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!

 

Grandma- Always in My Heart

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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

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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!

 

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

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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

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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.

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