Care Givers: The Silent Victims
About the time his mother died of Alzheimer’s disease, my stepdad did a stunning and surprising thing. Though Jim was in his 60s and had always loved to participate in sports and dancing, it was interesting that he got up one morning at about 4 a.m. and drove far away to run in a 5K race. And then it was interesting that he did it again the next week. And the next. Mother kept us updated.
Part of the draw of his running the races could have been the “free” stuff – bananas, muffins and other loot he’d take back to my mom. I think he loved more, though, the fact that just a few weeks after he started running in races, he was winning in his age group.
By the age of 65, Jim was ranked one of the top senior runners in Georgia, and he had the medals, trophies, mugs, plaques, and pictures to prove it. The back bedroom of their house glittered like a trophy store.
He was a quiet man. He loved to dance with my mom until she was stricken with Guillian Barre Syndrome – a post-viral infection that attacks nerves and leaves its victims with varying degrees of paralysis. Mother's losses included walking well and the ability to find balance. The horrific pain from neuropathy and the loss of feeling in her feet ending the active couple's days of dancing ‘til they dropped.
So, after his mother died, Jim started running. It was as though he was running to outrun something. And he was.
This past June, Jim died of Alzheimer’s disease. After his death, Mother and I went through some of his papers. The man was meticulous. Every penny he spent was tracked. Every prescription he bought was logged. Every visit to the doctor at the Veteran’s Administration was noted. And there was the note we knew was in there somewhere: He was diagnosed with Alzheimer’s disease in 1998. It was his greatest secret for many years, and his greatest motivator for almost two decades.
I would have to check this, but I believe it was either the same day of his diagnosis, or shortly thereafter, that he went to Emory University to donate his body to science. I can imagine him getting the feared diagnosis – though I know that because of his mother's death, he knew it was coming – and then resolutely driving up Clairmont Road from the VA to Emory to make life easier on all of us when he could no longer outrun his nemesis.
So from the mid 1980s, all through the 1990s (in 1996 he carried the Olympic Torch through my hometown of Carrollton, GA) and until about 2009 – three years short of his death – he kept going. He kept going in a lot of ways. Ways now, after hearing Dr. Daniel Amen of the famed Amen Clinic speak at an Alzheimer’s Association* luncheon recently, I learned are ways all of us can help ourselves in the battle against Alzheimer’s Disease.
You see, Dr. Amen doesn’t claim he can cure Alzheimer’s disease. But he does say that following his advice can help prevent a lot of the conditions that help cause Alzheimer’s (diabetes, obesity, depression, heart disease). And even though Dr. Amen’s best-selling Use Your Brain to Change Your Age book came out in 2012, it is as though my stepdad lived what Dr. Amen was going to write about. As quirky as Jim could be sometimes, he had done, to an exacting degree, almost everything Dr. Amen recommended.
And I have no doubt that Jim’s excellent care of himself meant a relatively easier go of it all for my mother, his primary caregiver for almost 12 of the 14 years he lived after the Alzheimer’s diagnosis.
In trying to outrun Alzheimer’s with every cell of his body, for as long as he possibly could (about two months before he went into a nursing home), Jim:
- Exercised daily – for years it was running; when he couldn’t run anymore, he walked. And walked. And walked.
- Kept his weight low – at 85, he seemed to have the body of someone at least 20 years younger. He was always at least 10 pounds below the normal weight for someone his height.
- Avoided sugar – “I don’t eat sweets,” he would repeat when anyone offered. As the years went by, he would repeat that phase three or four times with each offering.
- Kept a purpose – For as long as he could, Jim drove the Soup Kitchen van for his church, picking up homeless people and others who needed a ride to have a hot, free meal.
- Maintained a rich spiritual life – Jim was an elder in his beloved Carrollton Presbyterian Church, and was there almost every time the doors were opened.
- Kept learning – Jim probably wore out his library card. He checked out new books on history, health, politics – anything and everything – for as long as he could. I think he kept trying to read even when he couldn’t. That must have been a huge loss for him, when the letters just didn’t connect and mean anything anymore.
- Didn’t drink alcohol – Looking back, I think he quit drinking about the time he was diagnosed. I guess he knew he didn’t have any brain cells to spare, and would certainly not knowingly kill any of the precious ones he had left.
- Tried to stay positive – About four years before he died, his quirkiness increased and started turning into agitation. Medication helped some. But before that, for at least eight years after the diagnosis, it seemed he tried to keep smiling, keep looking for a funny story to hear or tell, keep looking for a way to compliment my mom for her cooking, or shine a light on one of his step grandchildren for anything positive.
- Did his best to care for himself and his family – When Jim died, the fact that he’d donated his body to Emory meant there was no funeral home to call, no choices to be made. I simply called the ambulance service to pick up his body and that was all that needed to be done.
That 14 years earlier, Jim had arranged to have his body donated was a tremendous blessing, because the same day he passed away from aspiration pneumonia, we discovered Mother was almost dead from anemia.
While it was stunning that they’d almost died on the same day, in a moment of clarity I realized how grateful I was to Jim for doing all he had done to care for himself, even his remains. Had we needed to visit a funeral home and make arrangements, Mother probably have summoned the adrenaline in her tiny body to muscle through all of that, and would have died herself.
Alzheimer’s disease sucks the life out of people, families, relationships. I always say, however, that nothing is wasted in God’s economy, especially when people strive to do God’s will.
Jim was not a saint; he had his faults. But he sure didn’t waste his Alzheimer’s experience. In trying to outrun it, he made his inevitable decline a little easier on everyone. The final leg of his race was a big blessing to a lot of people: the people he served at the soup kitchen, the members of his church, the many people he inspired to get fit no matter their age, his friends in Kiwanis, and most of all, his family.
Notes: *The help we received from the Alzheimer’s Association -- information, advice, referrals to services -- took some of the fear and mystery out of the disease, and also helped us find ways to make life a little easier, and for that my Mother and I are deeply grateful.
5.4 million Americans have Alzheimer’s disease. Every 68 seconds someone in the U.S. is diagnosed. The Alzheimer's Association, Georgia Chapter, serves more than 200,000 Georgians living with Alzheimer’s disease and their families. Their mission is to eliminate Alzheimer’s disease through the advancement of research and promotion of brain health, and to enhance care and support for all individuals, their families and caregivers. Alzheimer’s disease is the sixth leading cause of death with no cure or treatment to slow its progression. To find out more, visit www.alz.org.
As this article was posting, I learned of a 62-year-old Georgian, Jack Fussell, whose father died of Alzheimer's disease, and who has plans to run across the U.S. to raise awareness for the role fitness plays in helping to prevent conditions that help lead to Alzheimer's disease, and to help people realize how devastating Alzheimer's disease is for victims, families, and caregivers. I believe my stepdad will be running right along side him in spirit, every step of the way. For more information visit http://acrosstheland2013.com/, or contact Andrea Mickelson at email@example.com or 404-728-6046. In addition to financial assistance, Fussell is in need of supplies, equipment, and state coordinators.
Carey Sipp's first book, The TurnAround Mom – How an Abuse and Addiction Survivor Stopped the Toxic Cycle for Her Family, and How You Can, Too, guides fellow “children of chaos” to create the kind of sane and loving home life that helps prevent next-generation addiction and abuse. Follow her on Twitter @TurnAroundMom.
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