Caregiver

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

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.

Disney,ALS,grief,Christmas,Chanukah

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!)

ALS,grief,Disney,Christmas

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.

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

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.

Disney Store,Winnie the Pooh,Piglet

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

 

Heartwarming Thoughts When I’m Feeling “Frozen”

"Love is putting someone else's needs before yours," Olaf,Frozen,ALS

“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, Frozen,ALS

“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.

Caregiving,Grief,ALS,Memories

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,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)

New Year, New Directions?

ALS, Disney,Grief

Holiday Card 2015
A Loving Tribute to Ben

Aside from having a bad cold and cough during the holiday week, I found myself feeling glum. Ordinarily, I busy myself with taking a photo of Disney that I make into a holiday card and mail to friends and family. This year, I just couldn’t get into the spirit. I always loved making the holiday cards, but since Ben has been gone, making a holiday card has become an emotional and somewhat overwhelming endeavor. The first holidays came just a few months after Ben left, and, after much thought, I created a card that was a tribute to him, accompanied by the words to Auld Lang Syne, which is meaningful to me because it talks of remembering those we’ve loved and lost. Last year, I was torn about making a card, because I did not feel festive but felt that I should honor the tradition, and even send a message to others (and to myself) that I was starting to at least try to embrace life. In my mind, Ben had to be present in that card, so I chose the Disney song, “It’s a Small World,” which is my favorite song and a song and attraction at World Disney World that always made us happy. I included some of our favorite pictures from the attraction, all of which Ben took when he was well. It felt like he was helping to make the card. (click here to read last year’s New Year’s day post)

This year, I am still not sure if I felt like I should or if I genuinely wanted to keep the tradition of making the card, but I kept procrastinating. It’s the third holiday season without Ben and I didn’t feel like the card should specifically be a tribute to him. I suppose that a part of me thought that people would also find it strange, and maybe depressing, that I would continue to visibly include him in the card. On the other hand, I was heartsick at his not having a presence in the card.

Does grief keep finding new ways to shake up my efforts to forge ahead in life?

What I’ve realized is that grief gave me a sort of purpose- it was to share memories of Ben and keep him in everyone’s hearts, which I did when I made the other cards. I wholeheartedly believe that he is watching over me and I want him to know that I honor him in every step that I take. Making my first holiday card that was not a blatant, well thought out tribute to Ben and to us, from only Disney and me, made me feel alone and without purpose.  Of course, the memories are always there, and, as I put Disney’s pajamas on her for the picture, I remembered how Ben laughed and commiserated with Disney as the three of us posed for a photo in our matching pajamas.  I finally got a picture I liked and wrote a caption. But, this card came with confusion and conflicting emotions because it was not a card about Ben or us. It did not feel right, and yet it also felt appropriate.

Welcoming 2018

This experience brought to mind the lyrics from a beautiful song from Pocahontas II, called Where Do I Go From Here? (Written by Marty Panzer and Larry Grossman) 

But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?

My world has changed and so have I
I’ve learned to choose
And even learned to say goodbye

The path ahead’s so hard to see
It winds and bends but where it ends 
Depends on only me

In my heart I don’t feel part of so much I’ve known
Now it seems it’s time to start, 
A new life on my own

For so long, my purpose was taking care of Ben. It’s gone on to be sharing memories of him and of caregiving and grief, and that helps me sort through feelings and emotions while it offers insights and maybe, hopefully, comfort to other current and former caregivers. So, who am I without Ben and these experiences?

I have gotten back to life. I enjoy my time alone and with friends. I do surround myself with good memories, but I look forward, too. I even started online dating and, difficult as that is, I am trying to be optimistic that I will find love again. New Year’s Eve was never a big deal for Ben and me. We generally stayed in and I cooked a special meal, until he could not eat much anymore. Last year, I went to the movies and an early dinner with a friend, which was not joyous but also not sad. So why has this year gotten me down even more than the prior two years? I guess that trying to make a card with a simple festive greeting and without a message about Ben showed me that I have not yet come into my own.

Although I have taken steps towards a new life, it’s hard to face head on that although Ben is always in my heart, I am on my own with an identity independent of him, caregiving and grief. I have established routines and have become more accustomed to life without Ben, but I constantly think about and even talk to him. I’m doing things that I always loved to do, often seeing things through his eyes. I would never have thought that making a card would be such a glaring reminder that I am now doing things just as myself and not as part of the couple that was Ben and Abby. It’s not yet comfortable. I cannot anticipate waves of profound sadness and loneliness, so when they hit me they hit me hard. I have to let the tears fall as they will and I know that I will push through it.

I’m not sure where I go from here in life and love, though, in my Disney way, I am hopeful and optimistic. I hope that in this new year I continue to establish a balance between past, present and future. I read many things from those in grief who wonder where they should be in the grief process and if they are okay. I hope this helps those in grief see that grief is its own journey, experienced at our own paces, filled with memories, insights, reflections and learning that will ultimately propel us forward if and when we let them, when we are ready. It’s not easy, but I find comfort in knowing that Ben and the other loved ones I have lost are somehow guiding me.

I wish everyone a new year of love, laughter, peace, good memories and the creation of new ones, and, of course, good health.

 

Christmas Memories

I don’t actually know where this quote is found- if tv, film or books- but in typical Winnie the Pooh fashion, it is sweet and simple, yet profound, in sentiment. I never forget how lucky I am to have beautiful memories, but I do miss the togethery part.

Growing up Jewish, although I dreamed of white Christmases, aside from lovely visits to friends’ homes during the holidays, I did not have my own Christmas until I met Ben. He helped me choose my first real Christmas tree . We chose our ornaments together. He let me decorate the tree by myself because he said he’d never seen anyone get so excited about having and decorating a tree! When Ben was homebound, I had to pick our tree by myself. I admit that despite being very creative, I am not the most visual person. I thought it was a reasonable size. When the man delivered it and put it in the stand, Ben couldn’t stop laughing and just asked, “what did you do?” It was enormous! I called it the tree that almost ate our apartment. That said, it was gorgeous and it lasted very well. We just worked around it! After that, having a real tree became too difficult with all of Ben’s needs and medical supplies. He got me a sparkly pink and silver tree. Of course, I do have all of my Chanukah decorations, too. In my world, they go together beautifully. The lights on the tree are not faring well this year, which makes me sad, because I hate to let go of things that Ben gave me.

As Ben’s ALS progressed, I had to be more creative with his gifts. I loved seeing gifts under the tree, but I hated waiting for him to open them. He preferred opening his gifts on Christmas morning, but relented and let me give him a gift on Christmas Eve. Usually, what was supposed to be an exchange of one gift became an exchange of all gifts, with him reminding me that we would have nothing to open in the morning. The child in me didn’t care…until the morning!

I tried to find practical gifts with some humor, like a Batman apron so he didn’t have to be covered in napkins when he ate, or a baseball cap with an LED light on the brim to aid us on evening excursions with his scooter. There was one year that he was having many problems with his fingers involuntarily curling. I went to the Gap in search of fingerless gloves and ended up buying three different styles. They were hidden in the closet waiting to be wrapped. One evening, Ben was lamenting his cold hands and describing what he thought he needed. I finally got up, went and got one pair, and gave them to him, confessing that they were one of his gifts. He laughed and tried them on. That prompted another description. I sighed, went back to the closet and came out with a second pair. This made him laugh harder. After that trial and more discussion, I threw up my hands and got the final pair. None of them were completely perfect, but he did not like mittens, which would have been the easiest solution for fit but not for navigation of the scooter. That event became one of our jokes, and on my birthday that year he gave me a charm of mittens from Tiffany & Co. It never fails to make me smile.

Yes, Christmas is a remembery sort of holiday.

There was the year that Ben broke his foot right before Christmas. Because his mobility was already impaired, he was completely bedbound for recovery and he was devastated. It was understandable- this was a glimpse of what his life was going to be. That night, to cheer him up, instead of waiting for Christmas, I gave him the DVD set of “The Universe” that he wanted so badly. I thought he would like to watch them while he was in bed. Then, to further console him, I pulled out a Monsters, Inc. projectable (sort of a nightlight that projects onto the ceiling) so that he just had to look up and see Sully and Mike. There was a projectable of a haunted mansion in our room at Walt Disney World that Ben loved, so this was my way of recreating that. Finally, I pulled out the photo collage blanket, so he could cover himself in favorite pictures while he could not get to his computer to look at all of his pictures. Of course, by the time Christmas came, there were not as many gifts!

Togethery and remembery, indeed.

Before ALS, Ben and I were fortunate to spend a Christmas at Walt Disney World. It was my dream and Ben was always happy to go there. It was crazy but it was magnificent, colorful, festive to the hilt and simply magical.

Now, with the togethery gone and just the remembery, I do feel lonely.  It’s been three years and I never know if those pangs of profound sadness and aloneness should have subsided, but I don’t fight them. I let them run their course and just try to focus more on the good parts, like those I shared here. Of course, I am so grateful for the wonderful, whimsical memories. But, the remembery makes me miss the togethery even more, particularly because Christmas was only really Christmas when my family was Ben.

As I was writing this, I realized that Ben gave me a dream come true when he gave me Christmas and that is a forever gift between only us that, in his honor, even if it’s with tears, I must continue to celebrate. Further, being Ben’s caregiver was, in an almost inexplicable way, a gift because it allowed us to share a unique and deeply loving bond that, honestly, was not always easy to see at the time. With that thought, I made this video of special memories, mostly from our visit to Walt Disney World in the Christmas of 2007, before ALS came into our lives, and then some photos of Disney and our holiday decorations at home. The photo of us with Disney, all in our matching Mickey Mouse pajamas, was our last Christmas and I am thankful that it was a beautiful Christmas. The video is set to a lovely song, My Gift is You, which is a lesser known original Disney holiday song but is not found in a film. It is on one of my favorite compilation albums, Essential Disney Love Songs as well as on Disney’s Merry Little Christmas. Words and Music by Gary Powell. Performed by Craig Hella Johnson and Leslie Whiteley.
 

I found great truth in these lyrics:
I love a gift wrapped in red
A gift under the tree
When the snow falls lightly for you and for me
But what I like most and what most rings true
Is the way I feel knowing
That my gift is you

I wish everyone a happy and healthy Christmas.

Walt Disney World, ALS

Ben and I with Santa (We know him!) in 2007, pre-ALS