Ben liked scooting through the princess tower at the Disney Store in the Palisades Mall, NY!
Today is the 30th anniversary of the Disney Store. Who would think of the Disney Store as a romantic date idea? We did, and that is exactly where Ben and I began our relationship. When we started spending time together, we always took a stroll through the Disney Store. We had so much fun looking at the toys and quizzing each other on Disney trivia. The flagship NYC store on Fifth Avenue was a special destination on our dates and we always looked forward to seeing new merchandise and exclusive NYC items. Ben knew that Disney was a definite way to my heart, and he expanded my Disney collection by many, many things! And, he always scored points by suggesting a walk to the flagship NYC store on Fifth Avenue. I miss that store- it was quite beautiful. But, wherever we traveled, whenever we found a Disney Store, we were happy shoppers!
I think that my favorite memory of the Disney Store was walking through the flagship location one day and hearing, with great excitement, “Abby, look, it’s Piglet and his best friend, Pooh!” Ben had spotted the figurine in this picture.
Piglet and his Best Friend Pooh! A very special figurine with very sweet memories.
I laughed as he caught himself and jokingly lamented that he was macho before he met me (not so macho, trust me!) He later got it for me as a surprise and I treasure it for those memories. From that point on, we would always exclaim, “Look, it’s Piglet and his best friend Pooh!” whenever we spotted things with these two best friends. This figurine and memories of our sweet times at the Disney Stores always make me smile because it is a sweet reminder of this man I loved who was such a romantic and such a child at heart. It’s nice to think back to the very early, pre-ALS days of our relationship.
A Valentine’s Day gift from Ben with Piglet and his best friend Pooh!
I was excited to see the live action Beauty and the Beast on its opening weekend. Beauty and the Beast was a special film for Ben and me, so I knew it would be emotional to see it without him. I tried to see it through our eyes, as if he was sitting next to me. Sometimes that made it easier, sometimes it made it harder. When I love an animated film, as I do Beauty and the Beast, I worry that the live action will disappoint. It did not. Beauty and the Beast was absolutely spectacular, with excellent casting. I was captivated. And, at the end, I could feel Ben smiling. I, of course, was a puddle of tears!
In the beginning of the film, Belle’s father, Maurice, sings a lovely little song with these lyrics:
How does a moment last forever? How can a story never die? It is love we must hold onto Never easy, but we try Sometimes our happiness is captured Somehow, a time and place stand still Love lives on inside our hearts and always will
Here is the music clip:
Beauty and the Beast (2017) Walt Disney Pictures Pictured: Kevin Kline (Maurice) and Emma Watson (Belle)
These lyrics touched my heart, so simple and yet so profound. I know that Ben would have handed me tissues knowing the tears would flow. But this is the magic of Disney. At the heart of the whimsy and fantasy lie our deepest emotions.
I believe that these lyrics beautifully capture the thoughts of caregivers and those grieving the loss of a loved one. In caregiving, I grieved the loss of the life we had. I grieved what ALS took away from Ben and from us. I grieved the relationship we had as it shifted to that of caregiver and patient. We clung to memories and those brought a mix of pain and joy. And, we both lived with the knowledge that Ben was going to “leave,” as he referred to dying.
In grief, I have relied on the memories and the love that we felt. The heartache is there, but as the song says, “it is love we must hold onto.” I write so often of the importance of the memories that keep Ben in my heart. Love and our stories will always keep him there, along with my parents and other loved ones.
Early in our relationship, Ben gave me this frame with his own picture inside.
I immediately got the soundtrack to the film, which I also heartily recommend. And, although it makes me cry, I keep listening to this song and the longer version, performed by Celine Dion. Just like “One Dance,” this song struck a chord (pun intended) within me! Sometimes I am caught off-guard by overwhelming emotion and at other times I just need to immerse myself in the grief and have a good cry.
Music and lyrics were so important to Ben. I believe that he would appreciate how the lyrics of this song spoke to and moved me, and how they confirm that he will always live on in the song that was our love and life.
As for the comparison to the original, animated version of the film, I love them both. When I came home after seeing the new version, I immediately watched the Blu-Ray of the animated version. It remains dear to my heart. I don’t think they detract from each other in any way. In my opinion, they are both wonderful. I will enjoy watching them both on Blu-Ray!
I told Beast that he was much more handsome in person!
To say that caregiving was difficult is no grand revelation. In fact, it’s a grand understatement. I’ve written about it and will continue to do so, to share what the experience is like and to sort through my feelings, with the hope that it will comfort, inform, validate or inspire others. Since ALS is a rare disease, I feel especially compelled to share with people what is involved in this disease, sometimes from my perspective, and when I can, from what I observed about Ben’s perspective. My most profound revelation has been that as much as I lost myself while caregiving, I was also the most myself.
In bereavement support groups, I found that some participants could not get far enough away from caregiving. They were concerned about pursuing new relationships for fear of having to be caregivers again. I understand that, but contrary to my support group friends, I actually missed caregiving. Although, obviously, I would never wish for someone I would become involved with to suffer, I don’t think I would run away from being a caregiver again. Despite the ugliness of disease and the sadness and frustrations, there was something uniquely beautiful in caring for my dad and Ben during their journeys from this world. Although immersed in day-to-day difficulties and unexpected crises, I thrived when I was focused on ways to give them joy, to make them comfortable, to see them smile.
After caregiving, I felt like I had no purpose. People said it was time to take care of myself. That might have been a good idea, but I didn’t especially like it. I prefer taking care of others. I did catch up on doctor appointments. I also resumed favorite activities like going to the theater and seeing friends. But, I was lonely and lost. Everything was a reminder of my dad and Ben. I came home and had time to do things, but I had no focus and just floundered. Part of it was grief. I have lost many people close to me, so grief is not a new feeling for me. I have learned to co-exist with it and to integrate those feelings into my life. Despite the emotional roller coaster, I love the good memories and I do not underestimate how fortunate I am to have them.
As I began to redefine myself and the world around me, I seemed to cling to my role as a caregiver. True, it was a constant struggle that could be disheartening and maddening, and, in the end, I could not save Ben or my dad. But, it was also deeply loving, giving and nurturing, in a most special and compassionate way. Successfully caring for them gave me an incomparable sense of pride and purpose. Time to think and reflect on the caregiving journey enabled me to embrace that, as confusing as it was.
Walt Disney said, “We keep moving forward, opening new doors and doing new things because we’re curious, and curiosity keeps leading us down new paths.” I think that’s true. Some people have said that I remain too connected to Ben to be able to move forward. Some say that I am staying in the past by constantly revisiting caregiving and grief. I don’t believe that. Ben and my dad, and really, all of my loved ones, will always be with me in my heart. But, I have learned a lot about myself through my experiences and now, curiosity and determination are propelling me to use what I’ve learned in positive, compassionate and creative ways as I follow new paths in my own journey. Here are some of the doors I have opened:
Blogging on Pixie Dust For Caregivers was the way that I started to reconcile my feelings about caregiving and grief. Actually, I had long been collecting Disney quotes for my own inspiration and consolation after Ben’s diagnosis. As it turns out, my experiences, combined with Disney things that inspired me, also inform, comfort and motivate others. It is a huge gift to know that. It’s a different kind of caring, but it’s caring nonetheless.
On Facebook, there is a group of lovely people who either have ALS or are caregivers of people with ALS. I wish that I had thought to look for this kind of support when Ben was here. I want to be a resource or compassionate shoulder for people if it’s helpful. Likewise, it is healing for to me to hear about the experiences of other people dealing with ALS, as patients or as current or former caregivers, because even a year and a half later, I am still trying to make sense of so much about my experience with Ben. The dialogues in this group are fascinating, thought-provoking, and heartbreaking, but also heartwarming. Twitter (@PixieD4Caring) has also presented a wealth of information and opportunity to interact with other caregivers. I do plan to expand the resources section of PixieDustForCaregivers.com.
Education and Professional Development Caregiving.com offers a certificate program in caregiving consulting. Though I currently focus on my blog and informal interactions, I enrolled in the program and I love the coursework, chat group discussions and strategies for providing various types of assistance and emotional support. I find that it informs my writing and direction. Other students in the program are embarking on wonderful projects as well. Through the certificate program, I was invited to be a presenter in a virtual performance on the stages of caregiving. Click here to watch this engaging and interesting video. I also encourage you to visit the web site to learn about the certificate program, and to discover the vast number resources available there.
I am grateful to have kept in touch with some of the people who helped Ben. In talking with the social worker from my local ALS Association, I learned that their office conducts some events for children who have a parent with ALS. As hard as it is to comprehend ALS as an adult, I cannot even fathom how a child processes watching a parent succumb to the disease. I was eager to participate in bringing some joy and fun to these children. I volunteered to work with the ALS team to create craft activities for a kids day event for young children. It was a perfect fit for me, because my background is in arts education administration, which has always been my personal and professional passion. In fact, I met Ben when we worked at The Little Orchestra Society, where I was the Director of Education and planned many workshops for kids and families. Ben was responsible for finance and technology, but he was great with children and he liked to help me out.
The kids event was last weekend. It was a small group of children, which was nice and intimate, and the children decorated memory boxes and beaded friendship bracelets. They also drew and painted and explored the craft supplies at their whim. They ate pizza and ice cream and sang along to some Disney music. There was no talk of ALS among the kids, except for one child who asked me if everyone there had a daddy in a wheelchair. It was an afternoon of undivided attention and a fun time in the midst of a difficult period in their lives that they might not even be able to fully articulate.
Even the moms participated. They talked amongst themselves a bit about their husbands and situations, and it is a great opportunity to talk to someone also immersed in caring for someone with ALS, even if the progression varies, as it often does. I realized, from the looks on their faces that when I told them that Ben had passed away, that I was also giving them a dose of reality and the future that they may not have wanted to see. On the other hand, although it took time to reach this place, and I’m changed in some ways, I’m here, I’m smiling, I’m still full of love and I want to help.
During the workshop, I made myself a bracelet, including words that a couple of the girls chose for me. I added “believe” and “ALS.” “Special secret” is just that, so I won’t tell! “Peace” may have been a somewhat random selection from an emergent reader, but it’s meaningful to me because I wished for it for myself and for Ben. “Believe” is a powerful word for me because it encompasses magic and faith and hope that wishes will come true. I left the event feeling so positive, but also emotional from the combination of excitement of a successful event but the heartbreak of what the families are experiencing, and my own memories. I volunteered to work on more of these events for children and I hope to see these children again.
I would not have predicted that caregiving, which presented much inner conflict for me at times, would be the part of me that most resonates now in terms of who I am and who I want to be. Then again, as Timothy Mouse said to Dumbo, “The very things that hold you down are going to lift you up.”
It turns out that, for me, sprinkling pixie dust on others- giving support, compassion, joy and comfort- is very healing pixie dust for me!
“Heigh-Ho” from Snow White and the Seven Dwarfs (1937), Walt Disney Productions
I was surprised to learn that the lyrics to this most popular Disney song from Snow White and the Seven Dwarfs are “It’s home from work we go,” rather than “off to work.” Apparently, this is a very common error! There is a point when the dwarfs do sing those lyrics, but not during this iconic scene.
I thought about “Heigh-Ho” and the seven dwarfs when I learned this week that as of the 2018 school year, my public middle school will be closed. Amidst the challenges currently facing public schools, and having been through a school phase-out before, I am trying not to get too frazzled. I’m not exactly singing my way to and from school either.
The news about my school had me reflecting on my time spent there. Ben was diagnosed with ALS just before I entered this school. At the same time, my dad was fighting cancer. I was the caregiver for both. They were going through their journeys and I was going through one of my own, as a caregiver and as a daughter and a wife who was watching the decline of the people I loved while maintaining a full-time teaching job.
As a caregiver, leaving home and heading to work every day was not easy. Instead of “Heigh-Ho,” there was a cacophonous chorus of guilt, worry, anxiety and frustration. Managing caregiving and career is a delicate and stressful juggling act.
Emergencies requiring that I had to leave school began shortly after Ben’s ALS diagnosis. I have been very fortunate to have a principal that is understanding and supportive. My principal either covered my classes or arranged for coverages. He also allowed me to take days off to go to Walt Disney World with Ben for Halloween, something I promised Ben that I would do for as long as he was able to travel. There were many days that I missed school to accompany my dad to the Emergency Room, and there was a period of Family Medical Leave as well. There were days that I had to miss school because Ben had a difficult night or morning. In the middle of the night I might have had to rush to get Ben onto a commode or help him get comfortable because breathing was difficult. A good night’s sleep was a luxury. At times, I broke down in tears because I was overwhelmed and exhausted. I know Ben felt horrible and that made me feel horrible and guilty, because it certainly was not his fault. While my dad and Ben were unquestionably my priority, I did worry about jeopardizing my job. Thinking about my future alone, and when Ben’s was so grim, made for a lot of sadness and guilt.
When Ben was able to walk independently, he would text me at school when he was awake and at his desk. If he stayed in bed late, because he felt safer there, I might not hear from him until around 2PM. One day, I had not heard from him by the end of the school day and he didn’t respond to my texts. I left school in a complete panic. I arrived home to find him completely fine and unharmed, but lying on the floor, where he had slid from the bed when he tried to stand up. He’d been there for almost five hours. He was good humored about it, and was kept good company by our cat, Disney. After that, he sometimes preferred to stay in bed most of the day and stay awake most of the night, knowing that he could call me if there was a problem. He also wore a cell-phone around his neck because, early on, he refused to get a medic alert button. I ran home when called me if he fell and could not stand up, or he could not get off the toilet. It is not easy to lift someone who cannot help you at all. Once, after a few hours of my not being able to get Ben off the ground, my principal even offered to come uptown to my apartment to help me lift him.
When Ben’s ALS had progressed to the point where he was afraid to walk by himself, I woke up earlier than usual and got him dressed and either walked him to his desk or transferred him to his chair and wheeled him to his desk and positioned his computer mouse under his hand. I made him coffee and oatmeal until he could no longer hold the cup by himself. Lastly, I positioned his medic alert button near him so he could access it if he needed to. I kissed him good bye, took a deep breath and hoped for the best as I closed the door behind me.
In 2014, Ben finally agreed to get a home health aide for a few hours a day during the week, but she did not arrive until about an hour and half after I left for school, and she left about an hour before I got home. In the morning, I got him into his chair, strapped his medic alert button to his hand and left him to watch television in the bedroom until she arrived. After she arrived and got him situated at his desk, he sent me a text that everything was okay. There were times when she contacted me that subways were not cooperative or she was running late, and I alerted Ben by calling our home phone and leaving a message that I hoped he would be able to hear, although he could not respond.
My days at school revolved around texts and phone calls to my dad and Ben to make sure they were alright, and also to their medical professionals for follow-up. Though I did walk around with my cell phone, in case I was needed, teaching was a good distraction. When you’re teaching you have to be “on” for your students. I was dedicated to my students and to my family. The students knew that my dad was ill and they knew when he died, and I taught by example life lessons on compassion and responsibility. Until quite recently, I never shared anything about Ben because I could not emotionally handle a lot of questions or reactions.
After a day of school, there was no cheerful marching to “Heigh-Ho, Heigh-Ho, it’s home from work we go.” OK, so Grumpy was never cheerful. I was not exactly Grumpy, but I would have been the eighth dwarf, Anxious.
Ben (pre-ALS) and Grumpy, Walt Disney World, 2001
I texted Ben when I left school to see if he was okay and if he needed me to run any errands. There was rarely dawdling, strolling or window shopping. On the occasion that Ben was feeling secure, if I had the energy, I ran to the nearby Sephora to try nail polishes. It was my whimsical escape. It’s important to have those.
There were times that I would receive a text from Ben on my way home that he spilled something or he needed to use the commode, but I could get home only as fast as a subway train would allow. This is just one demoralizing aspect of ALS, and other diseases, of course, and the only way to get through is with understanding and love. Humor helps a lot, too.
There was an instance after school, when I was visiting my aunt who has Alzheimer’s Disease, and I got a call from the medic alert company that the alarm had been activated. They said that they spoke to Ben from the intercom and it seemed he pressed the button by accident, but they wanted to notify me. I tried calling and texting Ben, but he did not answer. I grabbed a taxi and ran home in a frenzy to find him calmly sitting at his desk, wondering why I got so upset, since he had spoken to the medic alert company. Ben’s dexterity was compromised and the mouse got away from him, so he could not reply to my text messages. I simply hugged him, not knowing if I should laugh or cry. I did both.
As soon as I opened the door to my apartment, my hands-on caregiver responsibilities commenced, even though the reality was that I was also caregiving from school. After a day of teaching, interspersed with texts and phone calls, I needed some down time and it was not going to happen. Ben preferred me to be his caregiver, so, rather than ask his home health aide to do some tasks, he often waited for me to come home. It was sweet, but it was difficult. He wanted me to stop working, but that was not possible. I was exhausted and probably depressed, and sometimes became aloof, doing what needed to be done but keeping to myself. To this day, I feel bad about that, but I’ve also begun to come to terms with the fact that our situation was happening to both of us in different ways and that although Ben’s needs were my immediate priority, my feelings also mattered.
Not sure who the real Dopey is!
In the evenings, I prepared Ben’s dinner, which was always a culinary adventure with the Vitamix. As his ALS progressed, chewing and swallowing became increasingly difficult, but Ben wanted to postpone getting a feeding tube. His foods had to be pureed and almost bisque-like in consistency. I experimented with all sorts of sauces, and incorporating mashed potatoes that he loved, and we made it as fun as it could be. I admired how hard he pushed himself, but when he could no longer hold utensils or a soup cup, I fed him. He began to lose energy for and interest in eating, so he was losing too much weight. I made and fed him a daily ice cream shake and a nutritional supplement drink for extra calories. For the rest of the evening, we watched television and used our computers. I helped him wash up and dress for bed, transferred him to the bed and got him comfortable. With a bad back of my own, by the end of the day, I was exhausted, sometimes in physical pain, and not always in the best mood because of it. On days when Ben was feeling down, uncomfortable, or scared, he was critical and harsh. At these times, it was hard to feel loving and we just followed our routines. Sometimes we cried, out of sadness, anger or frustration. The bad feelings happen, and it has taken me a long while to accept that we are all human and just like inInside Out,you can’t just push sadness into a corner. But love was there, and it kept us going.
On weekends, I was the sole caregiver, and leaving school on Fridays came with a mix of excitement and dread of what might happen. There was no TGIF. Before my dad passed away, my weekends were split between traveling to see him and taking care of Ben. Fortunately, at that point, Ben was more comfortable being alone for several hours. When it was just the two of us, Ben was happy that I would be home all weekend, and that touched my heart, and I did treasure our time together, but at the same time, I wanted and needed to have some time for rest and relaxation after a 24-hour work week. Ben was torn, too, because he did want me to do things that I enjoyed, like going to the theater, but he resented not being able to go out, and there were times that he said, “If I don’t have a life, why should you?” To be honest, it still upsets me when I think about it, but I truly do understand it. It is hard to BE a caregiver, but it is hard to NEED a caregiver. In this situation, no one is really at their best. We were not great at talking about it, but communication really is essential.
After nearly a year of having a home health aide, Ben had decided, without discussing it with me, to let her go at the end of my school year, telling me that I should and would be his caregiver over the summer. This was something that had me quite concerned because of the physical and emotional demands, and logistics of doing things like grocery shopping and other errands. Frankly, I also resented that he felt entitled to it and took it for granted rather than talking to me about it, and he resented that I felt that way. In reality, he knew me and I knew myself well enough to know that I would have accepted the responsibility. Again, better communication skills might have helped us to better address this issue.
I began to describe my state of mind as “an inch away from a nervous breakdown.” Although well-intended and heartfelt, it was not helpful to be told to take care of myself. Sometimes that’s just not possible. Ben was dying. His needs were immediate and they were not negotiable. Telling me what Ben or I “should” or “should not” do became frustrating. However, all of this did teach me an important lesson: you cannot presume to know what is going on in someone else’s life or head, or within their own family dynamics, so it’s kind to ask how you can offer support and to be a shoulder to lean on, but you must tread carefully when offering advice, especially if it is unsolicited.
Timing was the sole good thing about when Ben ended up in the hospital with a respiratory crisis just a few days after the school year ended. If you’re thinking “Heigh-Ho-Heigh-Ho, it’s off to/home from the hospital we go,” that was not happening either. But, I was free to spend every day and many nights at his side in the hospital, still overseeing his care, and being the person he relied on for love, support and advocacy. With a BiPAP mask and then a tracheostomy, communication became more complicated, but since I was with him so much, I often had an easier time figuring out what he was saying. I kept my role as a caregiver even though he was surrounded by medical staff. It was an emotional summer. Neither of us was prepared or expecting to say good bye at this point because his progression had been fairly slow. He chose his path and I supported him.
In grief, people told me it would be helpful to return to my routine at school. What they did not realize was that caregiving WAS my routine. I was not returning to my routine at all. There were still no cheerful choruses of “Heigh-Ho.” Work was a painful reminder of losing loved ones and myself. But, I have in recent months begun to redefine myself, and caregiving is something that has become a part of me, whether through work with caregivers or volunteering with my local ALS chapter.
If you remember, the seven dwarfs worked in the mines. On our first visit to Walt Disney World after his ALS diagnosis, when we approached Mickey for our photos, it was clear that everything was not okay with us. On our way out, one of the cast members quietly handed me “a ruby from the mines” and said that he hoped it brought us good luck. I still have that ruby. It has served as a reminder to dig for the rubies- the positive aspects or loving care in caregiving- even when it is hard work.
Some of our rubies: There were days when we sent each other funny and silly texts, even when his dexterity became too compromised to use his phone. He found an app, Mighty Text, that allowed him to send texts from his phone through computer, and he used a virtual keyboard. There was also that absolutely incredible and romantic time that he surprised me by spending the day getting dressed and ready to take me to see “Beauty and the Beast-3D.” There were the mornings that he woke up to discover that I had decorated his desk or the apartment for a holiday. He looked forward to those surprises. Watching Ben struggle with ALS with such bravery and persistence, and a zest for life, showed me new sides of him to admire, love and nurture.
I’ve said before that being a caregiver was the most challenging, frustrating, and sad experience, and yet it was also the most loving, important and rewarding experience of my life. It is a heartbreaking but precious gift to bring comfort to someone you love, particularly when that person is facing death. I will always treasure the profound closeness we shared throughout that time, and, despite the challenges, I know in my heart, without a doubt, that I would be their caregiver all over again. That’s the biggest, most invaluable ruby of all!
Today, February 21, is Ben’s birthday. As I often do, I have been reminiscing by looking at old photos. While looking at our most recent birthday pictures, I was reminded about his table that broke over the holidays and, in so doing, broke my heart. That ugly, shaky table held many birthday cakes and other celebrations. I’m glad to have those pictures. I’ve put together a video of photos from some of these occasions, and, of course, some Walt Disney World photos. Some were taken when he had ALS and some in the pre-ALS days. The love was always there, so I embrace all of the memories.
In the background, you will hear The Beatles’, “Happy Birthday.” Ben woke me up with that song every year on my birthday. Now, I am playing it for him.
While it’s emotional to make these videos (click here for the one I made for my dad), I also find it comforting to revisit beautiful memories. It is a good way to focus my attention when I’m feeling down and a positive way to deal with grief. It doesn’t mean that it doesn’t come with tears, but tears are okay. So are smiles.
No candle on a cake now, but always wishes that he is comfortable, and running, singing and eating to his heart’s delight. And, wishes for a cure for ALS, because wishes do come true, even if, as Cinderella’s Fairy Godmother says, “even miracles take a little time.”
When Ben proposed to me, he asked me to be His Minnie. So, I now say