Love is a Song that Never Ends

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From Bambi. (1942) Music by Frank Churchill Lyrics by Larry Morey Photo: Walt Disney Pictures

From Bambi (1942)
Photo: Walt Disney Pictures

Click to play

“Love is a Song that Never Ends”
Music by Frank Churchill
Lyrics by Larry Morey

Love is a song that never ends
Life may be swift and fleeting
Hope may die yet love’s beautiful music
Comes each day like the dawn.

Love is a song that never ends
One simple theme repeating
Like the voice of a heavenly choir
Love’s sweet music flows on.

This is a song with words that I found comforting as a caregiver and now, in grieving and sorting through memories.

There were days that were hard, and neither Ben nor I were at our best with each other. I still look back on those days and feel sad. But, it’s difficult beyond words to need a caregiver, and it’s also difficult to be a caregiver.  We were both overwhelmed by the whole situation- the ALS and what it was doing to him, his ever-increasing need for care, the confines of a small apartment, and our relationship that felt like it was shifting from one of husband and wife to one of patient and caregiver. We had so much love, but it was at times overshadowed by sadness, fear, resentment and guilt. It was an emotionally trying situation for both of us.

As Ben’s physical health diminished, it was hard for both of us to feel hopeful, or cheerful, or “normal.” ALS is unpredictable in its progression. We never knew what difficulty Ben would face. Less use of legs? hands? arms? speech? swallowing?  Every day brought the possibility of a new or worsening condition. Nothing was going to get easier, though we hoped it would take a long time for things to get worse. We did try to adjust to the difficulties with humor, too.  Ben  was very entertained by all of the concoctions I made in the Cuisinart to accommodate his taste and need for finely pureed food. I became quite the creative chef!

It was often while reminiscing about our trips to Walt Disney World- such joyful and silly times- that we would be reminded of some of the best and most carefree parts of our 16 years together. Good friends and family to email or vent to, keeping a journal, and occasional therapy also helped!

Hope and love got us through very difficult and ugly times. Now, there is the hope that he has found peace and is free of the constraints of the disease, in a place where he can walk or run, eat, talk and sing. And love’s sweet music will always flow on in the form of beautiful memories.

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Are Your Emotions All TANGLED?

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Tangled, 2010
Walt Disney Pictures, Walt Disney Animation Studios

So often I wished I could go back in time to the  pre-ALS and pre-cancer days. Of course, Ben and my dad undoubtedly felt that way, too!  As their caregiver, I had a very hard time finding a balance between time for Ben and my dad and time for myself. I don’t think that I ever did. I didn’t see my friends much, and I was very excited when I was able to go to the theater, ballet or dinner. This could only happen if someone (usually Ben’s daughter) would stay with him. Ben wanted me to do things for myself that made me happy but also hated that he was primarily homebound, which I completely understood. He did not want to have to depend on me, he wanted to be well and independent. We both struggled with guilt and resentment. There were many tangled emotions. I felt just like Rapunzel who was conflicted about wanting to be free but wanting to do what she thought was the right thing and obey her mother (the clip above). I wanted the freedom to have some semblance of a social life, yet I felt completely guilty and nervous about going out. At a restaurant, my phone was on the table in case someone had to reach me. At the theater, intermission was the time I would check my phone, call or text to be sure everyone was okay. I even slept with my phone next to me in case my dad called. At work or during errands, my phone was in my hand or pocket, just in case Ben or my dad needed me.  I enjoyed time on my own, yet I always felt lonely and worried, and I couldn’t keep my thoughts from drifting to how life would ultimately be without them.

Now, too, I have “ups” where I go to a Broadway show or the ballet, or I make plans without having to consider caregiving responsibilities. But those “ups” are followed by such lows that are the grief, and it comes with a sadness that looms over everything.  The role of caregiver comes naturally to me, and despite the stresses, I believe that caring for Ben and my dad was the best and most important thing I have ever done. It meant the world to me when I felt that I’d helped them. I’m floundering now that I do not have to fill that that role, though I will probably always question whether I did the best job I could do. I’m pushing through the lows because, after nearly a year, I know that I need to join the land of the living.  I have begun to want to do things and see my friends. I figure that the joy and stability will come in time if I “just keep swimming, just keep swimming, just keep swimming.” For now, the emotions are still tangled.

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How I Felt Like all Seven Dwarfs, Often in ONE Day!

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Snow White and the Seven Dwarfs Walt Disney Productions

Snow White and the Seven Dwarfs
Walt Disney Productions

  1. Sleepy– Ben often required assistance throughout the night. I am a NYC public school teacher, and there were days that I could barely keep my eyes open at work, and a classroom is a place where you need to be on your toes. My dad also called many times in the middle of the night if he didn’t feel well, and I would travel about 45 minutes either to his home or to meet him at the Emergency Room. Call me Sleepy!
  1. Dopey– When juggling Ben’s needs, I did not necessarily know what to do or how to help him, and, indeed, I did feel Dopey. The medical jargon was also confusing to me at times. Simple things just seemed out of reach for me because I became so overwhelmed or was just so tired. I broke things, dropped things, locked myself out of the apartment, and a bevy of other Dopey things.
  1. Doc– Ben did have medical care, and so did my dad, but when either of them didn’t feel well, sometimes it was up to me to figure out what might help. Sometimes, what we thought could be symptoms of a big problem would just go away. Sometimes I had to seek more advice or help. This is as close to a Doc as I will ever be!
  1. Happy– There is happiness. Sharing good times, making each other laugh, seeing Ben or my dad enjoy something, successfully meeting a need. Those definitely made me Happy!
  1. Bashful– Asking for help and not even knowing exactly what to ask for is embarrassing. Having to explain to professionals, or even friends, some things I would have preferred not to discuss, or even know about, was definitely cause for me to feel Bashful!
  1. Sneezy– Well, this might not apply to everyone, but I’ve got allergies, even to my cat, whose name, by the way, is Disney!
  1. Grumpy– When you’ve been through all of the above, sometimes in one day, it’s pretty easy to be Grumpy! To anyone who saw that side of me, I do apologize!

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When Life Gets You Down…

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Just Keep Swimming, Dory, Finding Nemo

©2013 Disney•Pixar

For anyone who has reached their saturation point on Dory and Nemo this summer, I apologize (though I do question it!!). But, if you’re here on this blog, chances are you agree that Dory is one insightful sweetheart of a blue tang!

One day, I was playing the soundtrack to “Finding Nemo: The Musical,” (the show at Walt Disney World) and when I heard Dory sing, ” Trust that if you just keep swimming, just keep swimming, life isn’t all that grim,” it resonated in a whole new way. At times I felt completely overwhelmed by the amount of assistance Ben required within the limitations of our very small NYC apartment.  At times it was emotional- it was devastating to see Ben struggle to do things we all take for granted- use his fingers, his hands, his legs, swallow. ALS is a cruel disease. Sometimes my own  physical challenges in helping him became overwhelming- he needed to be transferred to and from bed and chairs, among other things. There were the times I had to call 911 for help. Thankfully, Ben did not get physically hurt during those incidents, but the emotional toll was painful. I broke my shoulder in 2012, and had been in physical therapy for more than 2 years with back problems, so at times we simply had to laugh at my unskilled and klutzy efforts to demonstrate physical strength.  I just had to remember to “just keep swimming, just keep swimming, just keep swimming.”  Somehow, picturing Dory saying that was so much more motivating (and cuter!) than just trying to run a recording of  my own voice in my head.

I had to think fast, or at times not to think at all, but just dive into auto-pilot. This is not to say that I “kept swimming” in good cheer all the time. As incidents arose, sometimes through tears, I would get the job done. I had my breaking points, emotionally and physically, but I kept going. In retrospect, it kept Ben confident and comforted that I was reliable and devoted support, and it inspired me to try to stop thinking so much about worst case scenarios, because I seemed to just swim through them.

I had to go with the flow with my dad, too. He had cancer but was also elderly and living alone. He was very nervous about being ill.  We spoke on the phone many times every day. I took a train to see him at least every weekend, and would do his food shopping and take everything on the train when I visited.  I would go to his local store to pick up other things. During my free time at work, I called him to check in and remind and encourage him to eat. There were times that I would hang up the phone and just cry. But, when I could pull myself together, I would come up with a plan. It wasn’t always a great plan, and I sometimes felt like I was belly-flopping, but it kept us swimming.

In my grief, I also find that I have to just keep swimming. I have bad days and better days. I have indeed let the undertow drag me down at times. But, it has been nearly a year and I have managed to keep my head above water and not drown. (how am I doing with the swimming references?)  I have great friends and have participated in support groups where I have met lovely people with whom I am still in touch. Some of the amazing people who took care of Ben are still there for me, for which I am incredibly grateful. I now see more glimmers of good days. Dory had some great advice that has helped me to go with the flow as I adjust to and redefine my life.  I hope it helps you, too.

How are YOU doing?

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Who’s a Silly Old Bear?

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- Christopher Robin to Winnie the Pooh Copyright ©Disney Enterprises Inc. Quote: A. A. Milne

– Christopher Robin to Winnie the Pooh
Copyright ©Disney Enterprises Inc. Quote: A. A. Milne

 

How often as a caregiver do you feel a sense of helplessness and ineptitude? For me, it was pretty frequently.  That is why I started this blog.

Disney has been a way that I’ve found inspiration and strength as a caregiver and in my grief. There has also been some welcome joy and laughter when I never believed it possible.  I wanted to share this with other caregivers, and I encourage your participation in this blog as a way to express and validate our feelings, and to support each other as we find ways to move forward. I haven’t found “the” answers, and I’m not an expert seeking to impart formulas for moving forward with grace and serenity. But, I can promise that this silly old bear and his friends in the 100 Acre Woods, as well as their Disney buddies, are pretty insightful and, especially if you are a Disney fan(atic), they will always bring a smile and comfort!

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 to myself 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 cannot tell you how many times it has helped me and I have fallen asleep to the DVD, “Winnie the Pooh and the 100 Acre Woods.” It has become like a lullaby and I highly recommend it.

Can you relate to this quote? Please share your stories.  Thank you! And welcome to my blog.

I welcome your comments. If you do not see the Comment form at the bottom of this post, click on the title of the post, then scroll to the bottom of the post and it should appear. Thanks.

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