In the middle of her husband’s devastating fight with Alzheimer’s, Martha-Lee Ellis found sweet moments where their former love found a way through memory loss.
Like the three times he asked her to marry him.
Or the time he comforted her as she was crying after a telephone call with her sister who had breast cancer, demonstrating a knowledge of who Ellis was and what she was feeling for the first time in months.
Moments like those, providing solace amidst the sadness of losing her husband’s memories of their love to the disease, inspired Ellis to write a book, “The Other Side of Alzheimer’s.” Ellis offers support and advice to other Alzheimer’s caregivers who may lack a support system of peers in the same difficult situation. The book is available at Quail Ridge Books and Music on Wade Avenue.
The Raleigh resident and retired executive director of the Frankie Lemmon School for Children with Disabilities spoke with staff writer Chelsea Kellner about love, loss and second chances. Responses have been edited for length.
Q: How and when did you meet your husband, Michael?
We met through family friends. I was in my early 30s, and my first husband died in an accident. We married in 1982, in my living room with my family and his family there. He was an engineer, and he had several degrees including a Ph.D.
Q: What about him did you fall in love with?
Everything. He was a very dynamic person, one of the most interesting people I’ve ever come across. He had an incredible sense of humor. He had been widowed, so we connected on that level, too.
Q: When did he receive his diagnosis?
He was in his early 70s. We had been noticing for at least three years his memory difficulties, but family members and friends think this is normal aging forgetfulness. It’s not until he began forgetting how to do familiar tasks that I knew we needed help.
He didn’t know how to use a screwdriver. I showed him, and he said, “This is the most wonderful thing I’ve ever seen, where can I find something like this?” That just jolts you so badly, you look at this brilliant man who thinks he has never seen a screwdriver before.
Q: It sounds like it was difficult for you as well as for him.
Yes. When we got the diagnosis, Michael’s face crumbled for about two seconds, then he straightened himself up, and he looked at me and said, “I don’t want you to worry about this, I’m not going to let this thing beat me.” I was just in terror, I was in dread mode. I was caretaker for all but the last 10 months of his life, a little over six years.
Q: What was that time like for you?
It was filled with anxiety, depression, isolation and loneliness.
The most difficult part began for me when I had to learn that I could not correct what was happening with his memory. The person with Alzheimer’s is always right. You cannot change their mind if they remember something a certain way. Correcting them only makes them angry. It is so difficult.
Q: What were the resources you found to help during that time?
I was in a wonderful support group. One of the reasons I wrote the book is for people who aren’t fortunate enough to have that. It’s heartbreaking to be faced with this every day of your life. When Michael didn’t know who I was anymore, I lost my identity.
Q: What is your advice for other caregivers?
The message I’ve tried to put in my book: When you don’t feel loved and known and recognized, try to go back to the love that was in the beginning of your relationship, whether it’s your husband, wife, mother, father, doesn’t matter. The love you felt in the beginning gives you the strength to survive.
Q: Did you know that yourself at the time?
It’s mostly in retrospect. As I was writing, I thought, how did I get through this? Then I began remembering the little things.
Q: What are your hopes for people reading the book?
I hope people will understand that arguing and correcting is not going to resolve anything. Another thing is that they will find a support group – you can’t talk about these things to your friends. That adult day care can be extremely valuable, like it was for Michael – it gave him a job and it gave him friends, as well as keeping him safe.
And the final and most important message is love: recognize it when you see it. If you don’t feel it, go back and find it. You get to the other side of it when you remember the sweetness and the love that shines through, every now and then.