Late one evening I was deeply immersed in writing a short story when I was startled by the phone ringing. Must be Ed I thought. But it wasn't. It was a sweet female voice I didn't recognize.
"Hi, Marie. My name is Lila Greenwich, and I'm here at the Edgecliff with Dr. Theodoru. He was driving down Victory Parkway on the wrong side of the road. He must have realized it too, because he stopped as I happened to drive by. I was worried so I circled around and stopped behind him, got out and approached his car. He was quite confused so I offered him a ride home. We just got here and he asked me to call you."
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. I eventually became aware that the "something" was Alzheimer's disease.
And so 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.
I want to share with you the events and situations that saved me, hoping they may help you as well.
1. I Got Help From the Alzheimer's Association
I found myself obsessing about the issue of what to do with Ed all hours of the day and night. I had trouble focusing on anything else.
At that point I began consulting almost daily with Clarissa Rentz, then the Program Director of the local Alzheimer's Association Chapter. I didn't know how this wonderful busy woman had the time or patience to talk to me so much, but she made time. I will never forget her help. She gave me an incredible amount of excellent advice and many useful suggestions as well as steady moral support.
2. I Kept a Journal
About the same time, 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 the negative ones.
Soon after, keeping the journal became a creative outlet in its own right. It later formed the basis for my uplifting, award-winning book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy. Alzheimer's. Caregivers who have read it say it was very helpful to them. Former caregivers say they wish they'd had it when they were caregivers.
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.
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.
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. Our love had endured even despite Alzheimer's - the most daunting challenge it would ever face.
Does anyone have other tips for surviving as an Alzheimer's caregiver?
Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy (available on Amazon). Her website, ComeBackEarlyToday.com, has a wealth of information for Alzheimer's caregivers.