One night, Ed, my Romanian soul mate of 30 years, called me in a panic because he couldn’t find his scissors.
“Why don’t you look in the kitchen,” I suggested. That’s where he kept them.
“Kitchen?” he asked. “What’s a kitchen? I don’t have a kitchen.”
“You know, Ed,” I said. “Where your stove is.”
“My stove? He didn’t know “stove” any more than he knew “kitchen.”
“You know, Ed. Where your refrigerator is. Where you keep your food cold.”
After several moments of silence he said, “Oh. How silly of me. I do have a kitchen, but it only has shoes and clothes in it.”
Little did I know this was to be the beginning of a series of events that would soon convince me that something was very wrong with Ed. And I would eventually find out that the “something” was Alzheimer’s disease.
I became an Alzheimer’s caregiver for the next seven years, until Ed passed away. I was not prepared for the mental and physical demands of caring for someone with dementia. As time passed, my emotional state declined as fast as his dementia progressed. It became a vicious cycle.
How did I cope? How indeed. I had no idea how to survive the following years, but little by little I discovered things that helped tremendously. Here are the events and situations that saved me.
1. I Had an Alzheimer’s Caregiver Coach
A friend told me that the Greater Cincinnati Alzheimer’s Association Chapter had a free online coaching service for Alzheimer’s caregivers. I was very skeptical that a truly helpful relationship could be developed through email correspondence. But how wrong I was.
I emailed my coach every single day and she responded with thoughtful, empathic emails back to me. It was the first thing I did every morning when I got up, and I looked forward to her answers throughout the day.
We developed a close relationship that was extremely helpful to me. The only time we ever met was at Ed’s memorial service. We continued our relationship for almost two years after Ed passed away. I don’t know how I could have gone on without her.
2. I Kept a Journal
About the same time I began emailing my coach, I started keeping a journal. I chronicled my visits to Ed, his gradual decline, my feelings, and my day to day activities. It gave me a way to document my caregiving journey and to remember the positive events as well as air the negative ones.
Soon after, keeping the journal became a creative outlet in its own right. (I had always loved writing.) This journal later formed the basis for my uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy.
3. I Learned How to Get Along With Ed Better
As Ed’s dementia progressed he became extremely difficult to get along with. He would lose his temper at the drop of a hat and often ended up yelling at me, slamming down the phone on me or flat-out refusing to talk to me.
I was at the end of my rope when I invited a friend to have lunch and discuss the problem. This particular friend was a geriatric social worker, and she had life-saving advice for me! She told me three things she said would help:
– Don’t bring up topics that might upset Ed.
– If he does get upset, change the subject quickly.
– Don’t argue, correct or contradict him.
When I finally mastered these tips, our arguments decreased considerably and our relationship returned more or less to its former loving state.
4. I Took up a Hobby About Which I Became Passionate
Despite our improved relationship, I was still devastated by Ed’s condition. One day I knew I couldn’t stand the pain one more day. I didn’t know what I was going to do but knew I had to do something that very day.
For some reason I don’t understand even now I got the idea to go to Best Buy. I wandered aimlessly around the store until I came to the camera section. Suddenly I wanted one. I ended up buying a little Sony Cybershot.
At first my photos were terrible but I stuck with it and developed a specialty -– taking close-up photos of single stem flowers against black backgrounds. I was told by my friends that the pictures were stark and stunning.
I became obsessed with my new hobby. I felt compelled to take photos. I would spend hours working on a single photograph. I would take up to 50 shots to get one great one. It began taking up almost all of my free time.
The best thing about my new hobby was that time stood still when I was doing “a shoot.” This was the key to its value. It took my mind completely off Ed and his condition. It kept me from wallowing in my grief at the continuing gradual loss of that great man I had loved for so long.
5. I Made Peace With Alzheimer’s
It’s one thing to admit a loved one has Alzheimer’s. It’s another entirely to accept the diagnosis in your heart. I achieved acceptance after starting to bring Ed stuffed animals. He loved each one more than the one before. We started playing games with them. It was fun. We giggled like a mother playing with her little toddler.
One day I realized a profound change had taken place in my heart. I began enjoying my visits again. I became aware that I had accepted his condition and I had found a way to relate to him. A way that was satisfying for both of us.
Just seeing him smile and hearing him laugh had become more than enough to make up for losing our previous relationship. Our love had endured even despite Alzheimer’s – the most daunting challenge it would ever face.
Do any of you out there have other tips for surviving as a dementia caregiver?
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