The Sandwich Generation
There's been a lot of press lately about the so-called 40-70 Rule. Basically it says that if you are about 40 years old and your parents are around 70, it's time to start talking about driving and end-of-life issues, such as a power of attorney and a will.
It's a tough subject, one that people of my age (the fortysomethings) really struggle with. We also are part of the Sandwich Generation-caring for aging parents at the same time we're raising children.
Depending on the situation, I've been both fortunate and unfortunate enough to have plenty of experience dealing with the issues surrounding the 40-70 Rule and the Sandwich Generation. My story, which spans nearly 10 years, involves my mother, my father, my mother-in-law, my husband, my sisters and my children, now ages 14 and 4. It also involves heart-bypass surgery, cancer, congestive heart failure, dementia, long-distance drives and plenty of juggling.
Here is my tale.
The walk from the Ohio State Medical Center's Doan Hall to the parking garage on the other side of 12th Avenue isn't difficult-unless you're carrying a 9-month-old baby in a sling while pushing your father in a wheelchair up a ramp. At that moment, I was a walking definition of the Sandwich Generation.
I found myself in this position on a sunny day in June 2005 because we were visiting my mother in the hospital. She was battling cancer. But my transition to caregiver to parents and my children actually began several years earlier, in 1999.
It started innocently enough when I needed my mother-in-law's assistance to drive me to a doctor's appointment because I had injured my right hand. As she drove down Hamilton Road, braking hard at every red light and accelerating quickly at every green one, I wondered why I ever got in the car with her-let alone allowed her to pick up my son at preschool the week before.
The jolting drive ended at my doctor's office, where she slowly pulled into a parking space and then hit the gas instead of the brake, ramming the car into the brick building. While my mother-in-law talked to the police officer who responded to the accident, I called my brother-in-law, our insurance agent.
"Hey, it's Michele. Your mom just ran into my doctor's office."
"Why? What did she need?"
"No, she ran into it with her car."
But none of us had to have The Driv-ing Discussion with my mother-in-law. The accident scared her enough that she gave up the car keys at age 77. Of course, what followed then were several years of my husband and his siblings devoting many hours to driving their mother to the grocery store and doctor's appointments.
That type of care, though, was fairly easy compared to what happened after March 16, 2001. On that day, my mother learned she had cholangiocarcinoma, a particularly vile form of cancer that attacked her bile duct and left her liver riddled with tumors. It usually kills its victims in weeks or months rather than years. At first, she tried to seek help from an oncologist in her hometown of Fort Wayne, Indiana, where six of my seven sisters live. That oncologist told my mother, then 75 years old, to go home and relish her family and long life and wait to die. Neither my sisters nor I were willing to let go that easily. And, as it turned out, neither were my parents.
Within a week, I had secured an appointment for her with a surgical oncologist at Ohio State's James cancer hospital. At the time, I was working as a freelance writer, serving on the board of trustees of a local nonprofit performing arts group, performing in that group, singing in our church choir and leading the parent-teacher organization at my son's school, where I also volunteered frequently. But I knew I had to step up. When my dad had heart surgery a few years before, taking care of his post-surgery care fell to my sister Jeanne, who had five kids at home, including a child who's autistic. It was my turn.
From then until my mom's surgery two months later, I called doctors' offices, made appointments, drove my parents to Ohio State and sat with them while we waited for results. The day of my mom's surgery, my entire family arrived and stayed for a couple of days. My mom's doctor didn't feel comfortable letting her leave Columbus, so my parents lived in my house with my husband, my 6-year-old son and me for a month while Mom recovered.
I took her to her follow-up visits, cooked all the meals and talked to my dad to keep him encouraged. I also fretted over my mom. Meanwhile, I continued my work and volunteer commitments and took care of our son. It occurred to me one night, as my husband and I were doing my parents' laundry, that the roles had reversed. (I certainly wasn't alone. About 60 percent of family caregivers are women, according to the National Alliance for Caregiving and the AARP, yet both men and women make sacrifices to manage their work and caregiving responsibilities. About one in every eight Americans who are between 40 and 60 years old is raising a child while caring for a parent, according to the Pew Research Center.)
We made it through that month and many more. After two more surgeries during the summer of 2001, she returned to her routine at home, even rejoining her swim aerobics class. She would return for regular appointments with her doctor at the James, and I would take her around the hospital, from the clinic to the blood lab to the radiology waiting area. Each time my mom had a CT scan, she would hand me her purse and remove her St. Christopher's medal from around her neck. Instead of holding it, I would wear it.
As the weeks turned to months and then years, we all-including my mom's doctor-were amazed at her survival, yet secretly wondering when the bomb would drop.
It happened about a month after our daughter was born in September 2004. My mom had an allergic reaction to a prescription medicine, and she had to take steroids to fight the hives that were causing her skin to peel off in layers. The steroids were appropriate to treat the hives, but they would wake up her cancer.
At that point, my sisters in Fort Wayne took on much of the responsibility for her day-to-day care, as well as keeping an eye on my dad, whose health also was worsening. At that point, I became one of the millions of adults who help care for their parents via long distance.
By June 2005, my mom was jaundiced, a sure sign the liver cancer was taking charge. That month, doctors at the James inserted a tube in her belly to drain the bile from her body. That was the week my dad stayed with us while I drove him to the hospital to visit mom, with my baby in tow (my Sandwich Generation moment). Mom went home for the summer, and at her last follow-up visit with her doctor at the James, she seemed to know she wouldn't be back. With each passing week, you could see her tick things off her list: one more Thanksgiving, one more Christmas, one more Easter dinner. By late spring 2006, we called in hospice.
After her death, none of us really got a break from parenting a parent. A few months later, my dad was in the hospital on a ventilator because of his heart problems. He never went back home, instead being shuffled between the hospital and a nursing home in Indiana.
I burned a lot of gas on U.S. 33 traveling to Fort Wayne, taking my son and toddler daughter with me as often as I could. The toll it took on them was clear. Once, my sister Mary drove into the nursing home parking lot and could see my son staring out of my dad's room. Later, she sent me an e-mail saying that he looked as if he was trying to will himself away from that place.
After my dad died, things started to return to normal again at our house. But not for long. Within a year, my mother-in-law started to go downhill. While she was still living in her own home and making long-term plans for home remodeling, it was obvious she needed help. She began to call her children more frequently with irrational complaints.
Then shortly after that, my mother-in-law's memory began to worsen. A stroke in April was followed by a heart attack in June. Like my father, she spent the summer shuttled between hospitals and nursing homes. Her children, including my husband, had taken over her affairs: paying bills, selling her house, finding a facility, doing her laundry, applying for veterans' assistance, overseeing her medical care. A study published in the Proceedings of the National Academy of Sciences in 2003 showed that the stress of caring for a family member with dementia adversely affects the caregiver's immune system for up to three years after the caregiving ends. Time will tell for us. My mother-in-law died in September.
It has been a long, long journey. I'm no different, though, from any other adult faced with a parent's terminal illness. According to the U.S. Census Bureau, the number of Americans age 65 and older will double by the year 2030-to more than 70 million. By that time, my husband and I will be in that age group. While I hope their burden isn't great, we might need our own children's aid as we grow old.
During one of my last visits back home before my mom died, I put my baby daughter to bed in my old bedroom. Then I went to my parents' room to help my mom. I gently lifted her legs onto the bed and pulled up the covers, careful not to tug on the tubing connected to her belly. My mom looked at me and said, "I bet you never thought you'd have to do this." I just smiled and told her that it was OK. And then, as she had done for me many times in my life, I tucked her in, kissed her goodnight and told her I loved her.