ALS

November 13, 2016

Sometimes the Right Path is not the Easiest one

abby_admin ALS, Caregiver, Caregiving, Disney, Uncategorized 3 Comments

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.

November 6, 2016

Finding the Pixie Dust

abby_admin ALS, Caregiver, Caregiving, Grief, Uncategorized ALS, caregiving, Disney, grief 0 Comments

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.

November 5, 2016

Have Courage and be Kind

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiving, Cinderella, Disney, grief 0 Comments

This piece originally appeared at TheCaregiverSpace.org.

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.

November 4, 2016

Chicken Little Has a Big Message!

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiver, caregiving, Disney, grief 0 Comments

Chicken Little (2005)
Photo: Walt Disney Pictures

On this day, November 4, in 2005, Walt Disney Pictures released “Chicken Little.” I think it’s a cute movie that also has good messages about acceptance, believing in yourself and never giving up in fighting for what you believe in.

This quote felt like a caregiver’s cheer. As a caregiver, there were so many times that I felt that the sky was falling around me. There was, of course, Ben’s actual physical deterioration as his ALS progressed. My increasing caregiving responsibilities were stressful, as was watching Ben struggle, knowing that it wasn’t going to get better but trying to deny it. The emotional toll that took on him was devastating to witness. My giving up was not an option, because Ben needed my help! And, if he wasn’t giving up, even as ALS took away his ability to walk, use his hands, swallow and ultimately, talk, then neither was I!

To be honest, the idea that “every day is a new day” could often be scary. Every day posed the possibility of a new problem. At the same time, every day did present an opportunity for things to be okay, or stable. We hoped for that and there were many good days. Good days could be times when we had a lot of laughs, or Ben was comfortable, or I was able to transfer him easily and without pain (to either of us), or I made a tasty pureed meal in the food processor. Good days were days without frustration, resentment and sadness. Good days were days that we both felt that I was in control of all that needed to be done.

What did I do when I felt like the sky was falling? Sometimes I gave in to the emotions and cried and that did somehow leave me feeling better and calmer. At other times, I needed to take little “mind breaks.” Computer games and surfing the web often proved to be a good distraction. Watching movies, especially Disney ones, also allowed me to escape while still being present. Writing, whether in my journal, or in my book of Disney inspirations, also helped me to focus and sometimes to work out my feelings. I do find that a nice cup of tea also helps me to slow down and regroup.Emails and texts to my friends helped ease loneliness and reassured me that I had a network of support. I couldn’t go out very often, so keeping up with friends in this way allowed me to feel connected to the world. Sometimes I just sat on the sofa with Disney, my cat, while Ben watched TV in the other room. I needed space and there isn’t much in our tiny NYC apartment. And, if Ben was comfortably settled, a bubble bath was a really great retreat.

In grief, I find that this quote also resonates. The pain and loneliness can be awful and the idea of shaping a new life can seem impossible, but I never give up and indeed, after a little more than a year, I feel like I’ve cautiously stepped back into life. I certainly have my setbacks, but I know that every day is a new day, and some are better than others. I try to acknowledge every baby step I take as I heal. Indeed, it was a leap forward to go to London and celebrate my birthday last month. It has been a hugely comforting realization that Ben and all of my memories- the carefree, loving ones as well as the ALS and caregiving ones- will always be a part of me. The future is still daunting, and the present is still lonely and sad, but I have more pleasant days and feel more optimistic now.

I suggest to other caregivers that it’s very important to identify things that make you feel better when it seems that the sky is falling. A network of support is also crucial. Make a list now, before an emotional crisis, of people and places that you can turn to. Maybe some of my ideas will help you. I wish I knew about the Twitter chat support groups while Ben was still here. I find them useful now, too. If there are things that help you, please share them in the comments. For now, listen to the little chicken’s message!

October 31, 2016

Not Your Ordinary Walt Disney World Halloween!

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, Disney, Halloween, Walt Disney World 1 Comment

Meeting Monsters Inc Sully and Mike. Ben LOVED Sully!

Halloween was the most fun holiday for Ben and me, especially when we were at Walt Disney World for Mickey’s Not-So-Scary Halloween Party. Halloween is extra special for me because Ben proposed to me at Walt Disney World on Halloween. It was very exciting and, of course, I told all of my Disney buddies! Ben never tired of teasing me about my ability to talk to all of my friends. Why wouldn’t I?!

There are so many videos and photos of our amazing times, but, of all of the fun Disney times we had, I think that a most poignant memory was the Halloween celebration we had back in July 2014. That’s right, July. This was a very special trip, because I think that Ben and I both knew that it would likely be our last visit to Walt Disney World, as Ben’s ALS was progressing more rapidly. I wanted it to be a most incredible trip with lots of surprises.

Traveling to Walt Disney World was stressful but Ben really did have an amazing attitude. I will write some of the details to give an idea of considerations that have to be made when dealing with ALS and other disabilities. I think it was a combination of realism, naivete, determination and pixie dust that enabled me to make these plans! First, we needed to bring another caregiver. I was advised by Ben’s doctors and the ALS team that I should not do this alone. Ben wasn’t happy about it, since another person did change the dynamic, but he had to relent and I had to be strong, since I was nervous about how much assistance he required. Getting to the airport was a bit complicated, since Ben was pretty much homebound at this point. I had to hire an ambulette service to get him down the stairs and safely to the airport. I contacted JetBlue, which was great each time we flew, before and after Ben’s diagnosis. They helped me to choose seats and let me know exactly what to do when we arrived at the airport. We were taken through security with relative ease and he was literally lifted and placed into his seat by a very kind and accommodating crew, one of whom revealed to me through tears that his brother had ALS. Ben was calm and in good spirits, while I was a smiling nervous wreck!

Disney’s Guest Services Department was very helpful and supportive when choosing a room, coordinating transportation to the hotel with a bus that had a wheelchair lift, and arranging for the electric wheelchair to meet us at the hotel. They even put me in touch with a local pharmacy that delivered Ben’s nutrition supplement to the hotel. It was waiting for us when we arrived! We had a room with a roll-in shower, which was such a treat for Ben. We take a lot for granted in life, don’t we?

Ben even had fun on the Magic Express wheelchair lift!

This was going to be a very different trip because so much about Ben’s physical abilities had changed. Ben wouldn’t be able to go on his favorite rides, Pirates of the Caribbean and the Haunted Mansion. Eating was also a big challenge. Because of these obstacles, I wanted to arrange surprises for Ben that would be fun and unusual. Ben knew I had surprises in store, but he didn’t know what I had planned.

Disney has a wonderful Floral and Gift Department (click here to visit the site) that offers a variety of gift packages that can be delivered to your hotel room. They had a Halloween package but it was available during the Halloween season. I called and explained our situation, making a special request for a Halloween hotel room even though it was July. Disney is about magic and dreams come true, and they did not disappoint! When we arrived at our room, outside was a banner that said “Spooktacular Halloween July 2014!” It had a pumpkin with blinking lights. Ben thought it was a promotion for Mickey’s Halloween Party, but he still got excited. When we opened the door, the room was like a little Haunted Mansion and Ben was completely shocked, thrilled and emotional. I thought that if a full day at the parks was difficult, the room would also look very cool, and indeed, it did, but Ben did great at the parks! I was the one having a hard time keeping up with his zipping around in the electric wheelchair!

Since we were bringing Ensure to the parks in case eating was a problem, I had also ordered from the Gift and Floral Department an insulated backpack with some goodies. Also, we were joined by a giant walking Buzz Lightyear balloon. Here are pictures of some of the magic.

Ben was excited just to see the banner! He had no idea what awaited him inside!

Mickey Mouse and Minnie Mouse all dressed up for Halloween in July!

Treat baskets in our room, and a projectable haunted house that shone a haunted house on our ceiling!

The candelabra in our haunted hotel room!

Our hotel room was very fun!

I learned that there was a Pirates and Pals Fireworks Cruise with a party where you could meet Captain Hook and Mr. Smee. When I found out that the boat was accessible, I had my next surprise for Ben! The day of the cruise, I gave him as a hint a little pirate coin I’d found at one of the gift shops. His first guess was that I’d arranged for him to go on Pirates of the Caribbean, which, sadly, I couldn’t do. We took the monorail (also accessible) to the Contemporary Hotel, where the party began. Ben laughed when he saw the really great pirate-themed decorations. We were given bandanas, too. One of the truly brilliant aspects of the Disney team is that they never make someone with disabilities feel uncomfortable. A cast member came and escorted us with no fuss on an accessible path to our boat. The cruise was so much fun, the fireworks looked magnificent from the water, and, as a surprise, Peter Pan was on the dock to greet us when we returned! OK, so I was more excited than some of the children! There were tears and there was joy as we listened to the “Wishes” fireworks lyrics, but watching the delight on Ben’s face is something I will never forget.

Walt Disney World, Pirates,Fireworks,ALS,Halloween

At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee.

Ben loving the Pirates & Pals Fireworks Cruise.

Ben had not had a proper haircut in a few months, so I arranged for him to have a haircut and shave at the Main Street Barbershop. He was a little bit apprehensive, but, as I’ve said, he had such a great attitude, and he ended up having a great time. The staff accommodated his electric wheelchair and made him completely comfortable. Outside of the barbershop he met up with the Dapper Dans, the singing quartet he loved.

Ben got a kick out of getting his hair cut on Main Street, especially because it was decorated like an old fashioned barber shop.

The Dapper Dans were very cool! Ben always loved them.

We loved our usual attractions, and Ben loved the new Little Mermaid attraction, where his wheelchair could go right into the clamshell. Of course, we were happy to see our friends.

Buzz was one of Ben’s heroes, but he loved Woody and friends, too!

bengoofy abbyjoy

We visited the Wishing Well at Cinderella’s Castle, which was emotional. We also became overwhelmed when we met Mickey and Minnie at Epcot. Maybe it’s silly, but when dealing with something like ALS, you just want to believe in magic, or something, that will make things better. People sometimes ask me how I can believe in Disney magic, or that dreams come true. I just do, even when it’s difficult. After all, Ben did okay with ALS for about 4 years, and we were fortunate to be able to travel to Walt Disney World many times, even after his diagnosis. We shared a lot of love and wonderful memories that he relived daily as he looked at our many photos and videos. We even had Halloween in July! And, he left this world surrounded by music, love and even Disney. Maybe it’s a matter of perspective, but I feel the pixie dust.

At the Walt Disney World Wishing Well at Cinderella’s Castle

Happy Not-So-Scary Halloween!

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