salvageable building materials to begin again. And did they build modern structures of the day? No. They replaced the old stylish buildings with new buildings closely matching the old ones. I suppose it was their way of washing away the humiliation of being conquered by the outside forces. Impressive.

Lodz is the second largest Polish city, and has its own unique atmosphere. It is likened to Manchester, England due to its size and the fame of the textile industry which developed there in the 19th century. Now it features fine Art Nouveau architecture and the most famous Polish film school. They even incorporated a Hollywood-type star walk. Roman Polanski was one name I recognized.

Thank goodness the documentary did not cover the ugliness of the numerous concentration camps the Nazis built. Instead we rode along on one of the last surviving steam engine trains in the world which still makes regular commuter runs.

Few people probably don’t give Poland a second thought when they think of vacationing, but after seeing the sights via the television, I know I wouldn’t turn down an opportunity to explore the country. But I certainly would go in the summer, even though the trains criss-crossing the land are heated to protect passengers from thirty degrees below zero temps.

Have you ever been surprised about a place like I was? If so, tell me about it.

When Disappointment Darkens Your Door

unhappy faceHow do you accept disappointments? Do you have a tantrum like a two year old? Do you yell at someone? Or do you swallow the hurt and deal with it another day?

Let’s face it. Life usually doesn’t fulfill our every expectation. In fact, I have come to the conclusion “life” finds way to stand in the way of most things these days.

Today Ken was supposed to go to his harmony club, and I had plans to see a friend. I haven’t seen her in a couple of weeks, so I looked forward to reconnecting with her. BUT — When I heard Ken hit the bedroom floor, I instantly knew my plans for the day were dashed. I jumped up to see if he was hurt, and God willing he wasn’t. I swear that man has a legion of guardian angels who lay on the floor and break his falls. He hardly ever gets hurt. For me — not so much. About three months ago I leaned over in my office chair to pick up a paper from the floor — and WHAM! The chair slid out from underneath me, and I landed on my tail. I struggled to get up, and for at least a week, I felt like a kid who got hit with a wooden paddle. Anyway, I digress . . . Back to disappointment.

As soon as I expressed my disappointment — like a three year old — not a two year old — I am making some progress on this journey, I hated myself. Here the poor guy is struggling to pull himself up to stand and get into his wheelchair, and I’m cranking about my plans changing. What a bitch, right?

Well, yes. I’m a bitch –sometimes. But I never understood why a crabby women is named after a female dog. There I go again  . . . digressing.

I think it is important to express anger in a controlled way. Just like every process, care giving has it’s frustrations and disappointments –not to mention fear of what else is down the road. I know where I am with Ken is pretty stable for now, but the unknown future scares the life out of me. People say I shouldn’t borrow trouble. And they’re right. I shouldn’t think about what MIGHT happen and I should deal with the challenges as they appear. But that’s easier said than done.

When I’ve taken the appropriate amount of time to digest this disappointment, I will be my old self again. I’ll wear a smile and when asked how I am, I’ll say, “I’m fine.” After all, most people expect that response. They certainly don’t want a blow by blow of a disappointment that only changed my plans.

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.

A Day Alone

Yesterday I spent the late morning and early afternoon alone. Ken when to his “Harmony Club,”which is a a a supervised gathering of elderly and handicapped people. The participants exercise, play games, make crafts, and eat lunch together. They have a chance to form friendships, and they end each session by playing Bingo and winning prizes. Ken loves going because he can talk to somebody other than me, plus he enjoys being with older people. Seeing I’m ten years older than he is explains our happy marriage. 🙂

The four or five hours we have apart gives me a chance to have a little fun with my friends. Usually I meet somebody for lunch and then tie up the day with a trip to some shop to nose around for a little while. I love going downtown because there are a lot of restaurants to chose from and plenty of specialty shops where hidden treasure waits for someone to discover it.

But yesterday I chose to just be alone. I hunted new winter tops at the thrift store. (Since I discovered the place, I haven’t darkened the door of any retail shop.) Then I went home, finished my blog posting for the day, and ate lunch with Ernie sitting on my lap. (He watched my food as I enjoyed my soap opera without somebody teasing me for watching such drivel.) I didn’t talk for four hours! Believe me, that’s a record!

When I picked up Ken at 3:30 p.m., we  both looked forward to being together again. With stuffed peppers and acorn squash waiting in the oven, we had a pleasant dinner followed by a night of television. In the past, days like this would have bored me to death, but now the mundane times are cherished. Call it old age, but normalcy in our world is just fine. Achieving contentment in one’s life takes some time, and I’m glad I arrived at that place when a day spent alone becomes time well spent.

A happy life is one of balance and contentment, no matter how old or young, rich or poor a person is. I’ll warn you though. Achieving such a life is hard work. Just try it. I dare you.