ALS

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.

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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

11 Awesome Insights From Dory and Friends About Caregiving (and Life)

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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.

  1. Some of the best help and support you receive will come from unexpected sources.

Finding Dory,Disney,ALS,Caregiving,Caregiver,GriefDory 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.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Illnesses are unpredictable and caregiving needs are unpredictable. Our moods are also unpredictable, particularly when we are stressed, exhausted and our Tangled emotions 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.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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!

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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!

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

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

Finding the Pixie Dust

The following piece first appeared on the ALS Worldwide web site. Please click here for more information about this wonderful organization. I believe that those of us who have experiences with ALS need to share our perspectives to broaden awareness and promote involvement in helping to cure and manage the disease. 

groupmickey

Ben Carrasquillo was my husband, and since we shared a tremendous love of Disney, I think it’s fair to say that he was sometimes my prince charming and sometimes he was my monster. He will always beloved, as Buzz Lightyear says, “to infinity and beyond.” Ben died on August 26, 2015 after bravely fighting a six-year battle with ALS. Memories do give me great comfort, despite the tears they bring.

So many of my memories with Ben are from Walt Disney World (WDW). Our first visit there was Halloween 2001. It was our favorite holiday, celebrated the not-so-scary Mickey Mouse way, and we had so much fun, especially when trick-or-treating and trading candy like the little kids.

We went back many times and he even proposed to me on Halloween at WDW. Despite scooters, electric wheelchairs and assorted other challenges, Ben let his inner child shine and he indulged mine too. I loved that about him. The Disney magic gets you, and somehow we really did believe that Mickey could help. Maybe he did, because Ben did pretty well with the disease for more than four years. We were able to return four times after his diagnosis. Those visits really became about reliving and making memories that we could always hold in our hearts.

In July 2014, I took Ben to WDW for one last visit. I wanted to plan a trip that neither of us would ever forget. It had its challenges – we had to bring another caregiver with us – but Ben was determined to have an incredible time, and he did. We did some new things, like a nighttime cruise where we could watch fireworks and meet characters. I also worked with the fantastic WDW Floral and Gifts team to surprise him by having our hotel room decorated for Halloween. His face lit up when we arrived outside of our room and there was a big banner with a pumpkin and blinking lights. He was completely blown away when I opened the door – it was like entering the Haunted Mansion. We kept all of the toys and decorations, and I brought them to his room in the hospital to recall those good times.

Although I cannot deny that there are tears for the ALS struggles and for the times we won’t have anymore, I am so thankful to be able to remember him smiling and laughing. I love the simple memories: Ben playing air guitar while the band played in the England pavilion at EPCOT, his trying on character hats and choosing t-shirts in the souvenir shops, our holding hands as we watched the fireworks displays, and his enjoying the freedom of getting around with the electric wheelchair.

Though some people look at the pictures and see how he became very thin with very swollen feet, and that he was wheelchair-bound, I see and remember the joy on his face.

 

Have Courage and be Kind

 

This piece originally appeared at TheCaregiverSpace.org

ALS,Caregiving,Grief,Disney,Cinderella

Photo: Cinderella (2015)
Walt Disney Pictures

 

“Have courage and be kind” is one of those wonderfully memorable movie quotes to live by that is so simple yet so profound.  In the 2015 action version of the Disney film, Cinderella receives this advice from her dying mother.

My husband, Ben, was truly courageous in how he handled his ALS throughout his six-year battle. He pushed himself to keep doing things like walking, using his computer and eating until he absolutely could not do them anymore. It helped him emotionally and, I believe, physically, too. I was his hands at times, and his mouth when his speech became impaired. He maintained a good sense of humor, especially when I got creative with the food processor to make meals for him when chewing and swallowing were difficult.

People also called me courageous and it never resonated with me. I didn’t have to deal with that disease and dying.  But, I’m finally realizing that as caregivers, we are, indeed, courageous in dealing with the many changes in our lives and in the lives of our loved ones, and in helping them deal with these changes. We compassionately provide care. We provide comfort and cheer when they seem out of reach and hard to feel. We have conversations that are so difficult about things we wished we would never have had to consider. In my case, I had to face a future that would not include Ben. But, so importantly, we need to be kind in the midst of these very stressful and emotional situations. It may seem obvious, but it isn’t always easy.

From our own perspectives, Ben and I were both overwhelmed by the amount of help he required, the way his world was shrinking and how our lives were changing forever. Our relationship was shifting from husband and wife to patient and caregiver, and that did not come easily. We didn’t always handle it graciously. Our feelings got hurt, our patience was tried, our moods sometimes were sad and depressed. There were times when I wondered what happened to my kind and loving Ben. To be fair, I’m sure he felt the same way about me. Sometimes we would try to talk it through, and sometimes it was just too difficult. Something would bring us to a loving center–and it was usually something simple, yet kind–a smile, a thank you, or when he couldn’t speak any longer, a long blink, which was our sign for a kiss.

I still have to remind myself that ALS affected Ben in so many ways and that underneath the difficult behavior was my real Ben and his real Abby. The rough times often made me question whether I was a good enough caregiver, and that has stayed with me. I got angry that he did not express appreciation for and was very critical of my caregiving at times, but then got angry at myself for thinking that my feelings were important relative to his needs.  Then, I questioned if I deserved any appreciation because maybe I was not doing a great job. I have been reminded frequently to be kinder to myself. Maybe my courage is now found in facing the memories with love but also with honesty.

In addition to the dynamics of our relationship, there were the times we had to deal with various professionals regarding his care. These were not necessarily medical professionals. They were often administrators who advised on health insurance and financial paperwork, or a variety of social and other services. There were so many questions, such confusion, and overriding fear about his future. We both had to courageously persist to ensure good care and financially sound advice. Some people were kind and helpful, and others were not. My dad taught me long ago that you get more with honey than with vinegar, and kindness did come in handy, even in keeping me calmer, though it did not necessarily lead to better information. That was a constant struggle. But, when things are not going very well, and you are tired and scared, and you feel like you repeated yourself too many times and are not getting any useful help, being kind does take a lot of effort!

Maybe it seems odd to say that at times I had to remind myself to be kind. After all, I like to think of myself, as I think many people do, as a kind woman. But, when you’re not at your best, physically and/or emotionally, kindness is not always the first quality that comes to the surface. I do know that with Ben and me, when we stopped to remember the love, especially when we were frustrated to tears, the kindness did invariably come through in the caring. And, it made things better.

Cinderella’s mom gave her very good advice!  I call that kind of inspiration pixie dust for caregivers (and for everyone else, too).  Ben and I loved all things Disney, and as a caregiver and in grief, I found much comfort in quotes like this one. And, by the way, I thought this was a beautiful remake of the animated version.