Disney

What Pocahontas Knew About Walking The Footsteps Of A Person With ALS

ALS,Caregiver,Caregiving,Disney,Pocahontas,Colors of the Wind

Lyrics from the song “Colors of the Wind” from the Disney film, Pocahontas”
Lyrics by Stephen Schwartz and Composer Alan Menken

 

These lyrics are from the song Colors of the Wind from Pocahontas. In the context of the film, the song relates to people learning to accept and open their minds to people of other cultures and races. I found myself thinking of the many people we may judge without really knowing them, their stories, and what it is like to be in their lives. I think about the way people responded to the way Ben chose to live and die with ALS. It is easy to have opinions, and it’s fine to have them. I have them, too. We were fortunate to have many people close to us who put aside their opinions to create a solid support network. But, there is a line that is crossed when opinions become harsh judgments that are made without full knowledge of a situation, and, more importantly, without an attempt to see a situation through a different lens and get a glimpse at what it is to “walk the footsteps” of another.

When Ben was first diagnosed, suggestions were offered by his ALS team, who had followed many people on the sad and excruciating journey of this disease. There were opinions from our friends and family. I had my own thoughts. But, Ben had to choose his own path. No one could really know exactly how he felt about facing the loss of his abilities and, in essence, his freedom, as he faced death. I lived with him every single day and talked to him about these things, trying to walk his footsteps, and I still could not truly envision what it was like to be him.  Still, there was a lot of “what you should do” and “what you have to do” from people who had much to say, yet did not ask Ben (or me) questions that would have given them insight into his experience and allowed them to acknowledge and comfort him, rather than simply judge and direct him.

Shortly after his diagnosis, Ben told me that he would understand if I wanted to leave him, if I could not handle what was happening to him and if I wanted to have a different life. From his perspective, he loved me and wanted the best for me, at the same time that he feared and wanted to prepare for the possibility that I might leave him. Indeed, some people told me that I should leave him.  To walk in my shoes would mean that you perceived my overwhelming fear, anger and sadness but knew that I would never leave this man whom I loved and who needed me.  And, to walk in my shoes would mean that you would realize that even when he was harsh and unkind, I would either defend it because of his illness, or believe him and think that I must not be a very good caregiver, or feel helpless because he was a dying man and I was devoted to him.

There were many times throughout Ben’s illness that I would have liked to tell people – strangers and those close to us – to try to walk in our footsteps.  At Walt Disney World, when Ben did not have visible signs of disability in the early stages of ALS, some guests treated him as if he was simply lazy by using a scooter, and were clearly annoyed when loading the scooter delayed a bus and when it took up seating space. Instead of being defensive and angry, we were anxious and unnecessarily apologetic for the delays. That said, there were many people who also offered assistance if they saw me helping him to stand or transfer from the wheelchair, and they were kind and good humored with Ben. Try walking in the footsteps of someone who does not have the freedom to easily step on and off a bus and has to awkwardly and anxiously enter and secure a wheelchair while being watched impatiently by other riders. Imagine knowing that this is only the first of the abilities that you will lose and that this may be the last time you will ever be able to travel. We never know the big picture behind what we are seeing, so it is important to suspend snap judgments.  Ironically, though there are often controversies regarding visitors to Walt Disney World who illegitimately request disability passes to get to the front of the lines, Ben never wanted special treatment or to take advantage of having a special pass for the attractions. I must also add that the Disney cast members on the grounds and transportation were always fantastic.

There were many instances in which people bypassed Ben and only addressed me. When his speech became impaired, he joked that if they heard him speak they assumed he was somehow mentally challenged, and, although it did bother us, I was glad that he had a good sense of humor.  However, I was quick to involve Ben in conversations, because I wanted people to know that he was fully capable of communicating and understanding, even if he needed my help. Then, some people realized that they could engage with Ben. Think about how it must feel to be ignored when you are vibrant, able and wanting to be a part of a world that is becoming increasingly distant. Just acknowledging someone’s presence with just a smile can lift a person’s spirits. It certainly lifted mine to see him respected and happy. Compassion goes a long way.

Seeing things through another’s perspective is not always easy, especially when you are dealing with someone who has a terminal illness, like ALS. Among my biggest frustrations was that some of the people with the strongest opinions, arguments and accusations were also the people who were not actively or consistently involved in Ben’s care. They promised to visit and did not. They did not try to gain a clear picture of his medical and emotional situation and dilemmas or ask how they could help, but they were vocal with their criticism, even if completely unfounded. Instead of walking in his footsteps, they stepped on his feet and tripped me up with the unnecessary drama they created. It is imperative to be honest with yourself about the role you have had in someone’s care and life, and to recognize when to put aside your own needs and agendas, in order to watch and listen, and to “learn things you never knew you never knew.” With that insight and knowledge, you are more able to play a meaningful part in someone else’s journey.

In Ben’s fifth year with the disease, he made the choice to proceed with plans to get a feeding tube but those plans were interrupted by an urgent respiratory crisis that landed us in the emergency room. Then, admitted to the hospital with a biPAP mask and being fed intravenously, he had to decide for sure if he wanted a feeding tube and a tracheostomy. It took him more than two weeks to make that decision. I held his hand, I tried to answer his questions and to get a sense of what he was feeling, but I could not tell him what to do. I was worried about what his quality of life would be in a skilled nursing facility, which was where he would have to go with a tracheostomy. However, talking to him helped me to understand that Ben was focused on living and the things that he would be able to do. I could not begin to imagine all he was experiencing, but talking to him helped me to see his viewpoint and gain insight into his thoughts. I embraced his beliefs and supported him.

Ben did decide to get the feeding tube and tracheostomy, but things did not go smoothly in the hospital. He quickly developed an infection and then pneumonia. He was miserable. After a few weeks, he made the decision to go to the hospice unit of the hospital and to be removed from the ventilator, which was his life support.

Life and death decisions can be debated based on a range of convictions, from emotional to clinical to religious. Ben navigated his journey with ALS in a way that was right for him. I respected that and I admired his bravery. I had to see his situation through his eyes, and although I did agree with him, I understood that agreement with him was not the issue. I was there for him. Whether you are a caregiver, friend, family member or even a patient, it is so important to try to walk someone else’s footsteps. Maybe I did not handle being a caregiver the way some people thought I should and maybe I did. Maybe Ben did not navigate his life with ALS the way some people thought he should, and maybe he did. Keeping an open mind, even if we do not agree, helps us to “paint with all the colors of the wind” and support each other with a more positive, meaningful, loving and helpful connection.

Oh Bother!

Grief,Disney,Winnie the Pooh

The Many Adventures of Winnie The Pooh
Walt Disney Productions

 

For the first time since I started blogging, back in July 2016, last week I was having a hard time writing. I was feeling down, and writing was not helping me the way it usually does. I could not figure out why, and it bothered me.

I write a lot about reshaping my life, which has been an ongoing process. Even though he is gone, Ben has been included in my decisions in redecorating my apartment, traveling, spending my time. I often see things through his eyes and our eyes. Writing about these things, incorporating the Disney things that inspire and console me, is an important part of my healing. So, why was I suddenly having a hard time?

Finding out that the school where I teach is closing got me thinking- more- about how I want my future to look. I have been working hard to reshape my present and I’ve been feeling good about the steps I have taken to deal with grief, honor Ben and even support other caregivers and people with ALS. I even just wrote a post about how I’ve been finding myself. I do have more and more good days in the present, but I flounder when I think about the future. Last week, when I felt overwhelmed with grief again, I panicked and got angry at myself for stepping back into the pain, but it was actually looking ahead that was pushing me forward into anxiety. I realized that I am not only redefining my life in the short term, but also in the long term, and that includes redefining my relationship with Ben. But, I listen to Dory and “just keep swimming.”

Going to “Beauty and the Beast” without Ben compounded my sad acknowledgment that there are “us” things that I will do without him. It has been a year and a half since Ben left this world. I have put some routines in place, but he is very present in my existence. Somehow, when I went to see “Beauty and the Beast” I strongly felt his absence. Missing him is one thing, but living with his absence is another. That he is absent might seem like stating the obvious, and, of course, it is, but up until this point, my thoughts have so revolved around him that on some levels I have felt like I was still in our relationship. Maybe I need to fool myself, maybe it is just part of grieving, but it has kept him with me.

Once I started to piece together what was getting me down, I felt motivated to write this post. I do give myself the time to feel, and once I begin to sort out the “why” of the feelings, I do begin to feel better. At least, I understand my emotions, which allows me to be more patient with myself. In grief, as time moves on, we question our feelings, our thoughts and our “progress” as we step back into the land of the living. At a certain point, we might ask ourselves if we should be “over” the setbacks. And, if we don’t question it ourselves, we often have people around us who will point it out (click here for a way to deal with them)! I am finding that there are and will be steps forward and steps back, there will be adjustments, and there will be what feel like slaps of reality. They hurt. Sometimes, to work through the bad patches, I need the support of friends and family whom I trust to be honest but compassionate. Sometimes, I just need time to be in the moments. But, I do believe that it’s all okay. Or, it will be.

I always welcome your comments and experiences in the reply section below.

How Does a Moment Last Forever?

Walt Disney Pictures 2017

I was excited to see the live action Beauty and the Beast on its opening weekend. Beauty and the Beast was a special film for Ben and me, so I knew it would be emotional to see it without him. I tried to see it through our eyes, as if he was sitting next to me. Sometimes that made it easier, sometimes it made it harder. When I love an animated film, as I do Beauty and the Beast, I worry that the live action will disappoint. It did not. Beauty and the Beast was absolutely spectacular, with excellent casting. I was captivated. And, at the end, I could feel Ben smiling. I, of course, was a puddle of tears!

In the beginning of the film, Belle’s father, Maurice, sings a lovely little song with these lyrics:

How does a moment last forever?
How can a story never die?
It is love we must hold onto
Never easy, but we try
Sometimes our happiness is captured
Somehow, a time and place stand still
Love lives on inside our hearts and always will

Here is the music clip:

 

Caregiving,Grief,Disney,Beauty and the Beast

Beauty and the Beast (2017)
Walt Disney Pictures
Pictured: Kevin Kline (Maurice) and Emma Watson (Belle)

These lyrics touched my heart, so simple and yet so profound. I know that Ben would have handed me tissues knowing the tears would flow. But this is the magic of Disney. At the heart of the whimsy and fantasy lie our deepest emotions.

I believe that these lyrics beautifully capture the thoughts of caregivers and those grieving the loss of a loved one. In caregiving, I grieved the loss of the life we had. I grieved what ALS took away from Ben and from us. I grieved the relationship we had as it shifted to that of caregiver and patient. We clung to memories and those brought a mix of pain and joy. And, we both lived with the knowledge that Ben was going to “leave,” as he referred to dying.

In grief, I have relied on the memories and the love that we felt. The heartache is there, but as the song says, “it is love we must hold onto.” I write so often of the importance of the memories that keep Ben in my heart. Love and our stories will always keep him there, along with my parents and other loved ones.

Early in our relationship, Ben gave me this frame with his own picture inside.

I immediately got the soundtrack to the film, which I also heartily recommend. And, although it makes me cry, I keep listening to this song and the longer version, performed by Celine Dion. Just like “One Dance,” this song struck a chord (pun intended) within me!  Sometimes I am caught off-guard by overwhelming emotion and at other times I just need to immerse myself in the grief and have a good cry.

Music and lyrics were so important to Ben. I believe that he would appreciate how the lyrics of this song spoke to and moved me, and how they confirm that he will always live on in the song that was our love and life.

As for the comparison to the original, animated version of the film, I love them both. When I came home after seeing the new version, I immediately watched the Blu-Ray of the animated version. It remains dear to my heart. I don’t think they detract from each other in any way. In my opinion, they are both wonderful. I will enjoy watching them both on Blu-Ray!

I told Beast that he was much more handsome in person!

On Losing and Finding Myself in Caregiving

ALS, Caregiving, Caregiver, Disney, Dumbo

To say that caregiving was difficult is no grand revelation. In fact, it’s a grand understatement. I’ve written about it and will continue to do so, to share what the experience is like and to sort through my feelings, with the hope that it will comfort, inform, validate or inspire others. Since ALS is a rare disease, I feel especially compelled to share with people what is involved in this disease, sometimes from my perspective, and when I can, from what I observed about Ben’s perspective.  My most profound revelation has been that as much as I lost myself while caregiving, I was also the most myself.

In bereavement support groups, I found that some participants could not get far enough away from caregiving. They were concerned about pursuing new relationships for fear of having to be caregivers again. I understand that, but contrary to my support group friends, I actually missed caregiving. Although, obviously, I would never wish for someone I would become involved with to suffer, I don’t think I would run away from being a caregiver again. Despite the ugliness of disease and the sadness and frustrations, there was something uniquely beautiful in caring for my dad and Ben during their journeys from this world. Although immersed in day-to-day difficulties and unexpected crises, I thrived when I was focused on ways to give them joy, to make them comfortable, to see them smile.

After caregiving, I felt like I had no purpose. People said it was time to take care of myself. That might have been a good idea, but I didn’t especially like it. I prefer taking care of others. I did catch up on doctor appointments.  I also resumed favorite activities like going to the theater and seeing friends. But, I was lonely and lost. Everything was a reminder of my dad and Ben. I came home and had time to do things, but I had no focus and just floundered. Part of it was grief. I have lost many people close to me, so grief is not a new feeling for me. I have learned to co-exist with it and to integrate those feelings into my life. Despite the emotional roller coaster, I love the good memories and I do not underestimate how fortunate I am to have them.

As I began to redefine myself and the world around me, I seemed to cling to my role as a caregiver. True, it was a constant struggle that could be disheartening and maddening, and, in the end, I could not save Ben or my dad. But, it was also deeply loving, giving and nurturing, in a most special and compassionate way. Successfully caring for them gave me an incomparable sense of pride and purpose. Time to think and reflect on the caregiving journey enabled me to embrace that, as confusing as it was.

Walt Disney said, “We keep moving forward, opening new doors and doing new things because we’re curious, and curiosity keeps leading us down new paths.” I think that’s true. Some people have said that I remain too connected to Ben to be able to move forward. Some say that I am staying in the past by constantly revisiting caregiving and grief. I don’t believe that. Ben and my dad, and really, all of my loved ones, will always be with me in my heart. But, I have learned a lot about myself through my experiences and now, curiosity and determination are propelling me to use what I’ve learned in positive, compassionate and creative ways as I follow new paths in my own journey. Here are some of the doors I have opened:

ALS,Caregiver,Caregiving,Disney,Dumbo

Blogging
Blogging on Pixie Dust For Caregivers was the way that I started to reconcile my feelings about caregiving and grief. Actually, I had long been collecting Disney quotes for my own inspiration and consolation after Ben’s diagnosis. As it turns out, my experiences, combined with Disney things that inspired me, also inform, comfort and motivate others. It is a huge gift to know that. It’s a different kind of caring, but it’s caring nonetheless.

Social Media
On Facebook, there is a group of lovely people who either have ALS or are caregivers of people with ALS. I wish that I had thought to look for this kind of support when Ben was here. I want to be a resource or compassionate shoulder for people if it’s helpful. Likewise, it is healing for to me to hear about the experiences of other people dealing with ALS, as patients or as current or former caregivers, because even a year and a half later, I am still trying to make sense of so much about my experience with Ben. The dialogues in this group are fascinating, thought-provoking, and heartbreaking, but also heartwarming. Twitter (@PixieD4Caring) has also presented a wealth of information and opportunity to interact with other caregivers. I do plan to expand the resources section of PixieDustForCaregivers.com.

Education and Professional Development
Caregiving.com offers a certificate program in caregiving consulting. Though I currently focus on my blog and informal interactions, I enrolled in the program and I love the coursework, chat group discussions and strategies for providing various types of assistance and emotional support. I find that it informs my writing and direction. Other students in the program are embarking on wonderful projects as well. Through the certificate program, I was invited to be a presenter in a virtual performance on the stages of caregiving. Click here to watch this engaging and interesting video. I also encourage you to visit the web site to learn about the certificate program, and to discover the vast number resources available there.

Volunteerism
I am grateful to have kept in touch with some of the people who helped Ben. In talking with the social worker from my local ALS Association, I learned that their office conducts some events for children who have a parent with ALS. As hard as it is to comprehend ALS as an adult, I cannot even fathom how a child processes watching a parent succumb to the disease. I was eager to participate in bringing some joy and fun to these children. I volunteered to work with the ALS team to create craft activities for a kids day event for young children.  It was a perfect fit for me, because my background is in arts education administration, which has always been my personal and professional passion. In fact, I met Ben when we worked at The Little Orchestra Society, where I was the Director of Education and planned many workshops for kids and families. Ben was responsible for finance and technology, but he was great with children and he liked to help me out.

The kids event was last weekend. It was a small group of children, which was nice and intimate, and the children decorated memory boxes and beaded friendship bracelets. They also drew and painted and explored the craft supplies at their whim. They ate pizza and ice cream and sang along to some Disney music. There was no talk of ALS among the kids, except for one child who asked me if everyone there had a daddy in a wheelchair. It was an afternoon of undivided attention and a fun time in the midst of a difficult period in their lives that they might not even be able to fully articulate.

Even the moms participated. They talked amongst themselves a bit about their husbands and situations, and it is a great opportunity to talk to someone also immersed in caring for someone with ALS, even if the progression varies, as it often does. I realized, from the looks on their faces that when I told them that Ben had passed away, that I was also giving them a dose of reality and the future that they may not have wanted to see. On the other hand, although it took time to reach this place, and I’m changed in some ways, I’m here, I’m smiling, I’m still full of love and I want to help.

During the workshop, I made myself a bracelet, including words that a couple of the girls chose for me. I added “believe” and “ALS.” “Special secret” is just that, so I won’t tell! “Peace” may have been a somewhat random selection from an emergent reader, but it’s meaningful to me because I wished for it for myself and for Ben. “Believe” is a powerful word for me because it encompasses magic and faith and hope that wishes will come true. I left the event feeling so positive, but also emotional from the combination of excitement of a successful event but the heartbreak of what the families are experiencing, and my own memories. I volunteered to work on more of these events for children and I hope to see these children again.

I would not have predicted that caregiving, which presented much inner conflict for me at times, would be the part of me that most resonates now in terms of who I am and who I want to be. Then again, as Timothy Mouse said to Dumbo, “The very things that hold you down are going to lift you up.”

It turns out that, for me, sprinkling pixie dust on others- giving support, compassion, joy and comfort- is very healing pixie dust for me!

ALS,Caregiver,Caregiving,Disney,Dumbo

“Heigh-Ho, Heigh-Ho” A Caregiver’s March?

“Heigh-Ho” from Snow White and the Seven Dwarfs (1937), Walt Disney Productions

I was surprised to learn that the lyrics to this most popular Disney song from Snow White and the Seven Dwarfs are “It’s home from work we go,” rather than “off to work.”  Apparently, this is a very common error!  There is a point when the dwarfs do sing those lyrics, but not during this iconic scene.

I thought about “Heigh-Ho” and the seven dwarfs when I learned this week that as of the 2018 school year, my public middle school will be closed.  Amidst the challenges currently facing public schools, and having been through a school phase-out before, I am trying not to get too frazzled. I’m not exactly singing my way to and from school either.

The news about my school had me reflecting on my time spent there. Ben was diagnosed with ALS just before I entered this school. At the same time, my dad was fighting cancer. I was the caregiver for both. They were going through their journeys and I was going through one of my own, as a caregiver and as a daughter and a wife who was watching the decline of the people I loved while maintaining a full-time teaching job.

As a caregiver, leaving home and heading to work every day was not easy. Instead of “Heigh-Ho,” there was a cacophonous chorus of guilt, worry, anxiety and frustration. Managing caregiving and career is a delicate and stressful juggling act.

Emergencies requiring that I had to leave school began shortly after Ben’s ALS diagnosis. I have been very fortunate to have a principal that is understanding and supportive. My principal either covered my classes or arranged for coverages. He also allowed me to take days off to go to Walt Disney World with Ben for Halloween, something I promised Ben that I would do for as long as he was able to travel. There were many days that I missed school to accompany my dad to the Emergency Room, and there was a period of Family Medical Leave as well. There were days that I had to miss school because Ben had a difficult night or morning. In the middle of the night I might have had to rush to get Ben onto a commode or help him get comfortable because breathing was difficult. A good night’s sleep was a luxury. At times, I broke down in tears because I was overwhelmed and exhausted. I know Ben felt horrible and that made me feel horrible and guilty, because it certainly was not his fault.  While my dad and Ben were unquestionably my priority, I did worry about jeopardizing my job. Thinking about my future alone, and when Ben’s was so grim, made for a lot of sadness and guilt.

When Ben was able to walk independently, he would text me at school when he was awake and at his desk. If he stayed in bed late, because he felt safer there, I might not hear from him until around 2PM. One day, I had not heard from him by the end of the school day and he didn’t respond to my texts. I left school in a complete panic. I arrived home to find him completely fine and unharmed, but lying on the floor, where he had slid from the bed when he tried to stand up. He’d been there for almost five hours.  He was good humored about it, and was kept good company by our cat, Disney. After that, he sometimes preferred to stay in bed most of the day and stay awake most of the night, knowing that he could call me if there was a problem. He also wore a cell-phone around his neck because, early on, he refused to get a medic alert button.  I ran home when called me if he fell and could not stand up, or he could not get off the toilet. It is not easy to lift someone who cannot help you at all. Once, after a few hours of my not being able to get Ben off the ground, my principal even offered to come uptown to my apartment to help me lift him.

When Ben’s ALS had progressed to the point where he was afraid to walk by himself, I woke up earlier than usual and got him dressed and either walked him to his desk or transferred him to his chair and wheeled him to his desk and positioned his computer mouse under his hand. I made him coffee and oatmeal until he could no longer hold the cup by himself. Lastly, I positioned his medic alert button near him so he could access it if he needed to.  I kissed him good bye, took a deep breath and hoped for the best as I closed the door behind me.

In 2014, Ben finally agreed to get a home health aide for a few hours a day during the week, but she did not arrive until about an hour and half after I left for school, and she left about an hour before I got home. In the morning, I got him into his chair, strapped his medic alert button to his hand and left him to watch television in the bedroom until she arrived.  After she arrived and got him situated at his desk, he sent me a text that everything was okay. There were times when she contacted me that subways were not cooperative or she was running late, and I alerted Ben by calling our home phone and leaving a message that I hoped he would be able to hear, although he could not respond.

My days at school revolved around texts and phone calls to my dad and Ben to make sure they were alright, and also to their medical professionals for follow-up.  Though I did walk around with my cell phone, in case I was needed, teaching was a good distraction. When you’re teaching you have to be “on” for your students. I was dedicated to my students and to my family. The students knew that my dad was ill and they knew when he died, and I taught by example life lessons on compassion and responsibility. Until quite recently, I never shared anything about Ben because I could not emotionally handle a lot of questions or reactions.

After a day of school, there was no cheerful marching to “Heigh-Ho, Heigh-Ho, it’s home from work we go.” OK, so Grumpy was never cheerful. I was not exactly Grumpy, but I would have been the eighth dwarf, Anxious.

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Ben (pre-ALS) and Grumpy, Walt Disney World, 2001

I texted Ben when I left school to see if he was okay and if he needed me to run any errands. There was rarely dawdling, strolling or window shopping. On the occasion that Ben was feeling secure, if I had the energy, I ran to the nearby Sephora to try nail polishes. It was my whimsical escape. It’s important to have those.

There were times that I would receive a text from Ben on my way home that he spilled something or he needed to use the commode, but I could get home only as fast as a subway train would allow. This is just one demoralizing aspect of ALS, and other diseases, of course, and the only way to get through is with understanding and love. Humor helps a lot, too.

There was an instance after school, when I was visiting my aunt who has Alzheimer’s Disease, and I got a call from the medic alert company that the alarm had been activated. They said that they spoke to Ben from the intercom and it seemed he pressed the button by accident, but they wanted to notify me. I tried calling and texting Ben, but he did not answer. I grabbed a taxi and ran home in a frenzy to find him calmly sitting at his desk, wondering why I got so upset, since he had spoken to the medic alert company. Ben’s dexterity was compromised and the mouse got away from him, so he could not reply to my text messages. I simply hugged him, not knowing if I should laugh or cry. I did both.

As soon as I opened the door to my apartment, my hands-on caregiver responsibilities commenced, even though the reality was that I was also caregiving from school. After a day of teaching, interspersed with texts and phone calls, I needed some down time and it was not going to happen. Ben preferred me to be his caregiver, so, rather than ask his home health aide to do some tasks, he often waited for me to come home.  It was sweet, but it was difficult. He wanted me to stop working, but that was not possible. I was exhausted and probably depressed, and sometimes became aloof, doing what needed to be done but keeping to myself. To this day, I feel bad about that, but I’ve also begun to come to terms with the fact that our situation was happening to both of us in different ways and that although Ben’s needs were my immediate priority, my feelings also mattered.

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Not sure who the real Dopey is!

In the evenings, I prepared Ben’s dinner, which was always a culinary adventure with the Vitamix. As his ALS progressed, chewing and swallowing became increasingly difficult, but Ben wanted to postpone getting a feeding tube. His foods had to be pureed and almost bisque-like in consistency. I experimented with all sorts of sauces, and incorporating mashed potatoes that he loved, and we made it as fun as it could be. I admired how hard he pushed himself, but when he could no longer hold utensils or a soup cup, I fed him.  He began to lose energy for and interest in eating, so he was losing too much weight. I made and fed him a daily ice cream shake and a nutritional supplement drink for extra calories. For the rest of the evening, we watched television and used our computers. I helped him wash up and dress for bed, transferred him to the bed and got him comfortable. With a bad back of my own, by the end of the day, I was exhausted, sometimes in physical pain, and not always in the best mood because of it. On days when Ben was feeling down, uncomfortable, or scared, he was critical and harsh. At these times, it was hard to feel loving and we just followed our routines. Sometimes we cried, out of sadness, anger or frustration. The bad feelings happen, and it has taken me a long while to accept that we are all human and just like in Inside Out, you can’t just push sadness into a corner. But love was there, and it kept us going.

On weekends, I was the sole caregiver, and leaving school on Fridays came with a mix of excitement and dread of what might happen. There was no TGIF.  Before my dad passed away, my weekends were split between traveling to see him and taking care of Ben. Fortunately, at that point, Ben was more comfortable being alone for several hours. When it was just the two of us, Ben was happy that I would be home all weekend, and that touched my heart, and I did treasure our time together, but at the same time, I wanted and needed to have some time for rest and relaxation after a 24-hour work week. Ben was torn, too, because he did want me to do things that I enjoyed, like going to the theater, but he resented not being able to go out, and there were times that he said, “If I don’t have a life, why should you?” To be honest, it still upsets me when I think about it, but I truly do understand it. It is hard to BE a caregiver, but it is hard to NEED a caregiver. In this situation, no one is really at their best. We were not great at talking about it, but communication really is essential.

After nearly a year of having a home health aide, Ben had decided, without discussing it with me, to let her go at the end of my school year, telling me that I should and would be his caregiver over the summer. This was something that had me quite concerned because of the physical and emotional demands, and logistics of doing things like grocery shopping and other errands. Frankly, I also resented that he felt entitled to it and took it for granted rather than talking to me about it, and he resented that I felt that way. In reality, he knew me and I knew myself well enough to know that I would have accepted the responsibility. Again, better communication skills might have helped us to better address this issue.

I began to describe my state of mind as “an inch away from a nervous breakdown.” Although well-intended and heartfelt, it was not helpful to be told to take care of myself. Sometimes that’s just not possible. Ben was dying. His needs were immediate and they were not negotiable. Telling me what Ben or I “should” or “should not” do became frustrating.  However, all of this did teach me an important lesson: you cannot presume to know what is going on in someone else’s life or head, or within their own family dynamics, so it’s kind to ask how you can offer support and to be a shoulder to lean on, but you must tread carefully when offering advice, especially if it is unsolicited.

Timing was the sole good thing about when Ben ended up in the hospital with a respiratory crisis just a few days after the school year ended. If you’re thinking “Heigh-Ho-Heigh-Ho, it’s off to/home from the hospital we go,” that was not happening either. But, I was free to spend every day and many nights at his side in the hospital, still overseeing his care, and being the person he relied on for love, support and advocacy. With a BiPAP mask and then a tracheostomy, communication became more complicated, but since I was with him so much, I often had an easier time figuring out what he was saying. I kept my role as a caregiver even though he was surrounded by medical staff. It was an emotional summer. Neither of us was prepared or expecting to say good bye at this point because his progression had been fairly slow. He chose his path and I supported him.

In grief, people told me it would be helpful to return to my routine at school. What they did not realize was that caregiving WAS my routine. I was not returning to my routine at all. There were still no cheerful choruses of “Heigh-Ho.” Work was a painful reminder of losing loved ones and myself.  But, I have in recent months begun to redefine myself, and caregiving is something that has become a part of me, whether through work with caregivers or volunteering with my local ALS chapter.

If you remember, the seven dwarfs worked in the mines. On our first visit to Walt Disney World after his ALS diagnosis, when we approached Mickey for our photos, it was clear that everything was not okay with us. On our way out, one of the cast members quietly handed me “a ruby from the mines” and said that he hoped it brought us good luck. I still have that ruby. It has served as a reminder to dig for the rubies- the positive aspects or loving care in caregiving- even when it is hard work.

Some of our rubies: There were days when we sent each other funny and silly texts, even when his dexterity became too compromised to use his phone. He found an app, Mighty Text, that allowed him to send texts from his phone through computer, and he used a virtual keyboard.  There was also that absolutely incredible and romantic time that he surprised me by spending the day getting dressed and ready to take me to see “Beauty and the Beast-3D.” There were the mornings that he woke up to discover that I had decorated his desk or the apartment for a holiday. He looked forward to those surprises. Watching Ben struggle with ALS with such bravery and persistence, and a zest for life, showed me new sides of him to admire, love and nurture.

I’ve said before that being a caregiver was the most challenging, frustrating, and sad experience, and yet it was also the most loving, important and rewarding experience of my life. It is a heartbreaking but precious gift to bring comfort to someone you love, particularly when that person is facing death. I will always treasure the profound closeness we shared throughout that time, and, despite the challenges, I know in my heart, without a doubt, that I would be their caregiver all over again. That’s the biggest, most invaluable ruby of all!