JOAN’S BLOG – TUESDAY, MAY 21, 2013 – NOTHING TO SAY

It is time once again for one of my little stories. Trust me, in the end, it will relate to living as an Alzheimer Spouse.

When I was nine years old, I decided that I wanted to be a writer. I wanted to write novels with fascinating characters and riveting storylines. (Maybe at nine, I did not use the word “riveting”, but I was serious about my goal.)

After I graduated college, got married, and started a family, I always thought that “someday” I would get a chance to write. My opportunity came one year when I was in my early 40’s and between jobs. I was going to start as the now prolific, well known, and extremely wealthy Sandra Brown and Nora Roberts had started- by writing romance novels. Not the sweeping, lengthy, romantic suspense novels they write today. No, I was going to start small, and write the 200 page Harlequin romance novel. “How hard could this possibly be?”, thought I. Girl meets boy; they hate each other; they fall in love; they live happily ever after.  Anyone with half a brain and limited verbal skills can write one of these things, I thought, and I considered myself whole brained with above average verbal skills.

Then I sat down to write. I had the general plot outline already set in my mind, but I needed a setting. I needed professions for my characters. The woman could be a lawyer. No. That won’t work, I thought. I know nothing about the inner workings of the law. I am no John Grisham. She could be a doctor or a nurse. No. That won’t work. I know nothing about medicine. I’m no Robin Cook. I went through a list in my head– archeologist; real estate agent; business mogul; store owner; financial wizard……………….and on and on.

That’s when it hit me. I knew nothing about anything, and I surely did not have the time to spend years in the library researching an unfamiliar career. I had been in the field of education as a substitute teacher and special education assistant – not exactly the stuff of excitement, intrigue, and adventure suitable for a novel. I am not sure how my later vocation as a speech/language therapist would have worked in a romance novel, but at the time, I had not yet ventured into that field. So there I sat, dejected and depressed because I knew nothing about anything.

Now let’s fast forward 20+ years. Although before Alzheimer’s Disease, Sid and I led full lives with interesting careers and enjoyable travel, for the last couple of years, I have led a more and more insulated life. As Sid’s physical disability continues to worsen, it has become much too difficult to take him anywhere. We no longer go out with friends, because it is too physically demanding for both of us. We sit at home now, watching TV together in silence, as he cannot even discuss the TV show, because he does not remember what is going on from one minute to the next.

When he is at Day Care, and I have the opportunity to go out with my Alzheimer friends, the conversation usually revolves around Alzheimer’s Disease. I am surrounded by Alzheimer’s Disease.

My attempt to escape the Alzheimer World by making non-Alzheimer friends and attending activities that have nothing to do with Alzheimer’s Disease is not going well. Sid’s appointments and caregiving take up most of my time, and make it difficult for me to find new friends and activities, but last week, an opportunity came my way. A bingo luncheon at my friend’s lodge. She invited me to join her table of 8. Now, honestly, bingo does not thrill me, but I was desperate to get out of the house and see new people. So there we were at the table, and the conversation started. I was transported back to my attempt at writing a novel. Just as I had discovered then that I knew nothing about anything, I discovered at the bingo table, that due to leading such an insulated all Alzheimer life, I had nothing to contribute to the conversation. Planning cruises. Nope, not me. I no longer travel, as I cannot take Sid, and have no more respite days to travel alone. Theater? Movies? Nope, not me. New restaurants? Nope. The conversation eventually turned to books, which I can discuss, as I still read as voraciously as I did before AD.

I came out of that luncheon with a renewed fervor. I may not ever have the knowledge and experience to write novels like Dan Brown and David Baldacci, but I am darn well going find a group to join that goes to museums, shows, ANYPLACE, and offers enrichment activities. I simply refuse to be so swallowed up by Alzheimer’s Disease that I become a non conversational Zombie.

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