Disney

So This is Love… The World According to Cinderella

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Cinderella, Disney, ALS, Grief, Caregiving

Walt Disney World
July, 2014

 

“Cinderella” is celebrating a birthday today. The film was released on this date in 1950. She was my favorite princess when I was a child. She remains dear to my heart because there is more to Cinderella than what meets the eye. She had feistiness and determination, and also a loyalty to her father’s memory that let her tolerate the poor treatment by her stepmother and stepsisters and maintain her dignity. Cinderella knew the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect and power!

Cinderella knew at her core that, despite treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort. Now, as I work through grief, dreams help me to redefine myself and reshape my life. No one can tell me that dreams are not valuable and important.

It’s pretty cool to make dreams come true, too. Ben wanted so much to go to Walt Disney World as often as possible. That last trip we took, in July 2014, was a dream come true for him. It was a challenge, and I wished a lot for things to go smoothly. They went fantastically! We even had a Walt Disney World Halloween in July! Now THAT’s pixie dust and Disney magic at their finest!

Ben and I with Cinderella
Walt Disney World
July 2014

Maybe you didn’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be ok.

Cinderella,Disney,ALS,Grief,Caregiving

Cinderella, 1950
Walt Disney Productions

During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.

There is a song in the film, “So This is Love.” The song is sweet and romantic, and love is beautiful. In the rough times, it is easy to lose sight of those feelings. The thing is, when we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.

At the heart of the film is the song “A Dream is a Wish Your Heart Makes.”

A dream is a wish your heart makes
When you’re fast asleep.
In dreams you will lose your heartaches.
Whatever you wish for, you keep.
Have faith in your dreams, and someday
Your rainbow will come smiling through.
No matter how your heart is grieving,
If you keep on believing,
The dreams that you wish will come true.

I’ve always been a dreamer. I believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Fairy Godmother said, “Even miracles take a little time.”

 

With love…

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The last Valentine I made for Ben, in 2015.

 

Maybe it’s a “Hallmark holiday”  and maybe it’s silly, but I’m sad today. Valentine’s Day has been a favorite holiday of mine since I was a child. I have hand-made Valentine cards for as long as I can remember. My great-aunts and great-uncles, and of course my parents, aunt and grandma, saved all of them. As they’ve passed on, their collections of the cards I made for them made their way back to me so I would know that they were kept and treasured. I see them as testaments to the love we all had for each other. But, I miss them.

My dad passed away the day before Valentine’s Day in 2014. I spent Valentine’s Day that year making his funeral arrangements and that hangs over the holiday now. His birthday is the day after Valentine’s Day. There is a melancholy that pervades these days. I remember the simple and sweet Valentine’s Days spent with Ben where we danced in the living room. Dancing was an important part of our relationship and I miss that, too.

But, Valentine’s Day is a time of love, and although I lost many people that I loved and who loved me so much, I am fortunate and grateful to have had them in my life and to still be surrounded by much love. Therefore, I continue tapping my inner child with my card-making tradition. I wish everyone a Happy Valentine’s Day filled with love and friendship, and a sprinkling of pixie dust!

Valentine's Day, Disney, Grief

One of this year’s cards. Ben loved Sully and he would have especially loved this card, although every one is different. I don’t know what I would do without crafts!

 

 

Always Let Your Conscience Be Your Guide

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Caregiving, Walt Disney World, Disney, Pinocchio

Pinocchio and Jiminy Cricket
Walt Disney World

Pinocchio was released on February 7, 1940. I do love this story of the mischievous little puppet who just wants to be a real boy. For me, so much of the film is about the song lyrics. They took on a special meaning when I was a caregiver.

When times are hard during caregiving, whether it is in the role of caregiving itself or in watching your caree struggle, it is easy to wish, as Pinocchio did:

I’ve got no strings
So I have fun
I’m not tied up to anyone
They’ve got strings
But you can see
There are no strings on me

There were times when I just wanted to stroll home instead of rushing to tend to Ben, or go to dinner with a friend, or watch tv without an interruption. For me, much stress came when Ben was feeling frustrated and took it out on me by being critical and difficult. Ben did not want to accept that he needed more care than I alone could provide. He did not want to admit that he was afraid to stay alone. I did not know how to approach him about the fact that he needed more care. I didn’t want to disappoint him and yet I was upset because his expectations were unrealistic. I was upset with myself for rarely standing up for myself. Frustration was perfectly understandable on both of our parts.

The truth was that I was attached not by actual strings, but by my heart. When I did have some time to myself, Ben was pretty much the only thing on my mind. If I went out, I constantly texted him to see if everything was ok, even when someone was with him. I knew he was most comfortable with me and I was most comfortable when I was there.

When he did finally agree to get a home health aide, we had our routines for when they would update me. I had my phone with me at all times waiting for his text telling me that he was awake and seated at his computer. Even when he was in the hospital, and I knew he had constant medical attention, I felt the need to be there. After all, he could not even move his hand to use a call button. The strings that attached us were heartstrings, and there was no breaking them.

I had a lot of support from friends, his medical care team and some family. Of course, they were concerned about Ben, but they were also concerned about me and that I was running myself ragged. I know the philosophy that if you don’t take care of yourself, you can’t take care of anyone else. But, it was impossible for me to prioritize myself knowing that Ben had ALS and it was progressing, and knowing that he could not help needing assistance. In the back of my mind, he was dying, so while he was here I had to do anything to help, advocate for and entertain him.

There are also certain realities that affected caregiving. Insurance does not cover home health aides. Since ALS is a disease that does not have a predictable progression, even when he admitted to needing help, he was afraid that he would completely deplete his savings. These are such stressful situations to deal with in the midst of dealing with the physical and emotional impact of the disease. It is tragic that better care and attention is not given to circumstances such as these and to supporting caregivers and carees. I could devote many blogs to that subject!

I had so many people tell me that I simply had to tell Ben that I could not care for him anymore, or he could not stay in the apartment anymore, or he had to begin to pay for care. People are very good at giving advice. And, in my experience, they really do mean well. Interestingly, they don’t always follow the advice they give. Some people who told me to take a hard line with Ben have been in caregiving situations where they were also towing the line without support and with unrealistic expectations from others. In grief, people have also told me what I “should do.” Again, they mean well. Some people think that blogging and pursuing opportunities to support other caregivers keeps me in the past. I disagree. I feel it is important, and even responsible, and it is also rewarding. It allows me to take my experiences that have shaped me and use them positively as I live. But, no one should really have to defend themselves. I say this here because, as caregivers, we all have to redefine our lives, and maybe my own experience will give other caregivers food for thought.  The bottom line is that we all know in our hearts what we have to do because our consciences are our guides. We can request and get advice, but only we know ourselves and our circumstances. And, until you walk in someone else’s shoes, you cannot clearly judge them. I mean this about caregivers and carees.

Jiminy Cricket was so right when he said, “Always let your conscience be your guide.” I had to do what I felt was right for Ben. I hope that I’ve come out of the experience with a stronger ability to communicate my feelings, but I still would not have changed my actions. Although I always worried that I was not a good enough caregiver, particularly when Ben was in bad spirits and critical of me, I let my conscience be my guide. I look back and am grateful that, in the end, Ben was able to stay at home with me until he went into the hospital, and I was at his side until he left this world.

As I wrote in a previous post, I still believe in making wishes, and I love the song “When You Wish Upon a Star.” I wished that Ben would find peace and I do believe that wish has come true and that he is in a place where he can walk and talk and eat and play his musical instruments. I wish for a cure for ALS. I will continue to wish until it comes true because, as the song goes

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true

All music and lyrics by Leigh Harline and Ned Washington

Think Happy Thoughts? Listening to Peter Pan

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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.

Make a Wish

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Halloween 2010
Walt Disney World

Our Disney friends do a lot of wishing and dreaming.

Cinderella told us, “No matter how your heart is grieving, if you keep on believing, the dream that you wish will come true.”

Jiminy Cricket advises us that, “When you wish upon a star, makes no difference who you are. Any dream your heart desires will come to you.” He also said, The most fantastic, magical things can happen, and it all starts with a wish.” Jiminy Cricket

Longing to be human, Ariel sings her little heart out, “Wish I could be part of that world.”

According to Snow White,
“Make a wish into the well
That’s all you have to do
And if you hear it echoing
Your wish will soon come true”

Peter Pan wished he never had to grow up.

Aladdin’s was trying to decide which three wishes Genie should grant.

And the list goes on…

Wishes are funny things. We wish on stars, on ladybugs, on birthday candles, on shooting stars. As we grow up, some of us start to believe less, or not at all, in wishes. Personally, I think some people just won’t admit that they still make wishes!  Think about how many times you hear someone begin a sentence with “I wish…” Maybe they aren’t being literal, but I think there is still that little part of all of us that wants to believe. For me, wishing is hopeful. You can call it childish naivete, but I’m fine with that. Wishes carry the faith that things will be okay. There have been times- especially when I was watching Ben and my dad struggle with their illnesses and I was also struggling as a caregiver- when I just needed to believe that my wishes and dreams could come true, despite what logic might have told me.

Walt Disney World
Halloween 2011

Ben and I never made a point of going to the Wishing Well at Cinderella’s Castle during our many visits to Walt Disney World. And then he was diagnosed with ALS. With a diagnosis like that, you’ll find yourself believing in a lot of things! Ben was diagnosed in April 2010 and in May we headed to Walt Disney World, not knowing how the disease would progress. We headed right to that Wishing Well, and we returned each time we went there after his diagnosis. I emptied a purse of coins into that Well each time, wishing that his ALS would go away, that we could turn back time, that there would be a cure. Did it change anything? Did his ALS go away? No. The disease took away his abilities one by one- physical devastation for him and an emotional toll on both of us. And, our happily ever after was cut very short.

So, how I can say that I still believe in wishes? Because my heart needs to.

Halloween 2010
Walt Disney World

When we went to Walt Disney World for the last time, in July, 2014, we went on the Pirates and Pals Fireworks cruise, where we met Captain Hook and Mr. Smee and then took a boat ride with a very funny pirate to watch the “Wishes” fireworks show from the water. Ben loved watching the fireworks at Walt Disney World, and the display really was pretty spectacular from the lagoon. When the “Wishes” song played, as we listened to the words, we both cried. For a lot of reasons.

In our hearts, we both knew it would likely be our last trip to Walt Disney World. The progression of ALS varies from patient to patient, so although we knew the eventual outcome, we did not know where the journey would lead from day to day. We just wanted to be able to wish on those stars and have our dreams come true. It’s that conflict between being realistic and being hopeful.

Excerpts from the “Wishes” Fireworks Show

Star light, star bright,
First star I see tonight.
I wish I may, I wish I might,
Have the wish, I wish tonight.

Oh, a world of wishes,
A world where dreams come true.
So make a wish, see it through.
Dare to do what dreamers do.

CHORUS:
Wishes…
Dream a dream.
Wishes…
Set it free.
Wishes?
Trust your heart.
Just believe.

We’re all just children,
Reaching for our dreams.
They’re shining high above us,
And even though it seems so far (so far)
We put our faith and hope on a shooting star.

JIMINY CRICKET
You know, any wish is possible. All it takes is a little courage to set it free! A wish is a powerful thing—especially when it comes from the heart.

BLUE FAIRY
Remember, we must always believe in our wishes, for they are the magic in the world.  Now, let’s all put our hearts together and make a wish come true.

Pirates and Pals Fireworks Cruise Party
Walt Disney World
July 2014

 

Pirates, Walt Disney World,ALS

Ben loving the Pirates & Pals Fireworks Cruise.

I think one of the hardest things in life is feeling that there is no point in having faith in wishes and dreams. As Mrs. Potts told Chip in Beauty and the Beast, “You don’t lose hope, love. If you lose hope, you lose everything.” So, I keep wishing and believing that my dreams can come true. Without that mindset, I don’t think I could have gotten through caregiving and watching Ben and my dad struggle. I don’t think I’d be able to envision working through grief. We wished for a cure for ALS as we tossed our coins into the Wishing Well, but that wish did not come true, at least not in time to help Ben. Of course, as Cinderella’s Fairy Godmother said, “Even miracles take a little time.” I will wish for that cure until it happens.

For me, as I’ve written before, the pixie dust may be in the perspective. Ben and I did have some wishes come true. For four years, Ben managed pretty well with the disease. He did not want to lose his ability to walk, but he made using the scooter and then the electric wheelchair so much fun. With Ben zipping around, we laughed our way through the Disney Parks. Although traveling to Walt Disney World became more and more complicated, he handled it with a great attitude and with determination to have a wonderful time, and he did. We always said we wished we could go there more often, and after Ben’s diagnosis, we were able to go there four more times, which was quite a treat and a splurge for us. We relived beautiful memories, created new ones and had a lot of laughs, along with some tears. And, we had a lot of love that got us through very difficult times. So, maybe there was some magic in that Wishing Well. And maybe the true magic was the gift of seeing love, laughter and light in a very dark situation.

Princess Aurora 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. I hope you do, too, and I hope your wishes and dreams come true.

Walt Disney World
July 2014

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