By Mary P. Dunn
I will start by acknowledging that I have codependent tendencies and I have a family that has a few people who need caretaking and not a lot of people who can do or are committed to doing the caretaking (we can table the debate about that for another day). I suspect I am not alone in this situation. Being the primary caregiver in a family, core and extended, is not easy and a global pandemic has raised the bar to levels unknown to the past few generations.
I am married with a supportive, helpful, loving and engaged spouse. I have three sons. MD is fifteen years old and a freshman in high school. DF is a super junior in college and lives off campus in a duplex with five (5) roommates from our hometown. NF is 24 years old. He has epilepsy and works about 30 hours every week at a local grocery chain in our town, collecting carriages and making sure they are sanitized for the next customer. My mother is in a nursing home in the town I grew up in, about 8 miles away. She has dementia and I am her health care proxy. My mother-in-law is in a different nursing home in the same town about 4 miles away She also has dementia. My husband is her health care proxy. I also have a 92-year-old aunt, my mother’s sister. She lives on her own still. She has three blood relatives in this country: my mother, my brother and me.
In normal times, this was a lot. I worked full-time in a demanding management position in corporate healthcare. I resigned about three years ago due to mounting family responsibilities. Until seven (7) years ago my husband was in the Air Force Reserve. He was frequently active and would be on missions to the desert for two (2) or more weeks at a time. When he was not active with the Air Force, his job was municipal police officer, second shift. That meant that when I finished my day job, I came home to single parent the second shift. That included: picking boys up from after school programs, delivering to sports practice, making dinner, making sure homework was done. It also included getting NF through a nighttime seizure. It even included being at his hospital bedside for two (2) brain surgeries. It includes driving him to and from his job because as someone whose seizures are not controlled, he cannot drive. Until almost three years ago it included managing the care worker who allowed my mother to continue to live in her home. It included filling pill boxes and paying bills. My aunt needs some of those same assists today.
Then came February 2020. Like many mothers, my radar for the health of our family was on. I questioned why some of MD’s basketball games were being rescheduled instead of cancelled. He was finishing Suburban basketball and there was a final pizza party scheduled. I would not let him go. My husband and I were supposed to go to a concert at a nearby casino. I held my breathe until it was ultimately cancelled. I stocked up on food fearing shortages, especially as NF reported empty shelves. I stocked up on all the cold and flu essentials fearing we could not avoid the virus. I set up wipe down protocols for anything brought into the house. I bought a pulse oximeter in case someone in our family became sick.
I had my last in room visit with my mother without any special protocols in early March. The same for my husband and his mother. This meant my aunt could no longer visit her sister. At the same time MD’s school went fully remote. It would remain that way until just three days ago. DF’s spring break morphed into fully remote as well. We had discussions about should he live in his apartment and stay out of our house or say goodbye to his roommates and come home. I am glad we made the decision to trust the roommates to be responsible so that they could continue to live in their apartment but still have contact with their families. NF continued to work but not without first checking with his specialists at Mass General that this posed any greater risk than I anticipated.
As this moved on through weeks and months the decisions became: can MD go with his friend to their lake house; trips planned were cancelled and now we wondered should we go away for a week of vacation in our own state; can kids get together to play basketball outside? How does DF begin a relationship with a girl who goes to a different college and lives in a different state?
The responsibility for family health was unlike anytime few living can remember. September did not bring a return to schools but a continuation of remote learning. And sports were not even the same. Soccer was played with masks and without throw-ins. College continued to be remote as well. On the good note, we finally got a few outside visits with my mother and mother-in-law. I was responsible for scheduling the visits with my mother; they were important to me but more so to me aunt.
Remote school is a substitute, and despite the herculean efforts of our teachers, it is a sad substitute. As each month and term passed, MD became more and more disengaged. As much as I tried to keep him focused and on task, he resisted. As much as I tried to direct his work, he just was not interested. There were periods of time where his sleep schedule was turned upside down. And I was without the super weapon of every parent, nothing to take away. What could I possibly take away as a punishment in a world that had already taken away everything that was meaningful to a fifteen (15) yo boy, namely a social life and sports.
During this time, I was also managing the health of a 92-year-old and a 24 year old with epilepsy. That means a lot of prescriptions, refills and pill box fills. My aunt has macular degeneration and receives eye injections every six weeks. I could bring her to the specialist and then wait in the car until her appointment was complete. Same for an appointment with her primary care physician every six months.
For a few blissful weeks I was able to schedule two visits a week, one for my aunt and one for me with my mother in her room. This is because my mother is a hospice patient due to weight loss a year ago. When they told us that we needed a Covid test weekly to see my mother, my aunt and I set off at 6:30 A.M. to get tested. Some days we waited in a car line for three hours to get the test. Once we had our negative test results, each of us could separately go in to visit my mother for 30 minutes. Then Covid spread in our community; workers tested positive and patients tested positive. Our visits came to an end.
Then vaccines became available. My husband qualified because he is a first responder. My mother in the long term care facility got hers. My aunt qualified because she is over 75. I played Covid vaccination lottery to get an appointment for her. Then a snowstorm interfered with that. Fortunately, I had some itell to tell me to arrive first thing in the morning for our makeup appointment. She got her first dose. Now I am waiting for another week to schedule the second dose. I am hopeful that I will qualify for a dose as a caregiver as per our Governor’s order.
I continue to be worried about MD and his lack of engagement at school. He keeps the curtains closed in his room. He was an active kid but in our current world, that is hard to do. Our best bet is his request to join a local gym. While I think being active is great, I am also worried about potential Covid exposure. I finally insisted on a therapist appointment through his pediatrician. At first they offered only a virtual appointment. To be honest, I lost my mind and explained that virtual world is 90 percent of the problem. We went to the in-person appointment and one of the things that I discovered was missing in his and our lives this past year is the organic intimate moments and the chats that happen then: the ride to the bus stop; going to Dunkin before school; rides to friends’ houses; and talking after games. Closeness as a family may not be the big moments but may actually be the moments we don’t even realize are moments.
Today was my over the top, beyond able to contain the pressure anymore day. Yesterday the nursing home told me that they were opening up again to in person visits for residents and family. Then today, they called me to say that my mother was not qualified because she can physically go downstairs for a visit. It does not matter that she cannot focus and engage at a distance. It does not matter that my aunt, with macular degeneration, cannot see her through plexiglass from six feet away. It doesn’t matter that I can see the cognitive decline and that my mother only knows three people in the world and they are refusing close access to those three people. At this point I lost my mind, I demanded to speak to the long-term care facility administrator. I wrote and email to the Elder Affairs Ombudsman for our State. I got approved for in room visits for my mother.
Someone, in every fortunate family, is a corporal in the Covid war. We are focused relentlessly on getting those we love through this as safely as possible. I cannot even begin to imagine what this is like if someone in the family circle contracts Covid. We had only one scare the MD was exposed to someone who tested positive. Four of us had to be tested and fortunately tested negative. Some families are roughing this without a corporal. No one is the point person because they either do not have the ability or capacity to manage Covid navigation.
In the meantime, please be aware that the corporals are getting tired. Some of them are even working, remotely or in person. There is no handbook for this.