How do I cope with the sorrow of my mother’s prolonged illness, Alzheimer’s Disease?

Jacqueline Marcell

I know exactly what you are talking about. When I was taking care of my elderly parents (both with early Alzheimer’s which was not properly diagnosed for over a year), I cried nearly every day. A social worker encouraged me to get into an Alzheimer’s support group, but I was so resistant and thought, “Why in the world would I want to go listen to other peoples’ problems and sad stories? I have two right here!” And, with my mother up and awake all day, while my father is up and getting into everything all night, how am I supposed to slip away for that?

I think as caregivers we can get so isolated that even though intellectually we know we aren’t the only ones going through it, emotionally it feels like we are. I found that reading caregiving statistics helped me feel less alone, especially the one about: "More than 50 million Americans are taking care of a family member or friend--and 20 million of them are Baby Boomers caring for an aging parent." Wow, now that puts the enormity of the situation in perspective real quick—my situation is not unique. Maybe I need to find some of these people!

It still took over a year into my caregiving journey before I finally went (kicking and screaming) to my first support group meeting. Within fifteen minutes, I could not believe what I had been missing. A safe new world opened up to me and I felt accepted and normal for the first time in a long time. I was finally free to speak my mind with people who really “got” what I was going through, and who listened to my frustrations and even offered creative solutions.

When I lamented that I just could not get my father to stay awake during the day so he’d sleep through the night, someone said, “Oh yes, that’s sun-downing and it’s actually very common. Enroll your parents in an Adult Day Health Care program and then they’ll both be busy and tired at the same time. And, you’ll get several hours of respite during the day!” Where do we sign up!

And it wasn’t long before I found myself helping others solve their problems, which made me feel great. One gal said her mom was still independent, but couldn’t see well enough to find the start button on the microwave. I said, “I went through the same thing with my dad. Put a big magnifying glass on top of the microwave, and put a little patch of Velcro on the start button so she can feel for it rather than trying to see it.” They thought I was brilliant. Hey, I am not as dumb as I look.

Finally I was with people who didn’t look at me like I was weak and that I just needed to toughen up. They listened, shared, laughed and cried with me, and gave me real hope that I could get through my darkest days with dignity and grace. They also gave me plenty of those warm hugs—which I so desperately needed.

I also found it helpful when I realized that every person who has ever lived, since the beginning of time, has had to go through the heartache of watching those who came before get sick and eventually pass on. It is a universal law, but even with all that has been written, when it happens to you—there are no words that describe the depth of the sorrow. No one should ever have to face that alone, so be sure to get into a support group right away—you’ll be glad you did!

To find a support group in your area, call your local Area Agency on Aging, Department of Aging, Alzheimer's Association, local hospitals, senior centers, and Adult Day Care centers.

Jacqueline Marcell is the author “Elder Rage” and host of the radio talk show “Coping With Caregiving.” You can learn more about Jacqueline and find information about her book at www.ElderRage.com.