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What Pooh’s Friend Rabbit Knew About The Importance of Routines

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Pooh gets stuck in Rabbit’s home entrance, so Rabbit tries to work around the problem! From Walt Disney Production’s The Many Adventures of Winnie the Pooh (1977)

With Easter coming up, I guess bunnies are on my mind. Since I have been thinking about the importance of routines and rituals with regard to caregiving and grief, I am going to put the spotlight on Winnie the Pooh’s buddy, Rabbit. Rabbit is the friend who has to have everything just right, who gets flustered when anything goes wrong or things are not in their proper order. He saw himself as the caregiver of his friends Pooh, Eeyore, Tigger and Piglet. Chances are, as a caregiver, he would put excellent routines in place. He would organize schedules and supplies with impeccable care. He would also be sent into a tizzy at the slightest change in plans but would try to come up with a work-around. Crises might send him into an utter tailspin but Rabbit would be the one to try to solve a problem, possibly more to maintain the order he needs in his world than to show compassion. I think that he might make me nervous if he was my caregiver. And, as caregivers know, trust and compassion are key. What do you think?

Although chaos became my normal during my years of caregiving for my dad and Ben, routines were a great starting point. Since I was working while Ben was at home, we had several routines in place for his safety and ease of getting through the day. I arranged his food so that he could get to it easily. Rabbit would have been furious with my inability to keep things neat, but my priority was to accommodate all kinds of supplies and move things wherever they fit to make other things accessible for Ben. At one point, my dresser was against my closet door and I basically stuck my arm into the closet and grabbed whatever I could, hoping it would be a coordinated outfit. Rabbit would never approve. I tried to see the humor, but humor is not Rabbit’s strong suit. Every day, Ben sent me a text to let me know that he was awake and at his desk and I knew when to expect those texts so I did not worry. I texted when I left school and he let me know if he was okay and if he needed anything. Of course, we also texted throughout the day, and in the case of a problem. Texting became essential when he had trouble answering, holding and speaking on the phone. As each event of ALS struck, we came up with a plan to deal with it. After he died, I missed those routines, especially sending my daily, “I’m free!” text to let him know I’d left school. It’s those routines which seem so silly that became rituals and those are the ones that can still make me cry when I think about them.

Ben and I lived in an apartment building without a doorman, and when Ben had trouble getting to the buzzer, we had to make special arrangements if someone was to visit and I was not home. Ben was in a visiting doctors program through Mount Sinai Medical Center, and those appointments could be hard to schedule. When Ben did hire a private pay aide for a few hours each weekday, all visits had to be coordinated when she was there or when I got home from school. It was a finely choreographed day! However, even the best ballerina sometimes trips or falls on stage, and as most caregivers know, days can be very unpredictable. At least routines offered a structure and a jumping point.

Ben and I also did maintain our rituals whenever possible. We went to the opening weekend of Disney films until he could no longer get down the stairs to go outside. When we were fortunate to be able to return to Walt Disney World, we enjoyed the attractions that we loved, even though there were challenges. Ben really did not want ALS to stop him. On holidays, I decorated the apartment after I put Ben to bed, so that he would have a surprise waiting for him in the morning.

When I lost Ben, I lost my structure. There were no routines in place. I only had to tend to myself, and, frankly, that’s never been my favorite thing to do. I could spend an entire day sitting on the sofa thinking about what to do, and end up doing nothing, relieved that I could just go to bed but lamenting how unproductive I had been.

Work became an important routine because it did structure my day and get me out of my apartment. I worked at a stress-filled middle school, but it filled my hours and gave me purpose.  In what was suddenly my free time, I wrote a lot, in what has ultimately become this blog.  I started to do things that I missed, like socializing with my friends and going to the theater. But, theater did not offer the same escapism and diversion as it always had- I felt guilty about enjoying myself, I had too many memories of when I could not go to the theater and how difficult it was to enjoy myself when I was able to go out, and I had to accept that I would never again be able to do these things with Ben. I spent many weekends staring into space. I was hard-hit by Ben’s absence, just a year and a half after losing my dad, which was another loss of routine, and the people who had consumed my life and my heart. For the first year, I marked in my calendar every single Wednesday, the day Ben died, noting how many weeks had passed, and thinking about him even more than usual, setting aside time to reflect and remember.

Rituals have become a vital part of my being able to dive back into the world of the living. I have maintained some of Ben’s and my rituals and created new ones that honor our relationship. I continue to attend opening weekends of Disney films, as I did last weekend at A Wrinkle in Time. I go by myself because I cannot imagine being with anyone else and it is emotional for me. When I am by myself I can feel Ben with me. I know that some people think that’s strange. I have not yet returned to Walt Disney World. Although I had been there before I met Ben, it was a most special place for both of us and, after his ALS diagnosis, it was the one place where he transcended the disease and felt most free. Our favorite time of year to go was around my birthday, which coincided with the Halloween celebrations. I don’t know if I will ever be able to resume that tradition without Ben.

I have written about how I have made it a ritual to put Ben’s favorite Christmas tree ornaments on the part of the tree where he liked them so he could easily see them all day from his desk. It feels right. I continue to look over at his desk chair, which I have also kept despite its shabby condition, and I feel comforted to see his computer still in its place of honor. There are so many memories are there.  I have also written about how when Ben’s computer crashed, I hired someone to restore it so that I could keep playing his music playlists from his computer (click for post). One of the reasons that Ben’s computer and its music library is so important to me is because music was so essential to Ben’s being. When we first started dating, he often gave me lyrics to Beatles love songs. On my birthday and on our anniversary, left special videos and music clips for me to play. Now, on his birthday, I play for him the Beatles “Birthday.” It makes me cry but I look forward to what I have made a ritual and in my heart I know that wherever he is, he hears it. I’m ok with tears. Sometimes the emotions have to come out, and, with them, come beautiful memories.

One of Ben’s notes with instructions for his musical anniversary surprise for me. As you can see, he always knew that Disney took priority!

I also created a special music playlist called “Ben.” This playlist contains songs that were special to us for different reasons, both happy and sad. One song, “In My Life,” was his favorite Beatles song, and a song that was played for him by a kind and talented musician on the day he died. “It’s a Small World,” because we loved that attraction and he always teased me that it was my ringtone and ringback tone on my phone. “The House on Pooh Corner,” because Ben’s doctor, in an effort to provide some level of comfort and cheer on the day Ben separated from the vent, found the video and played it on his phone for us to watch, and that touched my heart. And, there are a few other important songs. It is my routine and ritual to listen to this playlist every single morning on my way to work. No matter what happens, Ben is with me as I start my day. It gives me a sense of comfort and security and it gets me moving despite how I’m feeling.

I guess rituals and routines are sometimes interchangeable for me. But, it gives me a sense of grounding to know that I will be watching Monsters Inc, Toy Story (1,2, and 3) and The Incredibles on Ben’s birthday or even the sad milestones of his going into the hospital and his passing. They are simple and sentimental ways of honoring the unique and special parts of our relationship.

I was never like Rabbit. I am a horrible housekeeper, and I could never keep things in great order, though I did keep our lives completely organized around Ben’s care and well-being. I like to think that Rabbit would have appreciated that I am, however, insistent upon my routines and rituals when it comes to honoring Ben and the things that were unique to our relationship. No matter where life takes me, these routines and rituals give me a sense of security in the present and the knowledge that I bring the love from the past along as I move forward.

ALS, Walt Disney World, Pooh, Rabbit,Caregiving

Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.

What “A Wrinkle In Time” Taught Me About Caregiving Warriors

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Last weekend, in keeping with the tradition that Ben and I had for seeing Disney films on their opening weekend, I saw A Wrinkle in Time. It is difficult for this Disney fanatic to admit that I was disappointed, but I was able to see beyond the film’s reliance on special effects to be touched by powerful messages that resonated with me. The film prompted me to go home and reread Madeleine L’Engle’s book on which the film is based, and together, the book and film have been a moving experience.

In Disney’s film, A Wrinkle in Time siblings Meg and Charles Wallace are on a quest to find their father, who has disappeared as a result of a scientific experiment to cross time and space to find other planets. They are led on this quest by the guiding spirits of Mrs. Whatsit, Mrs. Who and Mrs. Which. It is a fanciful story, but one that touches on love, hope, faith, and stretching your mind to see possibilities. Not surprisingly, I saw many parallels to the role of caregivers.

The spirits tell young Meg that they are in search of “warriors” who will “serve the good and light in the universe.” I could not help but think that this is a fitting description of caregivers. We are there to help our carees with their physical and emotional needs, to advocate for them, and to make life as positive as it can possibly be.  My support of Ben encompassed all that would enhance his quality of life and support his wishes. That’s what a caregiver does. It took me a long time to understand why people called me brave when they described my experience with Ben. But, as caregivers, indeed, we are brave. Although ordinarily fairly shy, I was a fierce warrior when it came to advocating for Ben. I could not see it at the time, but now, I look back at that experience with pride and love.

As fierce as I could be, and as joyful as my demeanor usually was, so that I could almost always make Ben laugh, Mrs. Which hit the nail on the head when she said, “The only thing faster than light is the darkness.” In A Wrinkle in Time, the “It” was the darkness, the negativity, the hate. For us, the “It” was ALS. As much as we wanted to be hopeful and I wanted to be a cheerleader, after any kind of scary incident, we would quickly fold under the darkness of ALS as it took away Ben’s ability to walk, to use his hands, to chew and swallow, to speak and to breathe. We had good, loving and silly moments, but each struggle and crisis cast the shadow of an inescapable darkness. We fought to keep those positive moments and attitudes, but it was a constant battle.

As Meg, Charles Wallace and their friend Calvin embark on the journey to find their father, Mrs. Witch cautions them that, “You’re going to be tested every step of the way. Have faith in who you are.” This is a caution for every caregiver. The tests never end. I was tested with every issue that arose along the way as Ben’s ALS progressed. As life got more difficult for Ben- and his tests were never-ending and impossible to fathom- it became more difficult for me, too. My physical strength was first tested when Ben began to fall. Lifting him was quite a challenge and did eventually sometimes require my emotional strength in insisting to Ben that I had to call 911 for assistance. Transferring Ben from his chair also tested my physical and emotional strength. I had to overcome my generally squeamish nature to tend to Ben’s daily living needs.  It was exhausting and devastating to see him struggle with the physical challenges and the way that they made him feel, to juggle a full-time job with full-time caregiving, to deal with the fact that he was going to die and to help him deal with that fact. Navigating these issues constantly tested our patience, as we experimented with accommodations, mishaps, disappointments and frustrations. Faith in each other, maybe even more than in ourselves, allowed us to find the strength within ourselves to pass all the other tests. At times, however, we kept Finding Nemo‘s Dory’s mindset to “Just keep swimming.”

Meg’s mom tells her, “My love is always there, even if you can’t see it.” Ben and I had to have that faith, and to be perfectly honest, it was not always easy. We lost patience with each other, hurt each other’s feelings, and went through phases of hopelessness and helplessness. We could see past our disconnects, impatience and frustrations because even when it was not apparent, the love we had for each other was always there without a doubt.

Meg was able to reunite with her dad and bring her back to Earth. Of course, I could not “wrinkle time” and bring Ben back to this dimension. I’ve written so many times that Ben is with me in my heart. I know without question that although he has gone, his love is always here. Even though it does not always compensate for his physical presence, I feel him in so many ways. This film let me realize and embrace the unexpected gifts that Ben left with me. Through this experience, I gained a certain confidence, and I believe that Ben was happy to see that because he never lost confidence in me. Now, I have begun to acknowledge the quiet warrior within myself who, despite a bumpy road, is forging a new path, guided by the spirits of Ben, as well as of my mom, dad and grandma.

The film A Wrinkle in Time did remind me of those beautiful and important messages that I hope will support, comfort and motivate other caregivers. However, my suggestion to you, which may be particularly helpful if you cannot get out to a movie theater, is to read the book while you wait for the film to become available on DVD/Blu-Ray/Digital.

What “The Fox and the Hound” Taught Me About Grief

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On the heels of January 13 being the anniversary of my mom leaving this earth, February was filled with anniversaries- my dad’s birthday and the day he died, Ben’s birthday, the date of my grandma’s death, and two and a half years since Ben died. I didn’t mark the 6-month date in a blog post, but I was keenly aware of it. March began with my Grandma’s birthday. All of these events made all the more resonant Widow Tweed’s words to Tod in The Fox and the Hound:  “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”

Each year, when I am hit with this block of dates, I relive all over again the losses and how they happened- the hospitals, the VA, the hospices, the crises, the goodbyes, the sadness and fear and even anger. I lament the many ways that life changed with each of these losses, and I think about how I have lost the family that was my bedrock. At a time when I have begun to feel more joy and comfort in memories, and I am gaining perspective on my relationships and my experience with grief, this block of time definitely feels like a setback.

I think back to when my mom died of a sudden massive heart attack, and it completely uprooted my world. My mom and I spoke many times each day, spent so much time together, and when she died I simply did not know how I would go on. For quite some time, every morning I awoke, sat on the sofa trying to decide how I would spend each day, until evening fell, and I could just get back into bed. When I did go outside, something would invariably remind me of my mom and I would break into tears. It was unbearable. Family events without my mom were traumatic. During that time, I was completing my Master’s Degree and I was hired to work with children in a hospital. I relished that time because I had to put my own grief aside for a few hours to focus on the needs of the children, which was rewarding and purposeful. Other than that, the only thing present for me was her absence.

With each subsequent loss, I went through a similar process, though, sadly, I knew more of what to expect.  With Ben, the levels of grief were particularly layered and they began during his battle with ALS- loss of the life as we knew it, shifts in our relationship, and, ultimately, supporting his decision to go off life support and preparing to be there for and with him as he left this world on his terms. Experience did not ease the pain of my losses by any means, but maybe it helped me to understand it and adjust more quickly to coexisting with the pain of grief.

Although I did question it when I heard it, I now believe that Cinderella’s Fairy Godmother was right that “Time passed and pain turned to memory” (live action Disney Cinderella, 2015. Click here for that post). I do remember those awful days of grief. At this time of year, in particular, but also at other times, anticipated or unexpected, I still get hit by waves of grief, sadness and missing everyone. But, I also have vivid, beautiful memories of these beloved people. I look at myself and know that they have all helped to shape the person I am today.  The memories are loving, and also truthful, and they have offered me a better understanding of myself and those relationships. They have led me to want to offer comfort and support to other caregivers and people in grief and to want to find and keep love in my life.

I’ve come to realize that although I said goodbye, our relationships did not end. Now, I carry our memories in my heart, where they will always be to guide and inspire me and to surround me with love. It is not the same as having them here, but it is a lot.

By the way, The Fox and the Hound is a truly touching story that I highly recommend. It has sweet messages about friendship, loyalty and acceptance.

A Birthday Tribute To Grandma

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Today would be my Grandma’s birthday. I was a mommy’s girl, a daddy’s girl and a grandma’s girl. That has stayed with me. You don’t see a lot of emphasis on grandma love in Disney films. Julie Andrews as a grandma and a Queen in The Princess Diaries was a treat, as well as outstanding casting, in my opinion.

How appropriate that last night, Disney Pixar’s Coco won an Oscar for best animated film. Coco was absolutely beautiful, but very emotional, given my own losses. For one thing, the character Coco is young Miguel’s great-grandma, who is delighted by her great-grandson, although her memory of him and of everyone, is fading. But, Coco is loved and respected, cared for by the whole family. My family lived with Grandma, too, and we all cared for her as she succumbed to cancer. I was happy to see Disney tackle the issues of respect for the elderly and memory loss in a sensitive, touching way. Although the film unnerved me and had me in tears at various points, Coco was a powerful, and, actually, a positive reminder that Ben, my mom and dad, my grandma and all of the other people I’ve loved so deeply but lost, are always with me in my heart. I was fortunate to be able to tell my dad, my grandma and Ben that I would never forget or stop loving them. Remembering them keeps them close to me always and, very significantly, it keeps their spirits alive. Click here to read more about Coco and its beautiful messages.

The song from the film, Remember Me, is also lovely and moving. I was so pleased that it was nominated for an Oscar.


Remember Me
Lyrics from Coco
Written by Kristen Anderson-Lopez and Robert Lopez
Performed by Miguel, featuring Natalia Lafourcade

Remember me
Though I have to say goodbye
Remember me
Don’t let it make you cry
For even if I’m far away I hold you in my heart
I sing a secret song to you each night we are apart

Remember me
Though I have to travel far
Remember me
Each time you hear a sad guitar
Know that I’m with you the only way that I can be
Until you’re in my arms again
Remember me

Given my own love for my grandmother, the love between Moana and her Gramma Tala in the film Moana also deeply touched my heart.

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

I grew up in a house with Grandma, in the same house that she raised my mom and her siblings. There were a lot of memories in that house, a lot of dreams, a lot of happiness, but also sadness. I grew up in that house but my mom and Grandma also died in that house. Grandma and I were very attentive to each other, always calling each other and spending many weekends together. When she was ill I helped with her caregiving, and although I was not her primary caregiver, I was the one she relied on for comfort. At the same time, she wanted to protect me from the fact that she was dying.

From the time I was a child, I was in awe of Grandma and her elegance. I loved her sense of fashion. She had a wonderful way of putting together colors and fabrics and styles. I still have some of her clothing and jewelry. In fact, some of the best shopping I ever did was in her closets and drawers. On a couple of occasions, I was stopped by saleswomen at boutiques because they remembered that before I made a purchase, I called my grandmother for her opinion on an outfit that I was considering. They said they’d never met anyone who called her grandmother. If they knew her, they would have, too. She really had great style. To this day, when I’m feeling lazy about dressing up or putting on make-up- it happens rarely, but it happens!- I hear her warning me that I never know who I am going to meet and I should always look my best. Clearly, she was hoping for a nice, Jewish Prince Charming. My fairytale was not quite exactly her idea of the “tale as old as time,” but Grandma always seemed to understand that I danced to my own beat. Sometimes we frustrated each other, particularly when I challenged her ideas of an ideal life.  But, we had a special bond and an unconditional love for each other. And, I know that she would have loved Ben.

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

Grandma had four brothers and a sister, my great-aunts and great-uncles, and I loved them all dearly. If you read my Valentine’s Day post, these are the wonderful people for whom I made cards when I was growing up. I accompanied my mom and Grandma to visit my great-grandmother at the nearby nursing home almost every day when I was quite young. As a child, it was a fun experience for me because, as I realized in retrospect, the people living there were so happy to see and interact with a child. I loved spending time with my great-aunts and great-uncles. Losing Grandma and my older relatives left a huge void in my life. However, through our loving relationships, I developed a lasting appreciation of and particular compassion for elderly people.

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

Grandma was very artistic and I inherited her abilities and passion for crafts. She crocheted many aphgans and sweaters, skirts, dresses and ponchos. I remember choosing wool colors with her and how each item had to represent the gift recipient, yet had to be timeless and classic. I can see my own shifting tastes as I look at my childhood aphgan in its pastel colors and then the gray, maroon and cream colors in my college aphgan. I remember waking up in the morning covered with the squares she made while I was asleep.  My dollhouse and dolls even got aphgans! I still have many things that she made. They hold such beautiful memories of time spent watching her and learning how to crochet. Eventually, she helped me to make an aphgan of my own. Ben used it often.

Some of Grandma’s aphgans. Far left was from my bedroom, the middle was for college and far right was another design she made for another room. When I woke up, I would often find little aphgans in my dollhouse! I’ve kept them, too.

The aphgan I made with help from Grandma.

Grandma was also a craftsy child, and I remembering discovering and being fascinated by a beautiful ribbon doll that she made when she was young. My mom had it restored and framed, and it hangs in my apartment, another reminder of the artistic sensibility that I share with Grandma. Grandma’s talents extended to the piano, and she inspired me to learn how to play. I never played as well as she did, but she helped and encouraged me to play, and I’ve kept some of the sheet music.

A ribbon doll that Grandma made as a child. I believe that these were popular crafts when she was young.

My mom, on the other hand, was not artistic. Grandma did my hair, helped me pick my clothes and taught me how to bake. I never saw Mommy approach the piano, though she did take guitar lessons with me for a very short time. But, as I’ve written previously, my mom and I shared a sense of whimsy and we were both children at heart. Grandma did not share that sensibility and it made for some amusing times. One of my funniest memories was watching “The Little Mermaid” with both of them, my mom and I giggling like little girls, and then laughing hard as we looked at Grandma, who was staring at the screen in disbelief that we could lose ourselves in the film. OK, so Grandma did not embrace the Disney magic, but she did have a healthy respect for Mickey and Minnie and was amused and enthusiastic when I called her from Walt Disney World to tell her that I’d gotten a Happy 35th Birthday hug from Mickey!

One of our traditions was to make humentashen, the triangular, fruit-filled cookies made during the Jewish holiday, Purim. When I was a child, she taught me my Bubbe’s (great-grandma’s) recipe, and we made the cookies every year. And every year, Grandma admonished my mom, who laughed as she struggled to make the triangle shape and never got it quite right. Family traditions! As Grandma got older, I did more of the work and she supervised. After she died, I continued the tradition, and I even taught Ben how to make them. He loved doing it, and got a kick out of knowing that he, a Puerto Rican, was better at making humentashen than my mom!  Every year, he would look up the date of Purim so he could tell me when we had to bake! And, just like Grandma did, we counted how many of each flavor I had. (Counting was a ritual she started as a joke because my dad used to sneak into the kitchen to take the matzah balls she made. ) As Ben’s ALS progressed, he made less and less, but he was always a part of the process, even as the official batter taster.  Grandma never knew Ben, but I believe that she watched over us and that she would have loved him. I kept and used her mixer until it finally broke, and I still use her huge wooden rolling pins. And, last year Purim fell in time for me to make the humentashen on Grandma’s birthday, but this year I made humentashen last week, on Ben’s birthday, which I’m sure would have pleased them both (Click here for Ben’s birthday post)

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

I

Ben and Grandma would be proud of this batch of humentashen.

As Gramma Tala said, there is nowhere I go where Grandma is not with me. So are my mom and dad and Ben. It’s not always enough, and the truth is that sometimes it’s not even close to being enough, but it helps me to know that everywhere I go, and in everything I do, I carry them in my heart and in the person I am. I hope that I make them proud.

Happy Birthday, Grandma. I love you and miss you

Abby

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. 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.

Grandma is a part of so many memories, and of much of who I am, and for that I am grateful. I know that she watched over me as I made humentashen on Ben’s birthday. She was with me yesterday, when I went to the Downton Abbey Exhibition, and I thought about how much she and I would have enjoyed being in the kitchen with Mrs. Patmore. I also thought of Grandma as I looked at the beautiful costumes. Grandma always had a fabulous sense of style and I got my love of fashion from her. I have many old photos of Grandma and my great-aunts and great-uncles from the Downton Abbey era.

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

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