The Shriver Report – A Medical Marathon

Special Edition

A Medical Marathon

I used to think I knew what there was to know about Alzheimer’s disease: memory loss. But even if I knew it all, nothing could have prepared me for what I’ve learned about Alzheimer’s from the inside. My wife Carol’s personality has changed totally. Over time, her pride and dignity have been stripped away, her self-esteem has dissipated, her anxiety has created turmoil in her mind. How could I possibly have known about the magnitude of the emotional, personal and financial devastation Alzheimer families deal with every day? And the only solution we have is to hold on to hope and believe that tomorrow will be a better day.

Carol is 72 now; we’ve been married for 46 wonderful years and have four children. My wife is a very spiritual person, and I’m convinced that the spirituality she cultivated within herself before she developed the disease is what helped preserve her generally calm and pleasant demeanor for so long, which I know makes her rare among people with Alzheimer’s.

“Some family members avoided being around us, as if Alzheimer’s were contagious, or maybe it was just too difficult for them to see her that way.”

Carol was first diagnosed by a neurologist in November 2006. In deep denial, I sought a second opinion at the Mayo Clinic in Jacksonville, Fla., where they did lab work, a CT scan and an EEG. She saw a psychologist, a neurologist and other specialists. They said they saw possible seizure activity in her brain’s temporal lobe. And on Jan. 15, 2007, they also confirmed the diagnosis: Alzheimer’s disease.

Initially, some family members avoided being around us, as if Alzheimer’s were contagious, or maybe it was just too difficult for them to see her that way. For us, we focused on dealing with the disease.

The Mayo team decided not to prescribe the common Alzheimer drug Aricept because seizures can be a side effect. They did start her on an anti-seizure medication, Lamictal, and then a few months later, they added the Alzheimer medication Namenda.

Carol did extremely well on these two drugs. Her memory and alertness seemed better. She had good days and not-so-good-days, but there was no further deterioration for a while.

But about a year later, I noticed her memory worsening, and nightmares and hallucinations beginning. She thought she saw people in our house. She didn’t know where she was. The doctors switched her to Aricept plus Namenda, and that worked for a few weeks. Then the hallucinations started again, worse than before.

For about a year now, it has gotten steadily worse. On bad days, Carol forgets who I am. In the mornings, she thinks I’m her deceased father, Richard. She confuses our daughter, Sharyl, with our niece, Robin. She often talks of going home when she’s at home—or going to work, though she hasn’t worked for five years.

She has also become fascinated with “the lady in the mirror.” At first, she didn’t recognize this lady as her own reflection. It scared her that “the lady” was mocking her by following her around and imitating everything she did. More recently, she sees this lady as a friend, holding conversations with her, sometimes all day long.

“When Alzheimer’s first invaded our lives, we were so thankful that we had three sources of medical insurance. Now our whole financial world is in ruins, and it’s down to just Medicare.”

For a while now, Carol has been getting up before me and waiting at the foot of the bed until I wake, when she asks me if it’s OK to use the bathroom. I get up and assist her. I also now have to remind her to perform routine functions like brushing her teeth and taking a shower. And of course, I’ve become like a pharmacist, dispensing the scheduled medications.

Eugene Fields is a contributor to The Shriver Report.
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