Saturday, August 29, 2009

Vacation—Recharging Batteries

Colorado mountain pines whisper my name and beckon me to the quiet hush of a cool mountain morning. I always referred to vacation as a time to recharge my batteries, but it doesn’t have quite the same meaning it used to have.

I fell in love with the mountains on our first camping trip in 1983. To humor Jim, I agreed to camp at the Moraine Park campgrounds in Rocky Mountain National Park. Everyone expected us to be home after a few days because, to put it mildly, I never considered camping to be a relaxing experience. Sleeping on a hard surface in extreme Missouri heat, while slapping mosquitoes, was not my idea of fun.

Jim was an accomplished camper from a lifetime of outdoors adventures. He loved the Colorado mountains and each year we set aside a week to get away from everyday stress and recharge our spiritual batteries.

Jim spoiled me on our vacations. On cool Colorado mornings, he would rise before the sun peeked over the mountains, build a campfire, and brew coffee. Jim would open the van door, and hand me a cup of coffee while I huddled under the heavy quilts in bed.

“Breakfast is almost ready, Princess,” Jim would say. The scent of bacon frying on the Coleman camp stove promised a tasty, hearty meal. “Get up sleepy, head, we are in the mountains!” Joy would shine on Jim’s face as we planned the day—an aerial tramway ride, hiking, and an early evening drive through the park to watch deer and elk.

In retrospect, I can measure the progression of Jim’s dementia by our trips to Colorado. By 1997, camping was beyond Jim’s capabilities and although we still drove to our beloved mountains, we stayed in a hotel. Then, the trips ended as Jim became more confused and eventually entered long-term care.

After Jim’s death in 2005, I made a bittersweet return to the mountains. Long’s Peak looked the same, but I noticed other changes. We used to walk around the Beaver Pond to watch ducks and fish in the clear water below. Now, a small trickle moves past a truncated ramp near the reclaimed meadow. A drive up the Big Thompson doesn’t seem as great without browsing the Glen Comfort store filled with exquisite Native American pottery and storytellers.

Now, instead of camping at Moraine Park, I find a hotel with high speed Internet. The batteries I recharge are in my Dell netbook, camera, and cell phone. Instead of getting away from it all, I take it all with me.

Maybe it’s my age, but I find some of the changes to be good. I can idealize past vacations through selective memory, but a lot is to be said for having a private bathroom, satellite TV, air conditioning or heat as needed and a comfortable bed. The cell phone and Internet keep me from getting behind on everything happening back home. Now, I can take hundreds of pictures on my camera and never have to buy a roll of film.

Yes, many things have changed, but vacation shouldn’t be an attempt to recapture the past. It should be a time for new experiences, to breathe the fresh air of today and appreciate the beauty of now. When I look at the majestic view from Trail Ridge Road or gaze at the reflection of the mountains in Bear Lake, I feel a small charge of electric current flow through my spiritual self. Can that be my batteries recharging?

Saturday, August 22, 2009

Not so Friendly Competition

This year at the fair, I controlled the energy bicycle. Dawn, one of my co-workers, gave me a quick demonstration when I took over for her.

“Flip on the fan first,” she said. “Anyone can get that going.” The idea was to peddle the bicycle to generate enough energy to light up a series of items. “I do the florescent light next, because it’s easy too.”

I gave it a try. I got the fan going and the florescent light flickered feebly. Then, the bike felt like it hit a brick wall—and I was done.

I felt like a Carney beckoning people to step up and show their skill. Most people could start the fan, a lamp, a teensy TV, and the florescent bulb, but when I switched on the 25 watt bulb, the game was over. Another loser! Five bulbs remained unlit.

My boss dropped by the Co-op Building and hopped on the bike to show what he could do. He pumped away without showing any exertion—ah, to have the energy of the young again. I flipped switches working my way from bottom to top. He began to breathe harder and with only two switches left he couldn’t budge the pedals.

About an hour later a teenager wanted to ride the bike. Her mom signed the permission slip, and she hopped on. She peddled, and I flipped switches. Her face turned red, but she kept on pumping. She stopped at the same level as my boss.

“You’re tied for first,” I told her. Her mom immediately signed a slip for herself and tied the daughter. Not to be outdone, Dad straddled the bike. He peddled until his face was beet red, but he slightly edged out his daughter and wife by making the last light burn brighter. I really hoped he wasn’t going to have a heart attack on my watch.

“You must be a competitive family,” I remarked to the mother at their not-so-friendly competition.

“Oh, yes, we definitely are!” she said.

“I understand,” I said. “I come from a competitive family too.”

Could that be an understatement? I thought Jim and I were going to come to blows a few times over cards. He and Aunt Nita were the most infuriating pitch players I ever saw in my life. Uncle Johnny and I couldn’t seem to beat them very often. They bid like lunatics. “I’ll bid eight, on my partner’s hand,” Jim would say. Then he would toss a small card out, but if I put a point on it, Aunt Nita would throw a bigger card on. The next thing you knew, she would dominate the round with all the big trumps.

When Jim developed dementia, he became confused about which cards to play. His mom helped him. He was competitive enough to bid. From the look on his mom’s face, I knew he was still bidding his partner’s hand. From experience, I knew it would work most of the time.

Jim was always competitive with his Uncle Vic and Uncle Orvie. They played checkers at a furious level. The bet was the checkerboard itself. The loser had to sign away his championship and give the board to the winner. Uncle Vic had possession of the checkerboard when he died unexpectedly. He left the checkerboard and the championship to Jim.

Jim and Uncle Orvie were Mario Karts aficionados. Uncle Orvie’s rheumatoid arthritis twisted his fingers into odd shapes. You would think Jim would have cut his uncle some slack due to his handicap. No way. Those two played game after game. “Let’s go for the best two out of three,” the loser would say. “Now let’s play for the championship—the best nine out of ten!” On and on they played. Each wanting to win the fierce, not-always-friendly competition.

In “You’re Going the Wrong Way” published in A Cup of Comfort for Families Touched by Alzheimer’s I describe my dismal Mario Kart experience. I not only couldn’t beat Jim, I couldn’t keep my kart on the track going in the correct direction.

“I don’t know how to play,” I would tell Jim after I lost another game. “Which buttons do I push?”

His aphasia had limited his communication skills and he couldn’t explain the game to me. “I have no idea,” he would say, using one of his stock phrases.

Right before he zipped Toad across the finish line, he would remind me, “You’re going the wrong way!”

He would tell me how to play if he could, I always reassured myself. Surely that was not the gleam of not-so-friendly competition in his eyes. Or was it?

Sunday, August 16, 2009

Country Living—Not Just for Farmers

The State Fair started Thursday with a parade and $1 night. By the time I got off work at 6:00, we had already heard that traffic was snarled and you couldn’t get close to the parade route. Without giving it a second thought, I headed north toward home avoiding the whole mess, fair and all.

Our fair always has a theme, and this year the theme is “Rural Lifestyles Showcase” with an emphasis on “Country Living—Not Just for Farmers.” I’m not sure which is really the theme, but it would seem that the Children’s Barnyard beat out the carnival for top billing this year.

The State Fair changes everything in Sedalia and puts a crimp in our rural lifestyle for the duration. Getting across town usually takes about fifteen minutes on a high traffic day, but during the fair, traffic jams up from one end of town to the other. We have two kinds of locals—those who spend a lot of time at the fair, and those who leave town.

I’ve lived in Sedalia since 1972, and I’ve seen a lot of fairs come and go. I have fond memories of Tammy Wynette singing to Jim, a lot of great concerts, free shows at the Bud tent, herding kids through the carnival, corndogs, ice cream and snow cones.

The last time Jim went to the fair, his dementia had advanced to the point he needed to be supervised. I had asked Jim if he wanted to go to the Clint Black concert with me and he emphatically declined my invitation. I made arrangements for my niece, Rhonda, to go with me instead. At the last minute, Jim changed his mind. When I couldn’t get a seat anywhere near ours, I bought two tickets and asked his sister, Ginger, to take him. It was quite an adventure for Ginger to try to keep up with Jim. She had to be pretty quick to pay for the water he pulled out of the barrels in front of the vendor carts. After a busy afternoon and evening at the concert, we walked to the parking lot together. Rhonda and I pulled out, while Ginger and Jim sat in his Nissan truck. I figured they would be along soon. When they finally got home, Ginger told me she turned the lights on, but each time she let go of the knob, they went off. Jim laughed at her, but couldn’t tell her how to get them to stay on. They sat in the lot until Ginger finally figured it out.

Yes, I have fond memories of the fair, but I also remember sunburns, blistered feet, sick kids, lightening and wind storms, and suffocating heat. A few years ago, I took my grandkids to the fair and if they hadn’t helped me find the car, I might still be wandering around the parking lot looking for it. Last year, I found my car after the Air Supply concert, but in the unlit parking lot, I drove around looking for a way out that didn’t involve a deep ditch. I finally followed another car out of the lot that seemed to know where the one driveway was. It almost makes me think I shouldn’t be attending the fair without supervision, at least after dark.

I plan on working a few hours at the Rural Electric Co-op Building this year. That will probably be my one and only time at the country showcase. Other than that, I plan on avoiding town until the fair is over and our rural lifestyle returns.

Saturday, August 8, 2009

Hurry Up Patience!

On this hot August Saturday morning, I grabbed a cup of coffee and hopped onto the Internet to check email before making my weekly blog post. “Hopped” may be too bold a word to describe dial-up in a high-speed world. My computer looks like the one on the right in the commercial—the one that has loaded a sliver of data while the one on the left displays a complete picture.

My first introduction to a computer was in 1980 when I was hired to enter customer information on an IBM System 34. I typed data onto a screen, pressed enter, and waited a half minute or so for the information to be added to the file and display the next input screen. It all seemed pretty fast compared to the handwritten sheets we filled out in the subscription department of Full Cry magazine.

My home dial-up has become a virtual turtle in comparison to the high-speed Internet at work. To make matters more inequitable, this week our IT department installed a new Dell computer with two gigantic side-by-side screens. Now I can open up a dozen programs and slide displays around until I can see them all. It makes me feel like an interior decorator. Does my calendar look better here, or here? Oh, heck, I’ll just slide it on across to a different screen.

On my dial-up, I find myself gritting my teeth while I wait for a graphic laden website to load. I remind myself that patience is a virtue, but why can’t it just hurry up?

I’m torn between wanting speediness and longing for a more relaxed lifestyle. This Saturday morning is so different from the days I spent, lying in bed drinking coffee with Jim, waking up slowly and not being rushed to do anything. The two of us would fix breakfast and sit at our kitchen table laughing and making plans.

Of course, as dementia changed the entire fabric of our lives, mornings sometimes started with Jim pouring water into the pot without a carafe to catch the coffee. Or I might wake up and find him missing, jump in the car and drive down the road looking for him. Relaxation changed to stress, and I discovered that for a person without patience, I learned to accept our life’s changes remarkably well. The Serenity Prayer became more than a plaque on my wall.

I was never able to revert to my days of leisurely plans and now have a mental To-Do list that nags me constantly. Sometimes, I have to re-enforce my memory with a written list, an electronic reminder, and sticky notes plastered to everything. I need beeps, bells, and visual aids to keep me moving forward. All I need to figure out now is how to multitask multitasking.

I became a blogger on Wellsphere this week and Wellsphere encourages members to set goals and share those goals with like-minded people. So far, I haven’t set any. My goals are planted in my head and can keep me awake at night with small encouragement. Doesn’t a goal of a more laid-back lifestyle seem counterintuitive?

My brother-in-law, Terry, calls people who are constantly on the go “busybodies.” I find his meaning to be more fitting that the traditional definition of the word. I’ve become a busybody, and don’t have time to be patient. Heaven help me, I have a high-speed mind in a dial-up body!

Check out my Profile and Blog on Wellsphere!

Monday, August 3, 2009

Compassionate Allowances

On July 29, the Social Security Administration held a hearing on the need for Compassionate Allowances for individuals with younger-onset Alzheimer’s. Harry Johns, president and CEO of the Alzheimer’s Association, was among the experts who testified for a need to streamline the application process for Social Security Disability. By including younger-onset Alzheimer’s and related disorders on the list, the waiting period for benefits will be greatly reduced. In his testimony, Johns said, “Through the Compassionate Allowances process, Social Security can avoid the extra costs to the agency of numerous appeals and families can avoid the financial and emotional toll of going through a long decision process.”

I was interested in the testimony about primary progressive aphasia. Although many people are aware of Alzheimer’s, including early onset, they are not aware of the lesser known related disorders. When I read the testimony of Darby Morhardt, LCSW, in support of primary progressive aphasia, I was surprised to find that Frontotemporal Dementia (FTD) was placed on the Compassionate Allowances list in 2008, but not Alzheimer’s disease and related disorders.

Considering the difficulty of diagnosing which particular type of dementia a younger person may have, I don’t understand how FTD can be on the list and not Alzheimer’s and related disorders. Placing FTD on the list was a proper move, but that addition in itself speaks to recognition of the devastating financial and healthcare problems caused by dementia when individuals are too young to qualify for regular social security.

If younger-onset Alzheimer’s and the lesser known related disorders are added to the list of Compassionate Allowances, it would speed up the social security process for this group who falls between the cracks.

When Jim was diagnosed with dementia of the Alzheimer’s type, his attorney told us it could hurt his social security disability claim. We had gone through countless appeals for disability based on Jim’s loss of motion and constant pain in his neck and shoulder. We were in the final appeals process when Jim began to lose his ability to communicate. His aphasia made it impossible for him to present a coherent testimony at his own disability hearing. Our attorney asked us to wait in the hallway while he presented the successful appeal to the judge. We had been in the appeals process so long that Jim received back pay and retroactive Medicare.

The very nature of dementia impedes the disability process. Jim was one of the lucky ones. Not lucky in receiving his social security in a timely manner. He was lucky because I had a job with health insurance.

What happens to those with younger-onset dementia who get stalled in the process because they cannot speak for themselves? How does a family survive when a person with Alzheimer’s cannot work and requires constant care?

Too many times a person with younger-onset dementia loses his job before diagnosis. Often a loss of employment means the end of health insurance. Without a job and the inability to get a new job, it is impossible to afford COBRA. It can easily take two years to get a diagnosis of early-onset dementia and even longer to receive a favorable disability determination.

When a person of any age is diagnosed with Alzheimer’s or related dementia, it places the entire family under emotional stress and financial strain. To include younger-onset Alzheimer's type of dementia on the Compassionate Allowances list would relieve families of one of the frustrating worries following diagnosis.