It was an honor to participate in Caregiving.com’s live broadcast, “Caregiving: A 6-act, 24-minute Performance.”
In case you missed the presentation, you can view it right here!
To summarize, six caregivers presented their experience in different stages of caregiving, from anticipating becoming a caregiver to after caregiving is over.
Andrew Koch, The Expectant Caregiver
Tami Neumann, The Freshman Caregiver
Carolyn Grant, The Entrenched Caregiver
Lisa Riggi, The Pragmatic Caregiver
Abby Kass, The Transitioning Caregiver
Colleen Kavanaugh, The Godspeed Caregiver
Please click here for more information about everyone. Listening to the other presenters was enlightening and inspiring. The performance goes beyond textbook explanations of caregiving and takes you into our lives and through the difficult and the heartwarming aspects of being a family caregiver.
My own presentation as a Transitioning Caregiver focused on when I knew the end was near for Ben. It’s a journey my close friends and family know about and it was a difficult one. I continue to be in awe of Ben’s bravery.
Deciding what to share in the presentation was actually a valuable and interesting process. When I first talked to Denise Brown, the Director, and narrator, of the performance, I recounted the details of what transpired from the time Ben went into the Emergency Room until he left this world. Denise pointed out that I was telling Ben’s story and not my own. Until that point, I never really thought about that. I had thought of the journey as Ben’s, although I was his caregiver. However, this process prompted me to think about my own journey as Ben’s caregiver and as the person closest to him as I watched him succumb to ALS.
I’ve said before that being a caregiver changed me. It is who I am. I embrace all of the emotions associated with it- good and bad- and continue to sort through some of my feelings and memories. My blog’s Disney-sprinkled reflections on these experiences help me in this process and will hopefully inform, inspire and/or validate other current and former caregivers.
I welcome your comments on this presentation. And, please visit www.caregiving.com to learn more about its many services.
Ben and I with Peter Pan and Wendy Walt Disney World 2006 Pre-ALS days
Peter Pan was originally released on February 5, 1953. Ben and I loved the film. What adult has not chuckled at how they spent their childhoods waiting to grow up just to wish that they had stayed children? I am a firm believer in embracing my inner child. Ben also loved to tap his inner child. Walt Disney World is a place where it is a requirement! Maybe that’s why Ben and I loved it so much!
The phrase “think happy thoughts” took on a whole new meaning when Ben was struggling with ALS and I was struggling with caregiving. ALS is known to be a very isolating disease. I’m sure that even when he was not literally alone, Ben felt isolated. I felt so helpless when Ben hurt because sometimes, it was so hard to speak to explain himself and be understood, that he just shook his head and stopped trying. Also, with every day came the dread of what ability he would lose. Sometimes he simply had a bad day and other times there was an obvious change in his health. There were days when I was able to care for him without any problems, but then there were the days when it was exhausting and overwhelming, and if I was having back issues, it was physically painful. We cannot walk in the shoes of our loved ones, we can only love them. Love is a lot. Thinking happy thoughts is a lot, too, because, along with love, it lets us remember who we were and what was important before illness changed things.
For us, happy thoughts almost always included memories of our visits to Walt Disney World. Ben spent so much time every day looking at the videos and photos from our visits to Walt Disney World. We loved to listen to the music from the parks, too. He went on their vacation planning web site to plan fantasy trips. I liked to see him planning because I felt it kept his head in living and focusing on what he could do. I truly believe that helped him manage the disease pretty well for about four years.
On those very difficult days when eating was a challenge, or there was a fall, or some other accident, or even just a lack of energy to transfer or be transferred, we had to remember, “All you need is faith, trust and a little pixie dust!” So much happens with illnesses and caregiving that is unpredictable and beyond our control. For me to maintain a certain state of calm that allowed me to be a problem solver, I needed to have faith and trust that things would ultimately be okay. The pixie dust was the whimsy that always let my inner child thrive in the midst of very grown-up, complex circumstances. Sometimes it was just a loving moment between Ben and me that would make us laugh. Sometimes it came from friends, sometimes it came from caring strangers, and sometimes it came from both of us taking a moment to remember the good and loving times. And, with faith, trust and pixie dust, we even made it back to Walt Disney World four times during his illness.
I named my blog Pixie Dust For Caregivers because quotes like this, as well as many Disney characters, films, lyrics and attractions from the Parks were the pixie dust that gave me perspective, inspiration, and comfort during the caregiving years and now, as I work through grief. They helped Ben, too. At times, they simply gave us much needed entertainment.
We did love the Peter Pan attraction at Walt Disney World. We loved to soar over Neverland on the pirate ship. Unfortunately, it is not accessible and has to be boarded while it is in motion. Ben had trouble with balance and walking early on, so it was the first ride we had to give up. Still, we never lost our love for Peter Pan and Tinker Bell.
After a respiratory crisis, Ben landed in the hospital, and life with a tracheostomy and feeding tube was not going well, including infections and pneumonia. After six weeks, Ben chose to go to the hospital’s palliative care unit.
It was painful beyond words to know that Ben was miserable. Tragically, ALS was not going away. He was not going to get better. But, to know that he had only days left in this world was devastating. At the same time, there was a certain relief that he would be free from the physical and emotional pain and constraints of the disease that rendered him unable to breathe on his own, speak, eat, walk, use the computer or play his instruments- things he loved. A line in the song “You Can Fly,” is, “Think of all the joy you’ll find when you leave the world behind and bid your cares goodbye.” I wanted Ben to have peace and to feel comfort he had not felt in the nearly six years he bravely battled ALS.
Peter Pan said, “To die would be an awfully big adventure.” I don’t know that I would call ALS an adventure, but it was a journey. A very difficult journey that Ben navigated with much bravery. Now, I put faith, trust and pixie dust in the belief that Ben has “bid his cares goodbye” and he is in a peaceful place where he can walk and run and eat and talk and sing and use his hands to use the computer and play his instruments. That gives me peace.
I am proud to participate in this event, which looks at the 6 phases of caregiving, as explained by caregiving.com/six/. Please join us today, Sunday at 3pm. If you can’t be there in real time, you can sign up for a notice and you will get a link to the file to view at your convenience. I will also put a link here.
Quote from Mary Poppins Disney and Cameron Mackintosh Musical Based on the Film
Maybe I am still in new year, new thinking mode, but this quote resonates with me in a special way. I feel that I have opened a door and stepped out of intense grief. Caregiving for my dad and Ben, especially when I was juggling care for both of them- literally going between Long Island and my home in Manhattan- was exhausting, challenging and devastating, but it was also the most loving, meaningful and rewarding experience in my life. After it was over, I floundered. Grief has been hard, and it has been grief times two. I’ve spent this time with many lows, then highs followed by extreme lows, and now I finally find more balance. I am always careful when I say this, because I never want to convey that I’m “over it” or I’ve “moved on.” But, I think I’m learning to coexist better with grief. And I’ve been opening some new doors.
After Ben “left” as he called it, I was so often told that it is now time for me. Well, that was fine, but I was not exactly sure how to fill that time. I missed my dad and I missed Ben and I even missed the caregiving. If you’re immersed in caregiving and its ugly parts, it may be difficult to see how I missed caregiving, but you must realize that I am writing this after nearly a year and a half of losing Ben to ALS, and almost 3 years of losing my dad. Time, reflection, and perspective gained are important. Nothing comes easily.
Life as a caregiver was stressful, exhausting, and it certainly kept me busy and on my toes! When I was the caregiver for my dad, at one point I took family leave and traveled about five hours every day to visit him, first at the hospital and then at the hospice. During this time, Ben was fairly comfortable staying alone during the day, and we had friends who could help if needed. And, indeed, there were occasions when they were needed- sometimes he could not stand up, other times he fell. Not being there was very difficult, because I was wondering, hoping that Ben was taken care of, until I would get an update. When I was at work, I kept my cell phone with me at all times, in case anyone needed to reach me.
I probably don’t need to say that I was devastated by my dad’s passing away. We were very close and I had also lost my mom. Ben was also distraught by this loss. I think Ben lived in such denial of his ALS and its ultimate outcome, that losing my dad made it too real for him. Although his daughter stayed with him on the day of the funeral, that night it was back to caregiving for me. We were both sad, but I was too busy taking care of Ben to really reflect on my loss. And, I was worried about Ben being too preoccupied with death. I resented that somewhat, because I did need time for my own feelings, but it was not Ben’s fault that he needed help and his immediate needs had to be the priority. Emotions can always be dealt with later, right? Well, not really. If you try boxing up your feelings, they are going to show up in any number of ways, including attitude, behavior and physical ailments. If you’re a caregiver, please remember that you matter.
With only Ben to care for, you would think that life got easier. Unfortunately, his ALS was progressing. Ben was very reluctant to get additional home care. Some of it was due to his lack of acceptance of the progression of ALS. He told me that I didn’t do much for him, or have to do much, which was untrue and, since I want to be honest here, it hurt and upset me, and left me wondering if I was good at what I was doing. Ben was not entitled to home health aides through insurance. I missed a lot of days of work if we were up all night or if I woke up and he was not feeling well, or he felt uncomfortable staying alone. When he awoke one morning and finally admitted he was afraid to be alone, I stayed home from school and made a lot of phone calls, finding him private care for just a few hours a day during the week, which was some of the time that I was at work. We put all kinds of systems into place for him to contact me, including a medic alert system, texting me at certain times. He was still alone at times, so I ran home after work, where I was then on duty until I left for work the next morning. In fact, I was never really “off duty,” I was just not physically present at times. And, our systems were not fool-proof. He texted me through his computer and an on-screen virtual keyboard, and if the mouse got away from him he did not have enough range of motion to get it back. Also, his voice was not strong. Once, he set off the medic alert device by accident. They did speak to him through the system but they called me to let me know that he had activated the alarm but seemed fine. However, I did not get any response from him when I texted to follow up. I dropped everything and ran home to find him sitting at the computer, absolutely fine, but had had been unable to respond to me because he could not reach his mouse. A few more gray hairs for me!
Even when he was in the hospital, I remained Ben’s caregiver. I was with him at least 12 hours a day, and sometimes overnight. ALS is very isolating. Ben could not use a call button and it was hard for people to communicate with him. He depended on me, but he also took that out on me, which was all understandable, even if upsetting. I supported, advocated for and comforted him on on the ALS journey throughout his experience in the hospital. Looking back, continuing in my role as caregiver was necessary and helpful to the staff, but it also gave me a sense of purpose in the midst of a tremendous feeling of helplessness.
After a summer entirely spent in the hospital and concluding with his loss, I had to return to work (school) in just over a week. I was not prepared. People told me it would be good to return to my routine. What they did not realize was that it was not my routine. My routine at work involved caregiving. It was texting with Ben. It was being in touch with the doctors and teams who worked with him. It was coordinating with his home health aides. It was walking around with my phone. Many a day that I left school, I cried because I missed my rituals of calling my dad and saying, “I’m free!” and texting Ben to see if he needed me to run any errands.
I did not want my memories of ALS to define my relationship with Ben, but I found that I did define myself as a caregiver. I joined support groups where the people said they would never want to be a caregiver again. I, on the other hand, missed not the illnesses and their ugliness, but the caring in the caregiving.
Maybe as a teacher I am a nurturer, but caregiving is something I cannot let go of. I started this blog as a way of sorting out my own thoughts, but also with the hope of helping others by sharing my experiences and things that supported and inspired me. Of course, with me it has to have a Disney twist! I did not realize that I opened up a new door when I began to blog. In a way, through Pixie Dust For Caregivers I discovered that caregiving is ingrained in who I am. Social media connected me with several wonderful caregivers and caregiving organizations and forums through which I have been able to exchange ideas and give support. I wish I had known about them when my dad and Ben were here and I was struggling in so many ways. I also enrolled in a caregiving consultant certificate program offered through Caregiving.com. There is a sense of responsibility that I feel to other caregivers, and camaraderie that I feel with them. It is also important to me that I remain engaged in the fight to defeat ALS and I feel strongly that supporting the emotional needs of caregivers of people with ALS is one way that I can do this. Through this certificate program I have been given an opportunity to participate in a unique virtual “performance” of the six stages of caregiving, to be broadcast online by Caregiving.com on Sunday, February 5. Learn more here. Please join us.
Another door I opened is that I have volunteered to work with my local chapter of ALS to create and deliver events for children who have a parent with ALS. My background is in arts and education and I am passionate about the power of the arts in our lives. When I heard that they have done crafts and other events for these children, it felt so right to me to be a part of it, and I am grateful and excited that I will participate in these efforts.
I could never have jumped into these endeavors immediately after I lost my dad and Ben. I could not have written my blog while I was going through the difficult experiences. I did write in my journal, but when I revisit those entries, I see that my thoughts were very scattered. I take to heart my favorite quote, from Christopher Robin to Winnie the Pooh: “You are Braver than you Believe, Stronger than you Seem and Smarter than you Think.” I am an emotional person and I easily cry, but I am strong and I lived through and handled challenging caregiving situations creatively, and hopefully, at least somewhat intelligently and successfully.
For people who believe that blogging and maintaining such a close connection to my relationship with Ben and with caregiving keeps me in the past, all I can say is that I disagree. I have taken my experiences and I am now ready and able to grow from them. I am learning about myself in ways that I believe are helping me to face the future, while maintaining my commitment to honor those I’ve loved and lost and, in this process, hopefully, helping others. I am emerging from intense grief and letting more light into my life.
I have begun to open different doors to begin to reshape my life. I hope you’ll join me on this journey and make some discoveries of your own! Always feel free to share and comment here!
Ben took this picture during our second visit to Walt Disney World, 2002 Mary Poppins is the first movie I ever saw in a theater. It will always have a most special place in my heart.
Today, January 13, 2017, marks 25 years since my mom, Sandra-“Sandy”- left this earth. There is not a day that I don’t think of her. I talk about her often, and so much so that some people do not realize she’s gone, or for how long she’s been gone. I don’t know if that is good, or “healthy,” but she is so much a part of me. I still, and always will, wonder if she would be proud of me.
My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie. There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.
My mom and I were very close, or , as everyone said, attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her when we were out shopping. People laughed that we spoke on the phone many times every single day, but I think we were fortunate to have had such a close relationship. We went to the theater and ballet together and spent a lot of time together and even with my friends. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events to see all we could and find the best sales. She was simply an adorable person. Being in London with her was also a hilarious occasion- I still remember laughing at how I would have to translate English to English because the British accent baffled her. Everything delighted her there, as it still delights me. We had so much fun. I loved my mom and she loved me, unconditionally. Frankly, I could not imagine living after she died.
When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as my grandma, who lived with us, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times. She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.
My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.
I realize that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after my grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with my grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles. I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. For a change of pace, I often brought home treats from Zabars or other NYC places. My grandma did not want to be cheered, and I understood that, though it was frustrating to me that she pushed people away. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. As in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.
London 1987. My mom could not wait to visit the Paddington store!
As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much of who I am and what I do reminds me of her. I get my Peter Pan-like inner child spirit from her. You won’t be surprised that Disney played an important part in our relationship, too. One of my favorite memories is when she called me from Walt Disney World exclaiming, “Abby, I met Mickey!” (picture below, left) Another is watching and giggling through “The Little Mermaid,” especially because my grandma was straight-faced and completely bemused by our amusement.
I proudly say like mother, like daughter!
I still miss my mom terribly. It remains a wound that is easy to open. When watching movies, I often cry at the mere mention of mother daughter love or the passing of a mother, and Ben intuitively handed me tissues in these instances before he even saw my tears. Of course, that made me laugh through my tears, and that was a good thing. Ben never knew my mom, but he knew how important she was to me and it touched my heart that he always marked in his calendar her birthday and this anniversary and on those days he would plan something Disney-related, like our date to “Beauty and the Beast-3D” (click here for that post).
I enjoyed the movie “Brave” and the feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But, the scene in the clip at the bottom of this post says it all. Even after 25 years, I just want her back.
I have struggled, I have adjusted, and I have had to accept her death. Now, I take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I miss and I love you, Mommy.