Maybe it’s a “Hallmark holiday” and maybe it’s silly, but I’m sad today. Valentine’s Day has been a favorite holiday of mine since I was a child. I have hand-made Valentine cards for as long as I can remember. My great-aunts and great-uncles, and of course my parents, aunt and grandma, saved all of them. As they’ve passed on, their collections of the cards I made for them made their way back to me so I would know that they were kept and treasured. I see them as testaments to the love we all had for each other. But, I miss them.
My dad passed away the day before Valentine’s Day in 2014. I spent Valentine’s Day that year making his funeral arrangements and that hangs over the holiday now. His birthday is the day after Valentine’s Day. There is a melancholy that pervades these days. I remember the simple and sweet Valentine’s Days spent with Ben where we danced in the living room. Dancing was an important part of our relationship and I miss that, too.
But, Valentine’s Day is a time of love, and although I lost many people that I loved and who loved me so much, I am fortunate and grateful to have had them in my life and to still be surrounded by much love. Therefore, I continue tapping my inner child with my card-making tradition. I wish everyone a Happy Valentine’s Day filled with love and friendship, and a sprinkling of pixie dust!
One of this year’s cards. Ben loved Sully and he would have especially loved this card, although every one is different. I don’t know what I would do without crafts!
Today marks 3 years since my dad, Jacob, left this world. Not a day goes by that I don’t think of and miss him. I miss his laugh, his kindness, his advice, his sense of humor, and his history lessons. He was a proud Marine, and a real patriot, and I’m glad he’s not witnessing the current events in this country. He’d be pretty devastated, and he would also be reminding me that history does indeed repeat itself.
I wrote notes about my relationship with my dad for the Rabbi to present at his funeral. I thought that on this day I would share them to let people know a little bit about him. He would say he did not want any attention, but he deserves it.
My dad was a one-of-a-kind. He was so funny, so kind, so generous, but he liked you to think he was Archie Bunker. I don’t think he ever knew or believed how loved he was.
He was such a proud Marine. He wore his USMC cap so proudly and loved to run into other veterans and share stories. But I was his Private Benjamin. The first time I drove him to the VA out in Northport he just shook his head when I clapped and waved as the guard at the gate saluted us when I flashed Daddy’s VA card. Daddy saluted, shook his head and laughed. Although he was not an observant Jew, his Marine Corps experience, where he was one of 3 Jews, gave him a sense of pride in his religion and he did not tolerate any discrimination, gaining the nickname of “that crazy Jew” because he would fight anyone who even looked like they were going to say anything derogatory. He trained down south during the days of segregation, and he remembered with sadness and contempt the way he was not allowed to sit on the bus with his African American USMC buddies and how disgusted he was by those attitudes because it was so different than up here.
He lived and breathed dogs but really loved all animals. When I was a little girl we used to read the Dog Breed book all the time. I knew every breed and I used to say that I couldn’t be Daddy’s daughter if I could not identify every kind of dog! But, he took great pride in his dogs and Schnauzers were our breed. The whole neighborhood knew my dad as Dulcie’s dad. And we all lived by the motto of “love me love my dog.” He was delighted when a group of kids told their sister, who was afraid of Dulcie and making a bit of a scene, to “go inside if you don’t want to play with Dulcie” instead of telling Dulcie to go away. When he was selling our house, a real estate agent brashly told him to put the dog outside. He told her she could stand outside but the dog lived there. She left and never came back. My dad was fine with that! He used to leave messages for my cat when he knew she was alone and let her know that it was a grave injustice that her mommy left her alone.
He was so proud of me and excited that in 2010 I finally was able to launch my dream pet souvenir business and he loved helping me with ideas and business advice. Just last weekend Ben put pictures from a recent dog event I was asked to participate in on his iPad so I could show them to my dad. He loved to look at the pictures and was interested so in my life that he even knew my doggie friends by name.
He had such a good sense of humor and was also a prankster. He got such a kick out of calling companies to review their products or ask questions and having them send him coupons. Once he called me laughing so hard about his call to Uncle Ben’s Rice. He drove the poor girl crazy asking about the measurements, explaining that his mother in law had always cooked for him but now he was on his own. She asked him to hold on and he heard her say, “I don’t know if this guy is sorry that his mother-in-law died, but I sure am!”
He liked teasing my grandmother, sometimes by pretending to sneak into the kitchen to steal her freshly made matzah balls, to the point where she started counting them! To this day when I bake the cookies and hamentashen she taught me to make, I count the number of each shape and/or flavor!
He loved to laugh and to make people laugh. His facial expressions were priceless. His humor made stressful situations tolerable. I remember giving him books on Jewish humor and how he would call me to read some of the jokes, laughing so hard with his cutest laugh. He called me when he was watching our favorite comedies to recount a scene as he was watching it, and his laughter was so contagious that it always made laugh. Some of our favorite quotes came from Mel Brooks’ “The History of the World: Part 1,” “Tootsie,” “Guess Who’s Coming to Dinner” and “Hope and Glory.”
My dad loved history and military aviation. He knew so much about WW2. It was a challenge to find books about things he didn’t know, but he loved to read. I used to call him from Barnes and Noble and read the summaries of the new arrivals to see what he responded to. When there was someone or something that he didn’t know well, I knew I had a winner! Ben and I used to find documentaries for him and Ben would convert them to DVDs. He loved seeing footage he had never seen, and it wasn’t easy to find it!!! And we had many, many discussions about history.
As much as he loved gadgets, he had no patience. While he screamed about the bad instructions, I constructed tv stands and bookshelves. FIOS drove him crazy. I got many frantic phone calls when he could not get the tv to work. Ben and I downloaded manuals with the remote layouts so we could walk him through possible solutions. Ironically, he was a master at his trade in heating/air conditioning and was incredibly good at home repairs, helping neighbors and families with boilers, clearing floods, making heating/A/C decisions. Even from the hospice he gave me the perfect solution for dealing with the radiator and my freezing apartment.
He was like a father to Ben, who has ALS/Lou Gehrig’s disease, and was always looking for any gadget that would make his life easier. And they often do! I never had dinner with him where he didn’t order something for me to bring Ben, who cannot really get out very much at all any more. In the days when we did visit my dad, he would show Ben his gadgets, books and WW2 bullet casings and they would sit and talk about the wars. They both loved it.
I always knew how loved I was and I loved him. We used to speak maybe 5 or 7 times a day, sometimes to share what was on TV, or make each other laugh, or more recently, when he was living alone, I would remind him to eat and see how he felt every time I had a free period at school. Because I was a Spanish teacher he started watching Spanish television and he would call and ask me what words meant. I used to joke with my students that he worked harder than they did. But, it also intrigued them that my dad cared so much about what I did. And that was an important life lesson for many of them.
He was a man who was so devoted to his family. He always said that he just loved to hear my mom and I giggle with my grandmother. He was so proud to send my mom to meet me in England, even though both of us were amazed at her inability to work a luggage cart! He took care of my grandma, his mother-in-law, driving to and from work in Brooklyn to Woodmere to drive her to the beauty parlor, wait for her to be finished, drive her home, and then go back to work. He was honored and almost humbled that Uncle Larry called him every single Friday. He really missed Uncle Larry. There isn’t a friend or a child of a friend of mine that he did not ask and care about.
He was generous and was more comfortable giving than receiving help. He taught me by example to be kind, generous and compassionate and to have a sense of humor. I already miss the phone calls. But I am still talking to him.
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
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.