Sunday, May 31, 2009

The Alzheimer’s Project

When Jim was first diagnosed with dementia of the Alzheimer’s type, I knew nothing about the disease. One day shortly after Jim’s diagnosis, I watched an HBO special on Early Onset Alzheimer’s. The show followed a brother and sister with the genetic form of Alzheimer’s. The sister was in the end stages, and the brother was beginning to need help dressing himself. I remember the gnawing feeling in the pit of my stomach when his wife fastened his belt. As the sister lay dying, the younger generation, a boy and girl in their teens, talked about their fifty-fifty chance of developing early onset Alzheimer’s. That show was a crash course on the relentless disease and how it affects the entire family.

With families of 5.3 million Americans traveling the Alzheimer’s journey, HBO has developed a documentary called “The Alzheimer’s Project.” HBO opened their airways to non-subscribers to make this program available to the general public. Anyone with Internet access can watch the programs on the Alzheimer’s Association website at

Many reviews have been written about “The Alzheimer’s Project” and this is not going to be one of them. I’m only going to talk about my reaction to the series.

I did well on Part I, “The Memory Loss Tapes,” until the death scene. Too many things about that scene brought back the emotional tumult of Jim’s death. As I watched the family’s faces, I remembered the inner struggle to face the reality of our journey’s end.

My first reaction was HBO should not have shown that scene. My friend, Ted, whose wife is in the final stages of the disease called me to make sure I knew about the series. He said, “They are telling it like it is.” I had to admit he was correct.

I imagine not everyone at HBO was in agreement about showing the death scene. I had the same internal struggle about including the final story in Alzheimer’s Anthology of Unconditional Love. I was afraid “The Aftermath” would be too depressing, but something compelled me to share Jim’s death and my reaction. Caregivers and people with Alzheimer’s have enough to deal with to make it through the day-in-day-out struggle with dementia. Did I want to let them know that the death of their loved one is the final insult? That was the moment I realized that no matter how much I had done, the disease won.

Part II, “Grandpa Do You Know Who I Am” shows how young people see the disease. I think about how my grandchildren never knew what Jim was like before dementia. Their image, like some of the children in the film, is of a different person whose brain has been destroyed by disease.

The “Caregivers” is helpful with its real live experiences, and we plan on showing this film at our support group. Knowledge is power and the more we know about the disease, the better caregivers we are. Jim had aphasia early in the disease and wasn’t able to tell me what he was thinking or how he felt. I was blessed by becoming friends with people with Alzheimer’s who retained their communication skills. I learned so much about how a person with Alzheimer’s feels from my friends with the disease. I truly appreciate their insights, fears, and hopes.

“Momentum in Science,” both parts, assures me that progress is being made toward diagnosing and understanding Alzheimer’s affect on the brain. One of the researchers featured in the film, Randy Bateman, MD, from Washington University, accompanied our Missouri Delegation on legislative visits at the Public Policy Forum in 2008. I was impressed with his down-to-earth manner.

The early HBO series helped me understand Alzheimer’s, but the Alzheimer’s Project has a much wider scope with its marriage of personal stories and the hope of scientific breakthrough. Unless science moves forward and finds a cure for Alzheimer’s and related dementias, death is the conclusion of the disease. I look forward to the day when we have Alzheimer's survivors walk a victory lap at Memory Walk. Until then, the only survivors of Alzheimer’s are the caregivers and families.

Saturday, May 23, 2009

Honor our Everyday Heroes

Memorial Day is a time to pause and think about heroes and to honor those who have died in our nation’s wars. At least, that was the original purpose.

It stands to reason that we would use the day to also honor other loved ones. My Grandma Whittle called the holiday “Decoration Day.” She and Grandpa loaded up a picnic lunch and went to Big Rock Cemetery to decorate graves.

After Jim and I married, we made our annual pilgrimage to the cemeteries where our loved ones were buried. Sometimes it was a strain on our budget to buy the flowers to decorate the graves, but it brought a sense of peace as we continued the traditions of our youth.

Our first stop was always Mt. Carmel. From there we went to Big Rock Cemetery, stopped at Stover Cemetery, and then drove back to Sedalia to decorate graves at Crown Hill. We made a complete circle and headed home with a heart full of memories.

When Jim first developed dementia, I drove our usual route while Jim placed the flowers on the graves. When Jim went in the nursing home, I went alone. Decorating graves without him was not an experience I cared to repeat.

Memorial Day 2005 was the first time I participated in the ceremony at the Missouri Veterans Cemetery at Higginsville. I haven’t missed a year since Jim’s death.

I was a little bummed about a conflict this year. My granddaughter is graduating kindergarten Sunday. My youngest son’s family lives in the Lake of the Ozarks area, the opposite direction from the cemetery. I told my older son, Eric, that I was going to the graduation. “I’ll miss the Memorial Day ceremony,” I told him.

I was disappointed, but I know Jim would have never chosen a ceremony for the dead over one for the living. He often wondered aloud what good it did to make someone a hero after they died. Jim always said, “Dying doesn’t automatically make you a hero.” Instead, he would tell our sons when they were small, “You are my hero.”

Jim never considered himself to be a hero. He was tightlipped when it came to Vietnam, and I never knew Jim had received an Army Commendation Medal until he could no longer tell me why he received the award. The commendation was nowhere to be found, and the Army couldn’t produce it when I asked.

“Why would you miss the ceremony when the graduation is Sunday and Memorial Day is Monday?” Eric asked.

“I don’t know why I thought Memorial Day was Sunday,” I said. “After all, it’s always been Monday.”

On Memorial Day, I’ll drive to Higginsville cemetery to place flowers in front of Jim’s niche. I’ll be there with my sister-in-law, Ginger, and with other families to think about and honor our loved ones. When we pause to honor our fallen heroes, we should honor our everyday heroes too. We all know people who face life’s challenges with bravery.

I think about how Jim told our sons they were his heroes, and how prophetic his words would become. They truly became his heroes when they cared for him with love and respect as he faded away.

For most people, decorating graves is an afterthought as they travel home from a weekend at the lake. Others spend the weekend shopping at Memorial Day sales or pigging out at backyard barbecues.

I always thought it ironic that Memorial Day has become a party weekend, not a somber occasion to remember the dead. Maybe it makes more sense to use Memorial Day as a time to celebrate life and honor the living as well as our fallen heroes. After all, we are surrounded by everyday heroes who deserve recognition for facing life with courage.

Saturday, May 16, 2009

Lessons Learned from Scott the Piano Guy

I was flipping through the channels recently and saw a PBS broadcast featuring Scott the Piano Guy. I don’t own or play a piano, but something told me this wasn’t an ordinary show, so I decided to watch it.

Scott begins his lessons by asking his studio audience, “Do any of you want to be a classic pianist?” No one raised a hand. When he asked, “Would any of you like to come home from work and play a favorite tune on the piano?” all hands reached high.

The Piano Guy has a unique method of teaching the piano, and believes anyone can learn to play in days or weeks, rather than years of lessons. He is the first to admit he is not the best piano player. He begins by demonstrating that it makes no difference which fingers you use to play the chords. The funny thing about the piano, it sounds the same regardless of which fingers you use.

Scott demonstrates how to find the mysterious (to those of us who do not play) middle C. He holds his hands out to touch both ends of the piano and falls forward onto the keys. “When I center myself at the piano,” he says, “my nose hits middle C.” Mystery solved.

Scott is entertaining, but he gave me much more to think about than playing the piano. First, when you tackle a problem, you need to decide on your goal. Do you want to spend years playing scales on the keyboard, or just play the darn thing? Do you want to be perfect, or will you cut yourself some slack?

Second, when you have a job to do, you can meticulously follow all the rules. Or, you can be like Scott the Piano Guy and do it your way and write new rules.

I think every caregiver can gain wisdom from Scott the Piano Guy. What is your caregiving goal? I will venture a guess that it is to take the best care you can of your loved one. You don’t care about being the world’s best caregiver, or plan on being a professional. Let’s face it, when you become a caregiver, you can’t spend years practicing before you know what you are doing. You learn to be quick, think on your feet and be creative.

As a caregiver, you can’t possibly know all the rules, much less follow them. You will find yourself making them up as you progress from day-to-day. Besides when your loved one has dementia, you find out that what worked yesterday may work today but not tomorrow.

Scott the Piano Guy is successful because he is innovative. I can’t think of a better attribute for successful caregivers. When people with dementia can no longer come to your world, you need to go to theirs.

If you learn to reassure your loved one and have a positive outlook, it helps both of you through a tough situation. You can be the best caregiver for your loved one without being the world’s best caregiver.

Be kind to yourself and have a little fun. Rather than argue over what the rules say must be done at a particular time, go for a walk and pick a few flowers. Remember, it’s not the finesse and technique that matters, it’s the results. If you make the best of each day and seek out moments of joy, everyone is happier.

Friday, May 8, 2009

When Pigs Fly: Swine Flu Immunization

One of the advantages of getting older is I don’t panic as easily as I did when I was younger. I think it’s a combination of slower reaction time and the reality that I just don’t have as much to lose anymore.

All this media frenzy over the swine flu reminds me of what I consider its culpability in my own brush with death. The ambiguous “its” can refer to swine flu and/or the media.

I was a lot younger in 1976 and so were my children. Eric was 6 and Rob was only four. Swine flu had reared its ugly head, and to protect us from harm, a massive immunization program was implemented. We were warned that since we had no immunity to this deadly virus, all able bodied Americans should be immunized. It sounded almost like our patriotic duty to do so. At the least, it seemed like our parental duty to protect our children.

Jim and I had a disagreement over the immunization.

“I’ll take my chances with the flu,” Jim said. “It sounds like scare tactics to me. Somebody is going to make a whole lot of money out of this.”

“Well, I’m getting the shot. I’d feel just awful if I caught the flu and gave it to the kids,” I argued. I played the guilt card, and asked, “You won’t even do this for the safety of our kids?”

“It’s just a bunch of hogwash,” he said.

My motherly instincts overrode Jim’s common sense, not to mention my own. I should have known that if you drove up in a car, stuck your arm out the window and had someone shoot an untested vaccination in your arm, it couldn’t be good. But I did it. I can’t remember just where the location of the drive-thru shot took place, but I think it might have been a bank.

I was all right for a few days after the immunization for swine flu and I figured life would return to normal. I slept better for a few nights smug in the knowledge that I had done all I could to protect Rob and Eric.

About a week later, I began to develop some rather strange symptoms. I was fatigued and overcome with a general malaise. I barely made it through the day. My arms and legs seemed heavy, my head pounded behind my eyes, and my body ached. I wanted to sleep all the time. I was sure I would shake the mysterious ailment in a few days.

Days passed. Each day I struggled just to function. Then, a few weeks passed. We didn’t have health insurance, and I figured my vague complaints wouldn’t help my doctor figure out what was wrong with me. I remember being so despondent that I held a bottle of pills in my hand and considered taking them all. Instead, I just took a double dose and slept some more.

After six weeks, I began to feel slightly stronger each day and within a couple of months, the mysterious illness vanished without a trace.

I never connected my health issues to the swine flu vaccination, until the dangers of mass immunization began to make headlines. More people died from the immunization than from the swine flu.

I recently read an article in the paper that the swine flu, or the politically correct H1N1 virus, may not be as bad as originally feared. The comforting word was that next fall an immunization may be available for it.

Well, I'll be immunized for swine flu when pigs fly! I’d rather take my chances with the flu. Something tells me I might have a whole lot of immunity.

Saturday, May 2, 2009

The Over-Fifty Diagnostic Test

My family doctor, bless his heart, is looking out for my overall health and decided I should have a colonoscopy. Geeze, it certainly sounded like a lot of fun, but somehow I had dodged the experience for more than fifty years. I had just reminded him I needed my annual mammogram and although that is pretty much having your breasts pancaked, it is not unbearable. To be perfectly honest, I had never heard anyone say anything good about a colonoscopy.

I knew I was in trouble when the Miralax concoction filled my pitcher. Holy smokes, how was I supposed to drink that much liquid in two and a half hours? When I make something I really like, sun tea, for example, I usually throw about half of it out after three days.

The five o’clock hour arrived and I faced off with the first eight ounces. I drank it in about five minutes. I charted a schedule on my junior legal pad at fifteen minute intervals and planned to be done before American Idol. I began to think that contrary to popular opinion, the prep really wasn’t worse than the test.

I congratulated myself on not having to drink the gallon of gunk they tried to give Jim when he was in the hospital between nursing homes. H e had been kicked out of one home and after nearly a month in “regenerations” we had found another home for him. The hospital decided to investigate his rectal bleeding before discharging him. They assigned Eric and me the task of getting the gallon of liquid down him. After a few swallows, Jim gagged, clamped his mouth shut, and refused to drink it.

“It isn’t going to happen,” Eric said. He tracked down the doctor and told him Jim would not drink the nasty stuff.

“We’ll have to force it down him then,” the doctor said. “He needs this test.”

No way were we going to allow that! Jim’s life was difficult enough without someone dumping liquids down him. I knew he would vomit and possibly choke on it. Against the hospitals’ recommendations, we signed a waiver to skip the test.

I thought about Jim and drank my second glass as easily as the first. By the time I finished the third glass, my stomach sloshed and felt bloated. I began to feel queasy. I decided to call my daughter-in-law, Shawna, who is a student nurse. Eric answered the phone.

“Ask Shawna what happens if I throw up,” I said.

After consulting with her, he told me, “That’s not good. Try to keep it down.”

My stomach had other plans. I called back later. “Part of it came back up.”

“Do you want us to bring you more Miralax?” he asked.

“No!” I began to look with each glass with dread.

“Then quit being a kid. Suck it up and deal with it. Shawna says it would be better to drink it a little slower and get it all down.” Even through my queasiness, I had to smile at Eric’s “suck it up” lecture. How many times have I heard that from him?

I threw up again, but managed to drink the rest of it. Now, I worried all night that I hadn’t gotten enough of the solution down. According to Dr. Google, I would have to begin all over again if I didn’t follow directions exactly.

I made it to bed around midnight and was up at 4:00 to get into the hospital on time. Ginger took me to the hospital and reported in as my designated driver.

The nurses were very nice and covered me with warm blankets. They inserted an IV lock and soon after, I exchanged good mornings with the doctor.

“How are you today?” he asked.

“Well, I’d rather be fishing and I don’t even fish,” I replied.

Soon they started the drug, and I began to feel lightheaded. I shut my eyes for a few seconds and then opened them again. I could see a monitor. I watched as the doctor used a shiny loop to snare a small polyp. I was so fascinated with what they were doing, the time passed quickly.

The nurse gave me a cup of coffee and some ice water to see if I could keep it down. Anesthetic of any kind usually makes me violently ill. The coffee made me queasy, but I decided it was because hospital coffee is usually on the nasty side. I had been alert throughout the procedure and thought they must not have given me much.

I was starving after a day on liquids. “Let’s go get breakfast,” I said to Ginger.

At the restaurant, I ordered biscuits and gravy. Before the food came, I rushed to the restroom to upchuck. Luckily I was alone so I didn’t create a swine flu panic.

I boxed up my breakfast and Ginger drove me home. I spent the day sleeping and vomiting. I went to bed at nine o’clock and felt normal the next morning.

The prep really was worse than the test. In fact, the test was a piece of cake compared to the aftereffects of the anesthetic.