'Still living a full life': My husband has Alzheimer's. But this disease doesn't define him.
“There is a fifth dimension beyond that which is known to man. It is a dimension as vast as space and timeless as infinity. It is the middle ground between light and shadow, between science and superstition, and it lies between the pit of man's fears and the summit of his knowledge.”
It is an area we call Alzheimer's.
Rod Serling had no idea he was writing the script for our personal bizarre journey, our tale of Alzheimer's. We are indeed on a trip, and our lives have been hijacked. If we had a choice, we would be enjoying retirement. Instead, we are rearranging every aspect of our lives to cope with the most frustrating of disorders.
Like any unexpected trip, we do not know the length of the journey, what we need to travel or exactly where we are going. Do we have an assistant, or are we going through it alone? The only certainty is that we know how it ends. All cases of Alzheimer’s end the same way.
Other unknowns on this journey include whether you will have support and the financial means. Worse still, you may hear stories about how destructive this journey can be – damaging relationships, health and finances.
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My husband, Roger, is living with Alzheimer’s disease. We did not choose this journey, but we have accepted our destiny.
One way we cope is to see humor in unexpected situations, like when Roger went to Braum’s for orange sherbet. He was gone way too long, and when he returned, he had a commercial-size box of orange sherbet. Being a good negotiator, Roger had talked the manager out of their only box. We ate a lot of orange sherbet for a long time. Just ask our dogs!
'I may have Alzheimer's. ... I am still living a full life.'
A lot has changed, yet some things remain familiar. We are a team, but Roger is depending on me more.
Being a caretaker for a few family members gives me too much experience with doctors and appointments. One huge difference I noticed with Alzheimer’s was the frequency of check-ins with the neurologist. Alzheimer’s is a severe condition, yet at the end of our appointment, we were told, “See you in six months.” My husband's mind is failing, and there’s no need to check in before six months?
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That told me a lot about what to expect in terms of treatment. I believe there is hope for better treatments for Alzheimer’s and all other dementias. More treatments are coming, and research is getting closer to uncovering answers. Roger and I may not see it in our lifetimes, but our children’s generation will have a different experience.
While the disease is all-encompassing in its effect, it doesn’t determine who he is.
“Today, yes, I may have Alzheimer’s,” Roger says. “On the other hand, I get up every morning and have things to talk about and do. I am still living a full life.”
While the disease doesn't define him, it does shape some of his capabilities. He is an Ironman and can still run in the Redbud Classic but needs a companion. He is still a talented musician in a small four-piece band at home, but now only rarely appears on stage with the Mountain Smoke Band. He is retired from running a company as CEO, but is still a mean negotiator (remember the orange sherbet story?). He drives less and enjoys riding more.
June is Alzheimer’s and Brain Awareness Month, or ABAM. The irony is not lost that the acronym is a good description of an Alzheimer’s diagnosis: It hits you like A BAM!
Take time this month to learn something new about brain disorders and dementias. Offer to volunteer at your local Alzheimer’s Association chapter, and, if you can, donate to the cause. We are all on this journey together to end Alzheimer’s. For now, we try our best to enjoy the ride.
Jackie Mashore is a caregiver for her husband, Roger, who is living with Alzheimer’s disease. Jackie is an Alzheimer’s Association advocate and volunteer. This column first appeared in The Oklahoman.
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This article originally appeared on Oklahoman: Alzheimer's has changed my life. We need to do more to treat dementia
