Caregiving

The Passage of Time and Grief- For My Mom

We were always Mickey Mouse fans!

Today, January 13, 2020, marks 28 years since my mom, Sandra-“Sandy”- left this earth. There is not a day that I don’t think of her. As I revisited my very first blog post of this date, in 2017, I find myself reflecting on the passage of time as it relates to grief.

Even after all these  years, I find myself completely reliving the day she passed away. My mom died of a sudden, massive heart attack at the age of 59, without any prior medical conditions. 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 and we were left to pick up the pieces. In the first of the anniversaries of her passing, I was completely unable to function, staying home and in bed. I watched family movies and let the tears flow. I think that I actually welcomed the tears. I guess they were tangible expressions of my grief. Today, I went to school and was very distracted by a fundraiser that I am coordinating for the animals in Australia, but the memories loomed. It didn’t help that I am feeling under the weather. I always wonder what my mom would think of me and my life. She is still such a vibrant presence in my life. 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. I still, and always will, wonder if she would be proud of me.

These are the thoughts that I posted back in 2017. I am sharing them once again to focus on the beauty of her life rather than her death.

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, but I think we were fortunate to have had such a close relationship. We went to the theater and ballet together and spent a lot of time together and even with my friends. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events to see all we could and find the best sales. She was simply an adorable person. Being in London with her was also a hilarious occasion- I still remember laughing at how I would have to translate English to English because the British accent baffled her. Everything delighted her there, as it still delights me. We had so much fun. I loved my mom and she loved me, unconditionally. Frankly, I could not imagine living after she died.

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.

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, though it was frustrating to me that she pushed people away. 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.

London 1987. My mom could not wait to visit the Paddington store!

As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much of 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!” (picture below, left) Another is watching and giggling through “The Little Mermaid,” especially because my grandma was straight-faced and completely bemused by our amusement.

I proudly say like mother, like daughter!

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 my 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 on those days he would plan something Disney-related, like our date to “Beauty and the Beast-3D” (click here for that post).

I enjoyed the movie “Brave” and the feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But, the scene in the clip at the bottom of this post says it all. Even after 25 years, I just want her back.

I have struggled, I have adjusted, and I have had to accept her death. Now, although there is still much pain, I must take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I miss and I love you, Mommy.

 

 

How “Up’s” Carl and Ellie Helped Me Cope With Grief During The Holidays

It’s Christmas. Since I’m technically Jewish, it shouldn’t matter all that much, and this year Chanukah and Christmas overlap. Christmas is a big deal to me and always has been. Since I was a child I was always captivated by the colorful trees and fun decorations. I loved coming into the city with my mom to see the beautiful store window displays and the giant snowflake on Fifth Avenue. In a hectic city like New York, the holidays bring out a kinder, prettier, more whimsical side of people. I like that. For me, Christmas is the time of dreams and dreaming, of taking the time to reach out to people who are always in your hearts. Chanukah is a holiday and I do light the menorah and respect the traditions, but for me, it isn’t a season or a tone of the year in the same way as Christmas. I watch the Hallmark movies and yearn for what in my mind Christmas is all about and what it looks like. With Ben, I was able to have Christmas, even if it was simply wrapping gifts that he was bringing to his kids. Without people with whom I share my quirky sense of holiday traditions, I distract myself with a whimsically decorated apartment and the magical sights of the city, but I often feel the weight of a life that still frequently feels lonely and ungrounded.

Memories play an important part in all of our lives, for better and for worse. Now, in addition to my memories of many fun Christmases spent with Ben, I also reflect on how I have spent the holidays since Ben and my dad became ill and since they have left the world. My dad died in February 2014, and the holiday season that year was seen from the windows of the train and car service to and from the hospital and then the hospice. When Ben was ill and ultimately homebound, I decorated the apartment, which added some fantasy to an otherwise depressing environment cluttered with life that had been pushed to the side to accommodate medical supplies and equipment because ALS took over literally and figuratively. Those memories continue to fill my mind at this time of year, though I continue to decorate and call upon my holiday spirit. I put Ben’s favorite ornaments and decorations where he liked them. Since he was confined to his desk and chair all day, it was important to place things where he could see and enjoy them. The first ornaments I place are the photo ornaments from Walt Disney World. I love those ornaments because we spent so much time choosing the precise photo to represent each trip, even though the photos also reflect the physical changes in Ben that resulted from the ALS. Now, as I place the ornaments in those same locations, I talk aloud to him about it, often smiling. People might think I’m crazy, and maybe I am, but I know that he hears me.

Some of the ornaments that Ben especially liked to see were Sully, Buzz, Mulan, our photo ornaments.

Two years after Ben “left,” as he called it, I got my first new ornaments during my visit to London. I chose lovely ornaments from Harrods and Liberty, but they didn’t feel right on the tree because they weren’t ours and most of the ornaments were Disney ornaments that we chose together. At that time, the ornaments unnerved me because, although they represented a favorite place and a milestone in my life that I was once again able to travel without caregiving worries and responsibilities, I also felt that they conveyed that I had stopped grieving, which was not true. It continues to be a balancing act to deal with grief that never really goes away, and coexisting with those feelings but engaging with life, finding joy again without guilt and anger.

Last year, I purchased my first Disney ornament without Ben. It was a Mary Poppins ornament and I know that he would have liked it. Mary Poppins is very dear to my heart since childhood. I love the ornament, but I admit that it carries the burden of always being seen as the first Disney ornament of which Ben was not a part. Still, I have to remind myself that healing happened- until that point, I had not been able to consider new Disney ornaments. I realized that I was ready for my tree to evolve into a representation of all the beautiful memories that Ben and I created, and of the new ones that I am creating, with the hope and wishes for the magic that Christmas seems to signify for me.

The scene with the penguins was always a favorite. Now the ornament is next to our photo ornament and one of Ben’s heroes, Buzz Lightyear.

When I was in Walt Disney World this past October, I purchased an ornament from Mickey’s Not So Scary Halloween Party. I have had it hanging on a lamp and thought I would put it on the tree. I put it on the tree and removed it several times. Halloween and that party were our most special event and it felt almost disrespectful to put the ornament on the tree, as if it was a slap in the face to Ben that I could go to the party without him and then put a reminder on our tree. Finally, I decided to keep it on the tree because it accurately represented the conflict of struggling with his loss, carrying our wonderful memories with me and continuing to live and enjoy things we shared while acknowledging that they will never be quite the same.

This year, I spotted a very sweet ornament of Carl and Ellie from Up. It was a memory of early in their relationship, captured within a clear glass ball. That ornament touched my heart. Up is a movie with powerful messages about loss, grief and continuing to live. This ornament encapsulated for me the message that I have so many beautiful memories with Ben, and my tree is one way that I can visually display and recall those memories. My heart is fragile, like the glass that captures the memory of Ellie and Carl, but the memories are vivid and strong and beautiful, and they sustain me. The treasured memories surround each other and are, and will continue to be, joined by new memories. They are all precious parts of my story.

I think about Carl looking through Ellie’s scrapbook and reading her final message, “Thanks for the adventure. Now go and have a new one.” Here is the clip. I have put the ornament of Carl and Ellie on my tree as a reminder that although holidays are harder times without Ben, and there is definitely a void, adding new ornaments represents a way that I am coping with loss and finding new adventures while treasuring Ben and the memories we shared.

“Up” Copyright © Walt Disney Pictures, Pixar Animation Studios 2009

It has been more than 4 years since Ben left this world. I say that because I want anyone struggling to know that the healing has not been happening quickly for me, but I have noticed and assessed it. We all grieve in different ways and in different timeframes. Sometimes, we see progress in very subtle ways. We have good and bad times. Sometimes we need the non-judgmental support of loved ones. Blogging and journaling have helped me to identify how I have coped, or not. I wish for everyone to have a holiday season in which they feel loved and supported and that allows them to embrace in some way good memories and the hope of new ones.  Please reach out in the comments or privately if you would like to share your strategies for coping with the holiday season.

The December page from my calendar is filled with our memories from Christmas at Walt Disney World in 2007.

Walt Disney: A Legacy of More than Animation (12.5.1901-12.15.1966)

Walt Disney, Walt Disney World

Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2018 marks 53 years since he left this earth. He’s been a part of my life for as long as I can remember. I have such vivid memories of my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. Mary Poppins was the first movie I ever saw in a theater. It just amazes me how Mickey and his friends touch the hearts of generation after generation. Now, I love to read about him and get a glimpse into his artistic vision and the building of his business enterprises. His belief in himself and commitment to his art are things that we can all learn from. I believe that Walt Disney’s words of wisdom and legacy will live on, as Buzz Lightyear would say, “to infinity and beyond.”

My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. As much as I love to be in NYC during the holiday season, I do have a sense of melancholy. So many of my more recent holiday memories have sadness. My dad was in the hospital and then a hospice during the holiday season of 2013 and the lights I saw were from the windows of a car that took me home from visiting him or the train to and from Long Island. When Ben was ill we couldn’t go together to see the holiday displays and I rarely had the time to go on my own. When I did have a little time, I either felt guilty or couldn’t really enjoy anything. It took a couple of years before I could bring myself to visit the tree at Rockefeller Center and look at the beautiful store displays.  I guess these memories loom, although just today I went to Rockefeller Center to admire the tree and other holiday treats.

Today seems a perfect day to honor Walt’s memory by reflecting on some of his words of wisdom.  They help me to look to the future with optimism, and I think that’s especially significant as we approach a new year. Also, they make me think about the concept of a legacy. My parents left me with a legacy of kindness, loyalty and compassion and always having a sense of humor and whimsy. I hope that I will always honor them and leave a similar legacy.

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

ALS, Walt Disney World, Lilo and Stitch

The very first time we met Stitch, October 2006!

As someone who still has a lot of my childhood dolls and can’t resist adding new ones to my collection, it is obvious to everyone who knows me that I completely embrace the idea that you need to hold on to your inner child.  As I’ve said, my inner child is very much at the forefront of who I am. For me, watching a Disney film, and imagining a fairy or fairy godmother at my side, also allowed me to escape the realities of caregiving and loss. Ben always said that he loved Walt Disney World because you simply forgot your problems. With a diagnosis of ALS, his problems were huge, but immersed in that fantasy land, he was a big kid having a wonderful time, even despite his challenges. For him to be able to feel that sense of joy and excitement was a gift. Walt Disney envisioned and provided that magical setting. I never want to lose the attitude that allows me to step right into the fantasy the way I did with Ben. I never want to stop wishing on stars or forget the wonder and delight that I had as a child.

“Why worry? If you’ve done the very best you can, worrying won’t make it any better.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt was right. I can’t say that any of my worrying helped, although perhaps thinking through worst case scenarios may have helped me prepare for a variety of situations. I’ve heard that worrying burns calories, but I’ve seen no indication that this works! I worry now about my future, particularly without much family. I worry that I will never find love again and I will be alone. But, the worrying isn’t going to affect any change, so it’s time to proceed in the best way I can, and make decisions I feel will help me to create a new life, or, rather, enhance my current one with new love, laughter, joy and peace.  I’m going to try harder to listen to Walt on this piece of advice!

“Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Epcot

2010- First use of the scooter to go to Epcot.

There is more light in my life now, and less guilt about feeling happiness, and I know that the people who love and care for me are glad to see me enjoying life again. But there are also the shadows, and I am not someone who likes to, or can, put on a show of emotions. The good and bad moments are all okay. They make me human.

“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, it helps me to stay positive if I escape for a while into a Disney frame of mind.

“In bad times and in good, I have never lost my sense of zest for life.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This quote made me think of Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. It was certainly a good lesson for me.

“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”

Ben would not be at all surprised that this Eeyore came home with me.

This quote is my inspiration for the future. It’s allowed me to reach out to people, to travel to new places and make dreams come true- I even returned to Walt Disney World, paying tribute to Ben but also creating new memories with dear friends. Throughout these experiences, I did miss Ben. I also struggle with feeling lost and lonely. At the same time, I believe that my curiosity, desire to learn, love and compassion will keep carrying me forward to find new and more love, laughter, peace and joy. I feel cautiously optimistic about the exploration.

“All our dreams can come true, if we have the courage to pursue them.”

My buddy is Cruz. Summer 2019- finding happiness! Meeting otters- I made a dream come true!

I think that I finally have the strength to summon the courage to follow my dreams. It feels pretty great, and yet a bit scary, to say that. I do believe that pixie dust would help.

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

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter. Here, he was laughing at me when I met Tinker Bell.

This is one of my very favorite quotes. Laughter, imagination, dreams and, of course, love, were the key ingredients in surviving years of caregiving and loss. They have always been there when I needed them, even if, at times, they felt out of reach. This is something to remember always. Never lose hope. Never lose the spark of a dream.

“First, think. Second, believe. Third, dream. And finally, dare.”

ALS,Caregiver,Caregiving,Disney,Dumbo

Here I go!

That sounds like a good plan! I’m hitting bumps in the road and struggling with confidence, but I’m working on it. Thank you, Walt

 

Gratitude: A Super Power at Thanksgiving, but also In Caregiving, Grief and Always!

Today is Thanksgiving. Of course, I always take comfort in Disney, so I try to heed the advice of Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” I have really tried to embrace that attitude and, for the most part, it helps me.

Thanksgiving has become a bittersweet event for me. It is a holiday that reinforces that I’ve lost the family to which I was so close. Last night, as I walked on Broadway and reveled in the tree stands filling with trees and the wonderful fragrance on the streets, I felt a mix of excitement and sadness. Ben and I loved this time of year and we always picked a tree from one of the stands near our apartment. Though I’ve learned to coexist with a constant feeling of missing Ben, last night I couldn’t fight the tears. I came home and talked out loud to him about how much I miss him and how hard it is at this time of year.

I’m not someone who attaches a lot of sentiment to food other than baking cookies and humentashen that my grandma taught me to make using my great-grandma’s recipe, but I realize that now, foods actually carry a lot of memories for me. I have flashbacks of my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I’d been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. Last week, seeing the turkey gravy display at Trader Joe’s was an unnerving reminder of the laughter and tears of my making all sorts of combinations of foods for Ben in the Vitamix as eating became increasingly difficult for him. I always had many boxes of Trader Joe’s turkey gravy because Ben liked it mixed with chicken and mashed potatoes, and I mixed it with all kinds of things to create a puree that he liked, including, if you can believe it, teriyaki chicken! Although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to feel gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there, be present in the moment and have hope for the future. Now, at these more challenging times, reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

My dad and I

When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. I do validate the need to have a pity party from time to time, but said that once you begin to think of those little things for which you’re thankful, you may very well find that there are many of them.

Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!

  • At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, and I don’t think I was always good at it, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. I treasure the knowledge that they loved me.
  • I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion and encouragement, while I was caregiving and then, in grief. Their spirit extended to Ben as well. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben is in their hearts. To be able to return to Walt Disney World a couple of months ago with Monica and her daughters (click here for that post) and pay tribute to Ben and my sweet Disney, while creating new memories with most special friends was an unforgettable and heartwarming experience and celebration of friendship.

  • It is always hard to lose a pet because they are family, and it was particularly hard for me to lose Disney. She was there for me in good and bad times and she was there for Ben, too. Disney was my closest remaining connection to Ben, since she was home with him every day and she witnessed his ALS progression. I became her caregiver, as she had many medical issues, but she brought so much to my life and it was my privilege to take care of her.

    Brave Disney during her hospital stay.

Now, I am grateful for my cat, Tinker Bell. She is young- not yet three years old- and has kitten energy that I have never experienced, and which keeps me on my toes, and makes me laugh and smile. Disney and my previous cat, Tiffany, were senior cats when they came into my life. Tinker Bell has helped me through my sadness over losing Disney. She has a lot to say, loves to be next to me at all times and she listens to all of my stories about Disney. She reminds me that there will always be good things to welcome into my life.

On Disney’s “Gotcha Day,” February 18, 2019 at NYC’s Meow Parlour

  • I’m grateful for my love of animals, as they are often more intuitive, honest and more humane than humans. And, they completely delight me! Discovering the Georgia Aquarium has brought so much joy to me as I have reshaped my life. After losing Ben, it was hard to find my own way and to feel like I was trying to find ways to enjoy our favorite things without him. Planning my first trip to the Georgia Aquarium to meet otters, dolphins and penguins was fun and yet awkward, but I realized that being close to the animals and doing the encounter programs has been a most wonderful opportunity, not only to greet, touch and feed them, but to have discovered a joy that is all mine, though I know that Ben is with me because we did love aquariums. I went back last summer, which was otterly amazing (click here to read about it) and I plan to return this summer, too.

My buddy is Cruz. Summer 2019- finding happiness!

  • I am grateful to be teaching in a wonderful public high school. Not only is it a healthier environment than my prior school, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. Those memories certainly follow me, but it’s good to see that I can move beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. My stories sometimes help my students share their own stories, and we build a strong sense of community and compassion.
  • As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core. I still have not quite figured out how to use my certificate as a caregiving consultant. However, I have enjoyed doing volunteer work and I am grateful to have met some terrific people who, tragically, are experiencing, ALS as patients or caregivers. This year, I began a club in my school that I intended for students who are caregivers for ill family members or even just for siblings. It is shaping up to be a club of caring, and somewhat shy, kids who need to find themselves and are interested in volunteering. So, in a sense, I am their caregiver! In all of these situations, sharing our experiences is emotional and powerful.
  • I am grateful to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words and I am thankful to have connected with many people.
  • I’m grateful to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with old and new friends. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.
  • I’m certainly not grateful to have had a romance cut short by ALS and to have to try to date and look for love again. However, I’m grateful to have met some nice people who give me hope that someone may very well be out there for me! And, it’s nice to feel the excitement of a little crush or at least the possibility of romance from time to time!
  • I am grateful to Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy and opportunities to reflect and sort through my feelings. I’m grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases. I’m grateful for my sense of whimsy and belief that if you wish and dream enough, your wish will come true. It lets me know that I will have even more to be grateful for next year!

Wishing well at Walt Disney World
July 2014

At this time of year in particular, I think about Pollyana, her wonderful world view and the “Glad Game” in the 1960 Walt Disney Productions film of the same name, and based on the novel by Eleanor Porter. (click to read my original post about that). This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every bad situation around and think about something you’re glad about regarding that situation. As time has passed, I’ve learned that being “in a state of gratitude” is not to naively play the Glad Game. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. That said, I don’t like when people tell me that things happen for a reason with regard to my Dad and Ben and their experiences- there is no reason for those kinds of illnesses. The lessons could have been learned without that kind of suffering and loss.

Film clip: Pollyana, 1960, Copyright © Walt Disney Productions  For those of you who remember the TV series Bewitched, the woman in this clip, Agnes Moorehead, was Endora!

There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad proud. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay because I have the super power of gratitude that gives me a positive perspective.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. Please feel free to use the comment space to share your own expressions of gratitude. You will likely find it comforting and encouraging.

Happy Thanksgiving.

With all good wishes,

Abby

 

Happy 52nd Anniversary to The Jungle Book- With Thanks for Its Lessons on Caregiving and Fighting the Shere Khans

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

Today marks the 52nd 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! 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. How about you? What do you consider the important skills of caregiving? Are you more Bagheera or Baloo?