This article first appeared in the April 2010 edition of Spectrum Magazine.
When my father passed away in 2007, we moved my mom to a skilled nursing facility near our home. Caring for my son Jeremy and caring for my mom—one affected by autism and the other by Parkinson’s—I’m continually reminded how similar their brain processing challenges are. One glaring difference, however, is that my son is gaining in skills (albeit slowly), while my mother is losing them.
As an older parent (I won’t say how old – a lady is entitled to her secrets), I’m now sandwiched between caring for my children, and caring for my elderly mother. The balance of time has shifted, and now it is my turn to look after Maman who once looked after me. In the trunk of my car I carry a change of clothes for my son and adult diapers for my mom.
Both Jeremy and Maman require high levels of support and are nearly the same in terms of stress, worry, and time commitment. Soon after moving my mom down here, I was overseeing my mom’s caretakers, as well as my son’s in-home support staff. That pile of insurance papers I already hated filling out for my son looked small in comparison with all the paperwork following my dad’s death and all that needed to be done for Maman. The number of phone calls I had to make to health professionals, therapists and agencies suddenly quadrupled. And then there were the Interdisciplinary Care Plan meetings in regards to Maman and the Individualized Educational Program meetings for Jeremy.
Sometimes, it feels like I’m not doing right by either of them. Meanwhile, I still have my work to do, with deadlines looming. “Squeeze as much as you can into a 24-hour day” seems to be the mantra around here. Because of course there are the financial worries that having a “Jeremy” entails.
The other day I took Jeremy to visit my mom. When we got there, Maman was sitting in the communal living room, where there is not much living going on. Maman was slumped in her wheelchair, staring blankly at the TV screen. We walked in and greeted her, but she did not respond. Maman was ignoring us.
“Maman, what’s going on?” I asked.
“I’m mad because you didn’t come yesterday,” she replied, refusing to look at me.
The day before, Jeremy’s tutor had called in sick, so I’d had to stay home and supervise Jeremy getting his homework done. Maman doesn’t get that sometimes I have to choose between her needs and my children’s needs. Tough situation to be in, but it is the reality of those of us in the sandwich generation.
I apologized for my absence, but Maman was still pouting. “And Monica didn’t come today.” she stated. Monica is my sister in L.A., a two-hour car ride away.
“Maman, Monica is coming tomorrow, Friday. Today is Thursday. But I’m here now, do you want to play cards with me?” I asked. Maman loves to play cards.
“Non,” she replied.
“Fine, then I’m going to play a game of solitaire by myself.” I pulled out the cards and set up the game to play. Maman didn’t react at first, but after I played a few rounds, she slowly moved her hand, picked up a card and moved it to where it belonged. Good, I thought, I got her interested.
Meanwhile, Jeremy sat at the table, quietly stimming with one of Maman’s little stuffed animals. She keeps them in a bag hanging off her wheelchair, along with the playing cards and a book. As he was stimming, he rocked, and his chair started to slide backwards. Not a good thing considering that very old people in wheelchairs were right behind him. I asked him to budge, but he ignored me, so I got up and pushed his chair back in closer to the table. I sat back down, and Maman was back to staring at the TV screen. I tried to get both Maman and Jeremy interested in the card game, but nothing doing. I pulled out one of Maman’s Paris Match magazines—they both like to read those—but they just sat there unresponsive, each in their own little world. I continued my game of solitaire. There I was with two of my closest family members, and I had never
felt so alone.
Back home, there was a reminder email from Rebecca’s high school about an upcoming meeting. This is Rebecca’s senior year, and there are all these things I am supposed to be doing in order to help her choose, apply, get into, and pay for college. Things are much more complicated now than when I was in high school. Although I know all the ins and outs of special education, I am at a loss when it comes to college prep, and I feel like I am already behind in helping my daughter to navigate through all that she should be doing. Gosh, have I been spending so much time taking care of Maman and Jeremy that I have seriously messed up my daughter’s future? Something else to worry about, and now I will have to skip a visit with Maman to attend this meeting. It’s tough having to choose between being there for your child and being there for your parent.
Every one of these people whom I love and cherish requires and needs my attention. Sometimes I feel overwhelmed and I think, “How did I get here? How did I become the primary caretaker for so many needy people?” And of course just asking the questions makes me feel guilty.
Then it hits me. I don’t want to rush through any of this. I want to savor the next few years. Spending time with Rebecca is a joy; I don’t want to miss a minute of my teenage girl’s transformation into a young woman. She will be out of the nest before I know it. Maman has only a few years left, and I want to be there for her the way she was for me when I was little. Jeremy is evolving into adulthood, and it is gratifying to see how mature he is becoming. I don’t want to miss a minute of any of it.
This sandwich generation stuff is tough. But soon, my husband and I will be all alone and I’m not sure I’m ready for that. I’m lucky to have all these people to care for, needing me, surrounding me. My plate is very full, and yet that is what gives my life the richness and flavor that makes it worth living.