The A-Word

That's what my parents call it. Alzheimer's.

Last September my mom was diagnosed with Alzheimer's. She wouldn't talk about it. My dad told my sister, who told me and my siblings. She found out a month before she turned 80.

At first I was in shock. Then I was angry--it seems so unfair. A brilliant, wonderful woman afflicted with this disease. I cried. A lot.

When I thought about it, which was often, I found myself holding my breath and I had to tell myself to breathe. I felt helpless, and more than a little guilty that I had moved here (I lived only a mile away from my parents in Washington) and left my sister alone there to be the go-to person in this mess.

I've run the gamut of emotions over the last nine months. At first I was a little angry at my mom for not telling me she had Alzheimer's. I went there in November to be at her appointment with her neurologist. She still hadn't said a word to me about it then. I sometimes wondered when she would have told me. Last weekend she told my youngest sister "I thought you might want to know that I have Alzheimer's" (my sister already knew, and my mom had spoken to her about it in November).

As I reflect back over the last couple of years, I see signs that we didn't notice then. Some things are just things that happen with aging. These were different things. Each time I go back I see more progression of the disease. One positive note: she is now talking about it without being defensive herself. It makes life a lot easier for all of us to openly talk with her. It's been hard for me. I can't imagine how excruciating it has been for her and my dad.

I've been reading about Alzheimer's, trying to gather as much information as possible. I like to be well armed. Now comes the learning about and dealing with the real life battles of every day and everyday living with this disease.

The purpose of my visits back to Washington now usually include something that has to do with this new aspect of our lives. Doctor appointments, meeting with an attorney to set up living wills and powers of attorney, making sure HIPAA disclosures are current, etc. My siblings and I have been thrust into the process sooner than we expected, and are trying to figure out how to navigate these waters ourselves.

Add to this the fact that my dad has now been diagnosed with dementia (different than Alzheimer's), and our lives are shifting once again.

I'm sure I'll be writing more as we go through this process.