When my mother and father died eight days apart, my brother turned to me and said, “We are now middle-aged orphans.” To watch them both die had been surreal, an opera in agony and suffering. It was hard to believe that they were both dead. I was numb.
The illnesses my parents had were devastating. My mother had been diagnosed with Alzheimer’s Disease in 2011. My father had been her primary caregiver up until he became ill; in late 2014 he was diagnosed with pancreatic cancer even though he’d never been sick. But once it happened, my mother’s world tilted on its side.
They’d been married for over 55 years and had a symbiotic, loving relationship where you could not tell where one began or the other ended. When my father became sick, needed chemotherapy an hour from their small rural community, my siblings and I felt it necessary to place my mother in a facility that would care for her. My father agreed. Once she was in the facility she slid further down into the Alzheimer’s abyss. She lost everything that was normal to her. The day that we placed my mother in a care facility I sobbed in the parking lot, racked with so much guilt and shame that it doubled me over. To this day I still cannot think about it because I feel so responsible.
Because he lived an hour away, it was easier for him to move into my home while receiving chemo. When a parent moves into your home, at first, you’re blind to what can really happen. You think, it’ll be fun and that it won’t change anything about your life. Yes, I loved that my kids spent more time with their grandfather. I loved being with my father. But there were disadvantages, too.
The biggest was that I hadn’t lived with my father for over 33 years. My father was kind, generous and thoughtful. I got to have breakfast with him every morning and watch his smug response to the Jumble puzzle every day. I didn’t even mind losing the TV remote to him and watching countless basketball games. But my home was never going to replace his home. Nothing that I could do, though I tried mightily, would replace the fact that my mother wasn’t there, his favorite chair wasn’t there, and he couldn’t go to the local high school basketball game and sit with his friends. I could do nothing to make my home his home nor could I change the fact that, for a man who had always been fiercely independent, he’d lost his home, no longer had his friends, his pillow and bed and other familiar things around him.
I realized then that I was no longer the daughter, but a caregiver. The shift in roles was inevitable, but I was unprepared.
The most difficult phase came when he got sicker. Chemotherapy had drastic effects on my father. He lost weight. He was dizzy, a fall risk. He wouldn’t eat. At times he couldn’t get out of bed. Doubt and fear became my closest friends. When should I call the doctor? Should we go to the emergency room? What should I do? Once I called his oncology nurse in a panic. She told me, “I can’t tell you what to do. I am not there. If you think that he needs to go to the ER then you should take him.” But try taking a man to the ER for the fourth time that week after he’d fallen and cut his head.
Since he was in the back bedroom, we never heard him fall. He laid on the floor for a couple of hours, too weak to get up. When I told him that I couldn’t fix his head, he begged me not to make him go. I realized then that I was no longer the daughter, but a caregiver. The ever -perceptible shift in roles was inevitable, but I was unprepared. That day led to a hospital stay for blood poisoning from the fall, then into a rehab facility, and eventually he went into assisted living. He never returned to my home.
When I look back on those 11 months, it was an endless blur of rushing from the ER to the hospital to treatment to my mother’s nursing home to home to soccer then high school then back again. You can’t quantify the emotion, exhaustion and sense of futility that lingered around all these excursions. When you are a member of the sandwich generation, no one can describe the journey into taking care of your parents and your family. It’s yours and yours alone.
The constant push-pull of family responsibilities and obligations to your parents is ever-present. I couldn’t distinguish what was the higher priority. It was all so confusing as my parents’ illnesses grew worse and their bodies more debilitated. How can you say your kid’s needs are more important than a cancer treatment? There was never any solution. “Who came first” became the Abbott and Costello mantra of my life.
Now I find it amazing how much these things change a person. Living with exhaustion and guilt in an adrenaline state changes your body. You become reset to a faster speed, but everything seems slower. You are often breathless. I tried to readjust, slow down. I couldn’t.
Eventually, both my parents were at the same health-care campus. I could tell you that things got better. That the suffering became more palpable. But Alzheimer’s and pancreatic cancer are evil muses. My wonderful and loving parents changed in more ways that I can say. It was a nightmare from which they eventually never woke. Both died within 11 months of becoming ill and moving out of their home. My mother died on a crisp September day, and my father followed her eight days later. So many times I thought during those 11 months that I wished their suffering was over. That the end would be a relief. And it was a relief. But the hole they left was huge.
As time goes by, my memories are haunted by my parents. They show up in the smallest of ways, like cracks in the curtains where only a small bit of light comes in. I suspect that one day I will remember the good and the bad with no pang of regret, guilt or pain, but not now. There was a perceptible shift. I was no longer a caregiver. I was no longer someone’s daughter. I was a middle-aged orphan.