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!
Aunt Eleanor with our Standard Schnauzer, Dulcie. Ellie was never a huge dog lover until she met Dulcie.
Today is my aunt Eleanor’s 92nd birthday. Unfortunately, due to COVID19, I was unable to visit her in the nursing home. She wouldn’t know, but I do. Ellie has Alzheimer’s disease that has progressed to the point where she does not really speak at all, though she does seem to understand some of what is said to her. It’s hard to imagine her so isolated at this time. It’s been hard to visit her for the last several months, too. Her eyes stopped lighting up when she saw me, though she smiled sometimes when I talked to her. I believe that her memories of me are floating somewhere in her mind, or I let myself believe that to cope with my profound sadness. Last year, I had the perfect moment when I handed her a Mickey Mouse birthday card and asked if she remembered him- she smiled. Disney magic! Pixie dust!
Although I have never been her caregiver, I like to take this time to honor her here. Perhaps if you are a caregiver or are close to someone with dementia, you can relate to my experience. We were so close and she has influenced much of who I am. Ellie was the person who took me to the theater and ballet and inspired my love of the arts and of travel. Ellie took me to book signings when I was young, and I was always thrilled to meet famous and wildly talented people. Now, attending book signings is one of my favorite activities. For a long time, after her Alzheimer’s advanced and she could no longer accompany me, I got books signed for her. We looked at the books together, which she enjoyed despite the changes in her memory, and I enjoyed because it let me step back in time and relate to her in a way that transcended the Alzheimer’s. I remember how excited I was to bring her a children’s book written by Wendy Wasserstein. It was about a girl whose aunt takes her to her first musical. When I handed Wendy the book to sign, I told her that my aunt Ellie was like her book’s Aunt Pamela. She smiled and inscribed the book, “To Eleanor, who IS Aunt Pamela.” I am tremendously proud of my collection of signed books and CDs, and proud to honor the relationship that I have maintained with my aunt.
Ellie and I at one of my birthday parties.
I tried to maintain our favorite activities and took her to the theater even as her Alzheimer’s progressed. I once took her to a Yiddish theater production where they gave out pickles at intermission. It seems that she immediately forgot the play, but she told people she had pickles and it was really fun. I wonder if her mind drifted back to her childhood in Brooklyn. I felt like that was still a good memory for her, and I was glad that in the moment, she enjoyed sitting through the show. After spending another day at the theater with her, I took her home, and when I got home there was a panicked phone message from her asking if we were supposed to see each other that day. She had completely forgotten the day. I could only reason with myself that at least while we were at the theater she enjoyed watching the play. I stopped taking her when she seemed to not have as much fun because she was easily confused and disoriented. It would have been selfish to keep trying to keep things the same when things had changed and I had to accept it.
Ellie is the remaining relative to whom I was closest and with whom I spent a lot of time. It feels somehow disrespectful, but I realize that in many ways I am grieving her loss. Although she is still physically here, our relationship is not the same. It hurts to see her and her largely diminished quality of life. During the last few visits before COVID19, I left in tears. People sometimes ask me why I visit her if she doesn’t know I’m there and it upsets me, but she’s still here, and maybe somewhere in her mind, whether or not she can express it, she is happy to see me. I like to think so. I know that I need to see her. She is always in my thoughts and I often think about her all alone at the nursing home during these crazy times. I’ve heard through my uncle, her brother, that the facility says she is well- at least physically.
Ellie was a Spanish teacher and although my career has been varied, I have been walking in her footsteps for the past sixteen years. Sometimes, when I am in class, I see so much of her in my mannerisms and the rapport I have with my students. Today, I can’t help but think of the beautiful song Remember Me from Disney’s Coco. She would have loved it. I’ve put the song clip and lyrics here. The film dealt so beautifully with aging, memory loss and death, conveying that our loved ones are always in our hearts. With that in mind, I will spend this evening trying to think of all of the wonderful memories that we shared. Happy Birthday, Ellie.
The lyrics from the song “Remember Me” were very emotional.
Remember Me Lyrics from Coco
Written by Kristen Anderson-Lopez and Robert Lopez
Performed by Miguel, featuring Natalia Lafourcade
Remember me
Though I have to say goodbye
Remember me
Don’t let it make you cry
For even if I’m far away I hold you in my heart
I sing a secret song to you each night we are apart
Remember me
Though I have to travel far
Remember me
Each time you hear a sad guitar
Know that I’m with you the only way that I can be
Until you’re in my arms again
Remember me
With all the talk of COVID19 and debates about the reopening of Walt Disney World, it’s nice to have something, and someone, to celebrate. Time has sort of stood still, and it’s hard to remember the date or day of the week, but I realize that it will soon be the end of the school year, followed by the anniversary of when Ben went into the emergency room and everything changed. It’s never been my favorite season- I hate the heat- but now there is the added set of memories. Also, a quarantine that’s being lifted in some places in a way that gives me little confidence. I definitely feel a certain level of anxiety, but as Dory taught me, I just keep swimming. Seems a perfect time to think about the fun and laughs we shared with Donald, even in the more difficult days.
I lose myself in the photographs, which bring tears of joy and sadness. Donald was always so much fun at the meet and greets. And, being a Spanish teacher, I did especially love when he was at the Mexico pavilion at Epcot.
I share these photos because photos and memories have played such an important and positive part of my dealing with the rough times of watching Ben decline as his ALS progressed, and dealing with grief. It does not mean that I don’t get upset or lament the times we will never have. But, I also think about how lucky we were to share this love of Disney that always shed much needed pixie dust on our lives. Donald is part of those special memories that comfort me. So, with gratitude and joy, I say Happy Birthday to Donald Duck.
Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. And, the truth is that when my mom was alive, every day WAS Mother’s Day. We were so close that we did not need an actual holiday to celebrate that fact. After I lost them, I can’t say that this holiday was like other milestones in terms of evoking much sadness. There was a feeling of not belonging, and the sting of realizing that I didn’t have the close and unconditional love of family anymore. Yesterday, I saw a lot of people carrying flowers and celebrating the occasion, albeit a day early. It hurt more than it has because I realized that I have lost all of the people whom I had celebrated throughout my life. I never forget all of the love that I currently have in my life, but there are times that I don’t like to face that the people I loved the most only exist in my memories now.
I think about the importance of mothers in Disney films. Often, they are not present, having died at some point in the childhood of our favorite characters. Who can forget the pain of Bambi’s realization that he has lost his mother? The power of a mom’s life remains steadfast in the lives of our beloved characters. The films show us that people we love and lose stay close in our hearts. This is such an important message for children who are caregivers and are grieving. I previously shared this clip from Disney’s live action Cinderella, where Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it and they must honor her. This scene touched my heart. Frankly, I couldn’t imagine living after she died. I have learned to cherish my memories that keep my mom’s spirit alive and honor her. I get my childlike enthusiasm from her and, I believe, my natural caregiving skills, which even extend to my students. Of course, I embody her love of Mickey Mouse and all things Disney, but I hope that in some small way I have followed her example as a person. I do know that she is always with me. But, as I have also said before, as fortunate as I am, sometimes memories aren’t enough. Today kind of feels like one of those days.
Grandma and I were also very close. From the time I was a child, I was in awe of Grandma and her elegance. I loved her sense of fashion. She had a wonderful way of putting together colors and fabrics and styles. I still have some of her clothing and jewelry. The best shopping I ever did was in her closets and drawers. When I’m feeling lazy about dressing up or putting on make-up- it happens rarely, but it happens!- I hear her warning me that I never know who I am going to meet and I should always look my best. Clearly, she was hoping for a nice, Jewish Prince Charming. My fairytale was not quite exactly her idea of the “tale as old as time,” but Grandma always seemed to understand that I danced to my own beat. Sometimes we frustrated each other, particularly when I challenged her ideas of an ideal life. But, we had a special bond and an unconditional love for each other.
Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.
Grandma had four brothers and a sister, my great-aunts and great-uncles, and I loved them all dearly. I loved spending time with my great-aunts and great-uncles. Losing Grandma and my older relatives left a huge void in my life. However, through our loving relationships, I developed a tremendous appreciation of and compassion for elderly people that I have to this day.
Grandma was very artistic and I inherited her abilities and passion for crafts. She crocheted many aphgans and sweaters, skirts, dresses and ponchos. I remember choosing wool colors with her and how each item had to represent the gift recipient, yet had to be timeless and classic. I can see my own shifting tastes as I look at my childhood aphgan in its pastel colors and then the gray, maroon and cream colors in my college aphgan. I remember waking up in the morning covered with the squares she made while I was asleep. My dollhouse and dolls even got aphgans! I still have many things that she made. They hold such beautiful memories of time spent watching her and learning how to crochet. Eventually, she helped me to make an aphgan of my own. Ben used it often. Grandma’s talents extended to the piano, and she inspired me to learn how to play. I never played as well as she did, but she helped and encouraged me to play, and I’ve kept some of the sheet music.
When I was a caregiver juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as Grandma, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times. She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.
My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.
I realize now that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after Grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with Grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles. I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. My grandma did not want to be cheered, and I understood that. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. And, as in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.
When Grandma was ill, I helped with her caregiving, and, although I was not her primary caregiver, I was the one she usually relied on for comfort. At the same time, although I was in my thirties, she wanted to protect me from the fact that she was dying.
As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. So much who I am and what I do reminds me of them. You won’t be surprised that one of my favorite memories is when my mom called me from Walt Disney World exclaiming, “Abby, I met Mickey!” Another was many years later, thinking about my grandmother’s laughter when I called her from Walt Disney World to tell her that I had seen Mickey Mouse. Every time I bake I feel Grandma with me, and she is a part of all of my creative and artistic endeavors, as well as my fashion choices.
Making humentashen is a tradition that started a long time ago!
Ben and I had no children together, but he had three daughters, so I suppose I can say I was a stepmom, though I only had a brief relationship with one daughter that I believed was closer than it turned out to be. I would like them to have been there more for their dad, but I knew that interfering would have added more tension to Ben’s already stressful life. I made no demands and have never had any expectations of them. It’s a shame, because I would have loved to be an active stepmom and would still like that.
Now, I am a devoted mom to my cat, Tinker Bell, as I was to Disney and Tiffany. My mom- well, my whole family- loved our pets, so their influence was present even as I cared for Disney and Tiffany as they coped with several illnesses. Today, as on most days, she is curled up next to me, napping and then waking up to chat and, I like to imagine that she is saying, “Happy Mother’s Day!”
My mom and our Standard Schnauzer, Dulcie. Miss them both!
On Disney’s “Gotcha Day,” February 18, 2019 at NYC’s Meow Parlour
Merida, from Disney’s Brave summed it up so well when she said, “I want you back, Mommy!” There is not a day that I don’t think of my mom and Grandma. I am proud to honor them on Mother’s Day, though in truth, I celebrate, treasure and miss them always. I wish a Happy Mother’s Day to mothers of all creatures, great and small, human and otherwise.
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 remember 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!
