From the time she was in college, Christine Zimmerman was the primary caregiver for her grandfather, who suffered from Alzheimer’s disease. Now, she’s written a moving book about the decade in her life called “Beyond Forgetting.”
We had the pleasure of speaking with her about her experiences as caretaker, the remarkable man her grandfather was, and the cumulative effects of the disease as it progressed over time.
“In the beginning,” says Zimmerman, “I honestly did not know what to expect. I thought he simply forgot things. When I read medical books about Alzheimer’s, it scared me to think of my grandfather in the later stages of the disease. One thing that made his transition easier for me was the slow deterioration of the disease. It gave me the chance to adapt along with him.”
In the beginning, Zimmerman says her grandfather could still dress himself and shower himself, but over time, he required more assistance. Though, providing assistance was only one part of the challenge of providing care for him. “Also, our communication dwindled as we both struggled to understand each other. There were several times I realized the disease had taken him further, such as when he could no longer tell time and when he lost the ability to read. It made me incredibly sad to witness someone I loved so much regress backward towards an infant-like state.”
“My grandfather was my hero,” says Zimmerman with pride. “As a young man, he was a daredevil. He owned five different airplanes (at different times) and raced motorcycles. I loved that about him. But he settled down after he married my grandma, and together they raised four daughters. I spent a lot of time at their home, and they were incredibly special to me. Grandpa had a wonderful sense of humor and liked to tell his grandchildren stories he made up. He could also fix or build anything with his hands. Friends and family used to say, “If Donald can’t fix it, it isn’t fixable.”
When Zimmerman’s grandmother passed away in the spring of 1994, her aunt became his primary caregiver during the day. But the following year, she had to move out-of-state. “My mom called me while I was away at college to ask if I would watch grandpa just for the summer,” she says.
“Even though I didn’t know a lot about Alzheimer’s, it was an easy decision to say “yes,” because of how much I loved him. I moved in with him that spring.
What I didn’t anticipate, was how hard it would be for me to leave him at the end of the summer, Zimmerman says. I was scared to let anyone else take care of him. I knew if my family couldn’t find another caregiver to come to his house, he would have to go into the nursing home. Frankly, the thought of him in a nursing home terrified me. I ended up quitting college temporarily and then later enrolled in evening classes closer to his home.”
Learning About Your Loved One and Yourself
“I learned so much more about my grandfather as a person that I never would’ve known had I not taken care of him,” notes Zimmerman. She describes the time where her grandfather went through a phase where he talked about his parents and brother all the time — as though they were still alive.”Witnessing that has helped me learn to live more in the present moment. I appreciate the special people in my life, because I realized at a young age how it can go by so quickly.”
The journals Zimmerman kept while she was his caretaker provided the basis for her moving, heartfelt book, Beyond Forgetting. In the beginning stages as his caretaker, she searched libraries and bookstores to find true life stories of the Alzheimer’s progression. “Unfortunately,” she says, “at that time, I could not find such a book. There were plenty of medical books with true life experiences mixed in, but nothing that really focused on the entire process.” Since she couldn’t find anything that would assist her, she started writing down her own experiences.
“I decided to journal my own experience with the desire to someday help others. I especially wanted other caregivers to not feel as alone as I did,” Zimmerman says.
“My biggest piece of advice for caregivers is that it is vital you find ways to take care of yourself too. If you aren’t good to yourself, you can’t be good for someone else. That’s the truth, so don’t feel guilty for it. Instead, relish in every possible moment you can carve out for yourself. You deserve it… And when you have reached your limit — even though you may be afraid or apprehensive of what that will entail for your loved one — it’s okay to say enough is enough. Don’t feel like a failure for it. You did the best you could. We all do the best we can in the moment we are given. You are human and we all have limits.”
Are you or a loved one an Alzheimer’s caregiver? How has being a caregiver changed you? Please share your stories in the comments below.