Caregiving

It’s National Respect Your Cat Day- For This Caregiver That’s Every Day

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Visiting hours for Disney during one of her hospital stays.

Today is National Respect Your Cat Day. As my grandma used to say about Mother’s Day, in my cat Tinker Bell’s opinion, and mine, EVERY day should be a day to respect your cat! I certainly respect, and love beyond measure, Tinker Bell, as I did Disney, and my first cat, Tiffany. My cats have celebrated my joys and helped me through my most difficult times. I am grateful for any opportunity to honor them. Now, as I “shelter in place” here in NYC during the coronavirus pandemic, I am even more grateful for the company of Tinker Bell and reflective on the significance of pets in my life.

I grew up with dogs- Schnauzers, to be specific- and would have called myself a “dog person,” but when I met Tiffany, my world grew and now I am also a “cat person.” Actually, I am an overall animal lover.

Tiffany, my first cat, was adopted by the organization where I worked because she was going to be brought to a shelter where she would have been euthanized in a given period of time. The managers of the organization were animal lovers, and they also knew that I was grieving the loss of my family’s Schnauzer, Dulcie. Tiffany chose me as her human from the moment she arrived at our office. I was allergic to her, and people had to help me put eyedrops in my eyes, but I took to her as she did to me. What can I say? I got better at eyedrops and Benadryl has become a staple in my cabinet. Tiffany was my assistant at all meetings, and she complained to me when anyone used “her” conference room. If I had been out of the office in the morning, she put on quite a show pretending that she hadn’t eaten, as staff members told me of the treats she had enjoyed. In the summer, when we had Fridays off, I could not imagine leaving her alone for three days. After all, I only knew of dogs and that they could never be left alone for that long. So, every Friday, I went to the office with a yogurt that I shared with Tiffany- she preferred peach and blueberry. I took Tiffany home for holiday weekends, too. As a kind of joke, I put on the movie Born Free and sang the song, inviting her to sing along. Who knew that she would?! And, that whenever she was hiding, if I sang the song, she would come out to me!

When I did get a new job, it was agreed that Tiffany and I belonged to each other. In Tiffany’s case, I really was the only person she cared about. She was a feisty and funny girl and I used to say that she spent hours thinking of ways to annoy Ben. She was really good at it, hitting him if I wasn’t looking, staring him down until he moved so she could sit next to me. Ben would proudly bring home shrimp for her, but she would only accept it from me. And, my favorite event was one day that I repeatedly overheard Ben arguing for her to stop. I went into the room and Ben complained that she kept closing the door to the entertainment center each time he opened it. I looked at her and she walked away with her confident strut and dismissiveness. Of course, she didn’t get in trouble. I thought it was funny.

Tiffany loved our Disney toys!

Ultimately, Tiffany got mammary cancer. After intensive surgery, within three months, it was back and had spread. I had to say goodbye to her. Ben accompanied me to the vet’s office. Despite her antics, Ben never had a close relationship with a pet until Tiffany, and he loved her very much. On our way home after saying goodbye, Ben broke down. We comforted each other through that grief.

I knew that I needed a new baby, so we welcomed Disney. Ben had a bit of a hard time fully embracing Disney because he missed Tiffany so much. However, much to my delight, Disney was the sweetest and  cuddliest cat I ever met, so she won him over pretty quickly. I probably compared her to Tiffany a little too much, but since Tiffany was not a cuddly girl, I did enjoy that Disney loved to be held and hugged. She helped me cope with the loss of my Tiffany. Little did I know that Disney would also help me to cope with the loss of Ben. Also, that she would help me to realize how important caregiving is in my life.

Disney was Miss February in a Bideawee Calendar!

After Ben was diagnosed with ALS, Disney witnessed and experienced Ben’s battle along with me. When he became homebound, she kept him company. She accommodated his desire to pet her by jumping on the arm of the sofa or on the bed. It was easy to see her concern as he had more difficulty navigating the space. Unlike many cats who are more territorial, Disney seemed to know that there was a reason for all of the changes in our apartment. Furniture was moved, things were stacked, her favorite corners were no longer available, but Disney handled it so graciously. She was there for me when I needed her, too. She sensed if I was crying or frustrated and was always at my side at those moments.

When Ben was in the hospice unit at Mount Sinai Medical Center, I was allowed to bring Disney to visit him. She was on thyroid meds and suffering from arthritis, so at first, she was not comfortable on the bed with him. She sat on a chair and watched him intently. When he asked me to bring her closer so he could stroke her, I put her on my lap and she pulled herself up on the bed, curling up on his chest. He asked me to put his hand on her, she turned on her side, and they both closed their eyes. I truly believe that they said their goodbyes in this moment.

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

Disney did not realize that she was the comfort that Ben and I needed after we lost Tiffany. She also became the comfort I needed after the loss of Ben. The apartment was so lonely and there was no more structure to my day without my hours spent at the hospital. I don’t know what I would have done without Disney’s sweet face and presence.

Unfortunately, only a couple of weeks after I lost Ben, I noticed some physical problems with Disney, and I took her to the vet. It tuned out that she had diabetes and I had to inject her with insulin twice a day. Just as I had to do as Ben battled ALS, I had to put aside my squeamish nature. Once again, I was a caregiver, this time for Disney. We had several emergency visits to the vet, including one in the middle of the night, when I genuinely thought I would lose her. Terrifying as it was, it was this incident that showed me that I truly am a caregiver at heart. (You can read a little more about my experiences with Disney by clicking here) It is my strength and my fulfillment despite the challenges and sadness. Administering fluids was the next phase of Disney’s illness and although it took me a while to learn how to do it without pricking her, she handled it so well. I promised Disney and myself that I would never keep her here if she was not having a good quality of life. Eventually, I was by her side as I let her go. It was particularly difficult to let go of Disney because she was my closest connection to Ben. She may not have been able to articulate her feelings, but she saw, felt and responded to his ALS struggle and its effects on our family.

I was very excited to tell Marie that she was Disney’s favorite actress!

I knew that I could not be alone for long. Within a couple of weeks, I welcomed a new little love. Tiffany and Disney were more than eight years old when I met them, but this little girl was only two. She was half the size of them, which, in my way of thinking, was fairy-sized, so I named her Tinker Bell. She has a lot of kitten in her and it delights me to watch her run around and play with her toys. Over the past year that she’s been here, she has become much more affectionate and she is very chatty. She still does not like to be held but insists on sleeping pressed up against me. Her greatest joy is knowing that I am staying home with her, so the current mandate to stay at home is a dream come true for her. I’m glad she doesn’t understand the news. Still, I can talk to her about my worries and enjoy having her companionship. I know she thinks she’s training me well, but I love making her happy.

On Tinker Bell’s “Gotcha Day,” February 18, 2019 at NYC’s Meow Parlour

People who don’t love pets do not understand that my pets are family.  Today is Respect Your Cat day, and I am happy to recount these many reasons that I respect, and treasure, my cats and all that they have brought to my life.

At home on the sofa with Mommy is Tinker Bell’s upside to the coronavirus pandemic! She loves her friends Sully, Bambi, Marie and Pooh, too!

Through A Caregiver’s Lens: Coronavirus, Feeling Inside Out and Listening to Buzz Lightyear

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I’ve said before that being a caregiver changed me. I have come to realize that I look at life through the lens of caregiving and, also of ALS. The Disney Pixar film Inside Out shows us that life can’t all be Joy, and that’s ok. There is a scene in Inside Out in which Anger, Fear and Disgust try to be Joy, since Joy is unavailable. They couldn’t pull it off. I find myself thinking of all the times that I forced myself to be the cheerleader to bring laughter, joy and a sense of confidence to Ben. I could spin moments as joyful and funny or silly. I rarely shared with him my fear and frustration. A recent experience set me in a bit of a downward spiral that has been further escalated by the coronavirus pandemic. Many of the realities of caregiving and ALS, and the less positive memories, keep surfacing. I can’t mask my emotions for myself as I did for Ben. I can only try to make sense of them.

It started just before theater events were cancelled here in NYC, when I attended a concert celebrating the music of Sheldon Harnick, lyricist of one of my favorite shows, “She Loves Me,” and also of “Fiddler on the Roof” and many others. I was excited about the concert because Liz Callaway, one of my very favorite Broadway singers, was performing with Karen Ziemba, whom I also like. I didn’t even realize that Mr. Harnick would be there. He is an adorable man of around 95 years who was having so much fun singing his songs. What I didn’t know was that Rebecca Luker was also one of the performers. Rebecca Luker recently announced her battle with ALS. When I saw her name on the program I was immediately unnerved. I don’t see many people with ALS and it is difficult for me. At the same time, I was actually relieved to see that she is still able to perform. I thought about leaving, but decided to stay. I guess that I was curious about how she was doing and how I would handle it.

When Rebecca entered the stage in her electric wheelchair with Karen Ziemba, I did cry, but her big smile showed that same bravery that I admired so much in Ben. I cried as I drew the parallels and distinctions between her abilities and Ben’s, since the trajectory of the disease varies from person to person. I watched everything she did, noting that she was able to hold a bottle and drink water and to use her arms and hands to put on and take off her glasses. She had the strength to hold a book that was a prop. She didn’t have any the bouts of involuntary laughter or tears that plagued Ben. Her voice was strong. When she sang her first solo, I saw Karen Ziemba get emotional and wipe away some tears as she squeezed Rebecca Luker’s arm. I tend to reflect a lot on the emotional aspects of caregiving and the battle with ALS. This bought back physical  details of the disease and how I watched everything in Ben’s world change. We never knew what the next day would bring.

After the show, I watched the women tend to their friend. I was grateful that her friends were there. I remembered how my friends helped me, but also, how alone Ben and I often felt. I loved hearing the music at the concert but felt so distracted by memories of the realities of living with ALS. I wondered about what Rebecca Luker’s daily life is and how her family is doing. I cried for what I knew would befall Rebecca Luker. It was powerful to have this experience at a musical concert, though it has left me shaken. Though he was not a performer, music was so important to Ben and played a powerful role throughout his struggle with ALS. He loved to play around with his instruments and missed that as he lost his dexterity. He always found comfort in music and I am glad that it surrounded him through his last minutes. I was so happy that Rebecca Luker still has her voice and her music. I hope that she is able to find comfort in performing for a long time and that all people with ALS are able to enjoy a source of comfort.

Within just a few days of the concert, the coronavirus became more of a severe threat and it began to affect daily life. My reaction was still grounded in caregiving and how I would have handled it if Ben was here and I was his caregiver. I thought about how I started consistently getting flu shots only after Ben was diagnosed with ALS. My doctor said that I should get one to protect Ben. It didn’t protect me from the bouts of bronchitis and pneumonia that had us on edge. Thankfully, Ben never caught those from me, but the idea of his contracting anything respiratory was dangerous and terrifying.

I was so angry that it took so long for NYC to decide to close the schools because I reverted to how I would have felt if I was Ben’s caregiver. I would have been living in a panic about bringing germs home to Ben. Coronavirus would likely have killed Ben. I talked to my students about my experience when they expressed the concern about coming home from school to elderly grandparents or immunocompromised family members. They needed compassion and empathy and they could see that I completely understood their worries and that teachers are human. If this had happened when Ben was here and the schools had stayed open, I probably would have put my job on the line and insisted on staying at home with him. I was always worried about my job because I took so many days off to care for my dad and Ben. At one point I did take family leave. Now, as I relive all that anxiety, I think of the caregivers who are making these tough decisions. I can say from experience that there is such a need to support caregivers, particularly as more people are turning to family caregivers due to the lack of coverage by health insurance. The coronavirus brings additional challenges though, in that caregivers who travel to the homes of their carees potentially bring the virus with them. I am having difficulty distancing myself from these concerns. I want to help. Maybe sharing these thoughts will be enlightening.

Although I am not a caregiver and this is no longer a direct problem for me, I have stepped back into my caregiving mindset. My emotions have turned me inside out because of all of my memories. I cannot stop thinking about how nervous and upset I would be about taking the subway and going to school in the midst of the pandemic. I relate to the frenzy of paid caregivers not being able to work because they have to take care of their own children in light of school closings. I think of the many times that I had to stay home from work because a caregiver was unable to work, or because Ben was having so much anxiety that he wanted me to be home. The new social distancing would have kept me from even thinking that anyone could step in and help. Caregivers cannot socially distance themselves from carees. It would have had us worried about interactions with anybody else. I learned not to count on visitors to help, but it would have been terrifying to know that calling anyone for assistance would mean potentially exposing Ben to the virus. The importance of a hug would be tempered by the need to limit contact. Although more than four years have passed since I have had those caregiving responsibilities, I find that every action I take is through the lens of a caregiver and becomes a reflection on how it would have affected Ben. I continue to feel that stress.

I have been trying to step outside for a little walk every day, to get some exercise and fresh air and to feel connected to humanity. I cannot get beyond thoughts of what being outside meant when Ben was battling ALS. We lived up a flight of stairs and once he couldn’t walk, he could not go outside. I went to work during the week but ran home after school to tend to Ben, except for the rare occasion that his daughter visited with him and I could have a bit of respite. I had no idea what was going on in my own neighborhood. Ben looked forward to weekends because I was home with him around the clock. Despite the love and devotion, it was hard for me to essentially be working seven days a week. I can’t deny that I did want, and need, time for myself. In our difficult moments, I felt resentful and frustrated, and guilty about those feelings. When I felt captive, I realized that Ben was always captive, at home, but worse, in his body. On the occasions that I went out to pick up groceries or supplies that Ben requested, it was always very briefly. One of the advantages of being in NYC is that everything is just a couple of blocks away. However, even a short outing came with the worry that Ben was alone, though I never left if he didn’t feel confident. Although I did at times really need those outings for my peace of mind, acknowledging that to myself did come with guilt. After all, Ben couldn’t get outside and he just wanted my presence. Now, as I go for my walks, I find my mind drifting to thoughts of how I would be worried about my exposure to the coronavirus and bringing it home to him. I know that these are the things that all caregivers must tackle.

I do find myself feeling relieved that Ben, and my dad, are not here during this pandemic. When my dad was in the hospice, I probably would not have been allowed to visit him, or our visits would have been severely limited. That would have been traumatic for both of us. However, traveling by train to see him would have also brought the worry that I would infect him and/or Ben. Now, my dad and Ben have no worries. Technically, I don’t even have those worries. I should take comfort in that. Instead, I feel a combination of guilt and unease. Current events fill me with anxiety as I conjure memories of the difficulties of caregiving and life with ALS. I cannot seem to shed the caregiving instincts and I don’t seem to want to. But, without the caregiving responsibilities, I do not know how to direct my energy.

Yes, caregiving has changed me. I believe that it changes everyone. Some people cannot get far enough away from the experience, and I can understand it. In my case, caregiving is embedded in the way I define myself. I even obtained my certification as a caregiving consultant. This was less a professional goal than a means to acquire skills to use to support caregivers in any kind of volunteer capacity, and to bolster my knowledge in my blog posts and interactions with readers. I want to care for the caregivers. A while back, I created a webinar about how to keep your identity when you’re a caregiver. I’m posting a link to that webinar here (https://www.caregiving.com/caregiving-webinars/webinar-finding-inspiration-and-protecting-your-identity-during-caregiving/). In this particularly trying time and the critical need to practice social distancing, I will take advantage of technology and post resources that caregivers can use at home to hopefully alleviate some of the tension. I’m very concerned about children who are also stuck at home, in some cases working their way through online learning while surrounded by caregiving and caregiving responsibilities, so I will post some resources for them, too. Selfishly, I also hope that this helps me, too.

I welcome your comments, questions and requests. I thank and respect all caregivers. Ben particularly loved Buzz Lightyear, so I think it’s appropriate to quote him here: “The important thing is that we stick together.”

I wish everyone peace, health and safety during this pandemic.

On International Women’s Day- Thoughts of My Mom, Grandma and all Caregivers

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Grandma and I around 1990

My Grandma’s birthday was on March 5. She’s often on my mind, but the end of February was the anniversary of her passing, and along with the other sad milestone dates in February, it’s just a melancholy time. The good thing has been the overlap with the Jewish holiday Purim, since she taught me to make my great-grandmother’s humentashen recipe, and I make them every year in her honor. Today is also International Women’s Day. Grandma would surely scoff at this kind of occasion, as she did with Mother’s Day. She would say that women should be honored every day. Still, as I baked my great-grandma’s recipe for cookies to bring to a friend this weekend, and have been distributing humentashen among my friends, I feel deeply connected to Grandma. She would be so delighted that my creations are so well received! Since we shared a creative flair, she would love the way I have come to decorate cookies.

Making humentashen is a tradition that started a long time ago!

The fact that today is International Women’s Day led me to think about the tremendous influence my grandma and my mom have had on my life. I realize that my grandma and my mom taught me to be a caregiver. They instilled in me a sense of loyalty and desire to help my loved ones, although I do think it is also in my nature. Of course, if you read this blog, you know that my dad also played an incredibly important role in my life. Since I was his caregiver, he was in many ways a beneficiary of all that he and these wonderful women taught me.

The truth is that I was a mommy’s girl, a daddy’s girl and a grandma’s girl. That has stayed with me. In more recent years, there have been some wonderful grandmas in Disney films, which always touches my heart. Julie Andrews as a grandma and a Queen in The Princess Diaries was a treat (and great casting, in my opinion) and I related so much to her relationship with Princess Amelia (played by Anne Hathaway). I watched The Princess Dairies and the sequel this weekend. While my grandma was not as sugar-coated as Julie Andrews, she had such an elegance. Most important was that she truly knew me, and although she had her own ideas of how she would have wanted my life to go (think princess meets prince, and Jewish) but she also knew that I danced to my own beat. I was one of a very small circle whom Grandma loved unconditionally.

Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

At one point in The Princess Diaries, Julie Andrews tells her granddaughter, “I have faith in you.” That conversation made me cry. That is the crux of my relationship with my grandmother. She had faith in me. Even though we did not always agree, and I struggled with feeling that I had two mothers when one was sufficient, I knew that Grandma had faith in me. She believed in me in a way that I still don’t believe in myself. I have lost the people closest to me who gave me that feeling. I miss it, even though, despite their faith, I have always lacked confidence. (as I’m typing I’m hearing in my head Julie singing “I Have Confidence” from The Sound of Music.

When Grandma was ill, although she had caregivers, I was the person she trusted. No matter what others did, my presence was the one she acknowledged. I learned the supreme value of the care in caregiving. Although I wish I did not need to call upon those skills to be the caregiver of my dad during his struggle with cancer, and Ben during his battle with ALS, I was grateful for the women who helped me to develop those skills. I watched my mom and Grandma take care of not only our immediate family, but also my great-aunts and great-uncles. My mom was the most selfless person I ever knew. Grandma commanded more attention, but she was fiercely loyal to her family and to ensuring that we were there for each other and for her. After she died, our family unraveled. I wish that my mom and Grandma had shown me more self-care skills because even now, six years after my dad died and almost five since Ben has been gone, I am not very adept at caring for and prioritizing myself. I have no regrets about what I did as a caregiver, and I am at my core someone who thrives on caring for others, but I do find myself probably unnecessarily overwhelmed at times because I get caught up in small tasks that are helpful to others and rewarding for me, but I feel lost as I think about my life strategy or plan. Still, I think that the good that they taught me outweighs the downsides.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

When Ben was losing his strength but persisting in his brave struggle to walk, he did sometimes fall. There were occasions when I would catch him just in time and he called me his Wonder Woman. He even got me a Wonder Woman t-shirt. Given how much of a klutz I am, it was kind of funny how proud I was of that shirt. I do believe that I learned about my inner strength when I had to care for my dad and Ben. But, the women in my life helped me to nurture those skills from the time I was a child. Caregiving let me discover and utilize them.

So, on this International Women’s Day, I honor and thank my mom and Grandma. I honor all caregivers, who are Wonder Women for exemplifying the powerful meaning of caregiving. And, I honor Julie Andrews, because she’s Mary Poppins, and that’s enough!

 

Happy Birthday, Ben, My Mickey! Thoughts On National Caregivers Day

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Today, February 21, is Ben’s birthday. This is another of the February milestone dates that I dread. It is the fifth birthday without him, and I can’t help but ask myself how many of his birthdays I am going to feel like this. The truth is that I have gotten used to the waves of sadness and loneliness. I didn’t know how I would feel today but I go with the flow of my emotions. I don’t convince myself that I have to be miserable, I don’t punish myself, and I don’t anticipate anything other than that I don’t know how I am going to feel and that I will be okay with whatever mood hits. The sadness and loneliness don’t paralyze me the way they did, but the bursts of tears remain.

I thought that I might run a few errands today, but I can’t seem to get myself off the sofa, preferring to wear Ben’s flannel Mickey Mouse pajamas (my cat Disney and I had matching ones) and immerse myself in Ben’s favorite Disney and Pixar films. I already watched Monsters, Inc. I cried when Boo said good-bye to Sully. I can’t help but relive saying good-bye to Ben. It will always be painful, especially on days like today. There is no distraction from tears  or from the pain. But Ben loved Sully, and when they met, Sully was compassionate and funny.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Sully, Monsters Inc

2012- Sully escorted Ben for his photograph!

Today also happens to be National Caregivers Day, which honors the health care professionals across the country providing long-term and hospice care. It always falls on the third Friday of February. I don’t remember being aware of this day when Ben was ill. I do remain grateful to and in contact with some of the professionals who cared for Ben. Although I was not a professional caregiver, I was a devoted one, and the memories of being Ben’s caregiver are among my most difficult and frustrating, while at the same time they are my most loving and significant. I am fortunate to have a wealth of good memories from our sixteen years together. I do tend to separate them into our pre-ALS and ALS days. Being a caregiver, for Ben and for my dad, brought out who I am at my core, and it also changed me, I hope for the better. I was able to find a stronger voice as an advocate for them, and I suppose now it’s time to use that voice for myself. I have a lot of work to do in that regard. I’m definitely better at caring for others and I prefer it.

I watched the video that I made on Ben’s birthday the first year I was without him, which I have placed here again. I miss Ben and I miss making a fuss on his birthday. When he was homebound, I decorated our apartment after I put him to bed so he would have a fun surprise in the morning. He knew I was decorating but never knew exactly what he would find, and that delighted him. When I look back, I think that making the video was my way of continuing to create a birthday celebration for him. There are photos of his birthdays and other happy occasions, and, of course, some Walt Disney World photos. Some were taken when he had ALS and some in the pre-ALS days. The love is palpable in all of the memories. I guess it will always be jarring but sweet to hear The Beatles’, “Happy Birthday.” Ben woke me up with that song every year on my birthday. Now, I am playing it for him. I do believe that he played it for me when I visited Walt Disney World and listened to the band he loved. When I watch the video now, I remember the grief that I felt as I poured through and selected the images. Still, I do find it comforting to revisit beautiful memories. That doesn’t mean that it doesn’t come with tears, but tears are okay. So are smiles. All of the memories, even through the darkest days of grief, play along with the video but I am reminded that I will be okay and Ben is still with me.

Ben’s birthday always falls during the week that the schools have a mid-winter break. I’m glad that I have the time without having to be “on” in the classroom. I have enjoyed having some time to organize my apartment. This meant going through some of Ben’s things, particularly computer and electronics related items. I threw out things that I had been keeping only because they were his. I brought several old laptops to be recycled. I talked aloud to Ben throughout the process. It’s taken all this time, but once I realized that they brought no particular joy or memories, and that even Ben had mindlessly tossed these things into boxes rather than throw them out, I was more able to part with them. Still, the mere action of having to go through his things without him was stressful. Maybe my timing was not great. As I said, I never know how things will feel so I just go with it.

I did pick up Ben’s favorite meal from our local store and will have that for dinner. I so often think of how Ben wanted to be able to eat the foods he loved, and how I always say that I hope that he is now eating, walking and singing, free of the constraints of ALS. For the first time, the idea struck me to have one of his favorite meals in his honor, with the knowledge in my heart that he can now enjoy that freedom. In my opinion, there is no “right” way to deal with events like this. If I had felt like I did not want to do anything special for Ben’s birthday, and just share a quiet thought of him, that would have been fine, too. I feel no compulsion to defend myself. That, in itself, feels like progress!

As I wrote last year, there is no candle on a cake now, but always wishes that Ben is comfortable and at peace. Also, wishes for a cure for ALS, because wishes do come true.  As Cinderella’s Fairy Godmother says, “even miracles take a little time.”

Wishing well at Walt Disney World
July 2014

 

When Ben proposed to me at Walt Disney World, he asked me to be His Minnie. So, on his birthday, I say
Happy Birthday, My Mickey!
With much love and pixie dust,

Your Minnie

Halloween 2012. Eeyore’s wearing a birthday hat!

 

Sleeping Beauty and Lessons in Caregiving From The Fairies

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Today marks the anniversary of the 1959 release of Walt Disney Productions’ Sleeping Beauty.

With the upcoming anniversary in mind, I watched the film last weekend. I have to admit that my favorite characters are the three fairies. In fact, after my cat Disney passed away and a new, small young cat and I adopted each other, I thought about naming her Merryweather, but it just didn’t flow off the tongue. Instead, I named her for another feisty fairy- Tinker Bell!

There is a scene when the fairies brainstorm ways to counteract the curse that Maleficent has placed on Princess Aurora. While Merryweather has the idea of turning Maleficent into “a fat old pop-toad,” Flora reminds her that their magic can only do good to bring joy and happiness.

Fauna believes that Maleficent probably isn’t very happy because she doesn’t know anything about love, or kindness or the joy of helping others. In the story, the three fairies decide to give up their magic and their identities and move to a secluded area in the forest to take care of Aurora until her eighteenth birthday, to keep her safe from Maleficent’s spell. Their entire lives turn upside down. They put Aurora’s needs before their own. That’s a scenario that is familiar to many caregivers. I watched this movie often while Ben’s ALS was progressing but I don’t think I saw the connection at that time. I think that I was too entrenched in the difficulties and what I thought I was doing wrong to see that the love and care in caregiving were always coming through and were nurturing Ben and me.

In my own story, when Ben was diagnosed with ALS, although he lived in denial about its progression, we went crisis to crisis and began shifting things in the apartment as necessary. I had to take many days off from work to help him or just to provide emotional support if he was having an anxiety attack. There were a couple of times that I thought my job was on the line until my principal helped me to arrange for family medical leave. I was tired and stressed, but that was not a priority. There was sometimes tension between Ben and me because I was having a difficult time juggling full-time work with full-time caregiving and Ben would not admit that it was difficult and that he needed more care than I alone could provide.

When the fairies were scrambling to make Aurora a beautiful birthday cake and dress without the use of magic, I thought of the many times that I would experiment with foods and the Vitamix, or help Ben to devise some kind of contraption to help with his lack of dexterity. The fairies wanted to surprise Aurora with a party, finding ways to get her out of the house so they could decorate. I thought of the many nights that I waited until after I had put Ben in bed to decorate the apartment for holidays or Ben’s birthday, so he would awaken to a surprise. I lacked the wand, but like any caregiver, I had to create a kind of magic to make life easier and entertaining. Only in retrospect can I see how it may have exhausted me, but it also fueled me.

We all have to deal with our Maleficents. These were the unreliable family members or even the completely unhelpful but judgmental health care professionals. Like Merryweather, I had some spirited fantasies, but they were more along the lines of banishing them from our kingdom! Alas, I, too, had to focus on the caregiving and vent to my friends the way Merryweather vented or fantasized aloud to Flora and Fauna.

Taken at Walt Disney World in 2002, the pre-ALS days.

As I look back at my caregiving days, I realize that although it was the most difficult work I ever did, it was the most important and loving work, too. The fairies were entrusted with Aurora’s life and they did whatever they had to do to protect and care for her. I was not as selfless as the fairies-  there were times that it made me angry and resentful to have to juggle so much, especially when Ben was not acknowledging that his ALS was progressing and I was losing my ability to “just keep swimming.” At the same time, I also would not have had it any other way. Ben knew that about me and I knew that about myself. Caregiving let me see that I found the most satisfaction and joy in showing love and kindness while helping Ben and my dad.  It wasn’t a matter of feeling happy all the time. In fact, I was not happy to Ben – and my dad- decline and to see our lives and future disappear. However, I felt purposeful and proud that I was the person they knew they could count on to always be there for them.  I realize now that I had the most true sense of myself when I was caring for and bringing joy to them. Although those days are behind me, I often reflect on them, and looking back through the lens of Flora, Fauna and Merryweather remind me of the valuable life and love lessons of caregiving.

Another favorite part of Sleeping Beauty is when Aurora tells her forest friends about the prince she sees in her dreams. She says, “If you dream a thing more than once, it’s sure to come true.” So, I will keep wishing and dreaming and feeling the pixie dust for cures for ALS and all awful illnesses, and for love and all good things. I hope you do, too, and I hope your wishes and dreams come true.

Thank you, Flora, Fauna and Merryweather, and Happy Anniversary, Sleeping Beauty.

Walt Disney World, July 2014

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