Caregiver

A Happy Birthday Card To Mickey Mouse!

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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)

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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.

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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

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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.

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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

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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

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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!

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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

Sometimes the Right Path is not the Easiest one

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Caregiving,grief,ALS,Disney,Pocahontas

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.

 

 

 

 

 

Finding the Pixie Dust

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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

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This piece originally appeared at TheCaregiverSpace.org. 

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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.

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