Caregiver

One Dance

This beautiful song by Chris Martin, and performed by Jodi Benson, never made the final cut of “The Little Mermaid.” I discovered it on “The Essential Collection of Disney Love Songs” and it also appears on other Disney albums. Unlike many other Disney memories that I share on this blog, this song was not one that held a specific meaning for Ben and me, and it did not represent a special time in our lives or relationship. It was not even associated with our time spent at Walt Disney World. But, it is the song whose lyrics spoke to me at a critical time when Ben was in the hospital. Given Ben’s profound love of music, I believe that he would appreciate that it was the lyrics to a song that proved to be so powerful to me.

As the title of the song might imply, Ben and I loved to dance. Nothing fancy, but we would put on music in the apartment and just dance. And, when we worked together at The Little Orchestra Society, we always danced at the organization’s events. It was romantic, silly, fun- it was us.

Before he ever went to a doctor, much less was diagnosed with ALS, Ben started having trouble with his legs. It took him a long time to admit to me that he had fallen down the steps in the subway and on the street, though he had told me that he was perplexed that I could do my Zumba routines better than he could- coordination and grace are not my strongest suits!

The first and last pictures on this slide show were taken at the Bar Mitzvah of my good friends’ son. Ben’s legs were bothering him but he wanted to dance. We were having so much fun at this happy event. As it turned out, this was the last time we danced together. Who could have guessed? I am so grateful to have this photo!

As it became more difficult for Ben to stand on his own, music and dancing still played a part in our lives. While he could still walk several steps, sometimes I would just help him up and we would hug and sway to the music. It felt like dancing, and like old times, and that felt good.

I remember that during our first visit to Walt Disney World after his diagnosis, I was helping him to stand up from a rather low sofa in our hotel room. I counted to 3, but then, remembering the song “1,2,3” by Gloria Estefan, I added the song lyrics, “4, come on baby say you love me!” From that point on, we rarely just counted to 3 and he often laughed as I reached “3,” waiting for me to add the rest. As the ALS progressed, Ben was less and less mobile, but our counting and that song continued to make us laugh. Transferring a person is not easy, and it can be stressful because there is always a risk of falling, or dropping, so it was good to have these little moments of levity.

Our lives changed drastically, but because it happened over a period of almost six years, maybe some changes felt more subtle. ALS slowly took away Ben’s ability to use his legs, his arms, his hands, his voice. He couldn’t eat foods unless they were pureed. He had difficulty breathing. But, he was still Ben and he had determination (at times, stubbornness) and a good sense of humor. He was also clever and he loved gadgets and technology. For example, he used an app and an on-screen keyboard to use his computer and to send texts through his computer when he could no longer handle the phone. He figured out how to organize some of his things so he could make them accessible. These are just a few of the things that were part of living with ALS. We adapted as best we could.

Ben adjusted to the things he could and could not do as the ALS progressed and I adjusted to new tasks to help him. When I think of Ben’s very serious challenges, it may seem silly to lament an inability to dance. But, dancing was one of the things that was so special, so intimate, so us. In the chaos of the disease, I can’t say that I thought to analyze how much the changes in our lives were affecting us beyond our daily routines. I can’t say that either of us even had, or took, the time to dissect the dynamics. We just kept going. But, losing something like dancing made more painful the shift in our relationship from husband and wife to patient and caregiver. Impromptu moments like dancing to a favorite song were replaced with the more immediate tasks of caregiving. To mention missing things like dancing meant the possibility of upsetting Ben, and making myself sadder, because things were not going to get better and we could not change that fact. Sharing a memory was wonderful, but expressing sadness about our losses was not.

Eventually, yet in a pretty rapid and intense decline, Ben began to have more and more difficulty breathing and eating. His feet were also swelling very badly. He opted to get a feeding tube. However, just before the arrangements were made, Ben ended up in the Emergency Room and he got a feeding tube and a tracheostomy. It felt like it happened in a whirlwind and yet it felt like time stopped. So many decisions to make, and so many adjustments. Suddenly, we could not even communicate in the same way. It was frightening and devastating, but he was so incredibly brave and calm. It was clear that he was not going to be able to come home because he would need 24-hour nursing care, and, intellectually, I understood that. But, I believe that my mind was spinning too much to think about what it really meant. Ben was frustrated and upset about not coming home, and that broke my heart. I was worried about him not being home and my not being able to be with him constantly, but I was also dealing with logistics and his medical teams, and simply being present for him as we determined next steps.

I spent every day and several nights with him during the nearly two months that he spent in the hospital. I usually got home very late at night and sometimes relaxed with music, using Ben’s computer for his playlists, which I found comforting. One evening, I remember sitting at his desk when “One Dance” played. I thought about the fun times that Ben and I had dancing in the apartment and I realized just how much I missed those moments. I had done pretty well with recreating memories, especially when we returned to Walt Disney World for our last visit. But, in that instant of hearing the lyrics to the song, the realization came crashing down on me that we would never dance again, and he would never be home again, and he really was going to die. Maybe you’re thinking that he had ALS, so, of course, he was going to die. Yes, I did know that, but that does not mean I truly accepted it or the fact that the time was nearing. But somehow, hearing those lyrics was a jolt of reality that I had not yet faced.  On that quiet night, listening to this song, I finally accepted and reacted to what I had not until that moment let myself fully believe–that Ben would soon leave this earth and nothing would ever be the same.

There are stars that fill the night, can you see them? 
There are two, or three or gee, a million more 
And I see you in their light 
Oh, me? A dance? All right. 
Just to move and glide with you across the floor 

I would change who I am 
Leave the sea for the sand 
Just to stand with you 
I would leap at the chance 
For a glimpse of a glance 
Of one dance with you 

I still listen to the song even though it always makes me cry. In fact, sometimes I play it when I need a good cry, because, yes, there are those times. I have become unapologetic about embracing sadness, because, frankly, there will always be the tears over the loss of Ben, and how much he and we lost. At this point in time, however, I think it’s a matter of my finding the balance between grief and life. It’s not an easy balance to find, but I do feel a steady shift in my perspective that’s allowed me to bring more joy back into my life while I keep Ben in my heart.

It makes perfect sense that the clearer memories are the more recent ones, during Ben’s ALS, when the physical and emotional issues and tension were center stage. Those issues were not unique to us or even to ALS. They certainly are not the memories I want to define us. However, they are important in their own way, because they represent a strength of heart, love and compassion that saw us through such terrible experiences.

I also want to let myself get transported back to those dances and special times that made us who we were together. The memories I cherish, and that belong only to Ben and me, are simple joys like dancing and, of course, anything related to Disney! I will always miss those times, and I will always know that I am fortunate to have had them. I am pretty sure that I also always will believe in happy endings, pixie dust and Disney magic, too.

One dance, just you and me 
Beneath the moon, beside the sea 
One dance and it’s happily ever after 

Get Some Pollyana In Your Life with The Glad Game!

 

Do you remember Pollyana, the eternal optimist from 1960 Walt Disney Productions film of the same name, and based on the novel by Eleanor Porter? Pollyana always saw the bright side, and although at first, she got on the nerves of cynics, she ended up endearing herself to them and enriching their lives. As caregivers, it’s easy to lose a sense of optimism, or to see the bright side of life. I remember waking up and dreading what the day might bring. A day without a crisis was a great and welcome surprise, but I didn’t dare expect or anticipate it. I did hope for it. Grief carries that same tug of emotions. I have a lot more good days now, so it hits me hard when I am caught off guard by something that triggers tears or sadness. I sometimes try to avoid things that I think will make me sad, but I cannot anticipate what might cause the grief to surface. It occurs to me that in these down times, I need a little Pollyana in my life!

There’s always a pressure to be in the holiday spirit, and that can be stressful for anyone. I’ve been feeling a little down since Thanksgiving. It bothers me because I’ve been feeling more empowered since I went to London. I can intellectually understand the grief, I can analyze it, I can say that what I am going through is completely normal. Grief, however, is sneaky and unpredictable. And, I have become more  self-conscious about grieving. People ask how I’m feeling and I’m not sure how I should react. If I say I’m fine, they either respond with “really?” as if I am betraying my loved ones or could not possibly be fine, or they have a sense of relief. Of course, there are the people who are genuinely interested and are happy for my good days, but sympathize with my bad ones. But, there are also the people who have given me a time frame for grief, and are impatient if I do not appear to have “moved on,” or those who have lots of inappropriate and unsolicited advice, and, for those people, I am never anything but superficial in my responses. I don’t see any point in foolish discussions or being defensive about my feelings. I do, when necessary, rely on the wisdom of Scar (click here for that post).

I do love the idea of the holidays, and I do love my decorations, although now they hold memories that are bittersweet. Since I was a young girl, I have loved being in NYC during the holiday season and I have so many fond memories of looking at all of the department store windows with my mom and my aunt Eleanor. The streets here are vibrant, with holiday windows, pretty lights and holiday craft markets. I try to focus on those good memories, but I can’t seem to keep my thoughts from drifting to the winter of 2014, when the only lights I saw were from the car window as the taxis brought me to and from the hospital, where I visited my dad until he went to the hospice, and then I saw lights from the Long Island Rail Road train. After he passed away, I was Ben’s caregiver, so there was little time to wander the streets. Last year, after Ben passed away, I had the time to the see the holiday windows and I even wanted to feel the excitement. However, I quickly realized that it was too soon after losing Ben and I was hurting from the loneliness of my first holiday season without him. There were simply too many thoughts of recent sad holidays.  Having the time did not mean that I had the desire or the motivation to enjoy things, and certainly not in the same way. Those thoughts began to plague me again during Thanksgiving. I had the opportunity to view Bloomingdale’s holiday windows a couple of days ago and I used a little Pollyana enthusiasm, and was even proud of myself for not avoiding a potential trigger of sadness, but I found myself just going through motions without the excitement I used to have.

Watching Walt Disney Productions’ Pollyana recently, I was reminded of her wonderful world view and of the “Glad Game.” This was a game that Pollyana’s father taught her to deal with disappointment. You turn every bad situation around and think about something you’re glad about regarding that situation. What a gift to be able to always see a good side of things, even if it signals a bit of naivete. I was inspired by watching this sweet little orphan tirelessly bring cheer and optimism to everyone.

Given my current less than upbeat mood, I decided to play the “Glad Game” like Pollyana, and here are a few things I learned:

  • Being a caregiver was difficult and heartbreaking, and the memories of those experiences continue to weigh on me. There were times of high tension, anger and resentment on my part and on Ben’s, which time has helped me to better understand, but which have also left me somewhat scarred. But, I’m glad to have been able to take the opportunity to show so much love and caring to him and to have had such a profoundly loving and rewarding experience. And, I’m glad that over the course of our 16 years together and while he was in the hospice that we shared great love and appreciation for each other.
  • I’m still sad that my dad isolated himself and did not let himself enjoy life while he could. I always hear that I was his whole world, and that means everything to me, but it was also a huge responsibility as well as an exhausting task to always try to motivate and cheer him up (I think my dad would even have been a challenge for Pollyana). But, I’m beyond glad that I made him so happy with the books and gadgets I brought him, our many daily conversations, hearing about my adventures, and my constant presence, caregiving and love. That’s a uniquely special feeling.
  • I’ve lost the people in my family I was closest to in this world and I miss them every single day. But, I’m glad to have had those deep and meaningful relationships and, in the case of my dad and Ben, that I could be the person they turned to as caregiver. I carry all of them with me in my heart and I know that their strong influence is reflected in the person I am.
  • During these family holidays, I have very little sense of family and very big sense of not belonging anywhere. But, I am very glad to have wonderful friends who include me as part of the family, and they have become my family.
  • My holiday ornaments bring back memories that are beautiful, but are also reminders of memories I can never relive. But, I’m so glad and lucky to have had the experiences that created those memories. I am glad that I am still able to smile when I look at them, even if I smile through tears. I’m also glad I found the strength and zest to begin to create new memories, even though I have not quite worked through how to weave together past and present.
  • My emotions are all over the place and I feel very vulnerable and unsettled. But, I’m glad that am a creative and resourceful person who can blog to help myself and engage with other people who struggle as caregivers or grievers. I’ve been inspired and comforted, as well as validated, by much of what I’ve read, and I hope that my words have a positive effect on other people.

So, did the “Glad Game” help me? For me, I think that the notion of “glad” is a little simplistic, and it’s more about gratitude. But, to get myself into the habit of trying to look at things from a different perspective, as the “Glad Game” does, serves me well.  I think it would serve most of us well. And, it might help caregivers get through difficult circumstances. When I was a caregiver, my feelings and emotions were very conflicted- I was satisfied yet frustrated, strong yet weak, giving yet resentful, optimistic yet pessimistic. Coming out the other side of that experience, and now in grief, I see that caregiving has changed me at my core. Some of the positive and negative ways are visible and I believe that there are other aspects that I have yet to discover. I feel that in some ways I found myself and for that I’m glad, or grateful. I see that I am comfortable as a caregiver and maybe that’s why I always loved the field of education and teaching. I do not romanticize the experience, or forget the extreme hurdles, but I treasure the unique relationships that developed as a result of caregiving. I am even pursuing certification as a caregiving consultant beginning in January 2017. I have a heightened sense of gratitude that has improved my outlook and sense of myself. I am a compassionate person, and the compassion I’ve seen in others has shown me that compassion will reveal itself where least expected. I am most assuredly glad about that, because that is the kind of magic that keeps me believing in pixie dust and wishing on stars. Maybe I do have a little bit of Pollyana in me after all!

Try the “Glad Game.” And watch Pollyana. Please get back to me and post your comments in the space below.

For those of you who remember the TV series Bewitched, the woman in this clip, Agnes Moorehead, was Endora!

Film clip: Pollyana, 1960, Copyright © Walt Disney Productions

 

Special Film, Special Date, Special Memory

 

Beauty and the Beast Walt Disney Pictures

Beauty and the Beast
Walt Disney Pictures

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.

Superheroes of Caregiving and Grief: Gratitude and Perspective

Ben and I at Walt Disney World, July 2014

Ben and I at Walt Disney World, July 2014

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

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.

photo-7

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.

Happy Thanksgiving.

With all good wishes,

Abby

A Happy Birthday Card To Mickey Mouse!

Mickey and Us
Happy Birthday, Mickey Mouse!

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!

Mickey Mouse, Walt Disney World, Disney

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!)

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

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.

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

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

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.

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

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.

I will always love and thank you,

Abby