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.
The Performers:
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.
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.
“Pooh’s Grand Adventure: The Search for Christopher Robin” (1977) Walt Disney Television Animation
It has been six months since I began this blog, and since it is the beginning of a new year, it seemed like a good opportunity to reflect on my experience blogging thus far and what I would like to see in 2017.
I began my blog with the quote from Winnie the Pooh that you also see in this very moving clip.
“You are braver than you believe
Stronger than you seem
and Smarter than you think.”
Pretty insightful stuff from a kind little boy to that “willy nilly silly old bear!”
Disney has brought me happiness, entertainment, and even life lessons since I was a child, and it was a tremendous bond between my mom and me and then between Ben and me. Disney became an important source of inspiration and strength when I was a caregiver and in my grief. It has brought welcome joy and laughter when I did not believe it possible. I started this blog because I was working through grief, but also trying to make sense of my experiences in caregiving, and Disney played a pivotal role in this process. I wanted to share this with other caregivers and people in grief, to forge a dialogue to validate our feelings and support each other as we rediscover ourselves and reshape our lives. That remains a goal for 2017.
If you’ve been following Pixie Dust For Caregivers, you know that in my own experience, my husband, Ben, had ALS/Lou Gehrig’s disease, and at the same time my father, Jacob, had cancer. During the crises, or the exhaustion- physical and/or emotional- I definitely did not feel brave, strong or smart. I often I felt like I was running in circles and going through motions to get through each event. But, saying that quote from Christopher Robin gave me something to hold on to. It became a kind of mantra for me and it never failed to make me smile. Say it. And say it again.
I do find that writing has helped me sort through a lot about caregiving, grief and my emotions. If you like to write, I recommend it as a way to gain some insight into yourself and your experiences. Blogging has been a very powerful way to connect with others, too.
Following is some of the pixie dust that my Disney friends have sprinkled on me, with links to the corresponding posts:
No matter what the crises or waves of emotion, in caregiving and in grief I have to “Just keep swimming.”
There have been, and continue to be, times when I have to think like Scar.
Playing Pollyana’s “Glad Game” was a great reminder of how fortunate I am to have had such wonderful people in my life, despite the pain of losing them.
Walt Disney not only had a brilliant creative mind, he had a world view that offered much inspiration to me as a caregiver and in grief.
Coming to understandings about caregiving and grief, and finding peace with my experiences, happens slowly and sometimes subtly. It is an unnerving and emotional process with dramatic, sudden, and surprising ups and downs. I have more moments of joy now, and those moments are still sprinkled with some guilt and discomfort. However, I am learning and striving to find ways carry Ben and my dad in my heart as I continue to live. As Christopher Robin tells Pooh in this clip, even though my loved ones and I are not together, they are always with me.
I have communicated with many interesting people at various stages of caregiving and grief. We have found comfort and insight from experiences we’ve shared. I continue to learn and I thank readers who have shared their thoughts. I hope that 2017 brings new revelations and understandings as I continue to seek new ways to honor the memory of my loved ones and to bring new joy, peace, laughter and love into my life.
What do you wish for yourself? Please let me know in the comment section below. If you don’t see the box, click on the title of this post. Thank you!
There are so many things that conjure my loved ones and I hold onto those with much love and sentiment. There is the Les Miserables sweatshirt my mom looked so cute in, along with her Paddington Bears and toy cars. I feel especially connected to my grandma when I use the rolling pins and cookie cutters that I used with her from the time I was a little girl. I hold dear the movie history book that my dad kept and updated with the death dates for the actors as they occurred. He was never interested in celebrities, so this always struck me as so odd but as endearingly funny and quirky as my dad. I love to look at his USMC cap and model of the F7 airplane he flew during the Korean War, as well as some of his books, including the book of dog breeds that we used to study when I was a girl. In my living room stands the curio cabinet that my great-uncle Davis made and my Tanta Rosie gave to me because I’d admired it since I was a young girl. Those are just some of the love-filled mementos I have of the past.
If you’ve been reading this blog, you also know that Ben and I loved to look at photos to revisit our days in Walt Disney World. I found web sites on which I could upload favorite photos and make a quilt, shower curtain and towel, so that he could always be surrounded by his favorite pictures and memories. Now, those wonderful, magical times surround me.
Ben also had a huge and ever-growing collection of t-shirts, many of which I brought for him as little surprises. I could not part with them. I couldn’t keep that many t-shirts and wear them. I had them made into quilts for Ben’s daughter and for me. When I set mine out on the bed, it was emotional to think of what the t-shirts represented- the many Mickey’s Not-So-Scary Halloween Parties, places we visited, events we attended, and things he loved, like the Beatles. Now, it is a special feeling to wrap myself in those memories. For a while after he was gone, I continued to order t-shirts that I knew he would have loved. I’ve tried to curtail that, because without him here, they don’t bring the same joy, and I would soon need to make a new quilt!
A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.
The things that bring an unexpected sentimentality are the things that become most unnerving. Recently, it was Ben’s table, which was also his desk. He brought it with him when he moved into my apartment. I never liked it, and I tried to persuade him to let us get a new one. It was a somewhat beaten up, not terribly steady, unattractive folding table. He knew it was always on the verge of collapsing, but, it was comfortable for him and since he dealt so graciously with all of my dolls, how could I really argue?
This is Ben’s table waiting to be filled with cookie batter and lots of supplies!
Several months after he passed, I began to fix and redecorate the apartment. It felt too soon, but my tiny NYC apartment held many physical and emotional scars of ALS. I knew that it was a positive thing to do, but it also came with the guilt that making the changes, albeit necessary, might even slightly imply that I was happy he was not here and I could change things. I also wished that he could be here to enjoy it. I painted, recarpeted and got some new furniture. I also put up many pictures of Ben, continued to display his things and even framed one of his Beatles albums. He was a part of each decorating decision that I made and he remains very present here.
I thought it would be good to get a new table. I found a nice wood dining table that could be extended and I liked that idea because my intention was to start inviting people over. That was something we did not do when Ben was ill because he was self-conscious about having people see him and because the apartment was, frankly, a very cluttered disaster.
Given how much I disliked the table, I thought it would be easy to replace it. But, like the computer that sat on that table, it was like a lifeline to Ben. He sat at the table almost every day. I brought him to the table in the morning before I left for work, and brought him back to bed from the table each night. His little collection of Disney toys was on that table. He played around on the computer all day at that table. I fed him his meals at that table. I set his shaving things on that table as he taught me how to shave him (I can’t say I ever mastered it very well but Ben said I did pretty well). His birthday cakes and parties took place around that table. He looked at our Christmas tree from that table, and as I explained in a prior post, I placed his favorite ornaments on our tree so that he could see them from his chair at his table. Sometimes, after I put him to bed, I would decorate the table or place surprises for him that he would spot when he sat at the table. For example, one Halloween, I got him a Disney countdown calendar figurine and every morning, when he settled in at the table, he would see that I had moved the day closer to Halloween. The night before Halloween I put Halloween garlands and fake cobwebs all over his desk area. I also waited for him to go to bed to sit at the table and make my crafts, including making elaborate cards and gifts for him. He knew there would be surprises and he loved to discover them.
Ben’s birthday, 2013, seated at his table. He loved peanut butter M&Ms but shortly after that photo was taken, he had to stop eating them.
Birthday cake, 2013, on his table.
There was a lot of history in that ugly table! I simply could not get rid of it. I decided to keep it, and to use it when I baked cookies and humentashen. I knew Ben would approve of that, because he loved when I baked and he even helped with the humentashen until ALS took the use of his hands. I folded the table and kept it behind my media cabinet. I placed his computer right on my new table and I continue to use it to play his music. I could never part with his computer. This Christmas, I put his fiber optic Disney tree in the same corner of the new table that he liked it to be on his table.
Holiday display on the new table, with Ben’s little Disney fiber optic tree in the same position that it had on his table.
On Christmas Eve, I took out Ben’s table to do my baking. Baking Christmas cookies gives me a lot of peace and I looked forward to doing this. As I started to set up the table, one of the legs broke off. I was devastated. In a panic, I got out my drill and tried to fix it. I took out my heavy duty glues, too. Nothing worked. I managed to secure the leg so that I could use the table anyway and just hoped that it would not collapse. I asked Ben’s friend to come over and look at the table. He did not seem too hopeful that it could be fixed but he could tell that I was heartbroken and said he could try to drill new holes. I was able to complete all of my baking and decorating, which was quite a relief. Ben would be delighted with these finished products.
The last batch of Santa cookies made and decorated on Ben’s table.
Chanukah cookies made on Ben’s table.
Mickey Mouse snowmen cookies. Also, the last ones made on Ben’s table.
The final assortment of cookies! My grandma and Ben would be proud!
On Wednesday, as I went to fold the table, the opposite leg broke off. I was utterly crushed. I realized that there was no way that the table could be repaired. Ben would not have been surprised. He knew the table was not in good shape but I think that, especially as the ALS progressed, he knew what was comfortable and manageable for him. I cried as I kept some of the nails and hardware and took the table outside to the curb. This eyesore of a table that I’d wanted to replace was the hardest thing to let go.
In caregiving and in grief, we are reminded to focus on memories that keep us connected to our loved ones and let us remember them as they were and as we were together. I’ve written about the wonderful memories that comfort me in the difficult times and memories of the ugliness of ALS. I am eternally grateful for the times that I could make my dad and Ben smile, or make their lives a little easier and more comfortable. Those moments are priceless reminders of the depth of the love we shared. The heirlooms and treasured objects also hold memories and affection. Then, there are the surprising things-the “stuff”- like Ben’s table, that touch my heart with the stories they tell. In love and loss, and caregiving and grief, all of these things matter.
