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You’ve Got A Friend In Me- Friendships During Caregiving, Illness and Grief

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You’ve Got a Friend in Me
By Randy Newman

You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy, you’ve got a friend in me
Yeah, you’ve got a friend in me

You’ve got a friend in me
You’ve got a friend in me
You’ve got troubles, and I’ve got ’em too
There isn’t anything I wouldn’t do for you
We stick together and we see it through
‘Cause you’ve got a friend in me
You’ve got a friend in me

Some other folks might be a little bit smarter than I am
Bigger and stronger too, maybe
But none of them will ever love you the way I do
It’s me and you, boy

And as the years go by
Our friendship will never die
You’re gonna see, it’s our destiny
You’ve got a friend in me
You’ve got a friend in me
You’ve got a friend in me

Since today is International Day of Friendship, I’ve been thinking about the lyrics to the song You’ve Got A Friend In Me from Toy Story.

The song applies to so many aspects of my life. It is almost a caregiving anthem. I was there for Ben no matter what, seeing him through the darkest days. As the song says, there might have been stronger or smarter people, but the love we had was stronger than those qualities. As Ben was more vulnerable and more dependent on me for help, I know that he worried that I would say that I could or would no longer be able to take care of him. In his heart, though, when the road looked rough ahead, Ben knew that I would never leave him and that no one would ever love or care for him the way that I did. The unique bond we shared in our romance, despite the tragic circumstances, was a supreme kind of friendship.

Friendships can help to sustain us. I consider myself fortunate to have known my best friend for more than 50 years and to have had my closest friends for much of my life. We have been there for each other through the good and bad times. Sadly, over the past several years, I feel like I needed my friends often- as my dad became more ill and as Ben’s ALS progressed, and then, of course, as I grieved their loss. My patient and devoted friends listened to me repeat the same issues without any resolutions, and despite any opinions they held, they did not give up on me or Ben. They were also there to help Ben, being my backup if he needed assistance when I was with my dad. They voiced their concern for me. They asked what they could do for us. I knew that, as the song says, “there isn’t anything I wouldn’t do” was the way my friends felt about me, and it was and is mutual. I always placed a high priority on being there for my friends, but I still was not happy being on the receiving end of the giving during this time. At the same time, it was a huge comfort to know that I could depend on my friends, and it is beyond heartwarming to see them cheering for me as I have more steadily and confidently moved forward.

Sometimes friendships last forever, sometimes they are brief but deep. Sometimes we make connections that touch our lives although they are not even actual friendships. When I was the caregiver for my dad and Ben, I experienced all of these relationships. There were the people who unexpectedly reached out with a kind word or helpful gesture. There were people whom I did not know very well who had helpful insight, were there to talk at just the right moment, or were simply genuine in their expressions of concern. There were even people I did not know well who were kind enough to keep Ben in their hearts and do the Ice Bucket Challenge or contribute to ALS causes and our fundraisers with their families in Ben’s honor. I will forever be grateful for those moments and people. It’s an important reminder of optimism and faith in humanity.

Friendships also shift over time, even during good times, and that’s natural. People relocate, they get involved with different activities, have families. Terminal illness and my caregiving definitely caused a shift that forced me to evaluate what I considered good friendships. Some people whom I thought were good friends proved to be terribly disappointing. These are the people who said they never called because they knew I was busy, or who did not really ask much but were extremely judgmental. They were people who wrote lots of niceties on social media but never actually reached out or demonstrated friendship.

There were also people who, when we did communicate, would tell me that they knew they weren’t being good friends, seeming to want me to excuse them. At first, I did console them and say that I knew they were thinking of us and would have been there if I’d asked. Eventually though, I felt no sense of responsibility to make them feel that they were great friends because it simply wasn’t true. I felt abandoned when I needed to feel friendship. I suppose I could have reached out and asked for help or support or just a friendly conversation to help me feel like I was connected to my life and friends beyond my caregiving world. It’s hard to do that when you’re feeling overwhelmed by life. That would have been a way to care for myself but I was not up to it. I needed people to step up to me. When they didn’t, it was hard to accept that I simply didn’t fit into the lives of some friends the way I wished or expected. In many cases, I have remained friends with these people, but I do not feel the connection that I used to feel.

Ben also struggled with friendships as his ALS progressed. There were a handful of people who were loyal to him throughout his illness. ALS is known to be an isolating disease and, indeed, a person with ALS (pALS) loses the ability to easily communicate. Ben managed to text through his computer. His speech became impaired and if it was too difficult for him to be understood, he gave up trying. The number of people who reached out to him steadily dwindled. He felt unimportant and abandoned, which was heartbreaking.

We’ve heard the expression that to have a friend you have to be a friend. Friendship is a beautiful gift to give and receive. I do have to remind myself  that everyone has their own definitions of friendship and people form friendships for a variety of reasons with many different expectations of giving and receiving friendship. Some people need their friends during difficult times and others withdraw. It’s also important to see a big picture: as I needed more than I could give while my dad and Ben were ill, my friends might have those experiences as well. We cannot always be there for each other. What we can do is communicate openly, honestly, and compassionately.

Given all of these experiences, I had to make decisions about the friends with whom I would share my breast cancer diagnosis and treatment information. Although probably well intended, I did not share information that I felt would yield little more than social media emojis. I did not want to be defined by my diagnosis and I did not want to have to answer a lot of questions, hear unsolicited advice or feed anyone’s idle curiosity. I did not want anyone to feel obligated to follow up with me, either. Again, I am fortunate that I could turn to and rely on a wonderful circle of devoted friends.

It’s not always easy to know how to be the best friend you can be. Sometimes, in the case of someone who is caregiving or who is ill, it means asking how you can be a good friend, or just being genuinely present and available to listen, validate and comfort, or to let your friend know that you are giving them the space they seem to want but that you are there for them when and if they are ready for you. Not long ago, I compiled a list of things that you can do to help a caregiver. You can find that by clicking here.

Through our actions and expressions of love and support, I believe and am so very grateful that my dear friends and I agree that
And as the years go by
Our friendship will never die
You’re gonna see, it’s our destiny
You’ve got a friend in me.

Buzz was one of Ben’s heroes, but he loved Woody and friends, too! (July 2014)

If you are feeling lonely, I hope that you will reach out here, or on this blog’s Facebook page. There are also many online support groups- even on Facebook. Feel free to email and I will try to direct you to resources.

#InternationalDayofFriendship

Independence Day from a Lens of ALS, Aging, and Caregiving

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My dad, USMC during the Korean War.

Today, here in America, it is July 4th, or Independence Day. Although I try not to delve into politics in this blog, unfortunately, this holiday makes it impossible to ignore current events. In our current, repressive political climate, I personally cannot bring myself to participate in any festivities. I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.

We take our independence for granted in so many ways, but now, independence is a concept that is being seriously challenged as our rights, and those of our loved ones and other citizens, are being reconsidered and revoked in a way that makes my country feel almost unrecognizable to me. Sadly, I watched my dad lose his independence as he aged and struggled with cancer, and I saw Ben lose his independence as he succumbed to ALS. Losing independence is hard to handle physically, legally, politically, and emotionally.

My dad was used to being the tough guy- after all, he was a Marine. As he got older, it was hard for him not to be able to manage the tasks that required physical strength. It was a hard thing to admit that aging has taken some of his independence. Even things that he could do independently, he wanted me to take care of. He wanted his independence but he wanted to depend on me. He wanted to know that I was there for him. I navigated his pride as I, the consummate klutz, and a pretty weak one at that- lifted and schlepped for him. He worried about my back but he did not want to have groceries delivered. I shopped in the city, cooked for him and brought everything to him by train. I know that he was comforted in the knowledge that I was going to take care of him. He was coping with fear of being alone, fear of his cancer progressing, fear of dying, and even fear of leaving me. Whatever it was, my dad had cancer, he was more than eighty years old, and I loved him. I was his caregiver and I was his daughter. Actually, anyone I met during his doctor appointments or visits to the neighborhood told me that I was his life. I knew that and he wanted me to know that.

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

Ben dealt with a loss of independence as ALS stripped more and more of his abilities. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.

This was Ben’s first excursion in the scooter, May 2010

Imagine the loss of all of those abilities that we take for granted. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about.  He tried hard to avoid, for as long as possible, his loss of independence.

As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I could no longer take time for myself. And, I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom. Only now, nearly seven years later, am I more comfortable with my independence. Still, I blog and maintain my deep connection to caregivers and people with ALS. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.

Ben even had fun on the Magic Express wheelchair lift!

Today is also the anniversary of Lou Gehrig’s famous speech, when he noted that “I might’ve been given a bad break, but I’ve got an awful lot to live for,” and he was “the luckiest Man on the face of the earth.” In a very public way, he lost his independence and the ability to continue his career. On a positive note, what great perspective and lessons in humanity and gratitude he left as his legacy!

Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.”This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. I was raised to be a patriot, grateful for our independence. I hope that we will be able to win the fight to preserve those values that are currently under attack and being chipped away. I do fear for their potential impact on the medical care and research that strives to help make ALS more manageable and, ultimately, eradicate this cruel disease and other horrible illnesses. I hope that legislation will progress that will support caregivers. In my practical way, I contribute, through donations, volunteering and the raising of awareness about ALS and caregiving. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases and hope that this country wields its superpowers and that good triumphs over evil.

It’s Stitch – Experiment 626 – Day! Memories of Stitch and ALS

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ALS, Walt Disney World, Lilo and Stitch
The very first time we met Stitch, October 2006!

On June 19, 2002, Lilo and Stich (Walt Disney Pictures) was released. But, today is Experiment 626 Day! I have loved Stitch since I saw that film. When Ben and I went to Walt Disney World and I had read that Stitch could be found at the Magic Kingdom, I was on a mission to find him. Ben was very patient!  In honor of the film and my buddy Stitch, here are some photos from our visits to Walt Disney World over the years. Ben liked taking pictures of me with Stitch because he was my good buddy and Ben got a kick out of that. I look at those photos and even though Ben was the photographer, in my mind and in my memories, he is so present in those moments and I can vividly see him laughing. I am so grateful for these memories.

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

I think the funniest memory I have is from our 2012 trip. Walt Disney World has many and great accessible restrooms, which made life much easier for Ben. I would get Ben situated and wait outside because he couldn’t walk to lock the door. Also, I could hear him if he needed assistance. One day, while I was waiting for Ben, Stitch walked by and I yelled hello to him. OK, yelled a lot, with much waving. Moments later, Ben called to me. As I helped him into his scooter, he couldn’t stop laughing, imitating my calling Stitch and saying that he started wondering how he was going to get himself out of the bathroom because he knew Stitch was one of my favorite friends and he thought I might abandon him! I did not! And, I’m not telling if I thought about it!

I love this little guy!
I hunted him down at the Animal Kingdom in 2007!

On our last visit in July 2014, Ben knew that one of the things I had always wanted to do was have breakfast at the Polynesian Hotel with Lilo and Stitch. I had not mentioned it while planning this visit because it was a long commute from our own hotel and I didn’t want to tire Ben. Even in an electric wheelchair, transferring and navigating was exhausting to him. But, Ben wanted us to have that experience. I think Ben wanted to laugh at me gushing at Stitch, which, of course, I did! Stitch was his adorable self, as was Lilo. They were very attentive and considerate of Ben and his inability to get out of his seat. It was an incredible time that I will never forget, particularly wonderful because it was a brand new memory, as opposed to memories we were trying to recreate to almost try to turn back time to the days before ALS. Also, because it meant so much to Ben to do this for me, at a time when I was doing so much for him. I will never forget the magical connection that Ben and I felt when we were at Walt Disney World and the way that Stitch and our many Disney friends helped us to transcend the realities of ALS.

July 2014, Breakfast at the Polynesian Hotel.
Stitch gave Ben some extra love!

I am equally grateful that I had an opportunity to create new memories with my buddy Stitch, when I returned to Walt Disney World in 2019. It was a wonderful time with Monica, Snappy and Andi, and an important milestone and lesson that I can return to this place that is such an important part of Ben’s and my story, keep him in my heart and even feel his presence, but step forward to live, love and laugh.

Making new memories at Walt Disney World 2019

Happy Stitch Day!

Happy Birthday and Thank You, Goofy!

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When I think of Goofy, I can’t help but remember all of the fun times that Ben and I had with him. Of course, he’s always a lot of fun- he’s Goofy! But, after Ben’s ALS diagnosis, we learned that there is a whole lot more to his Disney magic than silliness. Goofy was a big dose of comfort to Ben during our last visit to Walt Disney World.

Meeting our Disney buddies was always fun, especially for me, but after Ben’s ALS diagnosis, seeing them, especially Mickey Mouse, became very emotional. Although Ben traveled around the parks in a scooter and then an electric wheelchair, while he still had strength in his legs, he stood up for photos with Mickey, Minnie, Pluto, Goofy and Buzz Lightyear. As his legs weakened, he still tried to stand for Mickey and Minnie.  A couple of times, Mickey even helped me to help  Ben out of the chair and he escorted Ben to the photo spot. During our last trip, in 2014, when Ben would not stand at all, I knew he had truly weakened. Living with him, you might think that it would be more obvious to me that he had deteriorated, and of course you would be correct. However, Ben admitting that he could not stand to meet Mickey was symbolic of his surrendering to ALS and that our life was never going to be the same. I think that Ben was overwhelmed and his tears were a kind of rare plea for help. For magic. It was an overwhelmingly sad and emotional meet and greet, with Ben and me in tears. Mickey had hugs for both of us and I asked him for some magic. With a diagnosis like ALS, you just want to believe in that magic.

It was actually Goofy who picked up our emotional pieces. He saw me trying to comfort Ben and he knelt down next to Ben, being his Goofy self, and soon enough, Ben was laughing. He hugged Ben, he danced around, and simply didn’t stop “goofing around” until Ben was back in the magic. Goofy knew just what to do and there was nothing Goofy about that! That’s Disney magic.

Thank you and Happy Birthday, Goofy! You are 90 years young, and a forever friend.

Disney Helps With Mother’s Day Without My Mom

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We were always Mickey Mouse fans!

Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. The truth is that when my mom was alive, every day WAS Mother’s Day. We were so close that we did not need an actual holiday to celebrate that fact. After I lost her, and then my grandma, I can’t say that this holiday was like other milestones in terms of evoking debilitating sadness. There was a feeling of not belonging, the sting of realizing that I didn’t have their close and unconditional love anymore and the knowledge that my celebrations with them will have to live in my memories. I spent the day at the theater, which is something I enjoyed with my mom, but something that always brings me joy and peace. Living in a house with Grandma, in some ways I grew up with two mothers, and I honor both of them today.

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

I think about the importance of mothers in Disney films. In many of the animated films, mothers are not present, having died at some point in the childhood of our favorite characters. I have been moved by more recent live action Disney films, where adults and children show emotions and vulnerability as they deal with loss and grief. The films show us that it is okay to be sad and help us to see that people we love and lose stay close in our hearts. This touches me deeply, and it is such an important message for children who are grieving. I previously shared this clip from the live action Cinderella, where 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. Cinderella was my first favorite princess and she remains dear to my heart. I especially love that in the live action film from 2012, we meet Cinderella’s mother, who imparts the important advice, “have courage and be kind.” But we see how Cinderella and her father work through their grief and how Cinderella must then cope with the loss of her father. I keenly relate to how she acknowledges the ways in which she her parents with her and honors them in her actions. The way that she chooses her mother’s dress and asks her Fairy Godmother to keep the butterflies because of her mother validate my own gestures. They are also good ideas to share with children who are grieving.

In Mary Poppins Returns, Michael Banks (yes, all grown up and with his own children) must cope with the loss of his wife and help his children. He lets them know that their mother lives in their hearts and memories. He explains, “Your mother’s not gone. She’s in your smile, and your walk, John, and Annabel’s eyes. She’ll always be with us wherever we go.” 

I love when people tell me that they see my mom and dad in me. To this day, I have a hard time when I see that restaurants and shops that I visited with my mom or Ben have closed. It feels like I have lost tangible evidence of our memories, taking them further and further away. I sometimes need to remind myself that I carry all of those memories and the relationships within them in my heart, and by sharing them, I pass them along.

 Mary Poppins sings a wonderful song, The Place Where Lost Things Go, in which she suggests:

Maybe all you’re missing lives inside of you
So when you need her touch and loving gaze
Gone but not forgotten is the perfect phrase
Smiling from a star that she makes glow
Trust she’s always there
Watching as you grow
Find her in the place where the lost things go.

(Composer: Marc Shaiman; Lyrics: Scott Wittman)

As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. I cherish my memories to keep my mom’s and grandma’s spirits alive and honor them. So much who I am and what I do reminds me of them. I get my Peter Pan-like inner child spirit and love of Disney from my mom. You won’t be surprised that one of my favorite memories is when my mom called me from Walt Disney World exclaiming, “Abby, I met Mickey!” My mom was the only truly selfless person I have ever known and I hope that in some small way I have followed her example. Every time I bake, I feel Grandma with me, and she is a part of all my creative and artistic endeavors, as well as my fashion choices. I believe natural caregiving skills, which even extend to my students, were instilled by both of them.

Now, I am a devoted mom to my cat, Tinker Bell, as I was to Disney and Tiffany. My mom- well, my whole family- loved our pets, so their influence was present even as I cared for Disney and Tiffany as they coped with several illnesses. Tinker Bell. Today, as on most days, she is curled up next to me, napping and then waking up to chat and, I imagine, say “Happy Mother’s Day!” With some coaxing, she let me hug her and take a selfie as her gift to me.

I do know that my mom and grandma are always with me. There is not a day that I don’t think of my them and I so frequently speak of them that sometimes people are surprised that they have been gone for more than 25 years. I am proud to honor them on Mother’s Day, though in truth, I celebrate, treasure and miss them always.

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