Caregiving

ALS And International Kissing Day Without Kisses

ALS,Walt Disney World

A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

Today, July 6, marks the fifth anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center.  For me, this will always be thought of as the date when everything changed. Over the years, I have learned to go with the flow on milestone dates, but this particular day has remained a terrible and vivid memory filled with tears. How ironic it is that today is International Kissing Day, because on this date Ben was connected to a ventilator and his mouth was covered with a Bipap mask. For the next few weeks, before he agreed to a tracheostomy, our way of kissing was to blink our eyes tight and then I would smile and throw him a kiss- he couldn’t use his arms or hands to throw one back. In these days of COVID19, I relate to people lamenting not being able to hug because I missed Ben’s hugs so much as his ALS progressed.

It’s still morning and I have been replaying that day five years ago, when we woke up and Ben said he could not breathe. He was always nervous about breathing, so I stayed calm even as he followed my direction and blinked to indicate that he wanted me to call 911. I think of how time stood still as we waited for the ambulance, not knowing what would happen. I called and emailed his doctor and remembered that he had once told us that if we had to call for am ambulance, they would take us to whichever hospital they thought closer. Fortunately, EMS agreed to take us to Mount Sinai so we could be close to his doctor, who met us at the ER and, always kind and comforting, stayed with us till Ben was situated, emailing me throughout the day and coordinating with Ben’s ALS team. I remember that in the midst of the frenzy of an Emergency Room, it did not even occur to me that I could lose Ben at that time. I was kept very busy as the health care proxy and the only family member present. I didn’t have time to think. I didn’t even have time to be in denial. I just went through motions. I emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards his family, a couple of whom had lots of questions, absurd suggestions and judgments but had never been there for him as his ALS was progressing. I was surrounded by people but felt very alone. I talked to Ben but had difficulty reading his lips through the mask. We ended up in the ER for at least 36 hours waiting for a room, meeting with specialists, and in contact with his ALS team, all of which was overwhelming and exhausting. Ben slept a lot, and during that time I struggled with my emotions and guilt about the frustration that I had been feeling because I was so angry that, without discussing it with me, he let go his paid part-time caregiver and insisted that I be his 24/7 caregiver since I am a teacher and it was summer vacation. Now, summer had barely begun and here we were in a hospital. I shared all of this in a previous year’s post.

Five year increments always seem to be distinctive markers of time, so I can’t help but reflect on that. I wonder if five years should feel like more time has passed. This is my fifth time feeling the pain of this day and it is still debilitating. My only plan for the day is to await a delivery of shelving items to help me in my ongoing effort to organize my apartment. It’s already been a morning of tears, so it’s all for the best that I’m here and writing about my thoughts. Even organizing my apartment brings back memories of the chaos of this place when it was an obstacle course of clutter and medical supplies. I’ve significantly improved it- painted, re-carpeted, and added some new furniture, but the memories remain. I still think of my new dining table as the table that replaced Ben’s desk. I am listening to Ben’s favorite relaxation/new age music on his computer- something I could and will not replace because it was his lifeline. Today is not a day that I want to hear that I should make plans to distract myself, or should be proud of myself for carving out a new life for myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter. Today, my heart is stuck in that day. Unfortunately, COVID19 has unearthed a lot of those difficult caregiving memories and has added another layer of sadness to this time.

Summer has never been my favorite season because I dislike warm weather, and now summer is filled largely with the memories of Ben’s last summer. It’s an odd contrast to my being a teacher and eagerly awaiting summer break. I have, however, come to cherish my frequent summer walks in Central Park. I do look for signs that Ben is with me, and finding turtles there is an important sign that he is present and watching over me. I always bring some coins to toss into the fountain and make wishes (see my post on wishes), often shedding a few tears. Last week there was even a little turtle scampering through the fountain and I believe it was Ben sending a message that those wishes will come true! I must remind myself that summer memories also include the summer before his last one, when we had a most magical time at Walt Disney World. I try my Disney best to be optimistic even when I’m sad.

In my mind, July 6 may be International Kissing Day, but for me, it was the first day that I couldn’t kiss Ben. It was the beginning of the end. It’s an odd feeling that nobody else would even remember this date, and I wouldn’t expect them to. That does, however, underscore that when this crisis hit, it was just Ben and me. I was there for Ben, he knew he could rely on me, and there was profound love and trust.

I find myself wondering if I will always struggle on this day. I have learned that today’s fog will lift. I do and will continue to have many days where I remember recall the days in the hospital that, despite the devastation and horrible decisions, were filled with love, music and even laughter. Today is just not one of those days.

Walt Disney World, 2002
The pre-ALS days.

Happy Anniversary to Lady and the Tramp and the Hunchback of Notre Dame: Thanks for Perspective on Memories and Living

Today is the 65rd anniversary of the release of Disney’s Lady and the Tramp. It was always a favorite of Ben’s and mine. We actually loved to sing the “Siamese Cat Song”; in fact, I used to sing it to my first cat, Tiffany (but she preferred “Born Free,” to which she actually meowed along!)

A poignant quote came from Tramp to Lady, when he told her, “Aw, come on, kid. Start building some memories.” I am always drawn to quotes about memories because memories played such an important part of our lives when Ben was fighting his battle against ALS. Memories became increasingly significant to Ben, particularly as he became more homebound. He loved to look at our photos and videos from Walt Disney World and to listen to the theme park music soundtracks. We could do that for hours. It was my motivation for designing the photo calendars, throw, shower curtain and towel (click here to read more about them)– Ben was surrounded by our photos everywhere in our home. It’s nearly three years since he’s left and I remain surrounded by those things. They are a comfort for the memories the photos hold and for my memory of the happiness that I gave to Ben with those gifts.

Dessert at Tony’s Town Square Restaurant- The Lady and the Tramp-themed restaurant at Walt Disney World. The Lady and the Tramp drawings were done with caramel- pretty fabulous!

We were so fortunate to be able to visit Walt Disney World four times after Ben’s ALS diagnosis. Each time, we tried to recreate our favorite memories, attending our favorite shows and visiting our favorite attractions. We did, at times, lament the attractions that Ben could no longer ride. But, we laughed that we could take the “It’s a Small World” boat repeatedly because there was never a long line and we got a boat to ourselves. Ben’s attitude was amazing. He focused on what he COULD do and, thanks to the amazing Disney cast members, we could do almost everything.

Recreating memories was, however, a tricky endeavor. Given Ben’s physical changes, it had the potential to be incredibly fun or incredibly sad. However, we were so grateful to be able to return to a place that was so important and filled with joyful memories. At Walt Disney World, we were distracted by the excitement and caught up in the fantasy. Ben loved and frequently commented about that. Once home, when Ben looked at photos, he scrutinized how he looked and how his abilities had diminished from visit to visit. For me, looking at photos is sometimes filled with splitting my world into pre-ALS and post-ALS distinctions and observations. Still, more than the physical changes, I see the joy on his face.

Our final visit to Walt Disney World in 2014 was uniquely memorable, not only because we were not sure that we would ever get there again, but also because it was filled with the creation of new memories. Frankly, I was worried that Ben would be disheartened at not being able to do a lot of the things that we used to do. Also, he could not eat many foods, so going to the restaurants that we always loved might have been an upsetting experience. So, I organized several surprises- new and different  events that gave us the opportunity to create new memories. My plan was a resounding success, which makes me so proud and grateful. I wrote about our visit in a prior post, which you can see by clicking here.

Walt Disney World 2002, the pre-ALS days. We didn’t kiss over spaghetti, but we did kiss Eeyore!

Ben and I had 16 years and a dozen visits to Walt Disney World, all filled with wonderful memories. When I was the caregiver of my dad and Ben, those memories sustained me and took me from one Walt Disney World visit to the hope of another, and I lived vicariously through my friends, reading about their adventures on Facebook and occasionally, and proudly, posting photos of Ben and me at Walt Disney World or out in our neighborhood when he was still able to ride his scooter. Our friends did like to see him out in the world. I immersed myself in those memories for some time after Ben died. I know that some people think that this blog is a way to stay hidden in those memories and in the past, but the perspective I gain and thoughts shared with other caregivers in this writing process lead me forward.

Coincidentally, as I reflect on the importance of my memories, I realize that today is also the 24rd anniversary of the release of Disney’s The Hunchback of Notre Dame. I think about what the gargoyle, Laverne, told Quasimodo: “Life is not a spectator sport. If watching is all you’re gonna do, you’re gonna watch your life go by without ya’.” This quote holds an important message for me. I think that one of the most difficult things for me was when people told me it was time for me or time to take care of myself.  I don’t really like to put the spotlight on myself. It was particularly difficult to go out and be distracted and even somewhat happy, just to return to an empty apartment and reminded of the loss and alone-ness, as well as guilt for even trying to enjoy myself. I preferred to put my energy into helping Ben relive and create new memories and, after he left this world, I took pride and comfort in thinking about those memories. The truth is that I will always love to visit with my memories of Ben, the good and bad times. But, my memories don’t have to end there. I can delve into new adventures that will become a part of my treasure trove of beautiful memories. I do not have to live vicariously through other people.

The Hunchback of Notre Dame
1996 Walt Disney Pictures

A sadness looms over my summers because they represent the most difficult times in Ben’s battle, and ultimately when he succumbed to ALS. However, I suppose I have come to accept Laverne’s advice, proactively making plans to do things I love: travel to see my friends, take part in some animal adventures, do some volunteer work, and continue to work on my blog while formulating new ways to reach out to caregivers. This summer, due to COVID19, is a particularly odd one because I can’t help but dwell on what life would have been like if Ben was here. Being home so much of the time reminds me of the time that I was home with Ben and how I would have been even more reluctant to go outside now, for fear of bringing home any germs.

Although sometimes I do feel like more of a spectator in life and I get caught in fantasies of what I think I would like my life to look like without knowing how to proceed, I don’t want my life to go by without me. I don’t think that would even do justice to the love and belief in me that Ben and my dad had. I probably spend too much time with my memories. But, I do have those fantasies and dreams, which is a good indicator that I am invested in my future. I just have to find my way. I’d prefer not to be alone but maybe it won’t always be that way. It helps me to  find peace in the knowledge that Ben’s spirit will always accompany me as I follow my life’s paths, make some dreams come true and make new memories.

My photo collage calendar filled with wonderful memories and new events that will bring new memories. where Ben will be present in my heart

On Mulan’s Anniversary- Reflections on Caregiving and Who I Am Inside

Reflection
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?

grief,ALS,Disney,Christmas

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!

 

Happy Anniversary to “The Incredibles 2”- Elevating The Superpowers of Caregivers

ALS, The Incredibles,Caregiving,Caregivers,Walt Disney World

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.

ALS, Caregiving, The Incredibles, Disney, Pixar, Caregiving, Grief

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!

Caregiving and ALS: Recognizing the True Villain

Walt Disney World, Pirates,Fireworks,ALS,Halloween

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 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 needs, 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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, It's a Small World

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!