Saturday, August 30, 2008

Labor Day Weekend

Labor Day weekend has traditionally been one of my busiest weekends. Is that a paradox? I would think the purpose of the holiday is so people like me who have worked the greater part of our lives could relax, picnic, and basically rest on our laurels.

This is family reunion weekend for Jim’s family, my family now. We meet at the biggest shelter at Liberty Park. When I first attended the family reunion, the Fishers played music and sang. People wandered in from all other shelters in the park to listen to the music.

Sometimes we’ve huddled in our coats, and I remember my father-in-law, Bill, building a fire in the fireplace to ward off the chill. We’ve been there in rain, thunder storms, suffocating heat, and once in awhile, absolutely perfect weather.

Jim’s mom, Virginia, used to bake dozens of her delicious light rolls and cook a big pot of beans. We all look forward to Dinah’s chicken and noodles and Ginger’s potato salad. Along with pies, cookies, and brownies, we’ve had birthday and anniversary cakes.

Jim always looked forward to the reunion. We were usually at the park by 9:00 a.m. so he could set up microphones and amplifiers. The last time he went to the reunion, I picked him up at the nursing home. It was not a good day and not a good idea. He became upset and remained that way for days.

The older you get the more bittersweet family reunions become. It’s great to see family you haven’t seen since the last time, but you can’t help but feel sad about the ones who will never be at the Liberty Park reunion again. A new generation has taken over and those of us who have held to the tradition see our grandchildren play on the swings, slides, and merry-go-rounds. Once it was our children. Life goes on and laughter rings out as we celebrate the bond of family.

I wonder if when the younger generation plays music tomorrow I will hear echoes of other reunions. If I think of how Uncle Charles always called me his “sweetie.” Will I hear the ring of horseshoes clanking on the post, and Jim’s laughter as he shares a joke with Uncle Orvie?

When we pack up our Crockpots and pass around goodbye hugs, we are already looking forward to next year, seeing old acquaintances, and greeting new family members. After all, why are we in the labor force, if not for family? So maybe the illogical way to spend the day is in seclusion totally relaxed.

However you spend your Labor Day, I hope it is worthy of a weekend that celebrates a full and productive life. Part of life is work, but the all consuming part of life is family and being with the people you love.

Sunday, August 24, 2008

Open Mike – Live Radio

Linda Newkirk, the executive director at the Alzheimer’s Association Mid-Missouri Chapter, joined me on KDRO, a local radio station, for a program called Open Mike. We talked about Alzheimer’s disease and our local Memory Walk.

I don’t know how many people are awake at 8:00 a.m. on a Saturday to listen, but it is a popular program. It gave us a golden opportunity to talk about the September 20 Sedalia Memory Walk and to let people know about the Chapter’s services.

I call myself the Alzheimer’s Association Poster Child. I’ve benefited from my acquaintance with the great staff at the Mid-Missouri Chapter since my initial contact when Jim first developed symptoms. The Alzheimer’s Association symbol used to be two people leaning into the “H” of the word Alzheimer’s. The slogan was “Someone to stand by you.” The logo has now changed to a stylistic symbol of a brain and a beaker, which represents the Alzheimer’s Association dual mission to support people living with the disease (and their caregivers) and research to find a cure for Alzheimer’s disease. The symbol has changed, like so many things do, but the heart beat of the organization is the same.

What qualifies me to be a poster child? My first contact with the Mid-Missouri Chapter was through a call to the 24 hour/7 day a week HELP line and, yes, I was connected automatically to my own chapter. I read every word of the literature they sent me and the Chapter newsletter. The only financial help I received for respite care was from the Alzheimer’s Association. They were the only ones who didn’t say Jim was too young to qualify. I registered Jim with Safe Return when he began to wander off. I attended educational programs that helped me develop caregiver strategies and learn more about dementia. Support Group was invaluable to me, and I can’t imagine why everyone doesn’t gather strength from others who know exactly what they are going through. I became an advocate and talked to my legislators on Memory Day and at the Public Policy Forum in Washington DC. I learned even more about the dedication of everyone involved at the Mid-Missouri Chapter during my six years as a Board Member. I developed friendships with staff, board members, other caregivers, and amazing people living with Alzheimer’s.

Jim and I participated in the 1998 Memory Walk with five other people and one dog. I followed that up with five years of being the Coordinator of the Sedalia Memory Walk. Our walk grew to embrace the entire community. As fulfilling as that experience was, I turned it over to Shelley who did a terrific job for the next four years. This year we have a new inexperienced coordinator and she is struggling. So, when they asked me to go on Open Mike, I was happy to talk about our Memory Walk. It was my baby, and I want it to continue to grow strong and healthy.

On the radio, Linda Newkirk and I talked about how Alzheimer’s affects entire families and how Memory Walk allows individuals to make a difference. Saturday, September 20, Sedalia will be on the MOVE to end Alzheimer’s.

Each September, Jim’s Team honors his memory at the Sedalia Memory Walk. This is our time to give back to the organization with “the compassion to care, the leadership to conquer.”

The Sedalia Memory Walk is September 20, at the Highway Gardens on the Missouri State Fairgrounds. Registration begins at 8:30 and the one-mile stroll begins at 10:00. You can register at or email me at

Do you know when and where the Memory Walk closest to you takes place? You can go to, to search by state for your local Chapter’s Memory Walk schedule. Lace up your walking shoes and support the 5.2 million Americans with Alzheimer’s.

Sunday, August 17, 2008

Life is Worth Living

I’m still on a bit of a high three days after the Alzheimer's Association OK/Ark Chapter’s educational symposium at Fort Smith. I was thrilled to finally meet Cheryl, Bob, and Jordan after months of emails setting up my two presentations.

Ft. Smith is a town that welcomes visitors with open hearts. Mayor Baker proclaimed August 14 “Linda Fisher Day” and presented me with the “Key to the Frontier.” The town motto is “Life is worth living in Ft. Smith!”

The day’s program began with “Writing as Therapy: Rocks and Pebbles” at the first general session. After a few opening remarks, I managed to knock over my glass of water and watch as my notes blurred into a soggy mess. It didn’t make any difference because I’m such a believer in the therapeutic benefits of writing that the notes are primarily to keep me on schedule.

I gave the keynote, “Alzheimer’s Can Happen at Any Age,” following the awards presentations. It may have not been an accident that all the breakables had been removed from the podium area prior to my presentation.

The Alzheimer’s Association offered a variety of programs to give family and professional caregivers skills and encouragement to continue with their important missions. Dr. Ed McMahon’s session on “Non-Pharmacologic Interventions” gave examples of how thinking outside the box can benefit people with dementia. Sandy Warmack and Jean Cosgrove facilitated a work shop called “It’s all the Rage.” Earplugs and rolled up construction paper helped us understand the limitations of a person with Alzheimer’s. Several other concurrent sessions were offered, but these were the ones I attended.

The educational symposium energized the participants and motivated them to be the best caregivers they can be. The positive feedback I received made me realize how important it is to share my years of caregiving experience with others who are beginning this journey.

No matter how much it may seem that way, life is never all bad. Moments of joy penetrate our saddest moments. It may be a smile, a touch, or a look that says “I remember” too. Sometimes I am amazed that I walked into the long dark tunnel through the land of dementia and emerged on the other side alive, happy, and optimistic. Most important, life is still worth living in Ft. Smith and in your hometown.

Saturday, August 9, 2008

Double Booked

Some people think I’m insane when they see my calendar. Others just think I don’t realize each day has only 24 hours. Sometimes, I find myself double booked. Last Monday night I had two meetings at the same exact time, across town from each other. Just cancel one? Oh, heavens, no! I went to my BPW board meeting first, and then to the other, longer Memory Walk planning meeting.

Thursday night, I had a dinner meeting, on the opening day of the State Fair. After the meeting adjourned, three of us went to the fair and caught the end of the Air Supply concert. Who says you can’t do it all?

Friday was my day off, but my plans for the day: work a few hours, eat grilled hamburgers at the going-away lunch for our summer employee, and make my 1:15 appointment at W-K Chevrolet to get my oil changed. And then, what the heck, I might as well go to Brian’s Gym for a workout. Not a problem. Except, I got sick Thursday night. I’ll spare you the gross details, but I was violently ill. Kind of reminded me of the time I had food poisoning. That time, Jim hauled me into to the emergency room. After waiting two hours and no doctor in sight, I decided if I was going to die, I would much rather die at home in my own bathroom than the hospital’s public restroom.

I spent Friday totally wiped out. I slept, drank a little water, ate a few bites of bread, slept, called and cancelled everything, slept, and slept. By evening, I felt better so I stayed awake for a few hours, and then went to bed and slept through the night. When my alarm went off this morning—yes, I know it’s Saturday but I had a conference to attend—thankfully, I had slept off my illness. Late this afternoon on the way home, I stopped by work and finished the reports I planned on doing yesterday.

Have I always been like this? No! I became possessed after ten years of being a caregiver. All primary caregivers of loved ones with Alzheimer’s know about the 36 Hour Day. As crazy as my calendar is, it is still calm compared to that of a caregiver.

I’m not sure what happened to the person I once was, but I think she evaporated into a puff of smoke. What happened to the days when I couldn’t find enough to do? What happened to curling up with a book on a rainy day? What happened to my own personal concerts with Jim singing and playing his Fender guitar?

Early onset dementia changed everything. I’m not the person I used to be, and I will never be that person again. I will never take life or love for granted.

Double booked? So what? At least I’m not triple booked. Often.

Saturday, August 2, 2008

News from ICAD: Elderspeak Increases Resistance to Care

Researchers are not only trying to find a cure for Alzheimer’s, they want to improve quality of life and improve the standard of care for people with dementia. The results of an ongoing study released at the 2008 Alzheimer’s Association International Conference on Alzheimer’s Disease (ICAD) involves communication. Researchers used “Elderspeak” to define a communication method similar to a parent using baby-talk phrases such as, “Sweetie pie, it’s time for us to get up now” or “That’s a no-no!” This study validates what we caregivers knew all along: Our loved ones with dementia are adults and need to be treated with respect.

During the study, resistance to care was measured in relationship to dementia care unit staff’s communication with the residents. The communication styles were broken down into normal talk, elderspeak, and silence. The study shows that it is significantly more effective to talk to residents in normal conversation than elderspeak. Silence was neutral.

Jim developed aphasia early in his disease and we learned to cope with his diminishing grasp of spoken and written communication. In effect, my unscientific study spanned ten years. I never used baby talk, but it was perfectly acceptable for me to call Jim by endearments because I always had. In fact, one time when I addressed him as “Jim” in front of our kids, they both giggled because they had NEVER heard either one of us call the other by name. Yet, I know that once Jim was in the nursing home, he had to cringe when staff called him by an intimate endearment reserved for use by people who loved him.

When a person’s spoken language is limited, and they are ordered to do something in an unkind tone, or treated like a child, they will react in the only way they can—by resisting. This resistance is looked upon as “behavior” and reflects upon the resident rather than the staff.

Some states require dementia specific training with communication as one of the elements. The results of this study should be reason enough for long term care facilities to go above and beyond any state laws in improving communication between staff and residents. When a resident resists care, it is stressful for staff and increases the time required to complete a task.

Using respectful communication methods is a win-win situation whether your loved one is at home or in long term care. Proper training allows staff to perform at an efficient level, and residents will be more cooperative. Family caregivers can benefit from the knowledge that their communication style can greatly impact their caregiving success.

Source: Respectful Adult Communications Improves Quality of Care in Alzheimer’s at The study conducted by Kristine N. Williams, RN, PhD, and the University of Kansas School of Nursing was funded by the National Institute of Health.