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Finding Inspiration During Caregiving and Grief

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Recently, I saw a Broadway musical called, The Prom. In a nutshell, the plot is that in a small town in Indiana, a girl invites another girl to a prom, which causes a huge controversy. Some Broadway actors whose careers are floundering decide to get some positive press for themselves by becoming champions of the issue. It was a fun time with good music and a strong and positive message about acceptance, standing up for yourself, and love. Little did I know that at this show, I would discover a song called We Look To You, which so perfectly expresses how much theater means to me and how it has helped me during rough times of caregiving and grief. I am sharing the lyrics here, as well as a video with the song for you to listen to. You may not share my passion for musical theater, but I think that many of you can relate to the peace that you find in your passion, whatever the hobby or activity.

This song is sung by the principal of the school where the prom will take place, in a conversation he has with one of the actors who is visiting the school about how much theater has meant to him.

We Look To You
Music by Matthew Sklar
Lyrics by Chad Beguelin
Mr. Hawkins: Michael Potts
Dee Dee Allen: Beth Leavel

HAWKINS:
My days have little glamour

Writing memos, making calls
And wincing at the grammar
Written on the bathroom walls
It’s all school supplies and budget size
And wading through red tape
That’s why I love the theater
It’s how I escape

DEE DEE:
So, theater is a distraction? Is that what you’re saying?

MR. HAWKINS:
No, a distraction is momentary. An escape helps you heal

We look to you
To take us away
From the soul-crushing jobs
And emasculating pay
When our lives come up short
And our hopes are sad and few
You whisk us off to some place strange and new

We look to you
In good times and bad
The worlds you create
Make the real ones seem less sad
The curtain goes up
And every now and then it feels as if we’re coming home again
Yes, coming home again

We need a place to run to
When everything goes wrong
When the answer to each problem
Is to burst into a song
And standard rules of logic just simply don’t apply
When people dance in unison
And no one wonders why

DEE DEE:
You make it sound so beautiful

MR. HAWKINS:
We look to you
As strange as it seems
When reality goes to scary new extremes
So don’t ever give up
And this I guarantee
Next time you think no one cares
You can look to me

DEE DEE:
Thank you, that means a lot

MR. HAWKINS:
No, thank you

I’ve written a lot about how theater is one of my favorite things about New York City. When I was caring for my dad and Ben, I was not able to attend theater very often. I even started to lose touch with what shows were running. I was not even aware of the Hamilton-mania. That’s unusual for me. On the occasions when I was able to go to the theater or ballet- usually if Ben’s daughter was willing to visit with him-my experiences were not as magical as they had been. I felt like I was selfish for wanting the time for myself given what my dad and Ben were going through. There was guilt about going out without Ben. There was sadness because even though we did not always go to the theater together, the knowledge that I would never again go to the theater with him cast a shadow over the event. Also, there was always the worry about what was happening when I was not at home, so intermissions were spent calling and then, when he couldn’t speak on the phone, texting. I never completely escaped.

The arts- particularly theater- are where I find my peace of mind. I feel excitement when the overture of a musical begins and I am energized when I see a fantastic song and dance number. Song lyrics speak to my heart. I remember being in the hospital one day, when Ben was heading towards the end of his life, when the pianist in the atrium began playing Something Wonderful from The King and I, probably my favorite musical. I stopped and listened and cried, thinking of the lyrics and how they expressed that the King didn’t always say the right thing, but he would suddenly say something perfect and beautiful. I could picture the scene where the song is sung and I cried thinking about how life had changed since we could just sit and watch a movie without a care. I related to that song in the tension that Ben and I would feel and express on the difficult days of ALS. When I spent long days and nights at the hospital with Ben, it was a Disney song, One Dance that finally allowed me to react to all of the profound sadness and thoughts of losing Ben that I was feeling but did not even have the time to acknowledge.  You can read about that by clicking here.

Listening to We Look to You during The Prom was hearing exactly how I feel about going to the theater. Theater was and is my escape, and I had difficulty fully indulging in that escape when I was caregiving. The song reminded me of how nearly impossible, yet vitally important, it was for me to hold onto my identity when I was a caregiver. At the same time, as I watched Ben and my dad losing their lives, I seriously struggled with not wanting to be selfish when I expressed a need for time for myself. Losing myself while I was losing my loved ones and, in the case of Ben, a future that I foresaw, added to my devastation, resentment and frustration.

After I lost Ben, I had to think about how to put my life back together. Seeing my friends and planning to go to the theater were my priorities. I went through motions and kept myself distracted during the school year, but I was worried about my first summer alone, as the first anniversary of Ben’s loss approached. Would I be consumed with memories of the prior summer, reliving days in the hospital and ultimately, losing Ben? It didn’t take long to decide that I would get tickets to all of the shows that I had wanted to see but could not while I was a caregiver. I was excited about it. I full expected that theater would allow me to lose myself, and, hopefully, heal and rediscover myself. But, once in the theater, I lacked enthusiasm. It wasn’t that I didn’t enjoy many of the performances. But, it was not the same. I heard from so many people that I had my “freedom.” Indeed, my time was my own, but I was not free from grief. Being in the theater without him only reminded me of how alone I was and how much I missed Ben. I felt guilty about engaging in life. I felt like I should not and could not really enjoy myself. It felt wrong to in any way convey, even in my own mind, that it was a relief to be free of the caregiving because that felt like I was saying that I was relieved that Ben was gone. So, there I was at the theater, my favorite escape, not escaping the bad feelings and, in some ways, feeling worse.

I do reflect quite a bit on how I navigate life and grief. Now, more than three years have passed, and I have finally adjusted to going to the theater without Ben. I am always keenly aware of his absence, and yet, I know that he is with me. I don’t feel the conflict of feeling guilty for feeling good, though I do sometimes struggle with anger that he was cheated of so much life and that we were cheated of so much time together. I have re-embraced the fact that I loved the theater since I was a child, and enjoying theater is an important part of who I am.
[bctt tweet=”I am truly grateful to the many performers, on stage and screen, and the writers, musicians and lyricists- the creative souls in the performing arts- whom I have looked to and who have touched my heart in so many ways…”]

I noticed that when I left my apartment and headed to meet my friend for brunch and then the theater, that I was not dwelling on how I was handling it and reminding myself of how life has changed and I am alone. I did not have to coach myself to have a good day.  Instead, I looked forward to seeing my friend and enjoying the show, and I realized that, although changed from my experiences, I have come back to life and to myself. I frequently attend theater. I laugh and smile, and sometimes cry, with my whole heart, because I am lost in the production. It is not just a distraction that is barely holding my attention. There are certainly times that I think about how Ben would react to a performance because something particular reminds me of him. Watching the musicians has become much more significant to me because of how much Ben loved live music. There are still unexpected triggers of sadness and setbacks, but, going to the theater is a huge comfort and joy that helps me heal and feel inspired to live, laugh and love. My friends know that I have always been starstruck, but I am truly grateful to the many performers, on stage and screen, and the writers, musicians and lyricists- the creative souls in the performing arts- whom I have looked to and who have touched my heart in so many ways, in good and bad times.

Last summer, I created a webinar called, Finding Inspiration and Protecting Your Identity During Caregiving. As caregivers, we put ourselves aside for the people we love. The needs of my dad and Ben were immediate and urgent. My need to take care of myself could be addressed at some other time. But, as all caregivers know, “some other time” rarely, or easily, appears. Things like attending the theater with any kind of regularity were not possible. My webinar explored my own search for ways to take care of myself and hold onto my identity, while being Abby the daughter and the wife and the caregiver and coping with anticipatory grief, as well as feelings of guilt, selfishness and desperation, If you’re struggling with balancing care for yourself and your caree, I hope you’ll find in this webinar some strategies for finding ways to do things you love, that keep you in touch with yourself, in a manageable timeframe. Click here to access the webinar.

Please share your own struggles or strategies for holding onto your identity during caregiving in the comments below or on the Pixie Dust For Caregivers Facebook page. Let’s help each other to heal and grow.

 

 

What Olaf Knows About Caregiving and Melting

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Olaf had to come home with me!

The weather in NYC has been crazy. We were in a deep freeze one day, and then near 60 degrees two days later. Of course, Frozen came to mind. I’ve written before about what Olaf knew about love and melting (click here to read that post), but the drastic weather and reminded me of Olaf and his lessons on love and caring. The sweet and goofy snowman continues to sum up my caregiving experience at its core.

My apartment is generally as warm as a sauna. In fact, I have been sleeping with the air conditioner! During that one ridiculously cold day, even my apartment was cold. I could not help but reflect on days spent trying to help Ben to keep warm.

Before ALS, Ben and I both liked the cold. Other than Walt Disney World, Vermont was our favorite getaway, especially in winter. Once ALS progressed, the cold posed challenges and problems for Ben. It was harder for him to move when he was cold. I think it may also have affected his respiratory comfort, though his significant decline in that area began in the warmer weather.

Although it is usually very warm, the apartment is drafty and Ben could not tolerate the cold. I bought big plastic insulation tarps and put them over our windows. They did help but it looked terrible and they came loose frequently, sometimes requiring middle of the night fixes.  We did what we had to do. We became accustomed to living crisis to crisis in an apartment that was a disaster.

"Some people are worth melting for," Olaf, Frozen,ALS

“Some people are worth melting for.”- Olaf

Most blankets felt heavy on Ben as his strength diminished, and piling on sweaters made movement even more difficult than it had already become due to the ALS. We found a couple of quilts that were the size of a throw, which made it easier for him to manage. We could not sleep under the same blanket because any tugging or shifting made him uncomfortable. A blanket may seem like a very minor accommodation, but it symbolized relationship changes that took an emotional toll. Suddenly, the life we enjoyed began to  change and foretell a sad future, and the way we related to each other changed in very profound ways as we shifted from being husband and wife to patient and caregiver. As Olaf said, “Some people are worth melting for.”

I am resourceful and a born shopper, so I was always delighted to find solutions, even if they were temporary. Ben was very skeptical of the little space heater that I brought home one day. I plugged it in as he said it wouldn’t help. It did! He loved that space heater!

I made a blanket of some of our favorite photos from Walt Disney World, and a microfiber towel as well. For the days that Ben did not get to his computer, or felt chilly, he was always surrounded by the photos that he loved so much.

Photo collage blanket.

Dressing for cold weather, even within our apartment, also required creativity. Ben loved insulated puffer vests because they kept him warm without bulk and heaviness, and also  gave him some freedom of motion in his arms. He liked sweatshirts that were zippered hoodies because they were easier to put on and to remove, even though he needed assistance to do so. He did find adaptive zipper pulls that he liked. These gave him some independence and that was important for his frame of mind.

Fleece sweaters were often a great option because they were lightweight. Waffle/thermal shirts were cozy for him and allowed for easy layering. He was amused by the camouflage shirts I found for him because they reminded us of how much my dad, the Marine, loved his camouflage! Even as the temperatures dropped, Ben still wore his favorite regular tshirts underneath his warmer clothes. He loved his tshirts. They keep me warm now in the tshirt quilt that I made from them.

Caregiving,Grief,ALS,Memories

A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

It was definitely a challenge for both of us to be comfortable in the same space. Once again, Olaf got it right when he said, “Love is putting someone else’s needs before yours.” I was warm or Ben was cold, but Ben needed to be warm. Physically, the apartment was a mess, with supplies accumulating, space shrinking, and furniture moving according to his needs. At one point, my dresser had to be moved to accommodate his chair, and it blocked the closet. For several months, I either wore what was in the drawers or whatever my hand could reach in the closet. Now, I look back and laugh at the chaos that was our life. Then, we lived crisis to crisis, and despite our frequent ability to see the hilarity in the situations, it sometimes left us feeling helpless and hopeless.

"Love is putting someone else's needs before yours," Olaf,Frozen,ALS

“Love is putting someone else’s needs before yours.”- Olaf, Frozen

Now, I am trying to keep my cat, Disney, warm. With her arthritis and cancer, she is having some trouble walking around. It breaks my heart but I am trying to keep her as comfortable as possible so that she has a good quality of life. I use Ben’s hot water bottle and our heating pad and try to convince her to rest on them. I did put her in her little pajamas, which she actually seemed to like.

Going through these motions does leave me feeling a little melancholy. It feels like a long time ago that these were my caregiving responsibilities, and it also feels like just yesterday. Although I don’t mind being chilly- in fact, I prefer it, I always feel a little guilty admitting these things. I’d tolerate any kind of weather if Ben was here and well. I miss Ben. I cannot deny the inconveniences and the emotional pain we both experienced. Ultimately, Ben’s needs unquestionably came first, and a little melting was a small price to pay. My heart is warmed to know that now he is free of the constraints of ALS.

Walt Disney World,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)

 

National Hugging Day- When A Hug Says More Than Words

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

Today is National Hugging Day. Seems there is a National Day for everything. I posted this photo on Facebook in honor of the occasion. It’s 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, he 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 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 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!

Those “Oh, Bother” Moments of Grief

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Grief,Disney,Winnie the Pooh

The Many Adventures of Winnie The Pooh
Walt Disney Productions

Friday, January 18 was Winnie the Pooh Day, and it was ironic, because on Thursday, I had an “Oh, Bother” moment.

I have written a lot about grief and how incidents unexpectedly trigger setbacks. Last week, after four days of horrible dizzy spells, I decided to go to the doctor. It takes a lot for me to agree to go to the doctor. I am afraid of doctors, afraid of pain, afraid of the anticipation of anything and everything related to the visit, especially if blood tests are involved.

As I described my symptoms, the doctor said it was an inner ear issue, benign positional vertigo. He gave me some tests of my coordination. They were the same things that Ben’s doctor did when he had his ALS visits. I had not thought of those in a long time. Suddenly, I was back in those days of watching ALS take away Ben’s abilities. I found myself lamenting the ensuing setback, but I tried to intellectualize the process, recognizing the trigger and foreseeing the bad feelings. I was back in a funk. “Oh, bother!”

Since Thursday, I have not been able to shake the memories of those ALS clinic appointments. Ben liked going to the appointments because the ALS chapter sent an ambulette for him and he liked getting out of the apartment, but he began to almost resent the appointments because he felt like the team got their data but he got nothing because they really could not help him. ALS has no cure. During those appointments, I watched him do the exercises that I was asked to do. I did them with ease, but with Ben, his abilities kept diminishing. He was always disappointed, and I was heartbroken to see him look so defeated and to know that things were getting worse. Reliving those days and already literally feeling shaky, the grief took away my emotional steadiness. “Oh, bother.”

I know these feelings will subside and I know that at some point, some other trigger will set me back. Like the vertigo, there will be episodes where, in the midst of a normal day, I will feel lousy and all of my memories and emotions will spin uncontrollably and uncomfortably, but I will also find my footing. It occurs to me that grief is not curable but it has become more manageable. I realize that it is predictably unpredictable. “Oh, bother.”

Crystal Pavilion at Walt Disney World, May 2010. We took this trip right after Ben received his ALS diagnosis.

For My Mom

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We were always Mickey Mouse fans!

Today, January 13, 2019, marks 27 years since my mom, Sandra, or 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.

This is never a great day. To the people who say that I should not be so affected after 27 years, I say that we all handle things differently. Dates are important to me. I choose to take these anniversary dates to remember my loved ones. Grief after all these years is different than grief for my dad and Ben. Those losses, within the last five years, are still closer to the surface, and the sadness hovers very closely, and setbacks are unexpectedly triggered. Also, my mom was the first person I lost and we were extraordinarily close. Because she died suddenly, it was an indescribable pain to have her ripped from my life. Losing my grandma was hard because I grew up with her and I knew that her loss would begin the complete dismantling of my family. I knew too well what grief was when my dad was dying. I knew the process that I would endure. Maybe it helped slightly to be able to intellectualize it. I grappled simultaneously with the impending loss of my dad and Ben, yet each loss affected me differently, though intensely, and I have written extensively about it in this blog. Losing my dad was losing my closest family member. I was losing my childhood. I was the Daddy’s girl who lost her Daddy. At the same time, my dad was ready to leave this world, and I had accepted that despite the pain it caused. With Ben, I was losing the man with whom I wanted to grow old. I had watched ALS take away so much of Ben’s quality of life and knew that only he could decide how to live and die with that disease, and that hovered over our daily lives, so, in some ways, I dealt daily with grief even before I actually lost Ben. I was, and continue to be, devastated by the time that he was denied and that we were denied. On the anniversaries of these losses, I do think about all of this, but I don’t anticipate how I will feel, I don’t punish myself, I don’t feel obligated to act any particular way. I will say that, this year, as every year, on this day, I woke up with the vivid memory of how my dad called me and said he thought my mom had died and the ambulance was on the way. His follow-up call confirmed it.

I can’t help but lament the time that we lost and that my mom never met Ben. But, I never lose sight of how lucky I was to have my mom. She was a truly selfless, beautiful and very adorable person and mom. I love that my childhood friends have good memories of her, too. In this clip from the live action Cinderella, Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it and they must honor her. This scene touched my heart. I cherish my memories to keep my mom’s spirit alive and honor her. I get my childlike enthusiasm from her and, I believe, my natural caregiving skills, which even extend to my students. Of course, I embody her love of Mickey Mouse and all things Disney, but I hope that in some small way I have followed her example as a person. I do know that she is always with me.

Copyright © Disney’s Cinderella, 2015

In my mom’s memory, I’d like to share some details about her and some of the important ways in which she influenced me, even in my caregiving days. This is a reprint of the post I published previously on this day:

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. We went to the theater and ballet together. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events. We had so much fun. Frankly, I could not imagine living after she died. I loved her and she loved me, unconditionally.

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. 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.

As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much 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!” Another is watching and giggling through “The Little Mermaid,” especially because my grandma was straight-faced and completely baffled by our amusement.

I proudly say like mother, like daughter!

I am not ashamed to say that 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 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 he would plan something Disney-related, like our date to “Beauty and the Beast” (click here for that post).

I enjoyed the movie “Brave” and feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But the scene in this excerpt made me cry because it says it all. Even after 26 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 love you, Mommy.

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