ALS

Happy Anniversary, Peter Pan- About Faith, Trust, Pixie Dust and Thinking Happy Thoughts

Magic Kingdom, 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!

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. 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 the 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 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 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.

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. 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 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. 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!”

Finding Inspiration During Caregiving and Grief

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 Youwhich 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.
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... Click To Tweet

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

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)

 

Those “Oh, Bother” Moments of Grief

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.

When You Need Some Bibbidi Bobbidi Boo

Brave Disney during her hospital stay in 2016

Sometimes you just need some Bibbidi Bobbidi Boo. This is one of those times for Disney and me.

Cinderella (1950)
Walt Disney Productions

In my last post I was worried about Disney as I faced 2019. My worries have escalated. I took her to the veterinarian during the week. The vet believes that she has cancer that is affecting her spine and that’s why her legs are weakening. There is nothing that can be done for her because medications would damage her already failing kidneys and cause her diabetes to go out of control. Her veterinarian, Dr. Napolitano, is wonderful, and she described Disney as an impressive girl- at 17 years old and with so much wrong with that little body, she is a fighter. But, she’s still my baby. Disney was given an injection, and I was given a prescription, to help with the inflammation that might ease her walking. Now, it’s a matter of time.

Visiting hours for Disney during one of her hospital stays.

I see a very slight improvement in her walking, and she is persistent. She climbs onto the sofa and the bed and likes to be near me. Her appetite is good and she was very excited to eat turkey, probably her very favorite treat. She’s not quite herself, but she is not as withdrawn as she had been, so maybe the medication is helping. Dr. Napolitano says these are good signs. I am spending a lot of time giving Disney attention and love, but the sadness looms.

Watching Disney, doting on her and worrying about her certainly has me pretty stressed. I find that I am not only dealing with the impending loss of my sweet Disney, but I am also reliving the terrible parts of caregiving and anticipatory grief that I experienced during Ben’s battle with ALS. On Friday, I spent the day at work preoccupied with how Disney was doing at home- if she had fallen, if she was in pain, if she was scared to be by herself if she didn’t feel well. That brought back memories of the years of being at school with my phone in hand, hoping that my phone would not ring with an alert that my dad or Ben were having a crisis. Yesterday, I did go to the theater with a friend, but I was distracted by thoughts of how Disney was doing at home. I felt the same guilt about going out that I felt when I arranged to go out while Ben was ill. Once again, there is no relaxation at home. The pain of those memories, which has dulled but has not been forgotten, has once again become vivid.

Also, I feel like I have once again stepped back to being Abby who is caring for an ill loved one. When I started working at my new high school, no one, except for a few teachers who knew me prior to this position, knew about Ben and my dad. I could shed my reputation as the caregiver or the griever. But, here I am again. I do appreciate the concern shown by my friends, I just don’t want to be “that” Abby again.

Timon from the The Lion King was right when he told Simba, “Sometimes bad things happen and there’s nothing you can do about it.”  I know the realities. Disney is seventeen years old. She’s been ill for quite some time. She was diagnosed with diabetes about a week after Ben died. Since then, it’s been one medical problem after the next. Despite this, she’s had a really good life and she’s brought me so much happiness and comfort. She is simply a very sweet cat – beautiful inside and out- without any of the negative qualities attributed to cats. She’s kind of like a needy toddler who always needs her Mommy. She was always there for cuddling when things were awful with my dad and Ben and when I looked in her big green eyes I knew she understood what was in my heart. When Ben was in the hospital for those six weeks, I was so grateful to return home to her. Importantly, she is, actually, my one remaining connection to Ben. Disney was here as Ben’s ALS progressed. She watched intently as his walking became unsteady. She went to him when he could no longer go to her. She was even in the hospital to say good bye and watch over him. And, here I am, watching over Disney in the same way, trying unsuccessfully to simultaneously ignore and accept what I know is happening.

Disney watched Ben throughout their visit in the hospice, even when he slept, as pictured here.

I have pushed through the bad days as I navigated the Inside Out of emotions in caregiving and grief (click here for prior post) and I am constantly reminded and reassured that I can step back into life. Writing these posts helps me to sort through issues as they arise. Maybe that’s why I am so shaken by the way this event has thrown me so far back into the depths of grief.

Ben made the choice of how he would live and die with ALS. I will have to make the choice for Disney. I want to be sure that she is comfortable and that I am not being selfish and keeping her here when I should let her go. Maybe I am too obsessively following her, lifting her so she does not have to climb, keeping a close eye on her and listening to every sound, talking to and cuddling her. I wish I had a fairy godmother who could bring us some Bibbidi Bobbidi Boo, but maybe Disney and I are each other’s fairy godmothers, and even though we don’t have actual magic, we are always there for each other with all the love in the world.

Disney and I in our recent holiday photo. She was very patient about my enthusiasm for the Santa hat.