Grief Is Never Easy: Remembering My Mom

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We were always Mickey Mouse fans!

Today, January 13, 2021, marks 29 years since my mom, Sandra, or Sandy, left this earth. This is never a great day. To the people who say that I should not be so affected after 29 years, I say that we all handle things differently. There is not a day that I don’t think of her. I talk about her often, and so much so that some people do not realize she’s gone, or for how long she’s been gone. I don’t know if that is good, or “healthy,” but she is so much a part of me. This is an especially difficult time for me because she died at the age of 59, the age that I am now. And, coinciding with turning this age, which is something I have feared since my mom died, I have had to face some challenges. I didn’t talk about them to many people because one thing I’ve learned through caregiving and grief is that people are very good at giving unsolicited advice and sharing unsolicited thoughts that only make me more anxious. I can do that to myself. At least I can say that I have finally learned to try to protect myself.

Dates are important to me. I choose to take these anniversary dates to remember my loved ones. Grief after all these years is different than grief for my dad and Ben. Those losses are still closer to the surface, and the sadness hovers very closely, with setbacks unexpectedly triggered. Because my mom died suddenly, it was an indescribable pain to have her ripped from my life. We were extraordinarily close. Sadly, I’ve lost the people to whom I was the closest. On the anniversaries of these losses, I do think about all of them and the good and bad memories, but I don’t anticipate how I will feel, I don’t punish myself, and I don’t feel obligated to act any particular way. I will say that, this year, as every year, on this day, I woke up with the vivid memory of how my dad called me and said he thought my mom had died and the ambulance was on the way. His follow-up call confirmed it.

I can’t help but lament the time that we lost and that my mom never met Ben. But, I never lose sight of how lucky I was to have my mom. She was a truly selfless, beautiful and very adorable person and mom. I love that many of my childhood friends have good memories of her, too. In this clip from the live action Cinderella, Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it and they must honor her. This scene touched my heart. I cherish my memories to keep my mom’s spirit alive and honor her. I get my childlike enthusiasm from her and, I believe, my natural caregiving skills, which even extend to my students. Of course, I embody her love of Mickey Mouse and all things Disney, but I hope that in some small way I have followed her example as a person. I do know that she is always with me.

Copyright © Disney’s Cinderella, 2015

In my mom’s memory, I’d like to share some details about her and some of the important ways in which she influenced me, even in my caregiving days. This is a reprint of the post I published previously on this day:

My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie.  There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.

My mom and I were very close, or, as everyone said, attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her when we were out shopping. People laughed that we spoke on the phone many times every single day. We went to the theater and ballet together. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events. We had so much fun. Frankly, I could not imagine living after she died. I loved her and she loved me, unconditionally.

When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as my grandma, who lived with us, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times.  She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

I realize that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after my grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with my grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles.  I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. For a change of pace, I often brought home treats from Zabars or other NYC places. My grandma did not want to be cheered, and I understood that. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. As in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.

As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much who I am and what I do reminds me of her. I get my Peter Pan-like inner child spirit from her. You won’t be surprised that Disney played an important part in our relationship, too. One of my favorite memories is when she called me from Walt Disney World exclaiming, “Abby, I met Mickey!” Another is watching and giggling through The Little Mermaid, especially because my grandma was straight-faced and completely baffled by our amusement.

I proudly say like mother, like daughter!

I am not ashamed to say that I still miss my mom terribly. It remains a wound that is easy to open. When watching movies, I often cry at the mere mention of mother daughter love or the passing of a mother, and Ben intuitively handed me tissues in these instances before he even saw tears. Of course, that made me laugh through my tears, and that was a good thing. Ben never knew my mom, but he knew how important she was to me and it touched my heart that he always marked in his calendar her birthday and this anniversary and he would plan something Disney-related, like our date to “Beauty and the Beast” (click here for that post).

I enjoyed the movie Brave and feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But the scene in this excerpt made me cry because it says it all. Even after 26 years, I just want her back. I have struggled, I have adjusted, and I have had to accept her death. Now, I take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I love you, Mommy.

Disney Pixar’s “Soul”- Powerful word, Powerful film

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Walt Disney Pictures, Pixar Animation Studios 2020

Another holiday season, another Disney Pixar release. Of course, given the pandemic, this is not just another holiday season and the film release was launched in our homes through Disney+. Bizarre as everything is these days, for me, the timing of this film and its meaning were perfect and significant.

The past few months have taken an emotional toll on me for various reasons. I did not write my annual birthday post, Thanksgiving post or Christmas/Chanukah post. I just didn’t have it in me. Isolated in my tiny NYC apartment, I have all too often found myself wondering about the future, where I want to be, and if I am now where I should be, or where I thought I would be in my life. With plenty of time for reflection, at least I can say that I have gained some new perspective. Soul helped me and offered an opportunity to clarify some of my thoughts.

In Soul, I met Joe Garner, who, in some ways, felt like a sort of literal soulmate. He is a music teacher in a middle school but it’s not where he sees himself (having taught  middle school, I can’t help but relate to that and feel his pain!) Joe is surrounded by people he loves and who love him but whom he feels do not support his goals. Joe’s dreams and daily realities are in conflict. He sees his goal and purpose as being a musician in a club, playing with famous jazz musicians. He doesn’t see the impact he makes on students and the spark that he feels when they are inspired by music.

After an unfortunate accident, Joe is facing the possibility of death. In this kind of limbo, Joe becomes a mentor to 22, a spirit who has defiantly resisted becoming human. Essentially, 22 questions if she is good enough to take a leap of faith, go to Earth and really live. Once immersed in Joe’s life as their spirits intertwine, she experiences the beauty – memories, people, places- in Joe’s life. She feels a range of emotions that she’s never let herself feel. She responds to the passion that Joe feels when he plays music. She wants that passion but does not quite have her spark. Of course, some people go their whole lives without a spark, but 22 actually feels how invigorating and fulfilling it is to have one. She is scared but she wants to live. On the other hand, Joe is looking so far beyond his life that he can’t feel and enjoy the spark or see how in many ways he is living his purpose.

I can relate strongly to Joe’s frustration as a teacher.  I’ve written a great deal about how caregiving is essential to who I am. When I was in that role, I did not always embrace it, though I did feel a great joy when I made my dad and Ben feel happy, safe and loved. I have sought that fulfillment since I lost them. I don’t often feel a spark in the day to day work of being in the classroom. I feel confined there, and always feel that there’s something more out there for me in the field of caregiving. I feel that I am meant to work with caregivers, particularly children. In my free time, I write, create and dig into other pursuits related to caregiving, with the hope that things will come together and I will move beyond the classroom. I criticize myself for what I am not doing, and for tiptoeing around my goals in the same way I tiptoed around life as I grieved. It took me a long time to realize that what I love about teaching is connecting with students in a way that helps them to feel happy, safe and inspired. When I noticed that there were many students who were also caregivers- whether for ill family members or to help raise their siblings- I felt so strongly that I should be somehow supporting them.

Last winter, not long before the pandemic hit, with my principal’s encouragement, I began a club with the premise of helping caregivers care for themselves, and I also invited all students who felt stressed and wanted to take some time to care for themselves. I let guidance counselors know about the club and encouraged them to talk about the club to any students whom they felt would benefit. Another aspect of the club was to care for others through volunteer work, within the school and the local community. I had a small group of dedicated and creative students but there were no caregivers. I lamented that I was not serving the original audience of caregiving kids. Not being terribly confident, I felt disappointed in myself for not making happen what I had envisioned.

My club was comprised of a small core of young women who enjoyed our remote meetings, particularly when the schools closed and they felt isolated. I was happy to oblige when they asked to continue our virtual club meetings throughout the summer. We conducted some virtual workshops for our school community and were able to do a remote volunteer project for a community organization. I am pleased that the club has provided a platform to nurture this lovely group’s creativity and talents as they design and deliver virtual workshops. It gives me great joy to work with these clever and compassionate young people and I am thrilled to see their confidence and public speaking skills grow, as well as their understanding of ways to care for and work with various populations.

Compassion and caring have shown themselves to be what many young people in the school want and need in their lives. This fall, more than 200 students signed up for our remote club. They are eager to reach out to and support other students. Club members were bursting with ideas of what we can do to care for the school and outside community, even with the challenges of being remote. They’ve expressed that they love the positive vibe of our club meetings. Before the holiday break, club members suggested doing “secret greetings” so that students would get to know each other and would receive holiday greetings. It touched my heart to hear all the thoughtful and inspired ideas. To carry out this idea, one of the students led a brief tutorial on a card-making program and the students had fun making digital cards and knowing that they were doing something kind for another student. The students are embracing the club as a way to learn to take care of themselves and others.

I have weekly meetings with my original core group of students to plan for our club meetings. This is not an obligation, but it is something that they want to do, something that they feel committed to and good about. They are proud of themselves and that gives me a tremendous sense of satisfaction and joy. In the course of our virtual meetings, I have been happy to listen to the kids discussing their plans for the club and also to hear them support and cheer on each other through their school and life issues. I have realized that this a group of young people who are caring. They want to show caring and compassion to others. This feeling is spreading throughout our school in a different way than I envisioned but also an incredibly meaningful way.

There is a scene in Soul when Joe, who is actually 22 in Joe’s body, has a chat with Dez, a barber he’s known forever. The barber revealed that he had wanted to be a veterinarian, but his daughter became ill and life circumstances occurred, and he followed the path that led him to be a barber. Joe seemed shocked that Dez was doing something that didn’t make him happy. Dez disagrees, pointing out the ways in which he is happy, saying, “I may not be giving blood transfusions, but I’m definitely saving lives.” Perspective is so important. Joe needed it. I’ve needed it.

Sometimes life doesn’t unfold as we expect or envision. Of course, I’m not only referring to illness and loss. Things happen, and what we plan may have to shift, but we can also discover unexpected and joyful surprises that are still aligned with what we feel we are meant to do. Joe’s experience as a teacher prompted me to examine my own experience. Sometimes we have to look deeply at what is right in front of us. Within my teaching experience and now, with the expansion into my club, I am, in fact, modeling compassion and caregiving qualities that can support any student who is a caregiver and increase awareness among many students of the need to care for ourselves and others. I see that the club will help young people to develop and appreciate a sensitivity and sensibility that will inform their awareness of and abilities as caregivers. That’s a beautiful thing and it is the foundation of what I believe my purpose to be. It was hard to see the accomplishment when I blocked the view with frustration and a limited perspective.

I do tend to get caught up in worrying where I should be, what is going to happen to me and if I am enough to get myself to my goals. I put myself down about what I think I should have achieved and if I am good enough. I am still very connected to the past and I can get lost in wondering and dreaming but not necessarily stepping forward and living those ideas. I still find myself talking aloud to my dad and Ben and even asking for signs of their approval. Ben died at a young age, as did my mom- in their fifties- cheated of so much life, and that leaves me keenly aware of how important it is to value and take advantage of life, even when I feel guilty for having more time in this world. However, like 22, I am sometimes afraid to take a leap of faith and have the confidence to pursue some of my dreams.  It is also hard for me to acknowledge my success when it occurs. I am not sure what I am going to do with the rest of my life, but, with the New Year upon us, I think it’s a good time to commit to really living every minute and having a perspective that allows me to keep striving and growing, but also to see and appreciate what I have achieved and how I am meeting my purpose, even if I still believe that ultimately, my purpose lies beyond the classroom. The crucial thing that tugged at my heartstrings as I watched Soul is that like Joe, I do not want to look back at my life and think that it was meaningless.

I love that music is integral to Soul because Ben’s spark was also music. He often said that music saved his life when he was a teenager. When Joe explains jazz in the film by saying, “the tune is the excuse to bring out the you,” I thought about how that statement would resonate so clearly with Ben. I will forever be moved by musical references that conjure such a deep association to Ben. His profound love of music led me to frame some of the sheet music he wrote for his arrangements. I feel very connected to him when music and/or lyrics make a strong emotional statement to me. Though it will not be apparent to children, the film’s use of jazz to convey the expression of who we are will be felt deeply by adults and music lovers. For me, the ability to capture in different ways the minds and imaginations of children of all ages is pure Disney magic!

Soul is an important and, indeed, a soulful film with the powerful message that can never be overstated- we should appreciate life and take advantage of every moment.

I wish everyone a New Year filled with good health, happiness and a sense of fulfillment!

Happy Birthday, Walt Disney!

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Walt Disney, Walt Disney World, ALS, Caregiver, Grief

Walt Disney was born on this day, December 5, in 1901. As anyone who knows me or reads this blog is aware, he is an idol of mine, and such a huge inspiration, for his unbridled imagination, firm belief and proof that dreams can come true, and tremendous vision. I am simply in awe of his legacy to this world.

In my blog I shine the light on wonderful memories of Walt Disney World and how it makes me feel so connected to my mom and to Ben, and for that I will always be grateful.

When I first began this blog, in celebration of Walt’s birthday, I put together just a few of his quotes that are special to me. I turn to them when I need some inspiration, and I’d like to present them as an annual tribute to his brilliance on his birthday!

“That’s the real trouble with the world. Too many people grow up.”

My mom loved Disney and was also a child at heart. I got that spirit from her. I think it’s always important to retain our sense of whimsy and wonder. It helps to stay optimistic and to be creative in problem solving.

Mickey Mouse, Walt Disney World, Disney

My parents with Mickey in 1987

“People who have worked with me say I am ‘innocence in action.’ They say I have the innocence and unself-consciousness of a child.”

People might say that I am sometimes a bit of a Pollyanna in my innocence, but it’s who I am. Yes, I do get disappointed sometimes, and I have learned to balance innocence with a need to protect myself, but I believe that this quality enables me to see possibilities and to fantasize in a healthy way.

waltandmary

“Laughter is timeless, imagination has no age, dreams are forever.”

Agreed. The perfect quote. It was a mindset Ben and I needed as he dealt with ALS. It’s a favorite quote that continues to lead me forward and allows me to stay a child at heart no matter the grown-up challenges I face.

Walt Disney, Walt Disney World

“The greatest moments in life are not concerned with selfish achievements but rather with the things we do for the people we love and esteem.” 

I think that every caregiver would wholeheartedly agree with that.

Walt Disney, Walt Disney World, ALS, Caregiver, Grief

“I hope we never lose sight of one thing-that it was all started by a mouse.”

Walt Disney, Walt Disney World

“Why be a governor or a senator when you can be king of Disneyland?”

Given the current state of the country, I’d opt for a position at Disneyland!

October 2019 next to Walt and Mickey. My first time back at WDW without Ben. I still found the magic and the laughter.

Happy Birthday, Walt, the consummate child at heart!  Thank you for all you’ve given to me and the legacy you’ve left to the world.

This was my beloved cat, Disney, celebrating Mr. Walt's birthday, along with Duffy (X 2) and Eeyore!

My cat, Disney, celebrating Mr. Walt’s birthday, along with Duffy (X 2) and Eeyore!

 

Difficult Days of Fall and Helpful Grim, Grinning Ghosts

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October 2020 Calendar Page. Our favorite time to be at Walt Disney World- Halloween!

My Dear Ben,

I’m writing you this letter because Fall is a time when I especially wish I could talk to you, walk with you, cuddle up in the eagerly anticipated cooler weather and just enjoy this favorite season as we always did. Now, another birthday has passed for me and yesterday was Halloween. These remain hard days without you. I’ve never been someone who likes to celebrate myself, but it always touched my heart that you celebrated me on my birthday (and other times, of course), often surprising me with romantic gestures. You always laughed at my proudly wearing my birthday badge at Walt Disney World, but everything is whimsical and magical at Walt Disney World. Halloween is a different story because although I loved it since childhood, it really became our holiday. It’s that simple. It’s even the day we got engaged. Yes, these remain a rollercoaster of a few days, magnified by this rollercoaster of a 2020 and the upcoming election for what I truly believe is the soul of our country.

This was the birthday I’ve dreaded- 59- the year my mom died suddenly and the year she also seemed to dread, though now it seems it was almost her cosmic understanding of what was to happen. I can’t help but be affected by it. I’m already older than you were when you left this earth. It’s hard to reconcile. Part of me is scared, and part of me wonders if it would really matter if I wasn’t here, except to Tinker Bell. Maybe being alone so much during the quarantining has added to those feelings of isolation and irrelevance. On the other hand, if I wasn’t here, would I be with you, my parents, my grandma and everyone I’ve loved and lost, including my beloved pets? No one knows, but it’s nice and comforting to believe.

ALS, Walt Disney World, Pooh, Rabbit,Caregiving

Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.

In Ratatouille Gusteau tells Remy, “If you focus on what you left behind you will never see what lies ahead!”  It’s a tricky balancing act to hold dear so many wonderful memories that are my comfort zone and security, but also remind myself that I am still here. I find myself confused. I drift between past and present and I don’t know where I fit. I embrace the present and weave in the past, while I tentatively try to shape, or look to, a future. When I think about my mom at age 59, I don’t know what to think about a future. I take more delight in life, and I’ve gotten to a point where I can be more festive again on Halloween but the pandemic has led to a quieter and less colorful holiday. I decorated the apartment with some of our things and some new things. I still can’t enjoy some of our decorations from Walt Disney World. It always surprises me that some things are a comfort while other things unnerve and sadden me. I don’t dwell on it or fight the emotions. My favorite tradition now is to change the number on the Mickey Mouse Halloween countdown figurine every day, smiling at the memory of how happy it made you and how you texted me at work to jokingly reprimand me if I had forgotten to change the number before I left home. This week, I entertained my students with your Haunted Mansion playlist and my many Mickey’s Not So Scary Halloween Party t-shirts that we waited and waited for at the shops in the moments before the parade- what craziness ensued as the cast members revealed the shirts and we all grabbed at them! I love that many of the t-shirts are now a part of the t-shirt quilt that surrounds me with memories every night. I’ve looked at our pictures, vividly remembering the details. I keep the funny light up “engagement ring” that you gave me one Halloween at Walt Disney World next to my bed. It almost seems surreal now.

It’s here- Happy Halloween!

I’ve come to accept that Halloween is something that I now have to experience for myself, though I do feel like I experience it through your eyes and with you in every step I take, smiling as I think about how you would react to the decorations and costumes. I am so grateful that last year I got to see Walt Disney World in its Halloween splendor. It was something I was not sure I could or would ever do without you, and I was nervous about it, but it was a new and different experience because it was with Monica, Abby and Andi. I was relieved and grateful to discover that it was a way to look back but also be present. It even gave me a glimpse at how I looked towards and positioned myself in the future. That’s not always easy for me, but now I know that I can do it and that good things lie ahead.

Abby x 2 to the left, and Andi and Monica to the right of Buzz.

Never losing sight of that I’m really not alone (and I don’t just mean those ghosty ghost buddies).

Yesterday, for the first time since you left, I decided to walk on our favorite block. Because of the pandemic, there was no block party. Some of the buildings did a bit of decorating but there was a banner saying that they will be back next year. I hope so. In a way, I was grateful that it was very different. I didn’t have to feel the pain of missing you while seeing all of the adorable costumed kids and fabulous decorations. They weren’t there, just like you. Still, I ventured forth and despite the trepidation, I am learning that I can take those steps- literally.

In Disney’s The Hunchback of Notre Dame, 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’.”  Until the pandemic and quarantines began, for the past couple of years I did take the leap from relying on memories and being a spectator of life to traveling, enjoying theater, exploring new parts of the city, making new friends, and even investigating online dating- you did always say you’d haunt me if I met someone new, so maybe you’re responsible for my lack of success in that venture! Still, the joy is sometimes undercut by sadness, guilt or even the dread of unexpected triggers of grief and tears. I saw friends yesterday and I do get together with people whenever social distancing protocols allow, so I’m trying my best to live my life with zest. However, I can’t deny that I ended up once again alone on my sofa reminded that Halloween will never really be the same. At least on Halloween, even though we are apart, I smile as I think of you as a grim grinning ghost and know that you are residing at the Haunted Mansion. And, in my effort to honor you and continue to find delight and whimsy, this year I made new grim grinning ghost cookies!

I found Grim, Grinning Ghost cookie cutters!

Maybe the truth is to be found in wisdom from Mary Poppins, who in Mary Poppins Returns said, “When you change the view from where you stood the things you view will change for good.” I have been able to look back on my memories, shifting from the challenging times of caregiving and the depths of grief to see that I learned so much and had a unique and treasured opportunity to give and receive love. I was not being naïve or denying the physical and emotional challenges and scars, but broadening my way of looking at them. I think about how Ellie left the final message for Carl that said, “Thanks for the adventure. Now go and have a new one.”  I can’t flip a switch and change my frame of mind, I think that I can begin to shift my view. Instead of focusing on how events like Halloween will never be the same and that your absence is my strongest feeling, I want to work on shifting to the view that our life together and the beautiful – and even not so beautiful- times we shared have paved the way for me to know that life is filled with adventures and that I can seek and find a comfort zone with new people and experiences and maybe, if I’m really lucky again, romance and love. Thank YOU for the adventure. Please stay the grim grinning ghost who forever watches over me!

Happy, Not-So-Scary Halloween, my Ben! Boo To You!

Love,

Abby

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Mickey’s Not So Scary Halloween Party 2012

 

 

On the Anniversary of The Jungle Book- A look at Caregiving, ALS and Fighting Shere Khan

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Disney’s Animal Kingdom- 2001, pre-ALS. Ben was psyched to meet Baloo!

Today marks the 53rd anniversary of Disney’s The Jungle Book. I love this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. I even enjoyed the live action remake. I am moved by the sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! There is much discussion about racism in what we consider our treasure trove of classics, including many Disney films. I do believe that it is important to acknowledge and address these issues. Caregiving knows no boundaries. When I watch the film, I cannot help but reflect upon how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.

Bagheera has all the qualities of a good caregiver: patience, the ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and he and Mowgli have a deep friendship and love, but Baloo also needs the guidance of Bagheera. When Baloo resists the reality that Mowgli needs to return to the “man village” and be around people like himself, Bagheera needs to remind Baloo that although he loves his little buddy and thinks of him as a son, he has to see the big picture in caring for Mowgli and that he has to think about what was best for Mowgli and not just for himself. Those are tough choices and I remember them well. Caring for Ben meant never losing sight of what our priorities were. Like Baloo, there were many times when I felt Ben deserved to indulge in any of his whims because I did not know how long he would have that luxury. And, we knew that time was not on his side. Taking him to Walt Disney World for one last visit was a very joyful indulgence. There were also the gut wrenching realities. I remember that after Ben repeatedly said that he wanted to go home from the hospital, I just wanted to honor his wishes and I asked his doctor if it would be possible to bring him home. His doctor, who proved to be my Bagheera, provided the wisdom and the reasoning, and then I had to have those heartbreaking conversations with Ben. There were stressful times when, just like Baloo and Mowgli, we argued and sulked. But, the caring in caregiving never went away and neither did the love.

I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to the hospital’s hospice unit and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy and needing 24/7 nursing care. This was not an option we liked but it was one we had to accept.

I could also relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways that have still left scars, but love and devotion kept me at his side and I have no regrets about that. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.

I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! Still, Baloo was protective of Mowgli and he has a good message. As caregivers, we don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” However, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. These are the things that let you remember who you were before you were in a caregiving relationship.

As for me, I think I was a combination of Bagheera and Baloo- a dedicated, thoughtful caregiver, acquiring skills and perspective during on the job training, with a sense of humor and incredible klutziness. Importantly, Ben always felt safe and secure with me. Some caregivers choose the role and others are thrust into it. In any situation, it’s important to know ourselves and to honestly assess the dynamics of our relationships and the shifts over time. Are you more Bagheera or Baloo? How do you define a good caregiver? Are there other characters in your story in supporting roles? These are all part of “the bare necessities of life” in caregiving.

 

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