HOW TO KEEP LIFE IN BALANCE
Five family caregivers count the ways—along with their blessings.
BY:MARTHA SCHINDLER CONNORS
Creating a Vision
Thirteen years ago, when she was 72, my mother was diagnosed with Alzheimer’s and I worked with my dad, who was 68, to help choreograph her care. But after a few years, I had to break more bad news to my father: He couldn’t take care of Mom any longer—and that soon she wouldn’t know him anymore.
My father’s health was deteriorating, too. So I became the emergency crew—driving 75 miles each way, leaving my husband and four daughters and my psychology practice behind—to face each crisis.
At times, the stress has really gotten to me, but I’ve learned to relish the time I have with my dad. Sometimes, I feel my life is out of control, but I also know that I’ll be there, no matter what, if they need me. And that’s a comfort.
I’ve been a runner for 30 years, and have always found running an invaluable stress-reducer. I also use visualization: As an emergency develops, I picture myself facing it calmly and directly.
Instead of looking at the “half-empty” side of things, I’ve found that by looking ahead and creating a vision for myself and my loved ones, I can be strong. I can hold my dad’s hand and say the right things. And I can say to the doctors, “Okay, Plan A isn’t going to work. Tell me about Plans B through Z.”
—Pamela B., Bedford, New Hampshire
Stealing Special Moments
For the past six years, I’ve taken care of my mother, who is 83 and has developed Alzheimer’s and Parkinson’s disease. My mother lives with my wife and me and needs full-time care. I’m an Army Reservist and spent last year in Iraq, during which time my wife cared for my mother and kept me posted on her condition via email.
I try to maintain a routine for my mother: She gets up at around 9, then bathes (with help). Later, she goes on assisted walks and reads the paper—mainly just the headlines—so that she stays connected with the outside world.
As tough as it is, I know that this is reality. I have to step back once in a while and remember that what I’m doing is a good thing, and that I’m very blessed. Of course there are heartaches, but I know that I have the endurance to see this through. So I steal moments with my mother whenever I can. Sometimes, we’ll just sit together and I’ll hold her hand and say, “Look at us here, together, after all these years. Isn’t this nice?”
As often as we can manage, my wife and I go up to the Canadian border, where we have a little campsite. It’s nice and quiet and we catch our breath for a few nights. And at home, we have a nice big yard that we’ve thrown our efforts into.
When you’re a caregiver, sometimes things get exasperating. But it’s up to me to keep things in perspective, to keep the humor going when my mom feels defeated or weak. I’m putting on all sorts of hats to provide comfort and care.
—Paul A., Little Canada, Minnesota
Finding “Me Time”
My mother is 76. She has Parkinson’s and has lived with me and my daughter, 19, for the past 10 years. She needs lots of help—with bathing, walking, getting up from a chair—which is especially hard because she’s a heavy woman.
My daughter and I have worked out a schedule so that Mother isn’t left alone. And we have a private aide come a few days a week. My mother’s sister has also been a big help. Although she’s 80 and can’t really do much in the way of helping, she comes over often and keeps my mom company, which makes us all feel better.
One of the best ways I know to stay balanced is to keep up with my creative activities. I’ve always loved crafts and am starting my own business. And I’m very involved in my community. This past year, I worked on the committee for my high school reunion and even did the flower arrangements for the big party.
I always reserve a little bit of “me time” every week, too. Whether it’s a meeting or a luncheon or just a get-together, I always make sure that I’ve got someone to look after my mother so that I can go. I know that I have to get out and think about something besides taking care of her. Then I can come back home and give her all the love and attention that she needs.
—Julie B., Los Angeles, California
Calling on Friends and Family
About a year ago, my husband’s father, who is 83, was diagnosed with Parkinson’s and depression and moved in with us. At almost the same time, our grandson, 13, who has a form of autism, also joined our household. My father-in-law needs assistance with bathing and dressing but often he refuses our efforts to help him. My husband doesn’t work, so he takes care of much of his father’s day-to-day needs.
Sometimes I find myself getting down, but not too often. My grandson is very easy to care for —he’s in a regular school and only needs a little extra assistance. But I find it hard to take care of my father-in-law. He’s had a few falls over the past few months, where he’ll scrape an elbow or knee and then just go back to bed without realizing it. So I’ll get up in the morning and get a horrible fright when I see blood everywhere! It’s always just a little scrape but his skin is so fragile that he bleeds very easily.
My grandson and father-in-law get along really well, which is a big help. We invite visitors—friends and family members—often so that they’ll both be able to interact with others and won’t feel isolated. This helps my husband and me, too: We’re still at home so we’re not worried about them, but this relief gives us a chance to take care of other things we need to do.
—Shanna S., Tucson, Arizona
Remembering the Fun Times
My mother is 82 and in a nursing home about four hours away. Most days, she is pretty vacant, but there are also days when she has a sense of humor and is able to tease me and joke about things. One of the hardest things for me is deciding when to visit because I want to go on a day when she’ll get the most out of our time together.
I know that my mother’s world is much smaller than it used to be so I concentrate on making her comfortable and happy. One of her favorite foods is Moo Goo Gai Pan so I’ll sometimes arrange with the local Chinese restaurant to have some delivered. And last time I visited I brought her a chocolate éclair, which she loved.
I also set up an online photo service for her called Ceiva, where you buy a frame that plays a slideshow of pictures that you’ve selected. My mother loves the Berkshires, so I took some photos of a place she used to stay when she was a kid, plus some shots of her old high school, and set them up for her to watch.
When I feel sadness creeping in, I’ll talk to my siblings. We remind each other that she has a lot of happy moments now. After my father died, she’d become very isolated, but now she’s become a total people-watcher and I really think that’s a huge plus for her. I also think of the things she did over the years that made us all chuckle. I find that helpful because that’s what life is—it’s the little things in our lives, strung together, that make us great.
—Doug B., New York, New York