Caregiver

Think Happy Thoughts? Listening to Peter Pan

 

ALS,Caregiving,Grief,Walt Disney World

Ben and I with Peter Pan and Wendy
Walt Disney World 2006
Pre-ALS days

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!

The phrase “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.

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 that 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 this, 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 now, as I work through grief. 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.

After a respiratory crisis, Ben landed in the hospital, and life with a tracheostomy and feeding tube was not going well, including infections and pneumonia. After six weeks, Ben chose to go to the hospital’s palliative care unit.

It was painful beyond words to know that Ben was miserable. Tragically, ALS was not going away. He was not going to get better. But, to know that he had only days left in this world was devastating. At the same time, there was a certain relief that he would be free from the physical and emotional pain and constraints of the disease that rendered him unable to breathe on his own, speak, eat, walk, use the computer or play his instruments- things he loved. 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 wanted Ben to have peace and to feel comfort he had not felt in the nearly six years he bravely battled ALS.

Peter Pan said, “To die would be an awfully big adventure.” I don’t know that I would call ALS an adventure, but it was a journey. A very difficult journey that Ben 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.

Remembering My Mom

My mom and I were always Mickey Mouse fans!

Today, January 13, 2017, marks 25 years since my mom, Sandra-“Sandy”- left this earth. There is not a day that I don’t think of her. I talk about her often, and so much so that some people do not realize she’s gone, or for how long she’s been gone. I don’t know if that is good, or “healthy,” but she is so much a part of me. I still, and always will, wonder if she would be proud of me.

My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie.  There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.

My mom and I were very close, or , as everyone said, attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her when we were out shopping. People laughed that we spoke on the phone many times every single day, but I think we were fortunate to have had such a close relationship. We went to the theater and ballet together and spent a lot of time together and even with my friends. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events to see all we could and find the best sales. She was simply an adorable person. Being in London with her was also a hilarious occasion- I still remember laughing at how I would have to translate English to English because the British accent baffled her. Everything delighted her there, as it still delights me. We had so much fun. I loved my mom and she loved me, unconditionally. Frankly, I could not imagine living after she died.

When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as my grandma, who lived with us, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times.  She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

I realize that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after my grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with my grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles.  I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. For a change of pace, I often brought home treats from Zabars or other NYC places. My grandma did not want to be cheered, and I understood that, though it was frustrating to me that she pushed people away. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. As in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.

London 1987. My mom could not wait to visit the Paddington store!

As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much of who I am and what I do reminds me of her. I get my Peter Pan-like inner child spirit from her. You won’t be surprised that Disney played an important part in our relationship, too. One of my favorite memories is when she called me from Walt Disney World exclaiming, “Abby, I met Mickey!” (picture below, left) Another is watching and giggling through “The Little Mermaid,” especially because my grandma was straight-faced and completely bemused by our amusement.

I proudly say like mother, like daughter!

I still miss my mom terribly. It remains a wound that is easy to open. When watching movies, I often cry at the mere mention of mother daughter love or the passing of a mother, and Ben intuitively handed me tissues in these instances before he even saw my tears. Of course, that made me laugh through my tears, and that was a good thing. Ben never knew my mom, but he knew how important she was to me and it touched my heart that he always marked in his calendar her birthday and this anniversary and on those days he would plan something Disney-related, like our date to “Beauty and the Beast-3D” (click here for that post).

I enjoyed the movie “Brave” and the feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But, the scene in the clip at the bottom of this post says it all. Even after 25 years, I just want her back.

I have struggled, I have adjusted, and I have had to accept her death. Now, I take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I miss and I love you, Mommy.

Disney Pixar 2012

 

On Blogging and Pixie Dust- Looking Back and Looking Ahead

“Pooh’s Grand Adventure: The Search for Christopher Robin” (1977)
Walt Disney Television Animation

It has been six months since I began this blog, and since it is the beginning of a new year, it seemed like a good opportunity to reflect on my experience blogging thus far and what I would like to see in 2017.

I began my blog with the quote from Winnie the Pooh that you also see in this very moving clip.
“You are braver than you believe
Stronger than you seem
and Smarter than you think.”

Pretty insightful stuff from a kind little boy to that “willy nilly silly old bear!”

Disney has brought me happiness, entertainment, and even life lessons since I was a child, and it was a tremendous bond between my mom and me and then between Ben and me. Disney became an important source of inspiration and strength when I was a caregiver and in my grief. It has brought welcome joy and laughter when I did not believe it possible.  I started this blog because I was working through grief, but also trying to make sense of my experiences in caregiving, and Disney played a pivotal role in this process.  I wanted to share this with other caregivers and people in grief, to forge a dialogue to validate our feelings and support each other as we rediscover ourselves and reshape our lives. That remains a goal for 2017.

If you’ve been following Pixie Dust For Caregivers, you know that in my own experience, my husband, Ben, had ALS/Lou Gehrig’s disease, and at the same time my father, Jacob, had cancer. During the crises, or the exhaustion- physical and/or emotional- I definitely did not feel brave, strong or smart. I often I felt like I was running in circles and going through motions to get through each event. But, saying that quote from Christopher Robin gave me something to hold on to. It became a kind of mantra for me and it never failed to make me smile. Say it. And say it again.

I do find that writing has helped me sort through a lot about caregiving, grief and my emotions. If you like to write, I recommend it as a way to gain some insight into yourself and your experiences. Blogging has been a very powerful way to connect with others, too.

Following is some of the pixie dust that my Disney friends have sprinkled on me, with links to the corresponding posts:

Coming to understandings about caregiving and grief, and finding peace with my experiences, happens slowly and sometimes subtly. It is an unnerving and emotional process with dramatic, sudden, and surprising ups and downs. I have more moments of joy now, and those moments are still sprinkled with some guilt and discomfort. However, I am learning and striving to find ways carry Ben and my dad in my heart as I continue to live. As Christopher Robin tells Pooh in this clip, even though my loved ones and I are not together, they are always with me.

I have communicated with many interesting people at various stages of caregiving and grief. We have found comfort and insight from experiences we’ve shared. I continue to learn and I thank readers who have shared their thoughts. I hope that 2017 brings new revelations and understandings as I continue to seek new ways to honor the memory of my loved ones and to bring new joy, peace, laughter and love into my life.

What do you wish for yourself? Please let me know in the comment section below. If you don’t see the box, click on the title of this post. Thank you!