Loving and taking care of a person with Alzheimer's is an all-consuming task. But what happens when it's suddenly over? Here's what it was like for one woman. This is my story.
In the days following Ed's death, my brain functioned at about fifty percent. I kept losing important papers, like my notes for the eulogy, and I forgot a work deadline. I'd never missed a deadline before. I got lost driving home from work twice and even picked up the phone one morning to call the Alois Center to ask how Ed was doing.
Shortly thereafter, my best friend, Teresa, got married and I was her Maid of Honor. At the reception, I had to struggle mightily to hold back tears, especially during the slow love songs. I realized it brings great sorrow to witness other people's joy during a time of grief.
Four days later I was offered the dream job I'd interviewed for in Kansas City. Ed had adamantly predicted that they'd hire me. It was tragic that he hadn't lived long enough to see his prediction come true. My new life was tremendously challenging and took my mind off my loss as much as anything could.
I had to find a new home in a new city and adjust to a new job and new colleagues. What's more, I had to make new friends. My only physical carryover -- other than my belongings -- was my darling little Shih Tzu, Peter. He was a tremendous comfort to me in the months and years that followed.
When I arrived in Kansas City and moved into the house I'd rented, I hung two photos of Ed over my dresser. In one, taken when he was 70, he appears at his most proud and professorial. The other is the picture I took of him smiling broadly sitting beside the violinist I had hired to play a special concert for him in his room at the Alois Center. Both bring me comfort when they catch my eye as I'm crossing the room.
I soon bought a Shih Tzu puppy, Joey. Once Joey was in the house, Peter became the elder statesman. Two years ago the vet discovered Peter had a huge malignant tumor in his chest. Fortunately, it was a kind of cancer that doesn't spread. So even though he was 14, I had the tumor removed and he was pronounced cured. No radiation. No chemo. But he was still 14 -- a rather advanced age for a Shih Tzu.
Having experienced the deaths of my Ed, my mother, and my sister, Freddie, within an 18-month period, sometimes I felt like I'd rather die myself than have to go through Peter's death, which I knew was certainly approaching. I knew that when he died it would be like the others died all over again.
As time went by I started several activities that gave new meaning to my life. I wrote a book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy. Later, I began blogging about Alzheimer's caregiving on the Huffington Post and the Alzheimer's Reading Room. Caregivers who have read the book and my blogs say they helped them a lot. Former caregivers say they wish they'd had these writings when they were caregivers.
Next I began visiting ladies with Alzheimer's in a local memory care facility. At first I was afraid it would remind me of Ed and make me sad. But on the contrary, I enjoy my visits. Jean, one of my favorites, and I have such a good time. Sometimes we laugh so hard we have tears streaming down our cheeks.
As I'm sitting here writing this, nearly 15 years have passed since that fateful evening Ed was found driving on the wrong side of the road. Since that first sign that something serious was wrong with him. I was only 50 then; now I'm into my 60s. The years have gone by slowly.
I still miss Ed sometimes. I wish he could see my lovely new home and know about my new job. I wish he could see his beloved Peter again and meet Joey. I wish I could hear him say, "Marvelous, Marie! Superb! What a wonderful new house and job. What an amazing little puppy! Brava!" I guess I'll just have to settle for hearing it in my mind and feeling it in my heart. I know it's what he would say if he were here. And my dear, chivalrous Ed would kiss my hand as he said it.
Marie Marley is the award-winning author of the uplifting book, "Come Back Early Today: A Memoir of Love, Alzheimer's and Joy." Her website contains a wealth of information for Alzheimer's caregivers.