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!
“Cinderella” is celebrating a birthday today. The film was released on this date in 1950. She was my favorite princess when I was a child. She remains dear to my heart because there is more to Cinderella than what meets the eye. She had feistiness and determination, and also a loyalty to her father’s memory that let her tolerate the poor treatment by her stepmother and stepsisters and maintain her dignity. Cinderella knew the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect and power!
Cinderella knew at her core that, despite treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort. Now, as I work through grief, dreams help me to redefine myself and reshape my life. No one can tell me that dreams are not valuable and important.
It’s pretty cool to make dreams come true, too. Ben wanted so much to go to Walt Disney World as often as possible. That last trip we took, in July 2014, was a dream come true for him. It was a challenge, and I wished a lot for things to go smoothly. They went fantastically! We even had a Walt Disney World Halloween in July! Now THAT’s pixie dust and Disney magic at their finest!
Ben and I with Cinderella Walt Disney World July 2014
Maybe you didn’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be ok.
Cinderella, 1950 Walt Disney Productions
During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.
There is a song in the film, “So This is Love.” The song is sweet and romantic, and love is beautiful. In the rough times, it is easy to lose sight of those feelings. The thing is, when we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.
At the heart of the film is the song “A Dream is a Wish Your Heart Makes.”
A dream is a wish your heart makes When you’re fast asleep. In dreams you will lose your heartaches. Whatever you wish for, you keep. Have faith in your dreams, and someday Your rainbow will come smiling through. No matter how your heart is grieving, If you keep on believing, The dreams that you wish will come true.
I’ve always been a dreamer. I believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Fairy Godmother said, “Even miracles take a little time.”
Our Disney friends do a lot of wishing and dreaming.
Cinderella told us, “No matter how your heart is grieving, if you keep on believing, the dream that you wish will come true.”
Jiminy Cricket advises us that, “When you wish upon a star, makes no difference who you are. Any dream your heart desires will come to you.” He also said, The most fantastic, magical things can happen, and it all starts with a wish.” Jiminy Cricket
Longing to be human, Ariel sings her little heart out, “Wish I could be part of that world.”
According to Snow White, “Make a wish into the well That’s all you have to do And if you hear it echoing Your wish will soon come true”
Peter Pan wished he never had to grow up.
Aladdin’s was trying to decide which three wishes Genie should grant.
And the list goes on…
Wishes are funny things. We wish on stars, on ladybugs, on birthday candles, on shooting stars. As we grow up, some of us start to believe less, or not at all, in wishes. Personally, I think some people just won’t admit that they still make wishes! Think about how many times you hear someone begin a sentence with “I wish…” Maybe they aren’t being literal, but I think there is still that little part of all of us that wants to believe. For me, wishing is hopeful. You can call it childish naivete, but I’m fine with that. Wishes carry the faith that things will be okay. There have been times- especially when I was watching Ben and my dad struggle with their illnesses and I was also struggling as a caregiver- when I just needed to believe that my wishes and dreams could come true, despite what logic might have told me.
Walt Disney World Halloween 2011
Ben and I never made a point of going to the Wishing Well at Cinderella’s Castle during our many visits to Walt Disney World. And then he was diagnosed with ALS. With a diagnosis like that, you’ll find yourself believing in a lot of things! Ben was diagnosed in April 2010 and in May we headed to Walt Disney World, not knowing how the disease would progress. We headed right to that Wishing Well, and we returned each time we went there after his diagnosis. I emptied a purse of coins into that Well each time, wishing that his ALS would go away, that we could turn back time, that there would be a cure. Did it change anything? Did his ALS go away? No. The disease took away his abilities one by one- physical devastation for him and an emotional toll on both of us. And, our happily ever after was cut very short.
So, how I can say that I still believe in wishes? Because my heart needs to.
Halloween 2010 Walt Disney World
When we went to Walt Disney World for the last time, in July, 2014, we went on the Pirates and Pals Fireworks cruise, where we met Captain Hook and Mr. Smee and then took a boat ride with a very funny pirate to watch the “Wishes” fireworks show from the water. Ben loved watching the fireworks at Walt Disney World, and the display really was pretty spectacular from the lagoon. When the “Wishes” song played, as we listened to the words, we both cried. For a lot of reasons.
In our hearts, we both knew it would likely be our last trip to Walt Disney World. The progression of ALS varies from patient to patient, so although we knew the eventual outcome, we did not know where the journey would lead from day to day. We just wanted to be able to wish on those stars and have our dreams come true. It’s that conflict between being realistic and being hopeful.
Excerpts from the “Wishes” Fireworks Show
Star light, star bright,
First star I see tonight.
I wish I may, I wish I might,
Have the wish, I wish tonight.
Oh, a world of wishes,
A world where dreams come true.
So make a wish, see it through.
Dare to do what dreamers do.
Dream a dream.
Set it free.
Trust your heart.
We’re all just children,
Reaching for our dreams.
They’re shining high above us,
And even though it seems so far (so far)
We put our faith and hope on a shooting star.
You know, any wish is possible. All it takes is a little courage to set it free! A wish is a powerful thing—especially when it comes from the heart.
Remember, we must always believe in our wishes, for they are the magic in the world. Now, let’s all put our hearts together and make a wish come true.
Pirates and Pals Fireworks Cruise Party Walt Disney World July 2014
Ben loving the Pirates & Pals Fireworks Cruise.
I think one of the hardest things in life is feeling that there is no point in having faith in wishes and dreams. As Mrs. Potts told Chip in Beauty and the Beast, “You don’t lose hope, love. If you lose hope, you lose everything.” So, I keep wishing and believing that my dreams can come true. Without that mindset, I don’t think I could have gotten through caregiving and watching Ben and my dad struggle. I don’t think I’d be able to envision working through grief. We wished for a cure for ALS as we tossed our coins into the Wishing Well, but that wish did not come true, at least not in time to help Ben. Of course, as Cinderella’s Fairy Godmother said, “Even miracles take a little time.” I will wish for that cure until it happens.
For me, as I’ve written before, the pixie dust may be in the perspective. Ben and I did have some wishes come true. For four years, Ben managed pretty well with the disease. He did not want to lose his ability to walk, but he made using the scooter and then the electric wheelchair so much fun. With Ben zipping around, we laughed our way through the Disney Parks. Although traveling to Walt Disney World became more and more complicated, he handled it with a great attitude and with determination to have a wonderful time, and he did. We always said we wished we could go there more often, and after Ben’s diagnosis, we were able to go there four more times, which was quite a treat and a splurge for us. We relived beautiful memories, created new ones and had a lot of laughs, along with some tears. And, we had a lot of love that got us through very difficult times. So, maybe there was some magic in that Wishing Well. And maybe the true magic was the gift of seeing love, laughter and light in a very dark situation.
Princess Aurora says, “If you dream a thing more than once, it’s sure to come true.” So, I will keep wishing and dreaming and feeling the pixie dust. I hope you do, too, and I hope your wishes and dreams come true.
Quote from Mary Poppins Disney and Cameron Mackintosh Musical Based on the Film
Maybe I am still in new year, new thinking mode, but this quote resonates with me in a special way. I feel that I have opened a door and stepped out of intense grief. Caregiving for my dad and Ben, especially when I was juggling care for both of them- literally going between Long Island and my home in Manhattan- was exhausting, challenging and devastating, but it was also the most loving, meaningful and rewarding experience in my life. After it was over, I floundered. Grief has been hard, and it has been grief times two. I’ve spent this time with many lows, then highs followed by extreme lows, and now I finally find more balance. I am always careful when I say this, because I never want to convey that I’m “over it” or I’ve “moved on.” But, I think I’m learning to coexist better with grief. And I’ve been opening some new doors.
After Ben “left” as he called it, I was so often told that it is now time for me. Well, that was fine, but I was not exactly sure how to fill that time. I missed my dad and I missed Ben and I even missed the caregiving. If you’re immersed in caregiving and its ugly parts, it may be difficult to see how I missed caregiving, but you must realize that I am writing this after nearly a year and a half of losing Ben to ALS, and almost 3 years of losing my dad. Time, reflection, and perspective gained are important. Nothing comes easily.
Life as a caregiver was stressful, exhausting, and it certainly kept me busy and on my toes! When I was the caregiver for my dad, at one point I took family leave and traveled about five hours every day to visit him, first at the hospital and then at the hospice. During this time, Ben was fairly comfortable staying alone during the day, and we had friends who could help if needed. And, indeed, there were occasions when they were needed- sometimes he could not stand up, other times he fell. Not being there was very difficult, because I was wondering, hoping that Ben was taken care of, until I would get an update. When I was at work, I kept my cell phone with me at all times, in case anyone needed to reach me.
I probably don’t need to say that I was devastated by my dad’s passing away. We were very close and I had also lost my mom. Ben was also distraught by this loss. I think Ben lived in such denial of his ALS and its ultimate outcome, that losing my dad made it too real for him. Although his daughter stayed with him on the day of the funeral, that night it was back to caregiving for me. We were both sad, but I was too busy taking care of Ben to really reflect on my loss. And, I was worried about Ben being too preoccupied with death. I resented that somewhat, because I did need time for my own feelings, but it was not Ben’s fault that he needed help and his immediate needs had to be the priority. Emotions can always be dealt with later, right? Well, not really. If you try boxing up your feelings, they are going to show up in any number of ways, including attitude, behavior and physical ailments. If you’re a caregiver, please remember that you matter.
With only Ben to care for, you would think that life got easier. Unfortunately, his ALS was progressing. Ben was very reluctant to get additional home care. Some of it was due to his lack of acceptance of the progression of ALS. He told me that I didn’t do much for him, or have to do much, which was untrue and, since I want to be honest here, it hurt and upset me, and left me wondering if I was good at what I was doing. Ben was not entitled to home health aides through insurance. I missed a lot of days of work if we were up all night or if I woke up and he was not feeling well, or he felt uncomfortable staying alone. When he awoke one morning and finally admitted he was afraid to be alone, I stayed home from school and made a lot of phone calls, finding him private care for just a few hours a day during the week, which was some of the time that I was at work. We put all kinds of systems into place for him to contact me, including a medic alert system, texting me at certain times. He was still alone at times, so I ran home after work, where I was then on duty until I left for work the next morning. In fact, I was never really “off duty,” I was just not physically present at times. And, our systems were not fool-proof. He texted me through his computer and an on-screen virtual keyboard, and if the mouse got away from him he did not have enough range of motion to get it back. Also, his voice was not strong. Once, he set off the medic alert device by accident. They did speak to him through the system but they called me to let me know that he had activated the alarm but seemed fine. However, I did not get any response from him when I texted to follow up. I dropped everything and ran home to find him sitting at the computer, absolutely fine, but had had been unable to respond to me because he could not reach his mouse. A few more gray hairs for me!
Even when he was in the hospital, I remained Ben’s caregiver. I was with him at least 12 hours a day, and sometimes overnight. ALS is very isolating. Ben could not use a call button and it was hard for people to communicate with him. He depended on me, but he also took that out on me, which was all understandable, even if upsetting. I supported, advocated for and comforted him on on the ALS journey throughout his experience in the hospital. Looking back, continuing in my role as caregiver was necessary and helpful to the staff, but it also gave me a sense of purpose in the midst of a tremendous feeling of helplessness.
After a summer entirely spent in the hospital and concluding with his loss, I had to return to work (school) in just over a week. I was not prepared. People told me it would be good to return to my routine. What they did not realize was that it was not my routine. My routine at work involved caregiving. It was texting with Ben. It was being in touch with the doctors and teams who worked with him. It was coordinating with his home health aides. It was walking around with my phone. Many a day that I left school, I cried because I missed my rituals of calling my dad and saying, “I’m free!” and texting Ben to see if he needed me to run any errands.
I did not want my memories of ALS to define my relationship with Ben, but I found that I did define myself as a caregiver. I joined support groups where the people said they would never want to be a caregiver again. I, on the other hand, missed not the illnesses and their ugliness, but the caring in the caregiving.
Maybe as a teacher I am a nurturer, but caregiving is something I cannot let go of. I started this blog as a way of sorting out my own thoughts, but also with the hope of helping others by sharing my experiences and things that supported and inspired me. Of course, with me it has to have a Disney twist! I did not realize that I opened up a new door when I began to blog. In a way, through Pixie Dust For Caregivers I discovered that caregiving is ingrained in who I am. Social media connected me with several wonderful caregivers and caregiving organizations and forums through which I have been able to exchange ideas and give support. I wish I had known about them when my dad and Ben were here and I was struggling in so many ways. I also enrolled in a caregiving consultant certificate program offered through Caregiving.com. There is a sense of responsibility that I feel to other caregivers, and camaraderie that I feel with them. It is also important to me that I remain engaged in the fight to defeat ALS and I feel strongly that supporting the emotional needs of caregivers of people with ALS is one way that I can do this. Through this certificate program I have been given an opportunity to participate in a unique virtual “performance” of the six stages of caregiving, to be broadcast online by Caregiving.com on Sunday, February 5. Learn more here. Please join us.
Another door I opened is that I have volunteered to work with my local chapter of ALS to create and deliver events for children who have a parent with ALS. My background is in arts and education and I am passionate about the power of the arts in our lives. When I heard that they have done crafts and other events for these children, it felt so right to me to be a part of it, and I am grateful and excited that I will participate in these efforts.
I could never have jumped into these endeavors immediately after I lost my dad and Ben. I could not have written my blog while I was going through the difficult experiences. I did write in my journal, but when I revisit those entries, I see that my thoughts were very scattered. I take to heart my favorite quote, from Christopher Robin to Winnie the Pooh: “You are Braver than you Believe, Stronger than you Seem and Smarter than you Think.” I am an emotional person and I easily cry, but I am strong and I lived through and handled challenging caregiving situations creatively, and hopefully, at least somewhat intelligently and successfully.
For people who believe that blogging and maintaining such a close connection to my relationship with Ben and with caregiving keeps me in the past, all I can say is that I disagree. I have taken my experiences and I am now ready and able to grow from them. I am learning about myself in ways that I believe are helping me to face the future, while maintaining my commitment to honor those I’ve loved and lost and, in this process, hopefully, helping others. I am emerging from intense grief and letting more light into my life.
I have begun to open different doors to begin to reshape my life. I hope you’ll join me on this journey and make some discoveries of your own! Always feel free to share and comment here!
Ben took this picture during our second visit to Walt Disney World, 2002 Mary Poppins is the first movie I ever saw in a theater. It will always have a most special place in my heart.