Music by Matthew Wilder
Lyrics by David Zippel
Performed by Lea Salonga
Mulan(1998) Walt Disney Feature Animation
Today is the anniversary of the release of Mulan. It was actually the first Disney film Ben and I saw together when we began dating. It is hard to believe it was 22 years ago. At that time, Ben was not quite the Disney fanatic that I was, but he wanted to impress me so we made frequent visits to the Disney Store and he took me to see this film on opening day in what became our tradition of opening day viewings of Disney and Pixar films. As it turned out, Ben loved this film and he was very happy to find Mulan ornaments for our Christmas tree. He particularly loved the song in this clip, Reflection. I can relate to it, although Mulan was struggling with her identity within her family and I am struggling more within myself.
Somehow I cannot hide Who I am, though I’ve tried. When will my reflection show who I am, inside?
Ben loved Mulan and Buzz Lightyear!
I’ve written a lot about feeling like I was, and still am, floundering, because when I lost my dad and Ben, I also lost my role as a caregiver. Caregiving consumed my life. I did what I was expected to do but also what I felt in my heart was the right thing to do. Despite the emotional and physical stress, it was the most important, meaningful and loving work I have ever done. I learned that at my core I am an attentive and devoted caregiver, whether to my dad, Ben or my students. Caregiving also revealed to me a strength that I never would have believed I possess, and that my often emotional demeanor would never have conveyed. Once that role was removed, I lost myself and my reflection was blurred.
Because caregiving was so much of who I’ve come to be, it is still difficult for me when I realize that people I meet now do not know the story of Ben and my dad. I am no longer known as Abby, Ben’s caregiver, or Abby who was so devoted to her dad and her husband. Being my dad’s caregiver and his whole world, and being the person at Ben’s side throughout his battle with ALS are aspects of how I see myself, even though those actual days are done. Presenting myself apart from Ben, as a person on my own, seems incomplete, and almost disrespectful. I feel self-conscious when I mention Ben and someone asks how long he’s been gone. I sometimes become apologetic that I realize he’s been gone almost five years. I keep reminding myself that Ben is still a part of everything that I do and we will always be connected. I know that I have to find my own way now.
Now, when I look at myself, I see much of the former, more eccentric and whimsical Abby, though I was changed by seeing my dad and Ben face death and by having the responsibility of caregiving. I still do struggle with compartmentalizing my caregiving experiences and losses. The truth is that I see my caregiving qualities as positive parts of myself. It is a rare accomplishment to feel proud of myself, and caregiving did that for me, though it took a long time after the fact for me to realize it. My struggle has been finding a balance of being true to Ben and my dad, and true to myself, while living in the present. I want the Abby I am now to reflect all of those experiences without remaining immersed in only memories.
I have managed to integrate my caregiving into volunteer work, and even managed to extend it into my school life. This year, I started a club that I intended to reach kids who were caregivers. I saw that many kids were struggling because they were caring for an ill parent or relative or caring for siblings. They had no time for themselves and had difficulty focusing on schoolwork. I asked guidance counselors to let kids know about my club and leave it to them to reach out to me, because I did not want anyone to feel that their privacy was invaded. As it turned out, I have a club of wonderfully caring kids who want to volunteer and want to create activities to care for our school community. It has been a great joy for me to see them blossom and build their confidence. They have created virtual workshops for the school community that have been quite delightful and valuable, and the workshops have provided a welcome opportunity for the students to connect at a time when they feel so isolated. It’s not exactly what I intended, but it’s been such a positive experience to know that indirectly, I am contributing to the students’ development of social and caring skills that would put them in a good position as caregivers. I’m not exactly sure where it’s going, or where I’m going, but I feel like I am doing what I was meant to do. This is a positive way to reflect my caregiving experience.
I will continue to explore ways to reach out to the caregiving community and to of young caregivers. In this new phase of my life, my “new” and maybe somewhat “improved” self is exploring the possibilities for self-exploration and reinvention that will hopefully allow me to make a difference in the lives of others and maintain my tie to Ben, my dad and caregiving. I would love to know that they are proud of me and happy that they are continuing to inspire me. I know that inside myself, I hold all of my love and experiences.
All of our experiences help us grow and evolve. I will always see the people I’ve cared for, loved and lost in my reflection and I am proud and comforted that this will always keep their spirits alive and close. I hope that what others see in me honors them and our love and does justice to all of us.
In the place where I took a photo with Ben, this time on my own, but strong!
In honor of Ben’s love of this film, here’s a pic of him with one of his best buddies during our visit to Walt Disney World in 2014.
Today is the second anniversary of the release of The Incredibles 2. I reread my original post about the film, most of which is re-posted here. I like to reflect on where I was and where I am with regard to dealing with his death and my life. I can’t help but recall that when the sequel opened, it was particularly bittersweet to see it without Ben because The Incredibles was one of his favorite films, but it was also important to me to maintain our tradition and see it on opening day. I do recall that although there are times when I literally feel Ben beside me, which I know some people find strange, at this film I didn’t feel his presence. I did, therefore, profoundly feel his absence. I was angry that he did not have the chance to see this movie. I don’t usually feel angry, though I do often feel frustrated that he was cheated of so much of life. I felt that deeply when I returned to Walt Disney World last fall, when I experienced the activities and events that we loved so much and will never be quite the same without him. There are certainly more significant life moments than a film that Ben has missed and will miss that I should probably be more angry about, but sometimes the little moments make a tremendous impact.
This blog is a clear reflection of the way I look to each Disney film for enlightenment, hopefully a quote that will carry me forward or give me perspective. I like to be able to share these thoughts with other caregivers with the intention that they will validate, inspire or comfort. The Incredibles 2 did not disappoint. The film actually has a lot of messages about inclusion, diversity, fighting for justice, family and love.The wisdom seems even more powerful in the midst of the many issues that we are facing as a society. Though it may be a generalization, I have to agree with Agent Dicker when he said,“Politicians don’t understand people who do good things. That makes them nervous.“
Interestingly, the quote that resonated with me was very appropriate for caregivers, and for an opening weekend that included Father’s Day. Edna Moda told Mr. Incredible,“Done properly, parenting is a heroic act. Done properly.” I was so fortunate to have had two devoted and loving parents. As a public school teacher, over the years I have seen many children who are not parented properly, in fact, they are barely parented at all. Good parenting is indeed a heroic, selfless act of love. The same came be said for good caregiving. It is, indeed, a super power, though I never thought so when I was a caregiver.
As a caregiver, I often questioned my abilities, especially when I was struggling with exhaustion, sadness and patience with Ben when he was stubborn and demanding. But, like any other caregiver, I put my emotions and feelings aside, or, at least on hold, and trudged on because the immediate needs of caregiving are not negotiable. Phone calls abruptly ended, activities were thrown to the side, chores ignored (well, I can’t say I minded that very much) as I attempted to create order amidst chaos, calm when he was panicked, and peace amidst the devastation of watching Ben deteriorate and suffer, physically and/or emotionally. Like all caregivers, I also ran interference among medical professionals and other related staff, as well as family and friends. I provided spirit boosts and levity and also administered difficult doses of reality, as tactfully as possible.
It certainly wasn’t my goal as a caregiver to be heroic and I don’t think that caregivers generally perceive themselves as heroes. We probably spend more time following Dory’s advice to “just keep swimming.”As a crybaby, I’ve never seen myself as heroic- at any point in my life- which is why, I think, I was puzzled when people told me that I was brave. Ben was brave, I was along for the ride, trying to be helpful and, a good deal of the time, not sure if I was much of a success. My insecurities made me feel much less than a superhero. However, I can attest that I definitely earned the Wonder Woman t-shirt Ben got me after I managed to grab him and keep him from falling off the bed!
In the film, we are introduced to new super hero, Voyd, who asks Mrs. Incredible/Elastigirl, “How do you balance the superhero stuff with the life stuff?” Indeed, that’s a very important consideration for caregivers. For me, I constantly struggled with balancing the responsibilities of caregiving against a full-time job, daily life chores, relationships with friends and family, the emotional strain of losing the life Ben and I had, and knowing that ultimately, I was going to lose Ben. In retrospect, I think the balancing act IS the superhero stuff.
Young Dash tells his dad, Mr. Incredible, that he wants to fight bad guys because “It defines me.” I can say that caregiving defined me for several years and I found that it is a significant part of who I am and how I see myself. I have written about how I floundered when I was no longer a caregiver, until I found myself again through blogging, volunteering and trying to support other caregivers. Although I would rather not have discovered this through the illness and loss of my dad and Ben, I feel like I have identified caregiving as my super power. Unfortunately, I was not able to defeat cancer or ALS, but my dad and Ben always felt cared and advocated for and loved, and that is incredibly powerful. I did not see it while I was actively caregiving, but time and distance have provided valuable perspective.
Mr. Incredible at Walt Disney World’s parade, 2014.
Mr. Incredible summed up well the life of a caregiver when he said: “How do I do it? By rolling with the punches, baby!” I can picture Ben smiling and nodding, because, in actuality, both he and I rolled with the punches. I am still in awe of how well he rolled with the severe punches dealt to him by ALS. Maybe, in our own ways, we were both super heroes, albeit without the cute costumes.
I highly recommend The Incredibles 2. It’s quite fun and fantastic and offers unexpected words of wisdom for caregivers and everyone else. Post your thoughts! I look forward to reading them.
Ben as Mr. Incredible- Part of a birthday collage that I made for Ben. When it came to battling ALS, Ben was indeed a super hero!
At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee. They are probably the only villains we met!
May is ALS Awareness Month, and although ALS is always on my mind, even in the days since I lost Ben, I like to think that all of the Awareness months bring new information, insights and reflections into view. This post is probably a long time coming, but this seems a good time to address new issues and aspects of ALS and caregiving. In many posts I have mentioned that while Ben was fighting his battle against ALS, anger, resentment and profound sadness affected us. I would say that we both believed in the quote from the 2015 live action Cinderella to “have courage and be kind,” but it did not always happen. I have read many comments from caregivers of people with ALS and other illnesses expressing aggravation and devastation from the hurtful things their carees say to them. Likewise, they are upset with themselves for the ugly things they have said to their carees. I have not really delved into this topic, mostly because those conversations with Ben feel very unloving and uncharacteristic of our relationship and what I want to remember, and I don’t want to speak for Ben and potentially compromise his integrity. But, having suffered my own battle wounds as a caregiver, and having questioned my caregiving abilities because of incidents with Ben, I felt that sharing my experience might offer some perspective and consolation. To do this, I believe it’s time to invoke the Disney villains!
It must be said, and reiterated, that it is almost incomprehensibly difficult to need a caregiver, but it is also profoundly difficult, in a different way, to be a caregiver. Although the needs of a caree often must take priority, the challenges both face must be considered. Ben was diagnosed with ALS a couple of years after my dad was diagnosed and living with cancer. In my mind, there was no question that I would be their caregiver, though I cannot honestly say that I knew exactly what caregiving would look like. After his diagnosis, Ben told me that if I wanted to leave and have a different kind of life, that he would understand. I would never have done that, though many people thought I should, for a variety of reasons. To this day, I do not regret my decision. The only regret I have is that Ben and I did not communicate better. I hope that if this post resonates with any caregivers or carees, that they take to heart how crucial it is to have those uncomfortable and sometimes heart-wrenching conversations and to express yourselves before the ugly emotions and language spew forth, so that you can speak to each other respectfully, tactfully, and lovingly. In the case of ALS, communication itself becomes increasingly impeded, so those opportunities for self-expression and sharing should not be postponed.
Hold your tongue!– Lady Tremaine, Cinderella’s Stepmother,Cinderella (1950)
Ben’s ALS progressed slowly, which was a good thing. However, it allowed us to procrastinate on difficult discussions and decisions about what kind of home health care we would need, how we could organize our lives financially and practically, as well as emotionally, and even where he would live. When these subjects were raised, either by our loved ones or by his medical teams, Ben’s attitude was that these things were going to happen way down the road. I admired his optimism even when I was frustrated. I worried about these things, but I always reasoned that he was dying and if this was his way of processing these things, that I had to follow his lead.
After nearly four years, despite his denial, we hit that bump in the road where Ben’s needs were increasing, and I was struggling to juggle a full-time teaching job while being his full-time caregiver and my dad’s. To a large degree, I felt that Ben’s denial kept him healthier. On the other hand, because he did not concede to his limitations, he did not admit that I had to do much to accommodate him, which was not true, and I held my tongue and seethed rather than express my concerns about how overwhelmed I felt. Unfortunately, it came out in bad moods that annoyed Ben because he did not understand their source. It was becoming more and more of a battle to juggle caregiving with work, and to feel that I was slipping away from my friends, family and even myself. Frequently, when we were awake much of the night, I went to work exhausted. Sometimes, on those nights, I would cry while I was assisting Ben, which upset both of us. Of course, it was never his fault that he needed assistance. We both knew it was exhaustion but we had no solution.
When there was not an actual incident, I lived with the worry of one. While Ben was able to do some walking, I went to work every day waiting to get my daily text that he was okay and at his desk and I spent the rest of the day hoping that there would not be a problem. There were many times that I had to leave school because he was having a crisis, either falling, stuck on the toilet, or suffering severe anxiety for which he refused medication.
In one conversation about the difficulty I was having with full time work and full time caregiving, he told me that I did not do very much and what I did was half-assed. I think that even he knew this was not true, but it was not easy to hear and it cut me deeply. He asked me to list what I did for him, which I would not do, saying that I should not have to, and I ended the discussion, leaving both of us feeling angry. Clearly it had a strong impact, because I remember it several years later. Better communication about our feelings would likely have helped, even if it could not change our situation. Intellectually, I knew that Ben did greatly value and depend on what I did for him, and he loved me as much as I loved him, but he did not want to admit what was happening to his body, and he took it out on me because I was the closest person to him. He minded his temper more with his daughter because, unlike with me, he admitted that he did not trust that her support was unconditional and he knew that it was measured. There were certainly times that I dropped the ball or was not as patient as I could and should have been. With our own struggles and needs, it became impossible to be objective. We both felt anger, aggravation and helplessness and the reality was that both of our feelings mattered even when we couldn’t meet all of our needs. There was so much love over those years, and it still disturbs me that these memories still hover over me, but it would be dishonest, inaccurate and self-deceptive to ignore them.
Words are important, and Ben got impatient when I was irritated that he did not think he had to say thank you to me. To be fair, sometimes he did, but he had to deem it a worthy occasion. It may be a simple phrase, but he knew that it meant a lot to me, and that I felt that his not saying it was sending me the message that he felt entitled. Rather than argue these things, I withdrew into myself rather than dispute Ben, because, after all, he was dying and had his own inner conflicts. I wrote in my journal and vented to a social worker at the ALS local chapter, to his doctor, and to my friends and family. But, I also felt paralyzed, so nothing changed. I have to say that on so many levels I felt honored to be the person Ben relied on to be his caregiver, but the stress of his worsening condition, lack of acceptance of it, and our reluctance to admit and address our feelings and fears, led to a lot of sadness and resentment.
There were weekends when I simply needed time to myself. TGIF was not something I really looked forward to. Without question, I took care of Ben’s needs- prepared and fed his meals, washed him, transferred him to and from chair and commode, and whatever else needed to be done- but I was sometimes distant. I knew I was aloof and only doing what had to be done, with little conversation or affection. I stayed by myself in one room and left him in the other to play on his computer or watch television, but I could see and hear him. I knew he waited all week for time with me on the weekend and I felt guilty that I just could not be there emotionally. I knew that I was collapsing and I did not know what to do. Ben did not want to hear it. Staying in a quiet room staring at the television or my laptop was the way I coped. At those times I did wonder if I was a good caregiver. When Ben felt insulted, annoyed or impatient when I was distant, I seriously questioned myself as a caregiver. It’s taken me a long time, and a lot of advice, to reconcile my feelings. I still think about it though, particularly as COVID19 has us all homebound.
In my Disney way, I feel it is necessary to say that there was pixie dust, as Ben and I did find many ways to show each other our love and gratitude. When he did have some private care home health assistance, he sometimes texted me that he had asked his aide to stay an extra hour or two, so I could stay out for a while. He did try to find back-up assistance when there was an event that he knew I really wanted to attend. I kept Ben laughing and smiling, with my Vitamix concoctions, my dramatic presentations of shopping I had done for him, my surprise decorations around the apartment and little gifts, including snowballs after a storm. He knew that I would make the phone calls and write the emails to get him what he needed. There were so many loving gestures that showed the real Ben and Abby, but they were sometimes overshadowed by darker occasions that resulted from our Jaberwocky that was ALS.
Get to the part where I lose my temper! –Red Queen, Alice in Wonderland
One of the physical realities we faced was that I suffered a broken shoulder in 2012 and my back issues were amplified a few months later after a car accident with my dad (he was fine, thank goodness). Fortunately, Ben was able to walk on his own at that point and his ALS had not progressed drastically. However, even a year or two afterwards, when he did need more assistance, transferring Ben frequently was physically difficult, compounded by the emotional toll on both of us. On many weekends, Ben kindly stayed in the bedroom so I did not have to yank his chair across the apartment several times. But, there were times that it was unavoidable. Once, after getting annoyed with me, he asked me to transfer him back to his chair, minutes after asking me to put him into the bed. I felt helpless and irritated, and I asked him why he had to transfer so soon and his response was, “so I can make you as miserable as you make me.” This was one of the very few times that I lost my temper and I argued with him that I gave him 1000 percent and that he was ungrateful. I left him in bed for about ten minutes to gather my strength- physical and emotional- despite his protests.
During some of these kinds of moments, Ben said that if he didn’t have a life, why should I have one? There is no answer to that other than that’s the way things turned out and life was unfair to him. It did break my heart and it still does. It also made me question if I did have a right to want to see my friends sometimes or do some of the things I enjoyed, even if it was just a casual stroll across town after school. I was terrified and devastated by what was happening to him and to our life and I felt like I was not doing a good job of finding a balance of work, caregiving and life.
The trying situations were not always with Ben. There were medical professionals with whom we did not have a positive connection. Some were judgmental and not helpful. One social worker provided misinformation and did not help Ben with financial advice and we ended up researching and completing paperwork on our own, losing a year of benefits. In the hospital, we were fortunate to have many wonderful health care professionals. However, the goal was to move Ben on and out, and I learned that as an advocate, I was easily able to overcome my shyness and lack of confidence to communicate on Ben’s behalf. I aligned myself with the most supportive and helpful team members, and his incredibly patient and wonderful doctor, and enabled Ben to navigate his circumstances on his own terms.
I was also the liaison to Ben’s family, particularly when he was in the hospital. Throughout his illness, Ben was often disappointed by their empty promises, which left me exasperated. Few questions were asked but he and I were often judged despite their lack of actual knowledge of his condition, or their involvement, which was infuriating. Intellectually, I knew that it would not help the situation to lose my temper, but I could not refrain on certain occasions, like when one daughter criticized me for taking fifteen minutes to respond to a text when, in fact, I was talking to the medical staff in the hospital, and it had taken her over a week to even reply to a text telling the family that Ben had pneumonia. It helped me to set the bar very low in terms of expectations for logic as well as family support and involvement. A sense of humor also should never be underestimated. The balance in that came with handling their demands and expectations of me. I tried to establish a norm where I relayed particulars but kept my distance, which allowed me to keep them informed without compromising my feelings and enabling a lot of drama. I put aside my own resentments and was able to have meaningful conversations and a brief close connection to one of his daughters, as well. Believe me, in my fantasies and when venting, I was a veritable Red Queen!
“Life’s full of tough choices, isn’t it?” – Ursula, The Little Mermaid
Communication and delivery style are so vitally important, especially when tensions are high. On several occasions, Ben said that I had no choice but to take care of him. I remember that one day, I very quietly told him that I did have a choice. I was with him because I chose to be with him because I loved him, but I could also choose not to stay with him. His first reaction was anger, and then it seemed like shock that I would say such a thing. I imagine it scared him to hear that. But, Ben also knew me. He knew I would never leave him. I knew I would never leave him.
I was furious when, without any discussion, Ben told me that he was letting go his home health aide as soon as my school year ended and that I would be his 24/7 caregiver for the summer in addition to 3 hours each weekday of home health care provided by hospice. However, he only allowed them to sponge bathe him and feed him, preferring my “cooking” and with the knowledge that they would not transfer him to and from beds, chairs and the commode. I did ask him why he made that decision without speaking to me about it and he said I had no choice because he was concerned about finances. Ben thought I should not question his needs or his plans, and indeed, he needed 24/7 assistance. Although he did not admit it, I’m sure that there was an element of fear that I would refuse to take on this monumental task, so he created a scenario where there was no opportunity for debate, knowing that I would never leave him. The truth is that I really did not have a choice but to take care of him, not because he said so, but because despite these ugly moments, I was connected by my heartstrings- we loved each other and I would never have abandoned him. But, no one wants to feel taken for granted or stuck, and that was exactly how I felt. I felt very close to a breaking point at that time, but I did not feel that I had any options. It was not a safe or good physical environment, but we were stuck in the apartment. We plodded through these times recognizing, as the song in Cinderella says, “so this is love.” Unfortunately, when there was a conflict, our communication broke down.
We never had a chance to resolve the issue of my being his 24/7 caregiver because he had a respiratory crisis and ended up in the hospital just a few days after the school year ended. When Ben spent his last weeks in the hospital, despite a staff of people to tend to him, I remained at his side for at least 14 hours a day and frequently overnight. That was not a tough choice- it was exactly where I wanted and needed to be. I was the person he depended on. I wanted and needed to be that person. The tensions we had experienced largely disappeared. As he neared the end, it was all about love and how much we appreciated each other.
After Ben died, I heard kind things from so many people about what a good caregiver and how brave I was. I didn’t see it. More than that, I struggled with whether I really was a good caregiver if Ben didn’t think so, as he’d said in these worst moments. I wrote in a previous post about losing my identity, and this was one way it surfaced. I have come to realize that there was a Ben and Abby before ALS and a Ben and Abby after ALS, and in some ways they were not the same. Our relationship shifted from husband to wife to patient and caregiver. There were fears, physical and emotional pains, and challenging circumstances that brought out the good but also the bad sides of both of us.
“You poor, simple fools. Thinking you could defeat me. Me! The mistress of all evil!” Maleficent, Sleeping Beauty
As I reflect on the experiences and the related feelings and emotions, I see that it is so important to remember not to focus on the negative people and personalities, or even on the individual events. Stress, caregiving, and impending death are all things that cause tension and impact on our interpersonal relations. Vilifying people only deviated from the truly and painfully unsolvable problem.There was only one true villain in our circumstance, and that was ALS. While we could not defeat the disease, we could defeat the ugly feelings. Despite the struggles, and though we could not always acknowledge it while immersed in the experience, Ben’s and my relationship and love actually strengthened throughout our ALS journey. I choose to embrace the love that I was fortunate to receive and to give, without forgetting the realities of the big picture within the trajectory of our experience with ALS.
If you are a caregiver struggling with relationship issues with your caree, please remember that it’s been more than four years since Ben left this world, so I’ve had time to gain perspective. It is not as simple when you are in the midst of the situation, but please try to what the villain really is and open the lines of communication, filling them with love, even if that includes expressions of frustration. Cut each other slack- it’s okay and to be expected that nobody is always going to be at his or her best, even in the best of times. It has taken me a while to get to a point where my strongest memories are the beautiful times we had before ALS and the beautiful aspects of caregiving when the most powerful feeling was profound and boundless love.
2011- It’s a Small World allows a wheelchair to board the boat, and since that was so easy (and, ok, there are not long lines) we road it frequently! YAY! I choose to remember the love!
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.
If you’ve followed my recent posts, you know that February is a difficult month for me, with several anniversaries. My dad’s birthday was February 15 and day he died was February 13. Ben’s birthday was just two days ago. Disney died on February 7. And now, today, February 23, is the day my Grandma, Dora, died. Since her birthday is coming up, and things have been rough with these milestones, I want to respectfully acknowledge this date and my love for my grandmother, but I will wait until March 5, her birthday – at least a happier date – to share more about her.
I grew up in a house with Grandma. I was with her in that house when she succumbed to cancer. We were extremely close, knew the best and worst of each other and loved each other unconditionally.
There’s nowhere you could go that I won’t be with you. –Gramma Tala, Moana, Walt Disney Pictures 2016
Grandma is a part of so many memories, and of much of who I am, and for that I am grateful. Just as Gramma Tala told Moana, I know that my Grandma watches over me, proud of my baking and my love of fashion and delighted that I always talk about her importance in my life. Sometimes it makes me sad that all of the people I loved the most are carried in my heart instead of actually here, but I still feel fortunate to have known so much love and it’s a comfort to know that they are always with me.
I am thinking of you today, Grandma. You are always in my heart and I love you and miss you.