I’ve said before that being a caregiver changed me. I have come to realize that I look at life through the lens of caregiving and, also of ALS. The Disney Pixar film Inside Out shows us that life can’t all be Joy, and that’s ok. There is a scene in Inside Out in which Anger, Fear and Disgust try to be Joy, since Joy is unavailable. They couldn’t pull it off. I find myself thinking of all the times that I forced myself to be the cheerleader to bring laughter, joy and a sense of confidence to Ben. I could spin moments as joyful and funny or silly. I rarely shared with him my fear and frustration. A recent experience set me in a bit of a downward spiral that has been further escalated by the coronavirus pandemic. Many of the realities of caregiving and ALS, and the less positive memories, keep surfacing. I can’t mask my emotions for myself as I did for Ben. I can only try to make sense of them.
It started just before theater events were cancelled here in NYC, when I attended a concert celebrating the music of Sheldon Harnick, lyricist of one of my favorite shows, “She Loves Me,” and also of “Fiddler on the Roof” and many others. I was excited about the concert because Liz Callaway, one of my very favorite Broadway singers, was performing with Karen Ziemba, whom I also like. I didn’t even realize that Mr. Harnick would be there. He is an adorable man of around 95 years who was having so much fun singing his songs. What I didn’t know was that Rebecca Luker was also one of the performers. Rebecca Luker recently announced her battle with ALS. When I saw her name on the program I was immediately unnerved. I don’t see many people with ALS and it is difficult for me. At the same time, I was actually relieved to see that she is still able to perform. I thought about leaving, but decided to stay. I guess that I was curious about how she was doing and how I would handle it.
When Rebecca entered the stage in her electric wheelchair with Karen Ziemba, I did cry, but her big smile showed that same bravery that I admired so much in Ben. I cried as I drew the parallels and distinctions between her abilities and Ben’s, since the trajectory of the disease varies from person to person. I watched everything she did, noting that she was able to hold a bottle and drink water and to use her arms and hands to put on and take off her glasses. She had the strength to hold a book that was a prop. She didn’t have any the bouts of involuntary laughter or tears that plagued Ben. Her voice was strong. When she sang her first solo, I saw Karen Ziemba get emotional and wipe away some tears as she squeezed Rebecca Luker’s arm. I tend to reflect a lot on the emotional aspects of caregiving and the battle with ALS. This bought back physical details of the disease and how I watched everything in Ben’s world change. We never knew what the next day would bring.
After the show, I watched the women tend to their friend. I was grateful that her friends were there. I remembered how my friends helped me, but also, how alone Ben and I often felt. I loved hearing the music at the concert but felt so distracted by memories of the realities of living with ALS. I wondered about what Rebecca Luker’s daily life is and how her family is doing. I cried for what I knew would befall Rebecca Luker. It was powerful to have this experience at a musical concert, though it has left me shaken. Though he was not a performer, music was so important to Ben and played a powerful role throughout his struggle with ALS. He loved to play around with his instruments and missed that as he lost his dexterity. He always found comfort in music and I am glad that it surrounded him through his last minutes. I was so happy that Rebecca Luker still has her voice and her music. I hope that she is able to find comfort in performing for a long time and that all people with ALS are able to enjoy a source of comfort.
Within just a few days of the concert, the coronavirus became more of a severe threat and it began to affect daily life. My reaction was still grounded in caregiving and how I would have handled it if Ben was here and I was his caregiver. I thought about how I started consistently getting flu shots only after Ben was diagnosed with ALS. My doctor said that I should get one to protect Ben. It didn’t protect me from the bouts of bronchitis and pneumonia that had us on edge. Thankfully, Ben never caught those from me, but the idea of his contracting anything respiratory was dangerous and terrifying.
I was so angry that it took so long for NYC to decide to close the schools because I reverted to how I would have felt if I was Ben’s caregiver. I would have been living in a panic about bringing germs home to Ben. Coronavirus would likely have killed Ben. I talked to my students about my experience when they expressed the concern about coming home from school to elderly grandparents or immunocompromised family members. They needed compassion and empathy and they could see that I completely understood their worries and that teachers are human. If this had happened when Ben was here and the schools had stayed open, I probably would have put my job on the line and insisted on staying at home with him. I was always worried about my job because I took so many days off to care for my dad and Ben. At one point I did take family leave. Now, as I relive all that anxiety, I think of the caregivers who are making these tough decisions. I can say from experience that there is such a need to support caregivers, particularly as more people are turning to family caregivers due to the lack of coverage by health insurance. The coronavirus brings additional challenges though, in that caregivers who travel to the homes of their carees potentially bring the virus with them. I am having difficulty distancing myself from these concerns. I want to help. Maybe sharing these thoughts will be enlightening.
Although I am not a caregiver and this is no longer a direct problem for me, I have stepped back into my caregiving mindset. My emotions have turned me inside out because of all of my memories. I cannot stop thinking about how nervous and upset I would be about taking the subway and going to school in the midst of the pandemic. I relate to the frenzy of paid caregivers not being able to work because they have to take care of their own children in light of school closings. I think of the many times that I had to stay home from work because a caregiver was unable to work, or because Ben was having so much anxiety that he wanted me to be home. The new social distancing would have kept me from even thinking that anyone could step in and help. Caregivers cannot socially distance themselves from carees. It would have had us worried about interactions with anybody else. I learned not to count on visitors to help, but it would have been terrifying to know that calling anyone for assistance would mean potentially exposing Ben to the virus. The importance of a hug would be tempered by the need to limit contact. Although more than four years have passed since I have had those caregiving responsibilities, I find that every action I take is through the lens of a caregiver and becomes a reflection on how it would have affected Ben. I continue to feel that stress.
I have been trying to step outside for a little walk every day, to get some exercise and fresh air and to feel connected to humanity. I cannot get beyond thoughts of what being outside meant when Ben was battling ALS. We lived up a flight of stairs and once he couldn’t walk, he could not go outside. I went to work during the week but ran home after school to tend to Ben, except for the rare occasion that his daughter visited with him and I could have a bit of respite. I had no idea what was going on in my own neighborhood. Ben looked forward to weekends because I was home with him around the clock. Despite the love and devotion, it was hard for me to essentially be working seven days a week. I can’t deny that I did want, and need, time for myself. In our difficult moments, I felt resentful and frustrated, and guilty about those feelings. When I felt captive, I realized that Ben was always captive, at home, but worse, in his body. On the occasions that I went out to pick up groceries or supplies that Ben requested, it was always very briefly. One of the advantages of being in NYC is that everything is just a couple of blocks away. However, even a short outing came with the worry that Ben was alone, though I never left if he didn’t feel confident. Although I did at times really need those outings for my peace of mind, acknowledging that to myself did come with guilt. After all, Ben couldn’t get outside and he just wanted my presence. Now, as I go for my walks, I find my mind drifting to thoughts of how I would be worried about my exposure to the coronavirus and bringing it home to him. I know that these are the things that all caregivers must tackle.
I do find myself feeling relieved that Ben, and my dad, are not here during this pandemic. When my dad was in the hospice, I probably would not have been allowed to visit him, or our visits would have been severely limited. That would have been traumatic for both of us. However, traveling by train to see him would have also brought the worry that I would infect him and/or Ben. Now, my dad and Ben have no worries. Technically, I don’t even have those worries. I should take comfort in that. Instead, I feel a combination of guilt and unease. Current events fill me with anxiety as I conjure memories of the difficulties of caregiving and life with ALS. I cannot seem to shed the caregiving instincts and I don’t seem to want to. But, without the caregiving responsibilities, I do not know how to direct my energy.
Yes, caregiving has changed me. I believe that it changes everyone. Some people cannot get far enough away from the experience, and I can understand it. In my case, caregiving is embedded in the way I define myself. I even obtained my certification as a caregiving consultant. This was less a professional goal than a means to acquire skills to use to support caregivers in any kind of volunteer capacity, and to bolster my knowledge in my blog posts and interactions with readers. I want to care for the caregivers. A while back, I created a webinar about how to keep your identity when you’re a caregiver. I’m posting a link to that webinar here (https://www.caregiving.com/caregiving-webinars/webinar-finding-inspiration-and-protecting-your-identity-during-caregiving/). In this particularly trying time and the critical need to practice social distancing, I will take advantage of technology and post resources that caregivers can use at home to hopefully alleviate some of the tension. I’m very concerned about children who are also stuck at home, in some cases working their way through online learning while surrounded by caregiving and caregiving responsibilities, so I will post some resources for them, too. Selfishly, I also hope that this helps me, too.
I welcome your comments, questions and requests. I thank and respect all caregivers. Ben particularly loved Buzz Lightyear, so I think it’s appropriate to quote him here: “The important thing is that we stick together.”
I wish everyone peace, health and safety during this pandemic.