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:
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!
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:
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.
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.
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!
“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 inInside 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!
“Cinderella” is celebrating a birthday today. The film was released on this date in 1950. She was my favorite princess when I was a child. She remains dear to my heart because there is more to Cinderella than what meets the eye. She had feistiness and determination, and also a loyalty to her father’s memory that let her tolerate the poor treatment by her stepmother and stepsisters and maintain her dignity. Cinderella knew the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect and power!
Cinderella knew at her core that, despite treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort. Now, as I work through grief, dreams help me to redefine myself and reshape my life. No one can tell me that dreams are not valuable and important.
It’s pretty cool to make dreams come true, too. Ben wanted so much to go to Walt Disney World as often as possible. That last trip we took, in July 2014, was a dream come true for him. It was a challenge, and I wished a lot for things to go smoothly. They went fantastically! We even had a Walt Disney World Halloween in July! Now THAT’s pixie dust and Disney magic at their finest!
Ben and I with Cinderella Walt Disney World July 2014
Maybe you didn’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be ok.
Cinderella, 1950 Walt Disney Productions
During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.
There is a song in the film, “So This is Love.” The song is sweet and romantic, and love is beautiful. In the rough times, it is easy to lose sight of those feelings. The thing is, when we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.
At the heart of the film is the song “A Dream is a Wish Your Heart Makes.”
A dream is a wish your heart makes When you’re fast asleep. In dreams you will lose your heartaches. Whatever you wish for, you keep. Have faith in your dreams, and someday Your rainbow will come smiling through. No matter how your heart is grieving, If you keep on believing, The dreams that you wish will come true.
I’ve always been a dreamer. I believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Fairy Godmother said, “Even miracles take a little time.”
Pinocchio was released on February 7, 1940. I do love this story of the mischievous little puppet who just wants to be a real boy. For me, so much of the film is about the song lyrics. They took on a special meaning when I was a caregiver.
When times are hard during caregiving, whether it is in the role of caregiving itself or in watching your caree struggle, it is easy to wish, as Pinocchio did:
I’ve got no strings So I have fun I’m not tied up to anyone They’ve got strings But you can see There are no strings on me
There were times when I just wanted to stroll home instead of rushing to tend to Ben, or go to dinner with a friend, or watch tv without an interruption. For me, much stress came when Ben was feeling frustrated and took it out on me by being critical and difficult. Ben did not want to accept that he needed more care than I alone could provide. He did not want to admit that he was afraid to stay alone. I did not know how to approach him about the fact that he needed more care. I didn’t want to disappoint him and yet I was upset because his expectations were unrealistic. I was upset with myself for rarely standing up for myself. Frustration was perfectly understandable on both of our parts.
The truth was that I was attached not by actual strings, but by my heart. When I did have some time to myself, Ben was pretty much the only thing on my mind. If I went out, I constantly texted him to see if everything was ok, even when someone was with him. I knew he was most comfortable with me and I was most comfortable when I was there.
When he did finally agree to get a home health aide, we had our routines for when they would update me. I had my phone with me at all times waiting for his text telling me that he was awake and seated at his computer. Even when he was in the hospital, and I knew he had constant medical attention, I felt the need to be there. After all, he could not even move his hand to use a call button. The strings that attached us were heartstrings, and there was no breaking them.
I had a lot of support from friends, his medical care team and some family. Of course, they were concerned about Ben, but they were also concerned about me and that I was running myself ragged. I know the philosophy that if you don’t take care of yourself, you can’t take care of anyone else. But, it was impossible for me to prioritize myself knowing that Ben had ALS and it was progressing, and knowing that he could not help needing assistance. In the back of my mind, he was dying, so while he was here I had to do anything to help, advocate for and entertain him.
There are also certain realities that affected caregiving. Insurance does not cover home health aides. Since ALS is a disease that does not have a predictable progression, even when he admitted to needing help, he was afraid that he would completely deplete his savings. These are such stressful situations to deal with in the midst of dealing with the physical and emotional impact of the disease. It is tragic that better care and attention is not given to circumstances such as these and to supporting caregivers and carees. I could devote many blogs to that subject!
I had so many people tell me that I simply had to tell Ben that I could not care for him anymore, or he could not stay in the apartment anymore, or he had to begin to pay for care. People are very good at giving advice. And, in my experience, they really do mean well. Interestingly, they don’t always follow the advice they give. Some people who told me to take a hard line with Ben have been in caregiving situations where they were also towing the line without support and with unrealistic expectations from others. In grief, people have also told me what I “should do.” Again, they mean well. Some people think that blogging and pursuing opportunities to support other caregivers keeps me in the past. I disagree. I feel it is important, and even responsible, and it is also rewarding. It allows me to take my experiences that have shaped me and use them positively as I live. But, no one should really have to defend themselves. I say this here because, as caregivers, we all have to redefine our lives, and maybe my own experience will give other caregivers food for thought. The bottom line is that we all know in our hearts what we have to do because our consciences are our guides. We can request and get advice, but only we know ourselves and our circumstances. And, until you walk in someone else’s shoes, you cannot clearly judge them. I mean this about caregivers and carees.
Jiminy Cricket was so right when he said, “Always let your conscience be your guide.” I had to do what I felt was right for Ben. I hope that I’ve come out of the experience with a stronger ability to communicate my feelings, but I still would not have changed my actions. Although I always worried that I was not a good enough caregiver, particularly when Ben was in bad spirits and critical of me, I let my conscience be my guide. I look back and am grateful that, in the end, Ben was able to stay at home with me until he went into the hospital, and I was at his side until he left this world.
As I wrote in a previous post, I still believe in making wishes, and I love the song “When You Wish Upon a Star.” I wished that Ben would find peace and I do believe that wish has come true and that he is in a place where he can walk and talk and eat and play his musical instruments. I wish for a cure for ALS. I will continue to wish until it comes true because, as the song goes
When you wish upon a star Makes no difference who you are Anything your heart desires Will come to you
If your heart is in your dream No request is too extreme When you wish upon a star As dreamers do
Like a bolt out of the blue Fate steps in and sees you through When you wish upon a star Your dreams come true
All music and lyrics by Leigh Harline and Ned Washington