Today is the 25th anniversary of the release of Walt Disney Pictures’ Beauty and the Beast, one of my all-time favorite films. I am reminded of the 2012 release of the 3D version of the film. Ben and I had made a tradition of attending opening days of the Disney movies. As his ALS progressed and getting out and about was more difficult, we could not maintain the tradition, but we did continue to see the films. Ben knew that I was eagerly awaiting Beauty and the Beast 3D because I couldn’t even imagine how they could make it more beautiful (they did.) I did not mention going on opening day and I thought it would be too exhausting and complicated to get him dressed and down the stairs after a day of work. That release date was also the anniversary of the passing of my mom, and I was not in the best frame of mind. No problem. We’d see it at some point. When I got home, Ben was waiting for me, all ready to go. It touched my heart more than I can express in writing. His dexterity and motor skills were already compromised, and it took him all day to get dressed, but he wanted to have our date night. And, because my mom and I shared a love of Disney, he thought that going to a Disney film on that day would be a lovely way to honor her. That was Ben- always romantic. We had a beautiful evening. And, now I have another special memory.
A little more than a year has passed since Ben left this world, and it’s almost 3 years since I lost my dad. Grief is filled with ebbs and flows of emotion, and I do, at times, unapologetically allow myself to give into the loneliness and memories of the ugliness of cancer and ALS, the messiness- emotional and physical- of caregiving, as well as the profound sadness over my losses. The sadness is magnified around a holiday like Thanksgiving, which reinforces that I’ve lost the family to which I was so close. Thoughts also resurface of Thanksgivings spent in the hospital with my dad or at home with Ben, when he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, I did have things for which to be thankful. I still do.
“The more you are in a state of gratitude, the more you will attract things to be grateful for,” said Walt Disney. In theory, I agree with Walt (OK, so no surprise there!) But, when I was watching my loved ones deal with ALS and cancer, and I was struggling with caregiving, and then grief, although I was appreciative of people and things, I can’t say that the state of gratitude was where I lived, or even where I wanted to be. It took too much effort. Ben lived in a state of denial about the progression of the disease, and I lived in a state of anxiety, more relieved than grateful for any day without crises. To me, saying I was in a state of gratitude would have implied a sense of peace and contentedness that I did not have. As time has passed, however, I’ve learned that “being in a state of gratitude” did not mean to naively ignore or diminish the impact of the bad experiences, or to try to “push Sadness into a corner,” like Joy from “Inside Out” (click here for that post.) To be in a state of gratitude gives me the very important power of perspective. There were times that I could not get beyond the chaos and sadness, and that was and is fine and genuine, but I can also shift my perspective to focus on the many aspects of these experiences that were filled with love, compassion and caring, and those do compel gratitude and invite more of these thoughts. That’s also genuine, and it’s a good and humbling feeling.
My dad and I
I feel very fortunate to be able to share some things I’ve discovered in my state, or perspective, of gratitude.
At the top of my gratitude list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving was the most heartbreaking and challenging thing I’ve ever done, but it was also the most important, valuable, loving and rewarding thing I have ever done. I could not save my dad or Ben, and I wish we did not have to take these journeys, but I am so thankful that 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. It didn’t always feel like it, but it was a gift to be able to feel and express that depth of love in such tragic circumstances. And, 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. In Ben’s situation, when family didn’t step in -and there were definitely disappointments and dramas- we 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 remains in their hearts.
I am grateful that in June I was offered an opportunity to present at the annual memorial service of Mount Sinai Medical Center’s Visiting Doctors Program a public tribute to Ben and to the people from that program and the hospital who were so fantastic to him, and to me. ALS is a rare disease, and although it is difficult for me to speak publicly, I feel it is important to take any occasion to share Ben’s experience and, hopefully, contribute in some way to an overall understanding of what it is to live with ALS and why there must be tireless efforts to find a cure. If you’d like to read my tribute, click here.
I am grateful to find comfort in the arts and in my creative endeavors. Blogging has been tremendously helpful, and it touches my heart to know that readers find comfort in my words. I’ve gotten back into my craft work with miniatures and into Pets en Voyage, the pet souvenir business Ben and my dad helped me develop and launch. I’ve also created displays of photos and memorabilia around my home, and looking at these things always makes me smile, if sometimes through tears.
I am grateful to Walt Disney for giving us all things Disney. I am simply in awe of his imagination and vision. I am grateful to Disney for amusement, consolation, comfort, life lessons, belief that dreams come true, perspective and incredible memories. And, because I am so grateful, I even named my cat Disney. I am thankful for her every single day for the love, cuddles and laughs that she gives me and for the love she showed to Ben, especially when she visited him in the hospice.
I am grateful to be resourceful, and to have sought out support groups and resources that have guided, encouraged and motivated me, and let me know that I am not alone in my feelings.
Walt Disney also 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’m grateful that for the first time in a long time, I am cautiously optimistic about starting down a new path to see where it leads as I reshape my life, though there are and there will be setbacks. My memories, and desire to respect Ben and my dad and make them proud, will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. This would also be a good place to add that I am grateful to have my mom’s child-like wonder and spirit, with an inner child that cannot be contained. It allows me to continue to wish upon stars for dreams to come true. I just keep reminding myself of what I learned from Christopher Robin and Winnie-the-Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay.
Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. I hope that if you are reading this, and you’re struggling with gratitude and the holidays, that you will be true to your feelings but also consider a perspective that allows you to see and be grateful for love, compassion and good memories to carry you forward. And, take a bit of time (I do realize that time to yourself can be a luxury) to think, write, draw or in some other way acknowledge yourself.
Since my blog is inspired by a love of all things Disney, I want to acknowledge the birthday of my favorite Mouse! You may turn 88 today, but you are the eternal child who brings out the inner child in all of us. I know it’s Minnie’s birthday, too, and I also wish her a Happy Birthday!
You and I go back a long time. My mom loved you from the time she was a child and she passed that love on to me. She was in her 50s when she and my dad went to Walt Disney World for the first and only time, and without me! But, I will never forget her phone call, giggling as she exclaimed, “Abby, I met Mickey!” This picture was taken on that day, and it is my favorite picture of my parents because, for me, it captures my mom at such a happy moment with her inner child aglow, and my dad was so amused. When I picked them up at the airport, my mom deplaned like the other children, unabashedly carrying a big Mickey Mouse in her arms. My mom was the consummate child at heart, and I get that from her!
My parents with Mickey in 1987
When I first started dating Ben, he was not as obsessed with Disney as I was. That changed quickly, and our first dates often began with a stroll through the Disney Store that was near our office (we met at work). We went to every new Disney film on opening day and we practically studied the Disney Catalogs, which, sadly, are no longer published. I found several copies that he kept because he loved the covers and I’ve kept those.
We went to Walt Disney World several times together. Our first time was for my birthday, and we discovered the relatively new Mickey’s Not So Scary Halloween Party. Little did we know that we would be completely captivated by this event. We planned almost all of our visits to Walt Disney World around Halloween (and my birthday!)
Our first visit to Walt Disney World together! 2001
After Ben’s ALS diagnosis, we immediately booked a trip to Walt Disney World. We didn’t know what we were dealing with, or how much time we had, and we wanted to go to the place that made all our worries disappear, at least temporarily.
Epcot, Walt Disney World, Halloween 2012
I admit that I was the one who had to greet all of my Disney friends. Ben sometimes joined me for photos, and sometimes he just took pictures and laughed at me. But, with you it was different. He always wanted to see you (and Minnie). And, after his ALS diagnosis, it was emotional. While some people just see actors, I believe that to visit Walt Disney World is to embrace the fantasy and the whimsy and, besides, I believe in you. With an ALS diagnosis, you want to feel the pixie dust, and more than once I asked you for some magic. I do remember that a sensitive cast member saw that Ben’s meeting with you was deeper than just seeing a favorite Disney friend. As we left, he handed me a “diamond” that he told us was found by one of Snow White’s dwarfs in the mines, and he said he hoped it made our wishes come true. I still have it. It may not have fulfilled the wish that ALS would be cured, but I still believe that it helped us to create many wonderful memories. I thank you for that.
For as long as he could, Ben would insist on walking to stand in his pictures with you. It was truly touching when you spotted Ben in the electric wheelchair, helped him up and escorted him to the area where photos would be taken. He rode up to you when he lost the strength in his legs. It was then that I was hit with the reality of his situation. It might seem strange that this moment was a revelation, when I was living with his ALS. But, living with something didn’t mean I really reflected on the entire situation. We adapted to the issues as they arose without really looking at them as milestones in the progression of the disease. Ben also had an incredible attitude, and he was determined to engage in life.
Mickey’s Not So Scary Halloween Party 2012
You and your friends brought us a lot of joy at very trying times. You welcomed us into your kingdom and gave us fantastic memories. Those memories comfort me now.
No caption needed for the joy in this photo!
Happy Birthday, Mickey. May you continue to be the spark of hope and happiness for children of all ages.
Though she may have “short term remembery loss,” Dory is one wise little Blue Tang! She put into perspective for me a lot about caregiving and life. It’s not all about “just keep swimming!” but you can read about how that quote inspired me by clicking here.
Some of the best help and support you receive will come from unexpected sources.
Dory felt alone because she thought she would never find her mom and dad and have a family. She finally realized that Nemo and Marlin were also her family. My friends are my family, too and they provided help and support for which I will always be grateful. So did some of the professionals who took care of Ben, and I will forever love and be grateful to them as well. Becky and Gerald may have seemed like they were not up to the task of helping Dory and her friends, but they also came through in big ways. Don’t automatically judge or dismiss people, especially if they genuinely want to help, because they may be the very people who will listen, assist and offer really good ideas and information. Teamwork happens in many ways. All kinds of people stepped in surprised us in wonderful ways throughout Ben’s illness, and they continue to do so. They have compensated for the people who disappointed us, because, of course, there’s that, too. Knowing that Ben was in the hearts of many always touched me, and it still does. Never underestimate the power of compassion and always be open to delightful surprises.
2. Be careful of the undertow.
Caregiving is overwhelming for so many reasons. Aside from the demands of the job, there is an emotional toll of helping someone you love deal with any disability or illness and watching them struggle. The “undertow” can take a caregiver and/or a caree to a place of extreme sadness, depression, loneliness and helplessness. It’s important to stay connected to the outside world, through your own network of friends and relatives, outside agencies, and social media support groups. Make lists of things and/or people that provide comfort, cheer, or assistance when the undertow starts pulling you down.
3. “I’m OK with crazy”- Hank
Illnesses are unpredictable and caregiving needs are unpredictable. Our moods are also unpredictable, particularly when we are stressed, exhausted and our Tangledemotions are turning us inside out (what can I say? Disney references work for me!) You have to be ok with crazy when many things are happening at the same time that you have many conflicting emotions. And, you have to be ok with crazy when attempting to handle crises. I remember thinking that crazy was my new normal. Perspective helps! So does humor.
4. Not everything is easy to do, but there is always another way.
Creativity, resourcefulness and a good sense of humor can help to determine new approaches and perspectives on how to deal with issues. Don’t be afraid to ask for help.
5. “News flash! Nobody’s fine!” – Hank
In the most planned and organized day, there will be crises. They can be physical issues but they can also be emotional fallout. Caregivers and carees are not always at their best, though we would like to be. It seems to me that our default answer to “how is everything? “ is “fine” and I’ve found that most people kind of want that answer because they don’t know how to handle anything else. It’s ok to admit that things aren’t fine. That admission should not invite any judgment. And, it doesn’t mean that things won’t be fine again, even in a matter of moments. Remember, Dory taught us that we’re ok with crazy!
6. An octopus may have 3 hearts, but it doesn’t mean it’s nice.
Yes, it’s a fun fact, but it also lends perspective to our expectations of people around us. Ben and I were very fortunate to have lovely people around us, but we also learned that not everybody has a big heart, and having three probably would not have helped them either. Also, professionals are there to help, but, like all humans, there are more and less helpful and invested people. We were surprised in good and not so good ways.
7. Let someone know you love, care about and value them.
Marlin often gotten frustrated with Dory, but he realized that in her innocence, she was fearless and she got him to do “crazy things” like jump jellyfish and outsmart sharks to help find Nemo. His approach to problem solving became asking himself what Dory would do.
In the film, Marlin apologizes to Dory for not having told her how much she did for him. That’s not a regret anyone wants to have. Take any opportunity to share kind and loving moments and memories. The frustrations and resentments will ebb and flow, but the appreciation and love we have for each other should always flow.
8. “What is so great about plans?”- Dory
We certainly need to have plans in place, and even back-up plans, but when you’re dealing with illnesses and caregivers, you’re also dealing with human beings and unpredictable factors. For example, I prepared to go to work every day, but there were days that I had to stay home at the last minute for a variety of reasons. I remember that on some of those days, my feeling Ben’s very loving appreciation and his feeling my unwavering devotion, made for beautiful days. You know you have to be prepared for anything, but expect the unexpected in good ways, too.
9. You can do whatever you put your mind to.
Dory may have suffered from “short-term remembery loss,” but she dove in and figured out what she needed to do to find her parents. She enlisted her friends to help her and remained determined. She didn’t give much thought to consequences, which did create some problems for her along the way. But, she forged ahead. Caregiving can be very overwhelming at times, in terms of the actual tasks and in thinking about the future. But, I always come back to Christopher Robin’s wise advice to Winnie-the-Pooh: you are braver than you believe, stronger than you seem, and smarter than you think.
10. Never underestimate the power of a cuddle party!
A little bit of whimsy, sweetness, and cuteness can lighten any moment. For Ben and me, that came in the form of generally anything Disney. My huge collection of Disney toys to cuddle didn’t hurt either! They comfort me now in grief, too.
11. Sigourney Weaver rocks! You need someone like her on your side!
Whether standing up to aliens or lending her voice to stand up for our marine life, she is a star! Sometimes I felt like that person for Ben, and at other times I felt completely inept. But I’m going to always keep reaching to be a rock star (well, maybe more of a Broadway show tunes or Disney star!)
All photos: Finding Dory, Pixar Animation Studios and Walt Disney Pictures, 2016
Grandmother Willow- Pochahontas (1995) Walt Disney Pictures
It wasn’t a matter of choosing to be a caregiver. My dad was elderly and was diagnosed with cancer. Shortly thereafter, Ben was diagnosed with ALS. I loved them and I wanted to be there for them, so, of course, I was their caregiver. I didn’t think about the implications of caregiving as their illnesses progressed, since things were too chaotic in the present! I look back now and indeed, it was crazy. I was working full-time as a teacher, running home after school and caring for Ben, and talking to my dad several times a day to encourage him to eat, listen to his worries and follow up with his doctors. I used personal days to accompany them to doctor appointments. On weekends I took care of Ben and also traveled by train to visit my dad and do his shopping. I didn’t take care of myself, which was apparent to everyone and to me. As Grandmother Willow from Walt Disney Pictures’ “Pocahontas” said, “Sometimes the right path is not the easiest one.”
I’ve remarked in other posts that Ben was incredibly brave and determined to stay independent for as long as possible, and since I felt that this attitude was helping him to stay in fairly good shape, I followed his lead and let him try to ignore what was happening to him. I believed then, and still do, that the right path was the one that let Ben deal with his ALS in his own way. For him, it meant that we went from crisis to crisis without a plan. It wasn’t easy for either of us.
When my dad was in the hospital and then in the hospice, I took family leave and traveled a few hours every day to see him. Fortunately, at that point Ben was fairly comfortable being alone, and he could contact me if he needed anything. We had a back-up plan with a couple of friends and one of his daughters. I do vividly remember one instance of being with my dad while texting and calling two friends to coordinate their going to our apartment to help Ben. At times like that, a sense of humor was as imperative as crisis management skills!
As his ALS progressed, Ben did not want to admit that he needed more care than I alone could provide. I knew that I was starting to fall apart from the pressure of juggling full-time teaching with full-time caregiving, and then, grieving the loss of my dad, who passed away after a couple of months in hospice. I didn’t think I had any options. This was the path Ben chose and I chose to join and support him on this awful journey. Ben depended on me. I saw how he struggled physically and emotionally with ALS and could not bring myself to pursue difficult discussions with him about his increasing need for more care and what I considered to be a selfish concern for myself in light of what he was facing. And, to talk of the future meant thinking about nursing homes, tracheostomies, feeding tubes, depleted savings and death. For me, it also meant thinking about life without him.
Like anyone who needs private care, we were worried about expenses because we worried about what we would need to do in the future. The progression of ALS is very unpredictable. But, when Ben became uncomfortable being alone, we did hire a caregiver for a few hours a day during the week. I woke up early to get Ben situated and he was alone for a short time until the aide arrived and then for a couple of hours until I got home. However, there were days that public transportation was delayed and he was alone longer than anticipated. Those were times of panic for both of us, and we were lucky that nothing ever happened. On some days I had to stay home because the caregiver was unable to come to work. Or, if Ben was not well during the night I was afraid to leave him alone at all and frankly, too exhausted to drag myself to work. My days at work were spent with my cell phone in my hand or pocket, just in case. It wasn’t good, it wasn’t easy, and there was not even time to think about if it was right, or exactly what to do to make it better.
Weekends are usually for rest and relaxation, but not for caregivers, or for the people who need their care. Ben looked forward to weekends because I would be with him, and I understood and appreciated that, but I felt isolated, stressed, overtired, and, when he was demanding and critical, I felt unappreciated and incompetent. The lifting and transferring also took a physical toll on me. His struggle with all daily life activities took an emotional toll on both of us. Ben was fairly homebound because our apartment was not accessible, but he wanted to go outside and enjoy the sunshine. Our relationship had shifted to patient and caregiver, and we were both frustrated, resentful and depressed. It was not a good situation but we loved each other so we pushed past, or tried to ignore, the rough patches. There were many times when I questioned if this was the right path, but we were somehow paralyzed. To change course on our path would have meant considering a nursing home, and we did not like that option.
The critical juncture in Ben’s path occurred when a respiratory problem landed him in the emergency room of Mount Sinai Medical Center in NYC, and he was admitted to the hospital. As fate would have it, and maybe as a sign that this difficult path was the right one, this happened just after the school year ended, and I was able to be at his side every day and frequently overnight. He chose to get a tracheostomy and a feeding tube. Of course, this was traumatic, and Ben could no longer speak or eat and was fully dependent on a ventilator. For both of us it was a difficult period of adjustment and reflection.
The ALS journey is never an easy one, and, after several weeks in the hospital, the path Ben chose led him to Mount Sinai’s wonderful Hertzberg Palliative Care Institute, where he received compassionate and wonderful care and he left this world with dignity, surrounded by love and music and even his favorite Disney decorations. And that, though definitely not easy, was right.