Caregiver

Walt Disney: A Legacy of More than Animation (12.5.1901-12.15.1966)

Walt Disney, Walt Disney World

Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2018 marks 53 years since he left this earth. He’s been a part of my life for as long as I can remember. I have such vivid memories of my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. Mary Poppins was the first movie I ever saw in a theater. It just amazes me how Mickey and his friends touch the hearts of generation after generation. Now, I love to read about him and get a glimpse into his artistic vision and the building of his business enterprises. His belief in himself and commitment to his art are things that we can all learn from. I believe that Walt Disney’s words of wisdom and legacy will live on, as Buzz Lightyear would say, “to infinity and beyond.”

My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. As much as I love to be in NYC during the holiday season, I do have a sense of melancholy. So many of my more recent holiday memories have sadness. My dad was in the hospital and then a hospice during the holiday season of 2013 and the lights I saw were from the windows of a car that took me home from visiting him or the train to and from Long Island. When Ben was ill we couldn’t go together to see the holiday displays and I rarely had the time to go on my own. When I did have a little time, I either felt guilty or couldn’t really enjoy anything. It took a couple of years before I could bring myself to visit the tree at Rockefeller Center and look at the beautiful store displays.  I guess these memories loom, although just today I went to Rockefeller Center to admire the tree and other holiday treats.

Today seems a perfect day to honor Walt’s memory by reflecting on some of his words of wisdom.  They help me to look to the future with optimism, and I think that’s especially significant as we approach a new year. Also, they make me think about the concept of a legacy. My parents left me with a legacy of kindness, loyalty and compassion and always having a sense of humor and whimsy. I hope that I will always honor them and leave a similar legacy.

“That’s the real trouble with the world. Too many people grow up. They forget.”

ALS, Walt Disney World, Lilo and Stitch

The very first time we met Stitch, October 2006!

As someone who still has a lot of my childhood dolls and can’t resist adding new ones to my collection, it is obvious to everyone who knows me that I completely embrace the idea that you need to hold on to your inner child.  As I’ve said, my inner child is very much at the forefront of who I am. For me, watching a Disney film, and imagining a fairy or fairy godmother at my side, also allowed me to escape the realities of caregiving and loss. Ben always said that he loved Walt Disney World because you simply forgot your problems. With a diagnosis of ALS, his problems were huge, but immersed in that fantasy land, he was a big kid having a wonderful time, even despite his challenges. For him to be able to feel that sense of joy and excitement was a gift. Walt Disney envisioned and provided that magical setting. I never want to lose the attitude that allows me to step right into the fantasy the way I did with Ben. I never want to stop wishing on stars or forget the wonder and delight that I had as a child.

“Why worry? If you’ve done the very best you can, worrying won’t make it any better.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt was right. I can’t say that any of my worrying helped, although perhaps thinking through worst case scenarios may have helped me prepare for a variety of situations. I’ve heard that worrying burns calories, but I’ve seen no indication that this works! I worry now about my future, particularly without much family. I worry that I will never find love again and I will be alone. But, the worrying isn’t going to affect any change, so it’s time to proceed in the best way I can, and make decisions I feel will help me to create a new life, or, rather, enhance my current one with new love, laughter, joy and peace.  I’m going to try harder to listen to Walt on this piece of advice!

“Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Epcot

2010- First use of the scooter to go to Epcot.

There is more light in my life now, and less guilt about feeling happiness, and I know that the people who love and care for me are glad to see me enjoying life again. But there are also the shadows, and I am not someone who likes to, or can, put on a show of emotions. The good and bad moments are all okay. They make me human.

“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, it helps me to stay positive if I escape for a while into a Disney frame of mind.

“In bad times and in good, I have never lost my sense of zest for life.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This quote made me think of Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. It was certainly a good lesson for me.

“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”

Ben would not be at all surprised that this Eeyore came home with me.

This quote is my inspiration for the future. It’s allowed me to reach out to people, to travel to new places and make dreams come true- I even returned to Walt Disney World, paying tribute to Ben but also creating new memories with dear friends. Throughout these experiences, I did miss Ben. I also struggle with feeling lost and lonely. At the same time, I believe that my curiosity, desire to learn, love and compassion will keep carrying me forward to find new and more love, laughter, peace and joy. I feel cautiously optimistic about the exploration.

“All our dreams can come true, if we have the courage to pursue them.”

My buddy is Cruz. Summer 2019- finding happiness! Meeting otters- I made a dream come true!

I think that I finally have the strength to summon the courage to follow my dreams. It feels pretty great, and yet a bit scary, to say that. I do believe that pixie dust would help.

“Laughter is timeless, imagination has no age, dreams are forever.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter. Here, he was laughing at me when I met Tinker Bell.

This is one of my very favorite quotes. Laughter, imagination, dreams and, of course, love, were the key ingredients in surviving years of caregiving and loss. They have always been there when I needed them, even if, at times, they felt out of reach. This is something to remember always. Never lose hope. Never lose the spark of a dream.

“First, think. Second, believe. Third, dream. And finally, dare.”

ALS,Caregiver,Caregiving,Disney,Dumbo

Here I go!

That sounds like a good plan! I’m hitting bumps in the road and struggling with confidence, but I’m working on it. Thank you, Walt

 

Gratitude: A Super Power at Thanksgiving, but also In Caregiving, Grief and Always!

Today is Thanksgiving. Of course, I always take comfort in Disney, so I try to heed the advice of Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” I have really tried to embrace that attitude and, for the most part, it helps me.

Thanksgiving has become a bittersweet event for me. It is a holiday that reinforces that I’ve lost the family to which I was so close. Last night, as I walked on Broadway and reveled in the tree stands filling with trees and the wonderful fragrance on the streets, I felt a mix of excitement and sadness. Ben and I loved this time of year and we always picked a tree from one of the stands near our apartment. Though I’ve learned to coexist with a constant feeling of missing Ben, last night I couldn’t fight the tears. I came home and talked out loud to him about how much I miss him and how hard it is at this time of year.

I’m not someone who attaches a lot of sentiment to food other than baking cookies and humentashen that my grandma taught me to make using my great-grandma’s recipe, but I realize that now, foods actually carry a lot of memories for me. I have flashbacks of my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I’d been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. Last week, seeing the turkey gravy display at Trader Joe’s was an unnerving reminder of the laughter and tears of my making all sorts of combinations of foods for Ben in the Vitamix as eating became increasingly difficult for him. I always had many boxes of Trader Joe’s turkey gravy because Ben liked it mixed with chicken and mashed potatoes, and I mixed it with all kinds of things to create a puree that he liked, including, if you can believe it, teriyaki chicken! Although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to feel gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there, be present in the moment and have hope for the future. Now, at these more challenging times, reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

My dad and I

When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. I do validate the need to have a pity party from time to time, but said that once you begin to think of those little things for which you’re thankful, you may very well find that there are many of them.

Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!

  • At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, and I don’t think I was always good at it, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. I treasure the knowledge that they loved me.
  • I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion and encouragement, while I was caregiving and then, in grief. Their spirit extended to Ben as well. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben is in their hearts. To be able to return to Walt Disney World a couple of months ago with Monica and her daughters (click here for that post) and pay tribute to Ben and my sweet Disney, while creating new memories with most special friends was an unforgettable and heartwarming experience and celebration of friendship.

  • It is always hard to lose a pet because they are family, and it was particularly hard for me to lose Disney. She was there for me in good and bad times and she was there for Ben, too. Disney was my closest remaining connection to Ben, since she was home with him every day and she witnessed his ALS progression. I became her caregiver, as she had many medical issues, but she brought so much to my life and it was my privilege to take care of her.

    Brave Disney during her hospital stay.

Now, I am grateful for my cat, Tinker Bell. She is young- not yet three years old- and has kitten energy that I have never experienced, and which keeps me on my toes, and makes me laugh and smile. Disney and my previous cat, Tiffany, were senior cats when they came into my life. Tinker Bell has helped me through my sadness over losing Disney. She has a lot to say, loves to be next to me at all times and she listens to all of my stories about Disney. She reminds me that there will always be good things to welcome into my life.

On Disney’s “Gotcha Day,” February 18, 2019 at NYC’s Meow Parlour

  • I’m grateful for my love of animals, as they are often more intuitive, honest and more humane than humans. And, they completely delight me! Discovering the Georgia Aquarium has brought so much joy to me as I have reshaped my life. After losing Ben, it was hard to find my own way and to feel like I was trying to find ways to enjoy our favorite things without him. Planning my first trip to the Georgia Aquarium to meet otters, dolphins and penguins was fun and yet awkward, but I realized that being close to the animals and doing the encounter programs has been a most wonderful opportunity, not only to greet, touch and feed them, but to have discovered a joy that is all mine, though I know that Ben is with me because we did love aquariums. I went back last summer, which was otterly amazing (click here to read about it) and I plan to return this summer, too.

My buddy is Cruz. Summer 2019- finding happiness!

  • I am grateful to be teaching in a wonderful public high school. Not only is it a healthier environment than my prior school, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. Those memories certainly follow me, but it’s good to see that I can move beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. My stories sometimes help my students share their own stories, and we build a strong sense of community and compassion.
  • As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core. I still have not quite figured out how to use my certificate as a caregiving consultant. However, I have enjoyed doing volunteer work and I am grateful to have met some terrific people who, tragically, are experiencing, ALS as patients or caregivers. This year, I began a club in my school that I intended for students who are caregivers for ill family members or even just for siblings. It is shaping up to be a club of caring, and somewhat shy, kids who need to find themselves and are interested in volunteering. So, in a sense, I am their caregiver! In all of these situations, sharing our experiences is emotional and powerful.
  • I am grateful to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words and I am thankful to have connected with many people.
  • I’m grateful to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with old and new friends. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.
  • I’m certainly not grateful to have had a romance cut short by ALS and to have to try to date and look for love again. However, I’m grateful to have met some nice people who give me hope that someone may very well be out there for me! And, it’s nice to feel the excitement of a little crush or at least the possibility of romance from time to time!
  • I am grateful to Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy and opportunities to reflect and sort through my feelings. I’m grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases. I’m grateful for my sense of whimsy and belief that if you wish and dream enough, your wish will come true. It lets me know that I will have even more to be grateful for next year!

Wishing well at Walt Disney World
July 2014

At this time of year in particular, I think about Pollyana, her wonderful world view and the “Glad Game” in the 1960 Walt Disney Productions film of the same name, and based on the novel by Eleanor Porter. (click to read my original post about that). This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every bad situation around and think about something you’re glad about regarding that situation. As time has passed, I’ve learned that being “in a state of gratitude” is not to naively play the Glad Game. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. That said, I don’t like when people tell me that things happen for a reason with regard to my Dad and Ben and their experiences- there is no reason for those kinds of illnesses. The lessons could have been learned without that kind of suffering and loss.

Film clip: Pollyana, 1960, Copyright © Walt Disney Productions  For those of you who remember the TV series Bewitched, the woman in this clip, Agnes Moorehead, was Endora!

There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad proud. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay because I have the super power of gratitude that gives me a positive perspective.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. Please feel free to use the comment space to share your own expressions of gratitude. You will likely find it comforting and encouraging.

Happy Thanksgiving.

With all good wishes,

Abby

 

Happy 52nd Anniversary to The Jungle Book- With Thanks for It’s Lessons on Caregiving and Fighting the Shere Khans

Disney’s Animal Kingdom- 2001, pre-ALS. Ben was psyched to meet Baloo!

Today marks the 52nd anniversary of Disney’s The Jungle Book. I love this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. I even enjoyed the live action remake. I am moved by the sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! When I watch the film, I cannot help but reflect upon how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.

Bagheera has all the qualities of a good caregiver: patience, the ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and he and Mowgli have a deep friendship and love, but Baloo also needs the guidance of Bagheera. When Baloo resists the reality that Mowgli needs to return to the “man village” and be around people like himself, Bagheera needs to remind Baloo that although he loves his little buddy and thinks of him as a son, he has to see the big picture in caring for Mowgli and that he has to think about what was best for Mowgli and not just for himself. Those are tough choices and I remember them well. Caring for Ben meant never losing sight of what our priorities were. Like Baloo, there were many times when I felt Ben deserved to indulge in any of his whims because I did not know how long he would have that luxury. And, we knew that time was not on his side. Taking him to Walt Disney World for one last visit was a very joyful indulgence. There were also the gut wrenching realities. I remember that after Ben repeatedly said that he wanted to go home from the hospital, I just wanted to honor his wishes and I asked his doctor if it would be possible to bring him home. His doctor, who proved to be my Bagheera, provided the wisdom and the reasoning, and then I had to have those heartbreaking conversations with Ben. There were stressful times when, just like Baloo and Mowgli, we argued and sulked. But, the caring in caregiving never went away and neither did the love.

I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to the hospital’s hospice unit and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy and needing 24/7 nursing care. This was not an option we liked but it was one we had to accept.

I could also relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways that have still left scars, but love and devotion kept me at his side and I have no regrets about that. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.

I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! Still, Baloo was protective of Mowgli and he has a good message. As caregivers, we don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” However, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. These are the things that let you remember who you were before you were in a caregiving relationship.

As for me, I think I was a combination of Bagheera and Baloo- a dedicated, thoughtful caregiver, acquiring skills and perspective during on the job training, with a sense of humor and incredible klutziness. Importantly, Ben always felt safe and secure with me. How about you? What do you consider the important skills of caregiving? Are you more Bagheera or Baloo?

 

Grief And The Things That Turn Me “Inside Out”

Sometimes, the hardest times are the ones when I remember the joy at the same time that I feel the sharp devastation and anger about loss. These are the times that turn me Inside Out. That’s what I have been experiencing this weekend. It’s exhausting.

Tomorrow will mark four years since Ben left this world. It’s almost as if I gear up all summer for this day. For the most part, I am proud, relieved and joyful that this has been a very good summer. In fact, it’s been the best I have had since he left. I was better able to balance being myself- my new self- with keeping Ben in my heart wherever I went. I know and accept that I can’t keep sadness in a corner, as Joy tried to do. The sadness and the joy were all part of our relationship, so they have to remain in my memory to keep them real.

I’ve noted it before, but there are triggers of setbacks. I don’t usually get angry at myself for crying. Anyone who knows me knows that I often default to crying. In Inside Out, Sadness says “Crying helps me slow down and obsess over the weight of life’s problems.”

This has been a weekend of tears and of letting myself feel the weight of grief, loneliness, alone-ness, anger, frustration, compassion and empathy. I spend a lot of time assessing myself and how well I am navigating my life. Maybe I need this time to slow down and let myself miss Ben and lament what our life could have been and what ALS took from us and is continuing to take from so many other individuals and families.

On Friday, I traveled up to the Berkshires to spend the day wandering around the town of Stockbridge prior to volunteer work on Saturday. I arranged to stay at the luxurious Red Lion Inn. It had been many years since I sat on the famous porch enjoying a glass of wine and I looked forward to being there. I entered my room and immediately thought of how Ben would have loved it. We loved to go to the quaint towns of Vermont, and the Inn and this room were reminiscent of our visits there. As I walked through the little library that led to the elevator, I thought of how Ben would have looked at the wall of books and commented that I would love a room like that, and I would have to agree. I took pictures as I know he would have done. In my room and throughout the building there are many beautiful antique desks. My aunt Ellie loved those desks, and she was the first person to take me to the Berkshires, so thoughts of her were also in my mind. She is the remaining relative to whom I was the closest, but with her Alzheimers disease, although I believe that I remain somewhere in her mind, in most ways, the aunt I knew and loved is gone.

The first shop I visited was Williams & Sons Country Store. Ben and I loved to go to country stores. I love the look and feel of them. We always found fun things at the Vermont Country Store, where we spent hours! It didn’t feel the same being without Ben. Nothing does, of course, but traveling to a place so much like places we would travel to felt so very sad. I wanted him to see the retro Cracker Jacks boxes, wanted to buy them just because he would have loved them. I did buy a little tiny turtle with a bobbing head. It reminded me of him and I knew he would have loved it, too.

I continued my stroll and spoke to lovely shopkeepers. I treated myself to some new clothing and fun jewelry. Retail therapy is always helpful to me, but I could not really shake that feeling of not belonging. I did have a glass of wine on the porch, but I felt like the only person by myself. I don’t always feel that way. Throughout my life I have traveled by myself, so I am often comfortable on my own. I think it was especially hard because Ben would have enjoyed it so much and it would have been a perfect getaway for us.

I was happy to meet Norman, the feline ambassador of the Red Lion Inn. He was very tolerant of my need to follow and pet him. I could hear Ben reminding me that I was like Boo in Monsters, Inc., who was always following Sully calling, “Kitty, kitty!” There was not a thing I did that didn’t make me think of and miss Ben. I think my last straw with myself was going to the pub where there was live music. I thought I would enjoy it, but it was something I really couldn’t do without Ben, so I left quickly. I found Norman, said goodnight, and went to my room to prepare for my volunteer work. This was filled with more reminders of Ben, since I was working with Hope Loves Company, a wonderful organization that serves children who have a family member with ALS.

Hope Loves Company runs 3-day camps in various locations across the country for families whose lives are affected by ALS. It’s a special opportunity for the whole family to get away and participate in an array of fun activities including boating, swimming, sports and crafts. Since all of the campers have ALS in common, they share an understanding of the experience that need not even be spoken. It’s a beautiful thing. During the spring, I had volunteered to do a scrapbooking workshop in New Jersey, and found it so rewarding that I asked to repeat the workshops at the camp in Camp Emerson in Hinsdale, MA. I am grateful that Hope Loves Company embraces my desire to volunteer and welcomed the idea of a scrapbooking project. Scrapbooking is a valuable tool for the children. Some bring photos from home and we also print out photos taken during camp. It is a way to capture and share memories. Older children can write more of a narrative if they wish. I went a little crazy shopping for all kinds of stickers, and it’s fun to see the kids select their favorites. It’s great to watch them interact with their parents as they look at photos together. I brought supplies for embossing, which lured even the coolest older kids. They had fun, were intrigued, and continued to bond with each other, which is such an important aspect of the camp. Maybe scrapbooking will be something that they will pursue. Maybe they will think about the activity as they look for another outlet for their self-expression.

Some of the scrapbooking stickers. Hope Loves Company camp at Camp Emerson, Hinsdale, MA

I enjoy meeting the families at the camp. For some, I suppose I am the sad reminder that, at least for now, ALS always wins the battle. But, I hope that they also see that I am here, I reshaped my life and I want to be supportive and do something positive to help in the battle against this disease.

The bus ride back to New York gave me five long hours to think about how much my life changed as a result of ALS. It certainly altered the course of my relationship with Ben. Although I had already been my dad’s caregiver, being Ben’s caregiver was a different experience. I don’t want to wash my hands of ALS. I want to support people who are impacted by the disease. It gave me joy to know that people in the Berkshires who recognized me from the NJ camp valued that I traveled to be with them and do a project with the children. Caregivers need to feel that kind of love and caring. For me, volunteering is a way to channel the negative experience into positive, into a way to help others. It’s something that I want to do with my life. I am thrilled that my blog helps others, but I want to expand that to more hands-on experiences, and the workshops allow me to do that. I guess that although the timing was difficult, and it turned me Inside Out, the volunteer work being on this particular weekend is a perfect tribute to tomorrow’s anniversary of Ben’s departure. I find comfort in knowing and affirming that our life, our relationship and our experience with ALS will be a part of my life and goals as I move forward.

These are excerpts from my own scrapbook, which I show to the kids so they can see my own experience with ALS and some ideas for scrapbooking.

             

A favorite page- Ben’s proposal at Walt Disney World!

Ohana Means Family- Who is Yours?

At this time of year, when I think about the upcoming anniversary of the day that Ben left this world, the notion of family comes strongly into focus and reminds me of how my definition of family has changed over the years. Although I love the film, Lilo and Stitch and its messages about family, love, acceptance and grief, I used to be troubled by its very famous quote, “Ohana means family. Family means nobody gets left behind-or forgotten.” Unfortunately, to a large degree, this has not been my experience and that makes me sad. For various reasons, and sometimes on the grounds of religion, there has been conflict in my family, and caregiving for my grandmother magnified our issues after my mom died. I learned the difficult lesson that, with rare exception, aside from my dad, I could not depend on the love of my family to provide the support that was needed. When I lost my dad, I lost the sense of family that I always thought of as my anchor. Family frequently let Ben down, too, and usually, it was not something that I could prevent, though I could support him through it. I was someone who always said that family was important- it was also what I was taught- but I didn’t feel the unbreakable bonds that I believed should exist. In addition to grief over the loss of my dad and Ben, I was grieving an overarching sense of family. As with all grief, I learned to co-exist with it despite reminders that still do make me feel sad and alone. However, reflection has lead to new perspective, and the Pollyanna in me has enabled me to expand my view of Ohana. (Click here for Pollyanna’s instructions on how to play The Glad Game.)

Ben and I were Ohana, with or without a marriage certificate. When Ben was diagnosed with ALS, we were not legally married but, of course, there was no question that I would be his caregiver. I had friends and relatives who told me to leave him because we were not married, which was absurd to me, because I loved him and Ohana means nobody gets left behind. His family members were certainly upset by his diagnosis, and there were many promises made of visiting and helping him. For the most part, those promises did not materialize into actual visits or even regular expressions of concern about how he was doing. He reached out to people and then they usually responded, with what became to him empty proclamations of love and caring, but they rarely took the initiative to reach out to him. It hurt him and frankly, angered and shocked me. Ben witnessed my devotion to my dad–he listened to our countless daily phone calls, watched me cook and shop for him, visit him on weekends, accompany him to his doctor visits, make follow-up calls to doctors and companies treating his cancer, just as I did for Ben. That was not happening for Ben with his family, with rare exception. There was, however, a lot of drama that was unnecessary, ridiculous, and selfish.

I am grateful that while Ben was in the hospital, one of his daughters frequently visited him. She was also with him at the end. She and I had a lot of time to talk in those weeks. We were close for a time, but that seems to have disintegrated, which is, for me, yet another disappointment in the experience of family and not really unexpected. I try to focus on the few nice surprises that occurred along the way, in the form of the few family members that expressed genuine caring and concern. We shared a love of Ben and respect for each other that continues today.

I found in caregiving that the people who are least involved have the most opinions and make the most judgments. I will admit that it was, at times, difficult to put aside the drama and just focus on Ben’s needs. Family came to the hospital and talked to him about his going home, getting his hopes up without asking any questions or having realistic information, but with plenty of judgment, especially of me. A friend of his visited and tried to dissuade him from separating from the vent on religious grounds after giving me a hard time about the issue. While visits can be a good time for a caregiver to take a break, I could not leave people alone with him because communication itself was challenging and discussions were often inappropriate and inaccurate. Mostly, they were not much of a comfort to him. This is not the way I want to define Ohana.

Just as I have found ways to reshape my life, I have also reshaped my perspective on family. As I have said before, I am eternally grateful for an incredible group of friends. Though they do have families of their own, these supportive and loving people embrace me and are my Ohana.

Summer is now become a time when I travel to visit some of my friends. I’m beginning to see it as the time I travel to see my family. A few weeks ago, I visited my friend Dorie, which came with wonderful revelations (click here for that post.) Last week, I visited my college friend Monica and her family in Chicago. She’s got two absolutely fabulous daughters, one of whom is my namesake! I love them all. We did fun things like go to a Cubs game (Cubs won!), visit a zoo and discuss the plans for our upcoming trip to Walt Disney World, which will be a tribute and celebration of Ben and my cat, Disney. For me, the best part of the visit was just sitting around on the sofa and talking or watching videos. It’s a beautiful thing to feel like I am part of the lives of these children and to feel like family, accepted, understood and even appreciated for all my quirkiness. I could continue to lament Ben’s and my lack of caring relatives, but I am no longer under that cloud of grief. Instead, I am so very proud and fortunate to be surrounded by people who have been more family than family.

Monica, my namesake, Abby and I getting splashed at the dolphin show at the Brookfield Zoo.

With Monica at Wrigley Field- Cubs win! August 2019

In caregiving, if the people whom you’ve defined as family are not supportive, of course it is hard not to dwell on it. As someone who is emotional, I won’t suggest that you ignore your feelings. So, what can you do? If you’re a primary caregiver, as long as you keep family informed, express needs and set boundaries for what and when you will dispense updates, you will have some level of control of, and grasp of, your caregiving responsibilities and scenario. Family members will have to live with their decisions and you will be able to plan accordingly. It doesn’t mean that you won’t be disappointed or saddened, but you will have a keener understanding of your circumstances and interpersonal relations. This is likely to allow you to detach a little bit as family interactions happen, or don’t, drawing attention to the positive aspects of visits (or not) on your caree.

For your own self-expression and reflection, things you might consider are: keeping a journal, seeing a therapist, venting to friends who are good listeners, attending a support group or, if it is difficult to arrange to leave home, there are online and phone support groups. But, please don’t lose focus on the important, loving and invaluable work that you are doing for your caree.  As I have sorted through the many memories surrounding Ben’s care, I have learned to let go of (or at least work hard to fight) anger and resentment, and I have begun to recall incidents more as a matter of fact and sequence than with emotional attachment to the people who let us down. I can look back and feel grateful that I was able to show Ben so much love, though I also wish with all my heart that we never had to go through the experience.

If you are a family member of a caree, please be honest with yourself about the relationship that you have had with this person and the caregiver. Be realistic about what you can and are willing to do. If you want to help, ask questions about how you can help and also before judging. Remember that this is not about anyone but the caree, and that the primary caregiver does have the greatest perspective, knowledge of and responsibility to the caree.

As you move through caregiving, grief, and life, it is so important to have a clear understanding of the people in your life who are reliable and truly devoted. This does not necessarily mean cutting people off from your life, but rather knowing who will be there to have your back. Lip service is irrelevant. Ben and I learned that we could not rely on his family. Fortunately, we did have friends who stepped in and helped without needing to be asked. I have indulged in and expanded my family of friends. Maybe they are not the traditional definition of family. Yet, they are. Like Stitch, I am grateful to have them in my life. Know who your Ohana really is because they will not leave you behind. That is truly something to celebrate.

Stitch gave Ben some extra love! July 2014

Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.