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Happy Anniversary, Peter Pan! On Caregiving, Grief and Thinking Happy Thoughts

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ALS,Caregiving,Grief,Walt Disney World

Ben and I with Peter Pan and Wendy
Walt Disney World 2006
Before ALS

Peter Pan was originally released on February 5, 1953.  Ben and I loved the film. What adult has not chuckled at how they spent their childhoods waiting to grow up just to wish that they had stayed children?  I am a firm believer in embracing my inner child. Ben also loved to tap his inner child. Walt Disney World is a place where it is a requirement! Maybe that’s why Ben and I loved it so much!

 

February is a difficult month for me. My dad’s birthday and date of his death, Ben’s birthday, the anniversary of my grandma’s death. In two days I will mark the first anniversary of the loss of my sweet cat, Disney. A lot of milestones within a short period of time. Think happy thoughts. It’s not always easy when I’m feeling down, but it’s also important and helpful for me to remember the good times, even if it makes me cry. Thank you, Peter Pan, for that good advice.

 

 Think happy thoughts took on a whole new meaning when Ben was struggling with ALS and I was struggling with caregiving. ALS is known to be a very isolating disease. I’m sure that even when he was not literally alone, Ben felt isolated. I felt so helpless when Ben hurt because sometimes, it was so hard to speak to explain himself and be understood, that he just shook his head and stopped trying. Also, with every day came the dread of what ability he would lose. Sometimes he simply had a bad day and other times there was an obvious change in his health. There were days when I was able to care for him without any problems, but then there were the days when it was exhausting and overwhelming, and if I was having back issues, it was physically painful. We cannot walk in the shoes of our loved ones, we can only love them. Love is a lot. Thinking happy thoughts is a lot, too, because, along with love, it lets us remember who we were and what was important before illness changed things. When facing a terminal disease, the unhappy thoughts come easily. The happy thoughts seem surreal, and yet, they let us escape and remember. For us, happy thoughts almost always included memories of our visits to Walt Disney World. Ben spent so much time every day looking at the videos and photos from our visits to Walt Disney World. We loved to listen to the music from the parks, too. He went on their vacation planning web site to plan fantasy trips. I liked to see him planning because I felt it kept his head in living and focusing on what he could do. I truly believe it helped him manage the disease pretty well for about four years.

 

On those very difficult days when eating was a challenge, or there was a fall, or some other accident, or even just a lack of energy to transfer or be transferred, we had to remember, “All you need is faith, trust and a little pixie dust!” So much happens with illnesses and caregiving that is unpredictable and beyond our control. For me to maintain a certain state of calm that allowed me to be a problem solver, I needed to have faith and trust that things would ultimately be okay. The pixie dust was the whimsy that always let my inner child thrive in the midst of very grown-up, complex circumstances. Sometimes it was just a loving moment between Ben and me that would make us laugh. Sometimes it came from friends, sometimes it came from caring strangers, and sometimes it came from both of us taking a moment to remember the good and loving times. And, with faith, trust and pixie dust, we even made it back to Walt Disney World four times during his illness.

I named my blog Pixie Dust For Caregivers because quotes like these, as well as many Disney characters, films, lyrics and attractions from the Parks were the pixie dust that gave me perspective, inspiration, and comfort during the caregiving years and as I have been working through grief and rebuilding my life. They helped Ben, too. At times, they simply gave us much needed entertainment.

 

We did love the Peter Pan attraction at Walt Disney World. We loved to soar over Neverland on the pirate ship. Unfortunately, it is not accessible and has to be boarded while it is in motion. Ben had trouble with balance and walking early on, so it was the first ride we had to give up. Still, we never lost our love for Peter Pan and Tinker Bell. This past October, I went on the ride for the first time in more than six years. It will never be the same. I did not feel the same joy, but I also felt proud of myself for pushing myself to allow myself to step back into the experience.

Like any child, Peter Pan saw things very simplistically A couple of his comments gave me pause, but also helped me to reflect. A line in the song “You Can Fly,” is, “Think of all the joy you’ll find when you leave the world behind and bid your cares goodbye.”  I understand Peter Pan’s enthusiasm for Never Never Land. But, I couldn’t help hearing that quote and thinking that there was no joy or optimism in Ben dying. On the other hand, I wanted Ben to have peace and to feel comfort he had not felt in the nearly six years he bravely battled ALS. Tragically, ALS was not going away. He was not going to get better. He was miserable after he got his tracheostomy and feeding tube, and he made the decision to be removed from the ventilator. He was ready to leave the world. I am still glad that he was able to make that decision for himself. My own emotions were all over the place- devastation that I was going to lose him in just a few days, along with relief that he would indeed, leave his cares behind and be free from the physical and emotional pain and constraints of the disease that rendered him unable to breathe on his own, speak, eat or walk.

 

Peter Pan also said, “To die would be an awfully big adventure.” I don’t know that Ben would have called ALS an adventure, but it was a journey. Indeed, it was a very difficult journey that he navigated with much bravery. Now, I put faith, trust and pixie dust in the belief that Ben has “bid his cares goodbye” and he is in a peaceful place where he can walk and run and eat and talk and sing and use his hands to use the computer and play his instruments. That gives me peace.

 

I guess it’s my turn to think happy thoughts and have faith and trust that pixie dust will sprinkle good things on my future. It has certainly brought me a lot of love and good memories.

“All you need is faith, trust and pixie dust!”

Sleeping Beauty and Lessons in Caregiving From The Fairies

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Today marks the anniversary of the 1959 release of Walt Disney Productions’ Sleeping Beauty.

With the upcoming anniversary in mind, I watched the film last weekend. I have to admit that my favorite characters are the three fairies. In fact, after my cat Disney passed away and a new, small young cat and I adopted each other, I thought about naming her Merryweather, but it just didn’t flow off the tongue. Instead, I named her for another feisty fairy- Tinker Bell!

There is a scene when the fairies brainstorm ways to counteract the curse that Maleficent has placed on Princess Aurora. While Merryweather has the idea of turning Maleficent into “a fat old pop-toad,” Flora reminds her that their magic can only do good to bring joy and happiness.

Fauna believes that Maleficent probably isn’t very happy because she doesn’t know anything about love, or kindness or the joy of helping others. In the story, the three fairies decide to give up their magic and their identities and move to a secluded area in the forest to take care of Aurora until her eighteenth birthday, to keep her safe from Maleficent’s spell. Their entire lives turn upside down. They put Aurora’s needs before their own. That’s a scenario that is familiar to many caregivers. I watched this movie often while Ben’s ALS was progressing but I don’t think I saw the connection at that time. I think that I was too entrenched in the difficulties and what I thought I was doing wrong to see that the love and care in caregiving were always coming through and were nurturing Ben and me.

In my own story, when Ben was diagnosed with ALS, although he lived in denial about its progression, we went crisis to crisis and began shifting things in the apartment as necessary. I had to take many days off from work to help him or just to provide emotional support if he was having an anxiety attack. There were a couple of times that I thought my job was on the line until my principal helped me to arrange for family medical leave. I was tired and stressed, but that was not a priority. There was sometimes tension between Ben and me because I was having a difficult time juggling full-time work with full-time caregiving and Ben would not admit that it was difficult and that he needed more care than I alone could provide.

When the fairies were scrambling to make Aurora a beautiful birthday cake and dress without the use of magic, I thought of the many times that I would experiment with foods and the Vitamix, or help Ben to devise some kind of contraption to help with his lack of dexterity. The fairies wanted to surprise Aurora with a party, finding ways to get her out of the house so they could decorate. I thought of the many nights that I waited until after I had put Ben in bed to decorate the apartment for holidays or Ben’s birthday, so he would awaken to a surprise. I lacked the wand, but like any caregiver, I had to create a kind of magic to make life easier and entertaining. Only in retrospect can I see how it may have exhausted me, but it also fueled me.

We all have to deal with our Maleficents. These were the unreliable family members or even the completely unhelpful but judgmental health care professionals. Like Merryweather, I had some spirited fantasies, but they were more along the lines of banishing them from our kingdom! Alas, I, too, had to focus on the caregiving and vent to my friends the way Merryweather vented or fantasized aloud to Flora and Fauna.

Taken at Walt Disney World in 2002, the pre-ALS days.

As I look back at my caregiving days, I realize that although it was the most difficult work I ever did, it was the most important and loving work, too. The fairies were entrusted with Aurora’s life and they did whatever they had to do to protect and care for her. I was not as selfless as the fairies-  there were times that it made me angry and resentful to have to juggle so much, especially when Ben was not acknowledging that his ALS was progressing and I was losing my ability to “just keep swimming.” At the same time, I also would not have had it any other way. Ben knew that about me and I knew that about myself. Caregiving let me see that I found the most satisfaction and joy in showing love and kindness while helping Ben and my dad.  It wasn’t a matter of feeling happy all the time. In fact, I was not happy to Ben – and my dad- decline and to see our lives and future disappear. However, I felt purposeful and proud that I was the person they knew they could count on to always be there for them.  I realize now that I had the most true sense of myself when I was caring for and bringing joy to them. Although those days are behind me, I often reflect on them, and looking back through the lens of Flora, Fauna and Merryweather remind me of the valuable life and love lessons of caregiving.

Another favorite part of Sleeping Beauty is when Aurora tells her forest friends about the prince she sees in her dreams. She says, “If you dream a thing more than once, it’s sure to come true.” So, I will keep wishing and dreaming and feeling the pixie dust for cures for ALS and all awful illnesses, and for love and all good things. I hope you do, too, and I hope your wishes and dreams come true.

Thank you, Flora, Fauna and Merryweather, and Happy Anniversary, Sleeping Beauty.

Walt Disney World, July 2014

“Scent-sitive” in Grief

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I used to love to cook for Ben and my dad. Since I lost them, I haven’t really had the desire to cook. It’s not fun to cook for myself. Also, I am not a great cook, but I am a very good recipe follower, and recipes tend to yield a lot of leftovers when I’m just cooking for myself. The abundant leftovers only remind me that I am alone.

I wrote about my first foray into cooking and how it reminded me of this scene from the original version of The Parent Trap
(Walt Disney Productions 1961.)  You can click here for the link to that post.  Other than making an omelette for myself and simple microwave or stovetop things, I haven’t cooked. Today, I decided to make chili. I found a recipe, got all of the ingredients, and got to work. I was keenly aware that last time was very emotional, and it wasn’t long before I was heading toward the same place. As soon as the apartment filled with the smell of the onions and vegetables, I remembered how Ben loved when I would start cooking and he would smell onions and garlic. I decided to talk to him while I was cooking, which still had me in tears but also smiling. I did experiment a bit with the spices and it worked out well. I am proud to say that it was delicious. Ben and my dad would have been proud, which is important to me.

I do have a lot of leftovers, which does make me feel lonely. And, I had to do the dishes. Ben and I had always split the responsibilities- if I cooked, he did the dishes. It wasn’t as difficult as the first time I cooked, which is good. It was a food that I never made for Ben or my dad, and maybe that was helpful. I did expect and prepare myself for sadness, but I didn’t force sadness or keep myself from delving into the activity, open to enjoying it. While it wasn’t fun like it used to be, I coped by talking aloud to Ben. It’s a way that I co-exist with grief- looking back with sadness but also good memories, and continuing to take the baby steps forward with the knowledge that Ben and my dad are still with me.

 

Happy National Hugging Day! Who Needs A Hug?

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Who wouldn’t be happy with a big hug from Mickey!?!?! July 2014

Today is National Hugging Day. Why not? There’s a National Day for everything!

Ben gave the best hugs. As his ALS progressed and his arms became weaker, he could no longer hug me. I remember, in particular, that he felt terrible that he could not hug me when I got the phone call that my dad had died. I remember being afraid to hug him tight, too, because everything felt so heavy to him. It’s strange that a day celebrating something joyful like hugging should trigger sadness, but that’s the thing about grief and loss. I miss Ben’s hugs.

Fortunately, there are so many good memories, too.This picture is one of my very favorites. The story is interesting and, I think, worth sharing.Ben and I were always so happy to meet Mickey and Minnie. As his ALS progressed, Ben still tried to walk to see Mickey. I knew that it was getting bad when he stopped trying to walk and just rode his electric wheelchair up to Mickey. I was always the one who got super excited to see my friends. In this photo, we had just entered the room and were greeted by Mickey. He actually spoke to us. I was just shocked and he reacted with surprise at my shock, so I started laughing.

What you cannot tell by looking at the pure happiness on my face is that this picture was taken on our last visit to Walt Disney World in July 2014. It was a truly wonderful visit, but stressful because Ben needed much more assistance (we brought a paid caregiver with us) and because we knew in our hearts that it would likely be our last visit. You can read more about that visit by clicking here. The Magic Kingdom is very accessible, but making sure that Ben had what he needed, that there were accessible bathrooms nearby and that Ben would be able to fully enjoy himself did come with stress. Getting to meet Mickey without any issue and with Ben feeling truly delighted gave me a feeling of success and relief. What you also don’t see in this picture is that I whispered in Mickey’s ear that we really needed some magic. Mickey just had to look at Ben in his electric wheelchair- unable to speak very clearly, very thin but with super swollen feet- to know there was a medical issue. Mickey held me tight and he patted my hand. He and Minnie gave Ben a lot of attention. It was emotional and it was beautiful.  I needed that hug. I needed to believe that Mickey could help.

I believe the Disney magic did help. No, it didn’t cure Ben’s ALS, but, being at Walt Disney World brought Ben such happiness, it allowed him to feel free, and, as Ben described, he forgot his problems, which is saying quite a lot. We had four years after his diagnosis during which we were fortunate to enjoy several visits to Walt Disney World. I do call that pixie dust. So was the hug.

I feel it’s an important story to tell because we never know what’s going on in someone’s head or their story. I love that this photo captured a very vibrant smile before the tears that came with the emotion. That photo reminds me that a hug from Mickey Mouse came with all of the dreams, wishes and comfort that is Disney magic. That hug was compassion. We all need to show and to feel that. Mickey didn’t have to say anything, didn’t have to offer any advice or judgment- his hug was the compassion that we needed.

This is another favorite picture of mine- Ben loved Sully, and when Sully saw Ben in the electric wheelchair, he ran over to him and offered to help him up. Sully gave Ben the biggest hug, which made Ben so happy. You can just see his inner child shining in this photo. It absolutely delights me to have these memories.

I send everyone a big hug of compassion on this National Hugging Day!

Two Goofy guys! July 2014

What Merida Knew About Coming Through Grief And Seeking My Destiny

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I never thought of myself as a brave person, though as I’ve reflected on my experiences in caregiving, I have often turned to what Christopher Robin told Pooh: You are braver than you believe, stronger than you seem and smarter than you think. I have reshaped my life as I have looked towards the future, and I have forged those steps, small and slowly paced as they may be.  At the same time, I have wondered about my destiny. There are things that I would like to do, but there are things that have not come together. This has led me to question my direction, success, and how I define my life.

After several years of caring for my dad and for my husband, Ben, losing them also meant losing a large part of my identity as a caregiver. I was not only grieving their loss, but also grieving what had revealed itself to be a significant part of myself.  I was surprised to realize that I missed being a caregiver. Although it was challenging and fraught with tensions and sadness, it was the most meaningful and loving work I had ever done. While I floundered about what to do with myself without the role of caregiver, I came to embrace that caring for people is who I am, whether as a caregiver or a teacher. I channeled Merida and determined that this was my destiny- the purpose of my life- and I had to look inside myself and see that in a positive way. I pursued my certification as a caregiving consultant, though I was never exactly sure how I would or if I would professionally put that skill to use. As a teacher and a person who loves to be around children, although Ben and I had no children together, I often thought about children who were watching a parent with ALS or any other terminal disease. I volunteered with my local ALS chapter to conduct an event for children with a parent with ALS. We did crafts projects, they had pizza and ice cream, and everyone had a chance to talk. I was invited to speak with a group of ALS caregivers to share my experience, try to answer their questions and offer encouragement. I wanted to do more events, and still hope that will happen, but the organization focuses on other important services.

I discovered another wonderful organization called Hope Loves Company. This organization offers programs- particularly weekend camps- for families affected by ALS. I volunteered to do scrapbooking workshops with children at two of these camps, and those have been fun and rewarding. It’s both heartwarming and heartbreaking to look at the photographs that the children put into their scrapbook and to hear their memories and experiences. These camps offer a unique and invaluable opportunity for children who have ALS in common to be with others who understand their situations without explanation. Since many return to camps, the bonds established among children and adults are strong. I feel grateful to be a tiny part of that. I hope and plan to continue to volunteer with Hope Loves Company, though the camp locations are a bit of an obstacle.

I tried to convince myself that I was embracing my destiny, yet I was not feeling the sense of fulfillment I would have expected. Maybe teaching and caregiving are simply well aligned to my personality. Teaching is my current career, and it is rewarding, but there has always been a tug within me to do more. I feel positive about my blog and the feedback that it brings joy, comfort and guidance to readers, but have been feeling frustrated and stressed that I need to expand it without knowing exactly which way to go. The volunteer opportunities to reach children who are caregivers have felt like a genuine movement towards my destiny. I have struggled to find a perfect fit, though my background in arts, education and teaching clearly lend themselves to working with this audience. I have toyed with the idea of starting a meetup group for children who are caregivers, but the obstacles leave me somehow stymied. I continue to brainstorm with myself and others about ways to reach children who are caregivers. I have frustrated myself that I can’t seem to get where I want to go, and that has left me wondering- or even worrying- that I don’t know my life’s destiny. I skeptically wonder if the whole idea of a destiny is just a Disney kind of ideal, yet I thrive on Disney dreams and wishes. I have not been able to let go of the idea that there is more that I am meant to do, but I have felt lost, and without confidence, about how to move forward. I have questioned if I have the ability to move beyond dreams and creative ideas.

Last summer, as I was doing some planning before the school year, I thought about my population of students. Over the years, I have seen that many students are caregivers, either for their younger siblings or for a parent or other close relative who is ill. These are the students who sometimes attend class and fall asleep or cry with their heads down. Or, they may be the students who act out with negative behaviors. Their grades sometimes suffer and academics keep moving down their list of priorities. These were the students whose attention I got when I mentioned taking care of my dad or Ben. They were students who loved the opportunity to do an art project and express themselves. I was someone whom they knew understood their experience.  It occurred to me that while I was searching for ways to help children, I had children right in front of me who needed guidance and compassion.

I spoke to my principal about reaching out to kids who are caregivers, and at his suggestion and encouragement, formed a club designed for kids to participate in crafts and activities that let them care for themselves and for others. I talked to the guidance counselors and some teachers about my club so that they could suggest it to students who might benefit. The club has brought together kids who want to make friends, who may be a little shy, and are also interested in volunteer opportunities so they can help others. We have been doing crafts activities and exploring volunteer opportunities. Unfortunately, an after-school program is not always feasible when a student has caregiving experience. I remember running home as soon as school was over to take care of Ben and calling my dad on my way home to check on him, too. The club was a start, and that was good, but I kept focusing on what I was NOT doing and that I was not exactly fulfilling what I had determined was my destiny. I need to learn to work on that in myself.

After the Australian wildfires, students came to school very upset about the suffering animals. I am an animal lover and was also devastated. I approached my club members about doing a school fundraiser on behalf of he animals. It was short notice, but there was a school play coming up in just under two weeks, and I thought it was a perfect opportunity to engage students and their families. I was delighted to see the kids come together with such enthusiasm, along with other former and current students, to support the idea. Colleagues also joined our effort. The kids helped in many ways- brainstorming how to market the idea, designing social media posts, baking, and working at our booth after school for the two days of our school play. So far, in just two days, we have raised more than $300 for the Australia Zoo’s Wildlife Warriors program. We will continue this effort for a few more weeks. The kids feel a tremendous sense of satisfaction, which will hopefully motivate them in the future.

It thrills me to see the students feel positive and successful. It makes me happy to see them socializing and making new friends. They want to help others. They have shared some of their personal stories about issues that have affected their own loved ones and we are seeking ways to volunteer to support those issues. In fact, the students even said that they would participate in an ALS walk to support me, which touches my heart. Though, at this time, children who are actually caregivers are not members of our club, the members are kids who are caring and compassionate and are using those skills in positive ways. They are, in fact, a group of children who are givers of caring!

I think that as we navigate grief, particularly after spending a lot of time as a caregiver, we flounder with where we belong. I have met so many former caregivers who cannot get far enough away from that experience. I understand and don’t judge that or any other response. But, if we delve into anything, even if it is a return to work and not a change in direction, it is so easy to become shaken. And, changes in routine and structure often lead to floundering. I knew that I wanted caregiving and volunteer work to be a part of my life without really knowing what that meant. For me, there is always the fear that trying different ideas will lead to failure, and that the failure will mean that I was on a wrong or unachievable track. Participation as a volunteer has given me insight to what I can do, but also raised obstacles that made me question myself. I began to feel that spent a long time seeking to fulfill a desire to help caregivers, never feeling that I was grasping this vague idea I had of destiny. I was been pleased with my accomplishments, but I also questioned my goals, my strategies and what I thought was my fate.

Merida was right- I had to be brave and open to look within myself and see not only what I perceive as the failures, which hold me back, but also the positive things that, actually, have been leading me forward. I am discovering that it’s the concept of fulfilling my destiny that needs to shift. There is no finish line, no check-off list to that end. My destiny is within me and can be seen in the evolution of activities along an ever-changing trajectory that lets me know that I have touched lives in a meaningful way.  I have had to stop searching for this unattainable destiny and let myself be brave enough to look within and know that regardless of the activity and its success or failure, I feel most invigorated, rewarded and purposeful when I am working with and for caregiving and promoting caring.  For the first time, I am beginning to embrace the destiny that I’m already living, optimistic and open to bravely recognizing and tackling new opportunities.

Making a statement that “Fashion Cares About Australia”- raising money for the animals in Australia with baked goods and wristbands.

Fabulous poster made by a wonderful art teacher at school!

My contribution of cookies- grandma would be thrilled!

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