Grief

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

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.

Grandma- Always in My Heart

If you’ve followed my recent posts, you know that February is a difficult month for me, with several anniversaries. My dad’s birthday was February 15 and day he died was February 13. Ben’s birthday was just two days ago. Disney died on February 7. And now, today, February 23, is the day my Grandma, Dora, died. Since her birthday is coming up, and things have been rough with these milestones, I want to respectfully acknowledge this date and my love for my grandmother, but I will wait until March 5, her birthday – at least a happier date – to share more about her.

I grew up in a house with Grandma. I was with her in that house when she succumbed to cancer. We were extremely close, knew the best and worst of each other and loved each other unconditionally.

Grief,Grandmother,Moana,Gramma Tala,Walt Disney Pictures

There’s nowhere you could go that I won’t be with you.Gramma Tala, Moana, Walt Disney Pictures 2016

Grandma is a part of so many memories, and of much of who I am, and for that I am grateful. Just as Gramma Tala told Moana, I know that my Grandma watches over me, proud of my baking and my love of fashion and delighted that I always talk about her importance in my life. Sometimes it makes me sad that all of the people I loved the most are carried in my heart instead of actually here, but I still feel fortunate to have known so much love and it’s a comfort to know that they are always with me.

I am thinking of you today, Grandma. You are always in my heart and I love you and miss you.

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

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!

 

Happy Birthday Daddy and Cinderella! Thank You For The Life Lessons!

Today, February 15, would be my dad’s 90th birthday. It’s a strange and melancholic kind of time, with the anniversary of his passing just two days ago and Valentine’s Day yesterday.  I did go to the theater today, which is always comforting to me, but the sadness loomed. Fortunately, my friend understood my need to talk about him and my awkwardness and mixed emotions. But, there are so many good memories on which I try to dwell during these down days. I was a Daddy’s girl and I was his life and his caregiver. My dad is always in my heart and thoughts, and at this time I would like to take the opportunity to put him front and center and share glimpses of his life. My dad never wanted to make a fuss over his birthday. But, I always did. And he deserved it. My dad taught me so much about life, integrity, generosity and loyalty, as well as the importance of a sense of humor and of being able to laugh at yourself. I strive to make him proud because I know he’s watching over me.

I realized as I was preparing this video, that my dad was not in so many pictures because he was always the one taking the photographs. The background music is From The Hall of Montezuma, the USMC hymn. He would love that. He loved dogs, the USMC and his family.

The camouflage coat was one of our funniest memories because he liked telling people that he wore it when he went outside and tried to hide among the greens from his mother-in-law, my grandmother. I wore my camouflage pants in his honor.

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

Who would have thought that my dad and Cinderella and I would have any connection? Well, they do. Cinderella and my dad share a birthday, since the movie Cinderella was released by Walt Disney Productions on this date in 1950, which makes my favorite princess 70 years old today! She has remained dear to my heart since childhood because there is more to Cinderella than what meets the eye. She appears simply sweet and naïve, but she had feistiness and determination, and also a loyalty to her father’s memory to which I can wholly relate. It was very hard for her to lose both of her parents, but she let their lessons and moral compass guide her. That’s something I completely understand.

Cinderella knew the importance of integrity and the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect! She knew at her core that, despite her stepmother and stepsisters treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort and I could stand alone and live happily with them in my heart. Now, as I work through grief, dreams help me to redefine myself and reshape my life. No one can tell me that dreams are not valuable and important.

Cinderella,Disney,ALS,Grief,Caregiving

Cinderella, 1950
Walt Disney Productions

Maybe you don’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be okay.

During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.

There is a song in Cinderella called, So This is Love.  Though the song is about romantic love, the title is significant. When we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.

At the heart of the film is the song A Dream is a Wish Your Heart Makes.

A dream is a wish your heart makes
When you’re fast asleep.
In dreams you will lose your heartaches.
Whatever you wish for, you keep.
Have faith in your dreams, and someday
Your rainbow will come smiling through.
No matter how your heart is grieving,
If you keep on believing,
The dreams that you wish will come true.

I’ve always been a dreamer who wished for the fairytale ending. Sometimes I think that it’s a matter of perspective. I do believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me and times like these past few days are quite sad and lonely. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Cinderella’s Fairy Godmother said, “Even miracles take a little time.”

My dad called me his Private Benjamin, but I was also his Cinderella, and I will always keep his spirit alive and let him guide me.

Happy Birthday, Daddy! I love and miss you!

Valentine’s Day Traditions Bring Tears and Healing

The last Valentine I made for Ben, in 2015.

I always loved Valentine’s Day. 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. Ben had his own collection, which I now revisit from time to time and on days like this. I see them as testaments to the love we all had for each other. But, I miss all of these people.

Now, Valentine’s Day is bittersweet but I still love the whole idea of Valentine’s Day. As I posted yesterday (click here for that post), my dad passed away the day before Valentine’s Day in 2014. I spent Valentine’s Day that year making his funeral arrangements. My dad’s birthday is the day after Valentine’s Day.

With Ben, our Valentine’s Day celebrations were often sweet and simple. He always knew that after I put him to bed, I would make a card and decorate the apartment, and he looked forward to his Valentine’s Day surprise. It added some whimsy to his homebound life.

I also remember the simple and sweet Valentine’s Days spent with Ben where we danced in the living room. Ben thought that he had to take me to a fancy restaurant, but he learned that I really preferred cozy celebrations at home. Dancing was an important part of our relationship and I miss that, too. I was unexpectedly reminded of those days today during class. I was showing my class the film Under The Same Moon. It’s a Spanish film which touches on vocabulary the students have learned as well as issues of immigration. It’s a beautiful little film and the students always love it. I forgot about a scene where two people dance and start to fall in love. It immediately took me back to my living room, where Ben and I always danced and I tried to learn how to dance a little bit of salsa. I thought about the song One Dance (click here to read about it) and how much it meant when Ben was in the hospital. I felt the tears coming and did not want to cry in class. At least the lights were off! I busied myself at my desk to avoid the scene- I’ve seen the film so many times I know many of the lines! Unfortunately, I was shaken for the rest of the day. I tried to cheer myself up by making my traditional rounds in class and the hallways with chocolate for my current and former students, as well as those I didn’t know and for my colleagues. Valentine’s Day is and should be a happy day of building community in the school and I love that. Still, I was emotional and on shaky ground. It’s those unanticipated jolts of grief that are the most unnerving.

Another Valentine’s Day tradition that I maintain is to visit my aunt Eleanor, who has Alzheimer’s Disease and is in a nursing home. She has declined to the point of being non-responsive and I was nervous about how the visit would go. When I arrived, she stared at me, but almost through me, without recognition or reaction. At a few points, she seemed to understand what I said, but she is nonverbal. She has no real quality of life anymore. It’s devastating to see. I sat quietly beside her for a while, placed the Valentine card with Tinker Bell’s picture and kissed her good bye. It broke my heart. I realize that I have been grieving the loss of our relationship for quite some time.

My aunt Eleanor with the only dog she ever loved, our Standard Schnauzer, Dulcie.

Despite the sadness of today, Valentine’s Day seems an appropriate day to spotlight with love these people whom I miss and treasured so much.

(L-R) Great-uncle Louie, Great-aunt “Tanta” Rosie, Great-Aunt Lillian, Grandma Dora, Great-Uncle Larry. Mid-1980s. I adored them all.

My mom and our Standard Schnauzer, Dulcie. Miss them both!

My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.

(L-R) Great-Uncle Davis, cousin Garry, who, at age 94, passed away just one month before Ben), and Great-Aunt “Tanta” Rosie.

ALS,Caregiving,Grief,Walt Disney World, Disney

My silly Ben with his buddy, Buzz.

Life has changed without all of these people, 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. I am also grateful to still be surrounded by much love. Crafts projects give me peace and inspiration, and I realized how important making Valentine cards was to me once I lost those closest to me. It was a way of showing and feeling so much love. For my older relatives, my cards were the only fun mail they received and I was the person of my generation who always reached out to them. I decided to continue to tap my inner child with my card-making tradition, giving them to special people in my life.

The holiday is different now, and, honestly, not as happy, but it does give me joy to show my love and appreciation for special people, in my craftsy way, and to share a special tradition that keeps Ben, my parents, grandma and great-aunts and great-uncles close. And, who knows? Cinderella’s Fairy Godmother said, “Even miracles take a little time,” so maybe a romantic Valentine’s Day will again happen for me.

I wish everyone a Happy Valentine’s Day filled with love and friendship, and a sprinkling of pixie dust!

Tinker Bell’s first Valentine card! Each card is a little different.