caregiver

More Than “Just Keep Swimming”- Wisdom for Caregivers from Dory and Hank

Brave Disney during her hospital stay.

I have written before that although I lost myself when I was caregiving, I also found myself in caregiving. I might have fought it when things were difficult or devastating, but I also learned to embrace the beauty of caregiving and to recognize the strength that I do possess when I am in the role of caregiver. I have lost my dad and Ben, but my role continues and it is a perfectly imperfect fit. That became especially clear to me over the past few days, while caring for my ailing cat, Disney.

Disney is almost sweet 16, and sweet she is. She is the most gentle, loving girl, and a little bit of a spoiled brat, but as Ben would say, I created that monster. She’s got a lot of medical issues- diabetes, thyroid, arthritis, heart murmur. With each diagnosis or complication, I’ve channeled my inner Dory and I “just keep swimming.”

Disney was originally diagnosed with a thyroid problem and diabetes just two weeks after Ben passed away, and the news sent me reeling but I was not going to let the undertow drown me. I was told that I would manage her condition by administering injections of insulin twice a day. I am a squeamish person and this had me terribly nervous. But, I reminded myself of all the very ugly and messy things I had to do for my dad and for Ben. “You are braver than you believe, stronger than you seem, and smarter than you think.” Yes, and thank you, Christopher Robin, I am. Disney is a wonderful patient, and she makes things pretty easy. She has begun to eat the pill pocket containing her thyroid medication, leaving the pill visibly displayed for me, showing that I have not outsmarted her. But, as her caregiver, I have to ensure that she gets what she needs.

A couple of days ago I took Disney to the veterinarian for a follow-up visit, pointing out that she was not eating as well as usual. The vet suspected some kidney damage and an infection. Her blood sugar was also very low. She stayed in the hospital overnight for glucose infusions and monitoring. Then, it was determined that she should have an ultrasound. I was able to visit her during her two night stay, and when I was with her she curled up against me and closed her eyes, because all is well in Disney’s world when her mommy is with her. I love the quiet, sweet moments when I know that I am comforting her.

Visiting hours for Disney.

We were sent home with new medications, including one to be given with a syringe, and fluids to be administered under her skin with what looks like an IV drip. I think her vet thought I would pass out or break down as I wrote down all the notes and when I saw the set-up. As Dory says, “You can do whatever you put your mind to.”

When we got home and before we went to sleep she was not acting right. She had two accidents on the bed, which I attributed to the infection. But, she was extremely lethargic and wobbly. Then, she had what turned out to be a seizure. I held her in my arms and she calmed down. After another similar episode, I decided that I had to call the Emergency Room at around 4:30AM. The doctor asked several questions and heard Disney’s distress meow, and said that I should get her to the ER. I sat and waited for a report, as I had done so many times with my dad and Ben. I felt that same exhaustion and worry. And, I realized that although I was distraught, I only wanted to care for and console this little girl whom I love so much.  I am most comfortable in the role of caregiver. It is who I am.

It turned out that Disney’s blood sugar was super low, and had I not taken her to the ER, she might even have died. I am still having trouble wrapping my head around that. She was kept in the hospital for several hours for monitoring while they intravenously administered dextrose. She perked up and was doing much better, so I was allowed to bring her home.  We are adjusting her insulin dosages but I must carefully watch her behavior and reactions. As I cancelled my weekend plans with friends to be with her, I had flashbacks of the many plans I had to cancel or postpone due to issues with my dad and Ben. Of course, there were times I was very disappointed about not going out, but caregiving was my priority and, at the time, because of so many conflicting emotions and so much chaos, I don’t think I even realized that I took pride in being the person they trusted and on whom they depended. It is only in retrospect that I began to realize that it was through caregiving that I really knew who I was and what I was meant to do. Now, I know that Disney will feel better if I am home with her and I love that I make her feel better and that I will be able to give the vet necessary information to inform the treatment plan as we move forward.

I was afraid to go to sleep last night for fear that something would happen. Eventually, we both fell asleep. I awoke to her on the bed staring at me. She did not want to eat much of her breakfast, which has me concerned, but I will be in touch with her veterinarian. She definitely was not thrilled with all of the medications, but was very cooperative. She has been very cuddly and purring a lot, which is a good sign. As I’m writing this I am smiling, because although this is stressful, it is the normal with which I am most comfortable. This is who I am. And, for the first time, I’m feeling proud of it. Like Hank, I’m OK with crazy!

I admit that I am terrified of losing Disney. Intellectually, I know that she has health concerns, and that she is a senior cat. Emotionally, she is just such a lovely cat and she has been there for me as I cared for and lost my dad and then Ben. At my loneliest, most frightened and most inconsolable, she was there with cuddles. She is the cuddliest cat I’ve ever met. People who don’t love animals don’t understand. People like me, who love our pets, don’t understand people who don’t understand the love we feel for our furbabies. But, I was raised in a family that unquestionably valued our dogs as family members. My dad loved my cats, too, though he did unabashedly compare them to our Schnauzers! Some people might take offense at my comparing caregiving for Disney to that of my dad and Ben. I can tell you that my dad would have had it no other way and he would be flattered. Ben would completely understand and he, too, would be flattered. The bond that is felt when caring for someone you love, human or otherwise, is profound and priceless, despite the difficulties.

I summoned the courage to ask the vet if she felt that I should brace myself for losing Disney soon. Thankfully, she said that we do not yet have to make that decision. But, she said that with all of Disney’s health issues, it is a challenge to manage all of her conditions. It is a lot of medication, additional vet visits and always the risk of ER visits. This is a big financial and emotional expense and challenge. In my mind, if she has a good quality of life and just needs management of her conditions, I am up for the task. Disney has always risen to the occasion of comforting me and giving me joy and laughter. She did that for Ben, too. She was definitely affected by the way he changed as a result of ALS and in her own way, she was protective of him. When he was in the hospice in his last days, I was allowed to bring her to visit him. At first, she didn’t like being on the bed with him because her arthritis renders her uncomfortable at times. She sat on the chair next to him and intently watched him. At one point he asked me to lift her and put his hand on her. When I put her on my lap to bring her closer, she pulled herself onto the bed and curled up on him. I put his hands on her and she turned on her side. They both closed their eyes. I believe that in that moment they said their good-byes. It was beautiful. For me, Disney represents a very close remaining connection to Ben. I’m sharing a photo of them in the hospice. I generally don’t share these personal photos, because they are difficult memories and private, but I do think that it is important for people to see the realities of disease.

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

I will never be selfish and prioritize my desire to keep Disney with me over her quality of life. But, once again, I am lovingly, proudly and purposefully, though sadly, in the position of caregiver, and I will do whatever I can to give her a good quality of life and a lot of love, as she did for my dad, Ben and me.

Disney thanks everyone for their well wishes while she recuperates.

Two Years

Today marks two years since Ben left this world. I don’t know if it feels like a longer or shorter time. I guess both, depending on what moment I’m in. I’ve spent the past few days thinking about what to write and how I’m feeling. These are hard days filled with tears that flow easily. In my mind, it’s perfectly okay to have a few sad days. In a way, the tears are reminders that I was fortunate enough to have had a beautiful love that I miss so profoundly. But, it’s sad nonetheless.

A year ago, I posted this video, and I am posting it again because I love these memories of Ben and I love people to remember him alive and vibrant. He loved those photos, too. And, “In My Life” was his favorite Beatles song. It was played for him by a lovely guitarist named Todd on the day he left.

I know for sure that Ben has not left me. As Mrs. Frankenstein says, he has moved into a special place in my heart. I often feel him with me. I still talk to him. That does not make sense to everyone and that’s okay. It seems to me that the best thing that I can do is try to honor him in my actions. Sometimes I buy things, listen to music or watch movies because they let me get lost in thoughts of him, and in those moments I see him smiling. Sometimes this gives me comfort and at other times it is a painful reminder that he is not here. Sometimes I do need a good cry.

In facing this second anniversary, I took time to reflect on the past year and where I am compared to last year. Firsts are hard, and in that first year without him, every first occasion hurt in a very raw way. I labored through that first year, often just going through motions. Although I slowly ventured out and saw friends and participated in activities, I often returned home in tears because it took so much energy to act cheerful, and if I was at all enjoying myself, I felt guilty and overwhelmed, or almost confused by, the conflicting emotions. Blogging helped me find purpose and revisiting the Disney films I love so much helped me to focus, as I looked for messages and guidance and opportunities to gain insight into my experiences.

The fact was that although my dad died a year and a half before Ben, since I was so busy as Ben’s caregiver, I did not have the time to really grieve that loss. When I lost Ben and I no longer had caregiving responsibilities, I was able to truly grieve, but it was for the loss of both of them. It was also the loss of what had become my definition of myself as a caregiver.

In this second year, I still profoundly felt Ben’s absence, and yet, I have found that he is always present. I had to establish a new normal. I would say that this year was spent integrating my caregiving experiences and grief with rediscovering myself and redefining my life. I have made changes, particularly to my apartment, and I’ve documented those in this blog. The changes have not come easy, but Ben has been a part of the choices I’ve made. And, there are some things that I cannot let go, which was why I got so upset when his computer crashed and insisted on restoring his music library on his desktop computer with his speaker, and why I have continued to use his desk chair/wheelchair although it is not in great shape and I have new and beautiful Mickey Mouse chairs that he would love.

I admit that I dreaded this day and have been very emotional even thinking about this blog post. In general, although I have not forgotten the scary and devastating times, I prefer to summon the fun and loving ones. Unfortunately, summer, and these few days in particular, are spent reliving Ben’s last days, with hospital and hospice memories. There was a lot of love, but there was ultimately loss. I can’t seem to stop replaying the scenes in my mind. I’m trying to embrace the sadness as part of the process of grieving and as a quiet time to think about Ben and about us, and how much I miss him. I give myself permission to be emotional.

Last week, I did have a wonderful distraction, traveling to Chicago and visiting my dear college friend, Monica, whom I hadn’t seen in many years. She named one of her daughters Abby and I’d never met my adorable namesake, her adorable sister, Andi, or even her husband, Mike. Caregiving certainly kept me from going anywhere, but I’d lost touch with so many people I cared about. Catching up with Monica and meeting her family was a most special time and the happiest I’ve been in a long time. Spending time with good friends, being with kids, laughing and exploring are fun and treasured moments for me. Monica wanted to know about Ben, and it felt good and important to talk about him and our relationship in the good times and the bad times. Ben knew how important my friends were to me, and he would have loved Monica’s family and seeing me with them. He also would have enjoyed Chicago, and although it was sad that he was not actually there, I delighted in the Shedd Aquarium and the architecture, and especially The Bean, through his eyes. Yes, it brought some tears, but it also brought comfort. I can keep living and honor and carry Ben with me all the time.

The Bean sculpture in Millennium Park. It was probably the most sentimental place we visited, since Ben’s nickname was Mr. Bean.

Abby 2.0, my namesake, Monica and I taking our picture off of the reflection from The Bean!

Watching the historic solar eclipse with Andi and Monica. Ben, the science and documentary lover, would have relished this moment.

I learned a lot about myself over the past year. In Walt Disney Pictures’ Alice in Wonderland, Alice said, “I can’t go back to yesterday, because I was a different person then.” Caregiving and watching Ben battle ALS changed me. I felt and expressed love and compassion in such deep and immeasurable ways. I came to recognize a strength and bravery in myself that I still have trouble acknowledging, but I do know they are there. I found myself in caregiving and I want to support other caregivers whenever possible. I’m redefining my life with things that make me feel happy, satisfied and useful. I am not quite there, and I have my setbacks, but I am on my way, and I know that Ben is with me on my journey.

I don’t know what the next year will bring. I do know that I will take Ben with me in that special place in my heart.

I’m thinking of you today, my dear and silly Ben, as I do every day, free from the constraints of ALS and walking, talking, eating and playing your music. I love you.

Walt Disney World, Halloween

Ben and I at Walt Disney World, Halloween 2011. Good memories are always a comfort.

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.

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:

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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