January 28, 2018

How Iago Has Helped Me Through Difficult Times in Caregiving and Grief

abby_admin ALS, Caregiver, Caregiving, Disney, Grief 2 Comments

ALS,Caregiving,Grief,Iago,Aladdin

The beginning of a new year should be a positive time of looking ahead, setting goals, and optimism. For me, I kind of dread January and February because of the anniversaries- my mom died in January, my dad’s birthday and death occurred two days apart in February, and Ben’s birthday was in February. All I can do is sigh. I guess the melancholy that looms conjures for me of the uglier and sadder caregiving memories, and strengthens the waves of grief.

Last year, I was thrown when Ben’s table collapsed during the holidays and I had to throw it out (click here to read about the things that mattered). I still miss that ugly table because it held so many beautiful memories of Ben. Then, I was unnerved when I added new ornaments from London to the tree because everything about the tree represented Ben and me. This year, I was prepared for the conflicting emotions as I decorated the tree. I still put the Ben’s favorite ornaments exactly where he liked them, so he could see them from his chair at his table.

When I plugged in the pre-lit tree I saw that the lights didn’t work in several places. Another heartbreak. Ben got that sparkly pink Christmas tree for me when having a real one became too complicated given our space. I admit that I get sentimentally attached to a lot of things, as evidenced by my home filled with mementos from loved ones and special times. Therefore, it is hard for me to part with things that Ben gave me, because represent parts of our relationship. I kept the tree up for the holiday season, feeling that the lack of brightness reflected my mood, and I procrastinated about taking it down. I knew that dismantling the tree meant throwing it away.

Yesterday was the day I had to take the tree out to the curb. As I looked at it, the sadness I felt was not just about letting go of the tree, but of how small and insignificant the tree looked on the tree. Nobody passing this discarded tree would know what that tree represented, how it brought joy during holidays that were not joyful. They would not know that it was the last tree Ben ever saw and how it was decorated according to his wishes and delights.

Although I now feel particularly vulnerable, and I was thrown by the loss of our silly, sparkly pink tree, I also realize that Aladdin’s Iago was right when he said, “You’ll be surprised the things you can live through.” That’s a good life lesson and an important reminder. Although losing the tree doesn’t come close to the tragic and frightening events that occurred as I watched my dad and Ben succumb to their illnesses, it conjured many of those bad memories. The tree was yet another symbolic loss that amplified that loneliness and makes me wonder when and if all of this will end. I do know that somehow, I keep going.

Throughout my life, I have generally thought of myself as a crybaby, very squeamish, and not physically or emotionally strong. I had a hard time comprehending why people told me that I was brave, when I was not the one facing death, though I have come to understand what was perceived as my bravery. I will always believe that caregiving was the most important and loving thing I have ever done, but it was also intensely difficult, devastating and exhausting. This is probably why I relate to Christopher Robin’s quote, “You are braver than you believe, stronger than you feel and smarter than you think.”

During caregiving for my dad and Ben and then, in grief, despite the times that I felt so close breaking down and so incapable of meeting the challenges, I must remind myself that lived through it. In fact, I did more than live through it because Ben and my dad knew that I did my best for them, advocating, caring for and loving them. And, although there are still unexpected triggers that cause me to stumble in grief, I know that Iago was right and I’ll continue to get through the waves of sadness and floundering. After all, I don’t want the worst times in my experiences to be what define me or the deeply loving relationships I had with these people whom I love and miss so much. It’s taken time, but I have come to realize that integral to getting through these times is my finding ways to honor my Ben and my mom and dad every day- even through my blogging- and keeping them in my hearts, letting them guide me as I reshape my life, embrace the present, and look to the future.

Our last family Christmas/Chanukah, 2014 with our sparkly pink tree. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)

Disney ornaments, one of our photo ornaments, one from Liberty and one from Harrod’s in London. There’s also a Schnauzer I got with Ben- I grew up with Schnauzers.

January 21, 2018

Pooh and Piglet, Ben and Abby, Best Friends, Best Memories

abby_admin ALS, Caregiver, Disney, Grief, Uncategorized 0 Comments

Walt Disney World, 2012

Yesterday, I received an email from a friend who was doing a crossword puzzle. He wanted to know who was Pooh’s 6-letter friend. I wrote back that it could be Piglet, Tigger or Eeyore, but Piglet was Pooh’s best friend. Sure enough, the correct response was Piglet. I didn’t expect the day to be filled with memories that were conjured by that simple email.

When Ben and I first started dating, we often walked to the flagship Disney Store on Fifth Avenue in Manhattan. It is no longer at that location. We wandered the 3 floors and I often left with little gifts- the courting phase of a relationship is fun, indeed!

Having spent increasing amounts of time with me, Ben was becoming fully immersed in the Disney mindset, and loving it, sometimes to his own amazement. One day, as we strolled through the store, Ben called me to look at a figurine, exclaiming, “Abby, look! It’s Piglet and his best friend, Pooh!” I stared at him, speechless, and then started to laugh. He shook his head, laughed, and said, “I was macho before I met you!” Truth be told, he was not so macho. He was a big teddy bear, and he could calm me down with his great hugs. He was also a big kid at heart, and he indulged my inner child, and that was us. He bought me that figurine as a surprise, and it will always be so special to me.

Piglet and his Best Friend Pooh!
A very special figurine with very sweet memories.

Because of that incident, Pooh and his friends had a particularly special place in our hearts. At Walt Disney World, we always ate at the Crystal Palace buffet, so we could see them. After Ben’s ALS had progressed a bit, I got him settled at our table and then got a plate of food for him. There was one time that Pooh came by our table when I was at the buffet. When I returned, Ben told me that I’d missed Pooh but that he told him that I was going to be disappointed that I missed him. Ben was concerned that Pooh might not have understood him, since his speech was impaired and the costume would make it even harder to hear him (Yes, we did know it was really an actor in a costume, but when we were at Walt Disney World, we completely dove into the fantasy) A few moments later, I looked up and Pooh was literally running towards our table. He pointed to Ben and then tapped his own forehead, letting me know that he remembered to come back (I speak fluent Disney). Pooh gave me a big hug and we posed for photos. Ben was absolutely thrilled. In fact, making that happen for me was monumental for Ben because, at this point, Ben needed a lot of assistance, and that was difficult for him on a lot of levels: It was not easy for him to be so vulnerable, he was self-conscious, he liked to take care of me and he felt like he could not do that anymore, and there was always a looming worry of what was going to happen next. In this moment, Ben was the hero- he brought Pooh to me! This remains a most treasured memory.

Walt Disney World, 2012

The memories are important. They are everywhere. People might find it odd that so much that I have and do is tied to Ben, and that I continue to regularly share these memories and talk about him. Am I dwelling in the past? Am I keeping myself in a relationship that is no longer here?

There are times when I find that I do want to retreat into the comfort of my memories with Ben. There is also a feeling that I want and need to keep Ben in people’s hearts. I still have a relationship with Ben, though, of course, it is changed. He now resides in my heart and guides me. The fact that we had a perfectly imperfect relationship makes me want to find love again and to create new special memories, though it is also hard to imagine.

Walt Disney World, 2002
The pre-ALS days.

Grief is predictably unpredictable, and I do measure my reactions to these kinds of occurrences. Am I doing better? Am I handling the grief differently? Better? It’s a day by day co-existence. Yesterday, I found that although the email from my friend made me stumble at first because I immediately thought about how much I miss Ben, I found myself smiling throughout the day as our sweet Pooh memories popped into my head. That was a good feeling. I know and am comforted that Ben is still with me, and that our time together- the good times and the ALS times- has helped to shape me. I struggle with the reminders that our time was cut short and there will be no new memories with Ben. I do feel like I am becoming more accepting of and comforted by knowing that he is with me in my heart, so he will be present in my future.

Walt Disney World, 2011

January 13, 2018

For my Mom

abby_admin Grief, Uncategorized Cinderella, Disney, grief, Memories 2 Comments

We were always Mickey Mouse fans!

Today, January 13, 2018, marks 26 years since my mom, Sandra, or Sandy, left this earth. There is not a day that I don’t think of her. I talk about her often, and so much so that some people do not realize she’s gone, or for how long she’s been gone. I don’t know if that is good, or “healthy,” but she is so much a part of me.

This is never a great day. To the people who say that I should not be so affected after 26 years, I say that we all handle things differently. Dates are important to me. I choose to take these anniversary dates to remember my loved ones. I don’t anticipate how I will feel, I don’t punish myself, I don’t feel obligated to act any particular way. But, every year on this day, I do tend to wake up with the vivid memory of how my dad called me and said he thought my mom had died and the ambulance was on the way. His follow-up call confirmed it.

This year, again, I did wake up to those memories of the phone calls from my dad telling me that my mom died. There were tears. However, today I chose to celebrate a special memory. My mom met me in London during a summer that I spent studying there. We went to the theater every night. One of the shows we saw was Stephen Sondheim’s “Follies.” We loved it. I saw that there was a screening today of National Theater Live’s performance of this show. It seemed like a perfect way to remember my mom.

The thoughts of losing and missing my mom did hover over the day. It didn’t help that I found this production particularly dark and depressing, even for Sondheim. But, I also thought of fun memories of our times together, in London and in general. Part of me can’t help but lament the time that we lost and that my mom never met Ben. But, I never lose sight of how lucky I was to have my mom. She was a truly selfless, beautiful and very adorable person and mom. In this clip, Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it and they must honor her. This scene touched my heart. I cherish my memories to keep my mom’s spirit alive and honor her. Of course, my love of Mickey Mouse and all things Disney always make me think of her, but I hope that in some small way I have followed her example. I do know that she is always with me.

In my mom’s memory, I’d like to share some details about my mom and some of the important ways in which she influenced me, even in my caregiving days. This is a reprint of the post I published last year on this day:

My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie. There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.

My mom and I were very close, or, as everyone said, attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her when we were out shopping. People laughed that we spoke on the phone many times every single day. We went to the theater and ballet together. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events. We had so much fun. Frankly, I could not imagine living after she died. I loved her and she loved me, unconditionally.

When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as my grandma, who lived with us, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times. She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.

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

I realize that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after my grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with my grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles. I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. For a change of pace, I often brought home treats from Zabars or other NYC places. My grandma did not want to be cheered, and I understood that. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. As in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.

As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much who I am and what I do reminds me of her. I get my Peter Pan-like inner child spirit from her. You won’t be surprised that Disney played an important part in our relationship, too. One of my favorite memories is when she called me from Walt Disney World exclaiming, “Abby, I met Mickey!” Another is watching and giggling through “The Little Mermaid,” especially because my grandma was straight-faced and completely baffled by our amusement.

I proudly say like mother, like daughter!

I am not ashamed to say that I still miss my mom terribly. It remains a wound that is easy to open. When watching movies, I often cry at the mere mention of mother daughter love or the passing of a mother, and Ben intuitively handed me tissues in these instances before he even saw tears. Of course, that made me laugh through my tears, and that was a good thing. Ben never knew my mom, but he knew how important she was to me and it touched my heart that he always marked in his calendar her birthday and this anniversary and he would plan something Disney-related, like our date to “Beauty and the Beast” (click here for that post).

I enjoyed the movie “Brave” and feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But the scene in this excerpt made me cry because it says it all. Even after 26 years, I just want her back. I have struggled, I have adjusted, and I have had to accept her death. Now, I take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I love you, Mommy.

January 6, 2018

Heartwarming Thoughts When I’m Feeling “Frozen”

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiving, Disney, Frozen, grief, Memories, Olaf 0 Comments

“Love is putting someone else’s needs before yours.”- Olaf, Frozen

How could I not think about Frozen on a day like today? It’s a wonderful film with romance, royalty, family strife, tested loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?! I’ve written before about what Olaf knew about love and melting (click here to read that post), but a day like today once again brings Olaf’s lessons to mind. The sweet and goofy snowman continues to sum up my caregiving experience at its core.

On this freezing cold day in New York City, amidst several freezing cold days here, I could not help but reflect on days spent trying to help Ben to keep warm. As I am writing this, I am sitting in Ben’s huge old sweat pants from Walt Disney World, along with his Mickey Mouse thermal shirt and Walt Disney World Christmas sweater. My apartment is unusually chilly- normally it feels like a sauna, so I’m happier like this. And,I like to wear Ben’s clothes. They feel cozy and like he is wrapping himself around me, and that warms my heart. Unfortunately, it was not easy to keep Ben warm.

Before ALS, Ben and I both liked the cold. Other than Walt Disney World, Vermont was our favorite getaway, especially in winter. Once ALS progressed, the cold posed challenges and problems for Ben. It was harder for him to move when he was cold. I think it may also have affected his respiratory comfort, though his significant decline in that area began in the warmer weather.

Our apartment is very drafty and Ben could not tolerate the cold. I bought big plastic insulation tarps and put them over our windows. They did help but it looked terrible and they came loose frequently, sometimes requiring middle of the night fixes. We did what we had to do. We became accustomed to living crisis to crisis in an apartment that was a disaster.

“Some people are worth melting for.”- Olaf

Most blankets felt heavy on Ben as his strength diminished, and piling on sweaters made movement even more difficult than it had already become due to the ALS. We found a couple of quilts that were the size of a throw, which made it easier for him to manage. We could not sleep under the same blanket because any tugging or shifting made him uncomfortable. A blanket may seem like a very minor accommodation, but it symbolized relationship changes that took an emotional toll. Suddenly, the life we enjoyed began to change and foretell a sad future, and the way we related to each other changed in very profound ways as we shifted from being husband and wife to patient and caregiver.

I am resourceful and a born shopper, so I was always delighted to find solutions, even if they were temporary. Ben was very skeptical of the little space heater that I brought home one day. I plugged it in as he said it wouldn’t help. It did! He loved that space heater!

I made a blanket of some of our favorite photos from Walt Disney World, and a microfiber towel as well. For the days that Ben did not get to his computer, or felt chilly, he was always surrounded by the photos that he loved so much.

Photo collage blanket.

Photo collage towel.

Dressing for cold weather, even within our apartment, also required creativity. Ben loved insulated puffer vests because they kept him warm without bulk and heaviness, and also gave him some freedom of motion in his arms. He liked sweatshirts that were zippered hoodies because they were easier to put on and to remove, even though he needed assistance to do so. He did find adaptive zipper pulls that he liked. These gave him some independence and that was important for his frame of mind.

Fleece sweaters were often a great option because they were lightweight. Waffle/thermal shirts were cozy for him and allowed for easy layering. He was amused by the camouflage shirts I found for him because they reminded us of how much my dad, the Marine, loved his camouflage! Even as the temperatures dropped, Ben still wore his favorite regular tshirts underneath his warmer clothes. He loved his tshirts. They keep me warm now in the tshirt quilt that I made from them.

A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

It was definitely a challenge for both of us to be comfortable in the same space. I was warm or Ben was cold, but Ben needed to be warm. Physically, the apartment was a mess, with supplies accumulating, space shrinking, and furniture moving according to his needs. At one point, my dresser had to be moved to accommodate his chair, and it blocked the closet. For several months, I either wore what was in the drawers or whatever my hand could reach in the closet. Now, I look back and laugh at the chaos that was our life. Then, we lived crisis to crisis, and despite our frequent ability to see the hilarity in the situations, it sometimes left us feeling helpless and hopeless.

Today, wearing Ben’s clothes and knowing how miserable he would be in the chill, I am feeling a little melancholy. It feels like a long time ago that these were my caregiving responsibilities, and it also feels like just yesterday. I miss him. I cannot deny the inconveniences and the emotional pain we both experienced. Ultimately, Ben’s needs unquestionably came first, and a little melting was a small price to pay. It’s taken me all this time to rebuild the snowlady that I am. I realize that I did find great satisfaction in being able to help Ben and I take pride in the love we shared and the trust he had in me. My heart is warmed to know that now he is free of the constraints of ALS.

Walt Disney World’s Hollywood Studios (July 2014)