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

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“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.

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.

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!