Elizabeth Cohen is a spokesperson for the Alzheimer’s Foundation of America and public speaker on the challenges of caregiving for Alzheimer’s relatives. A news paper reporter and frequent contributor to national magazines such as Glamour, Redbook and Newsweek, her 2004 book, The Family on Beartown Road: A Memoir of Love and Courage, was selected as a New York Times “notable book” of the year. She lives in a farmhouse outside Binghamton, New York with her family.
They fed and clothed you, helped you with your homework, tied your shoes and helped you get through college. Then — one day, and in my life it was literally one day — you switch roles. Suddenly, you are the caregiver, you are in charge, you are helping them.
I was completely surprised and shocked when my father came across the country from New Mexico to New York state to live with me in 1999. Especially after he arrived and did not seem to know who I was. I soon learned he had Alzheimer ’s disease. We got a formal diagnosis and then I began the arduous task of learning how to care for him. But maybe harder than putting up support bars in the shower, labeling the rooms, toilet and phone and explaining ten times a day where he was, was the role switch. Nothing in my life prepared me to trade places with my father, to become the parent of my parent, in essence, a job I have since termed “extreme parenting.”
There are an estimated four million people who have Alzheimer’s disease in this country. These are only a fraction of the elderly who need help in their later years. Most of this population is cared for by family members.
Not all children will accept the responsibility. Not all children hear the call of the care-giving muses. Usually it is an eldest daughter. Often this woman is a parent herself, in midlife, employed and coping with child rearing and other stresses. Add to this the job of caring for a parent and you can reach a crisis point. Best case scenario, you get stressed.
Add to this the stress of caring for a young child—in my case an infant—and you have what I think may be the hardest job in the world. Maybe even an impossible job. Taking care of babies is hard, for sure, but add to the baby a parent who has somehow, so strangely and suddenly, become childlike, and you are quite abruptly in charge of two generations. Big and little people with needs that you must answer. That is why they call us the sandwich generation—we are tucked between generations, responsible for everyone.
Extreme parents get to zip everyone’s zippers, tie everyone’s shoes, make sure everyone has gone to the bathroom, and sometimes change the diapers of our babies and parents as well.
While it is a natural part of life, and happens so often in our society, it still feels strange and wrong somehow when you take charge of your parent. It is counter-intuitive. Not that you don’t love your parent. I was crazy about my own father, Sanford Cohen, who passed away last December. But that you just can’t shake the sense that this is the person who ought to be taking care of you. After all, they did for at least 18 years. Turning to them is a hard habit to shake.
But you do it, mostly because you have to. You learn how to spoon feed and diaper change and go over and over things with them. Help them walk. You do it because you love them and in a sense, you owe them. For what debt is greater than that of child to parent? They launched you into the world; now they need help.
My dad was impossible and a joy, if those things can co-exist. Some days he’d tell me long stories about his childhood; other days he thought he was still a soldier creating a beachhead on a Pacific atoll as he did in WW II. Other days he thought I was my mother and would try to kiss me. He thought the day program where I sent him for a time was a course and he was the professor. “A bunch of dummies in that class,” he said.
I listened to my father the same way I was listening to my one-year-old mouth her first words as she explored the relationships in her life: “Mama,” “dada” and “pop-pop.” He called her “that little guy.” At first I corrected him. “It’s a she,” I’d say. “Her name is Ava.”
But after awhile I stopped. His learning curve was not like hers.
Two years later my mother moved in with me as well. Taking care of her had its own challenges. She did not suffer dementia, but was failing physically. So I got to drive my mom to the doctor’s, put salve on her aches, bandaged her wounds. In short, I mothered her.
Although I did this for years I never really got used to it. Caring for my parents always felt like an ill-fitting sweater. Odd and uncomfortable and wrong. I missed my mother making me blintzes and her signature crepes. I even missed her telling me that I was wasting my life, which she did for a time when I was in my twenties and thirties.
But there are silver linings to the extreme parenting job. One is you get to spend time with your parents at the end of their lives. There is something precious and lovely about that time, because it is so fleeting and finite. I once took my mother for a weekend to a beautiful lakeside town. She was too weak to do much so we spent time watching old movies in bed and sitting in a beautiful fragrant garden. I read a part of a book to her. We just sat there, in one another’s company, just being together. Although I wheeled her wheelchair, fed her dinner and changed the channels for her, she was my mother again for those two days. Something about her sitting across the table from me. Being there. “You have been a splendid daughter,” she told me.
She died two months later.
There is no doubt, caring for my parents exhausted and aged me. For a time it totally did me in. But I can’t say I regret it. Not in the least. And if I could have one day back — even one of the worst ones, I’d take it. Extreme parenting may be one of the hardest jobs in the world but it is also one of the most fulfilling. You’re surrounded by need but also by love.
These days I feel I have so much time on my hands. There is this huge acreage of hours that comes with each day that were once owned by my parents and consumed by the many daily tasks that their care required. I am spending that time now trying to rediscover myself. To own my life again. Maybe this is the final gift of care for a parent — that when it is over you get your life back and it never felt so big.
You have to be careful, though. Caregiving is so taxing and arduous that we are told often the caregiver dies first. If I could pass on any word of advice to others, whose parents may someday need their care, it is this: Take care of yourself, too. Give yourself presents, no matter how small. A walk in a park, a cup of coffee and a magazine by a window, take in a first release movie, get a massage. Have lunch with a friend. Seek others who are caregiving too.
These little things can save you.