Living with Alzheimer's Disease

Do you remember significant events in your life such as your high school or college graduation, your first job or your wedding? Do you remember the people with whom you shared those events?

Suppose for a moment you didn't. Imagine waking up and not knowing where you are or who the people around you are. Imagine, if you can, not knowing how to dress yourself and having to rely on other people to assist you with your activities of daily living such as bathing, dressing and shaving. Imagine not remembering how to swallow.

I can't truly imagine, but that's a small sampling of what I believe it may feel like to have Alzheimer's Disease.

Did you know:

a.. As many as 5.3 million people in the United States are living with Alzheimer's?

b.. Alzheimer's and dementia triple healthcare costs for Americans age 65 and older?

c.. Every 70 seconds, someone develops Alzheimer's?

d.. Alzheimer's is the seventh-leading cause of death?

e.. The direct and indirect costs of Alzheimer's and other dementias to Medicare, Medicaid and businesses amount to more than $148 billion each year?

Statistics aside, this devastating disease creates an emotional roller coaster not only for the person with Alzheimer's but also for the immediate family and caregivers. Only those who lived with it truly understand, so I thought I would try to share a glimpse of that reality from a caregiver point of view.

I remember one night staying in my mother's bed while she was hospitalized, having my father call my name and tell me he didn't know where he was. I saw the paralyzing fear in his eyes as I got him back to his bed and spent the rest of the night at the foot of his bed.

I recognized the incremental degradation of my father's condition and knew things were changing more quickly when, after an eye doctor's appointment where he couldn't understand how to tell the doctor his answers, I struggled to explain to him how to get into the car.

Yet I was only talking to my father daily, visiting a few times a week and taking him to doctor, financial and legal appointments. My sister Patti and my mother saw another dimension of the disease, day in and day out, only real caregivers know.

For me, it was a roller coaster ride that kept buoying between denial and hope, up and down many times as he seemed sporadically to get better. But there is no getting better. The disease progresses and its symptoms ebb and flow, in and out of lucidity in the early and moderate stages. By the time my father's days of lucidity turned into fleeting moments, true acceptance had come. A temporary feeling of sadness and grief overcame me, but my love for my father and my need to help as best I could propelled me forward. When he finally had to be put into a home four months prior to his death, he needed me to be strong and to advocate for his rights as a human being and patient.

You see, I knew my real father was still inside that body even if he didn't know me or wasn't the man we all knew anymore. That's a reality many people don't understand. Ignorance of that reality causes too many people and family to shun those who suffer, a truly sad occurrence I hope others will discard and replace with memorable moments.

For my sister, one memorable moment came the evening before my father's death when, as she walked to the door to go home my father said, "Goodbye, Pat." After years of not knowing her, he did.

One of my own memorable moments helps me to recall the true nature of my father, nicknamed Goofy. As we drove back on the turnpike from an appointment at the VA facility in Allentown, my father asked me what the name of the town was where we were at the moment. I said I wasn't sure, that maybe there would be a sign soon that could tell us. A short time down the road, he read, "Falling Rock," and looked at me with an impish twinkle in his eye and a goofy smile on his face. We both laughed. Later I realized I was handed a lifeboat memory that would emotionally sustain me as the progression of the disease worsened.

In an effort to honor our father's wish to have people send donations to the Alzheimer's Association upon his death so others would not have to suffer the way he did - and to offer an opportunity to help others enjoy positive family memories - our family decided to coordinate the Alzheimer's Family Fun Festival to raise funds to support patients, their families and caregivers and to find a cure.

Please join us to for a day of fun from 9 a.m. to 3 p.m. on Saturday, Sept. 26 at the Mauch Chunk Lake Park, Jim Thorpe. The event will include a Memory Walk on the Switchback Trail to complement the main Memory Walk location in Weatherly.

Festivities will include a karate demonstration, a presentation on scrapbooking and a talk on writing life stories. The day's events include unveiling of a "Wall of Memories," a memorial to highlight pictures of loved ones who have suffered from Alzheimer's Disease. Activities also include free games and contests for kids and adults, bean bags, horseshoes, bocche ball, bingo, car cruise, bake sale, Chinese auction and live entertainment by Jupiter's Arrow. Local nonprofit organizations will offer concessions.

Festivities will conclude with a drawing for a Memory Quilt and other prizes.

Proceeds benefit the Greater Pennsylvania Chapter of the Alzheimer's Association.

For more information about the Memory Walk or the festival, call Kathy Ruff at 570-645-3059. For more information on living with Alzheimer's, how Alzheimer's affects the brain, the 10 warning signs of Alzheimer's and other information, visit the Alzheimer's Association at www.alz.org.

Kathy Ruff,

daughter of Frank E. Ruff

katrina@ptd.net