Caregiver

When You Need Some Bibbidi Bobbidi Boo

Brave Disney during her hospital stay in 2016

Sometimes you just need some Bibbidi Bobbidi Boo. This is one of those times for Disney and me.

Cinderella (1950)
Walt Disney Productions

In my last post I was worried about Disney as I faced 2019. My worries have escalated. I took her to the veterinarian during the week. The vet believes that she has cancer that is affecting her spine and that’s why her legs are weakening. There is nothing that can be done for her because medications would damage her already failing kidneys and cause her diabetes to go out of control. Her veterinarian, Dr. Napolitano, is wonderful, and she described Disney as an impressive girl- at 17 years old and with so much wrong with that little body, she is a fighter. But, she’s still my baby. Disney was given an injection, and I was given a prescription, to help with the inflammation that might ease her walking. Now, it’s a matter of time.

Visiting hours for Disney during one of her hospital stays.

I see a very slight improvement in her walking, and she is persistent. She climbs onto the sofa and the bed and likes to be near me. Her appetite is good and she was very excited to eat turkey, probably her very favorite treat. She’s not quite herself, but she is not as withdrawn as she had been, so maybe the medication is helping. Dr. Napolitano says these are good signs. I am spending a lot of time giving Disney attention and love, but the sadness looms.

Watching Disney, doting on her and worrying about her certainly has me pretty stressed. I find that I am not only dealing with the impending loss of my sweet Disney, but I am also reliving the terrible parts of caregiving and anticipatory grief that I experienced during Ben’s battle with ALS. On Friday, I spent the day at work preoccupied with how Disney was doing at home- if she had fallen, if she was in pain, if she was scared to be by herself if she didn’t feel well. That brought back memories of the years of being at school with my phone in hand, hoping that my phone would not ring with an alert that my dad or Ben were having a crisis. Yesterday, I did go to the theater with a friend, but I was distracted by thoughts of how Disney was doing at home. I felt the same guilt about going out that I felt when I arranged to go out while Ben was ill. Once again, there is no relaxation at home. The pain of those memories, which has dulled but has not been forgotten, has once again become vivid.

Also, I feel like I have once again stepped back to being Abby who is caring for an ill loved one. When I started working at my new high school, no one, except for a few teachers who knew me prior to this position, knew about Ben and my dad. I could shed my reputation as the caregiver or the griever. But, here I am again. I do appreciate the concern shown by my friends, I just don’t want to be “that” Abby again.

Timon from the The Lion King was right when he told Simba, “Sometimes bad things happen and there’s nothing you can do about it.”  I know the realities. Disney is seventeen years old. She’s been ill for quite some time. She was diagnosed with diabetes about a week after Ben died. Since then, it’s been one medical problem after the next. Despite this, she’s had a really good life and she’s brought me so much happiness and comfort. She is simply a very sweet cat – beautiful inside and out- without any of the negative qualities attributed to cats. She’s kind of like a needy toddler who always needs her Mommy. She was always there for cuddling when things were awful with my dad and Ben and when I looked in her big green eyes I knew she understood what was in my heart. When Ben was in the hospital for those six weeks, I was so grateful to return home to her. Importantly, she is, actually, my one remaining connection to Ben. Disney was here as Ben’s ALS progressed. She watched intently as his walking became unsteady. She went to him when he could no longer go to her. She was even in the hospital to say good bye and watch over him. And, here I am, watching over Disney in the same way, trying unsuccessfully to simultaneously ignore and accept what I know is happening.

Disney watched Ben throughout their visit in the hospice, even when he slept, as pictured here.

I have pushed through the bad days as I navigated the Inside Out of emotions in caregiving and grief (click here for prior post) and I am constantly reminded and reassured that I can step back into life. Writing these posts helps me to sort through issues as they arise. Maybe that’s why I am so shaken by the way this event has thrown me so far back into the depths of grief.

Ben made the choice of how he would live and die with ALS. I will have to make the choice for Disney. I want to be sure that she is comfortable and that I am not being selfish and keeping her here when I should let her go. Maybe I am too obsessively following her, lifting her so she does not have to climb, keeping a close eye on her and listening to every sound, talking to and cuddling her. I wish I had a fairy godmother who could bring us some Bibbidi Bobbidi Boo, but maybe Disney and I are each other’s fairy godmothers, and even though we don’t have actual magic, we are always there for each other with all the love in the world.

Disney and I in our recent holiday photo. She was very patient about my enthusiasm for the Santa hat.

Snow White and the Seven Dwarfs – Kindred Spirits in Caregiving, Grief and Beyond

Original ad for the movie premiere.

On this day, December 21, 1937, Walt Disney’s first full-length feature, Snow White and the Seven Dwarfs premiered at the Carthay Circle Theatre in Los Angeles. I wish I could say that I navigated caregiving and grief like Snow White, the graceful princess who happily sang her way through taking care of the seven dwarfs to a happy ending. I do believe that at times I was that person to Ben and my dad. I was very much their cheerleader and the person who tried to keep them entertained. I was also the nurturing person who managed the details of their care, the way that Snow White kept her household together, except that I seriously lack her stellar housekeeping skills! Alas, I have always related more to the dwarfs!

One of my first blog posts addressed how, as a caregiver, I often felt like all seven of the dwarfs within a single day. In the earlier stages of grief, I also had drastic ups and downs and could feel like any and all of the dwarfs within moments. Now, more than three years after losing Ben to ALS and almost five years after losing my dad, I still feel a kinship with those seven cuties. Here’s how.

Sleepy

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Walt Disney World Halloween Electrical Parade

During my caregiving days, as Ben’s ALS progressed, he often required assistance throughout the night. I am a NYC public school teacher, and there were days that I could barely keep my eyes open at work, and a classroom is a place where you need to be on your toes. My dad also called many times in the middle of the night if he didn’t feel well, and I would travel about 45 minutes either to his home or to meet him at the Emergency Room late at night or early in the morning.

In the early phases of grief, there were many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss.

Now, I continue to have sleepless nights, though less consistently. I worry about being alone for the rest of my life, feel anxiety about dating, and sometimes I simply get caught up in memories and my mind gets the best of me. It’s also exhausting to deal with the ups and downs of emotions while adjusting to a new lifestyle, trying not to revert to staying by myself and becoming too comfortable alone.

Dopey

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Not sure who the real Dopey is!

When juggling Ben’s needs, I did not necessarily know what to do or how to help him, and, indeed, I did feel Dopey. The medical jargon was also confusing to me at times. Simple things just seemed out of reach for me because I became so overwhelmed or was just so tired. I broke things, dropped things, locked myself out of the apartment, and a bevy of other Dopey things.

For the first couple of years after I lost Ben to ALS, I found it very difficult to be caught between the past and the present. Sometimes I found myself buying something because Ben would have wanted it. When I got home, I was only reminded that he was no longer here, and then I felt Dopey, and more sad.

There are still times when, in the middle of nowhere, something will trigger great sadness and I will break into tears. People are generally understanding, but I still feel kind of Dopey.

Trying to step back into a social life, reaching out to old friends and new people has me feeling awkward and yes, a little Dopey. I feel most Dopey since I have delved into online dating. I feel like I never do the right thing, take things personally from people who don’t even really know me, and like there are codes and strategies that I am too Dopey to understand!

Bashful

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

I love Bashful!

When I was a caregiver, asking for help and not even knowing exactly what to ask for was  embarrassing. Having to explain to professionals, or even friends, some things I would have preferred not to discuss, or even know about, was definitely cause for me to feel Bashful!

Throughout the early days of grief and even now, it’s been embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I have felt that people are judging how I’m grieving, how long I’m grieving, and what I am doing to continue living and reshape my life.

As I’ve stepped back into life, I have had to overcome my general shyness to create a new social life. I have reached out to old friends and made some new ones. I have also joined some online dating sites in an effort to find love again. It’s very difficult for me. And, it’s been very disheartening, amplifying the feeling that Ben is the only person who would ever really “get” me. But, despite embarrassment and vulnerability, I press on.

I also feel Bashful about things that are not going as well as I would like them to go, like online dating. I don’t feel like my life is where I want it to be, though I am proud of myself for taking many steps forward, but I am self-conscious and sometimes want to withdraw and stay by myself.

Grumpy

Staying cheerful, positive and focused when my dad and Ben were Grumpy was difficult. They were understandably Grumpy, but their taking it out on me sometimes only made for more Grumpiness! When I had been through all of the scenarios that I just described, sometimes in a single day, it was pretty easy to be Grumpy!

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Ben (pre-ALS) and Grumpy, Walt Disney World, 2001

Now, it’s usually the setbacks that have me feeling Grumpy. The events dim my mood, like when I went to the Georgia Aquarium and my immediate reaction as I walked through that magnificent facility was anger that Ben did not live to join me and have that experience. Sadness and devastation were familiar to me, but the anger was new and it left me feeling Grumpy. I am also Grumpy when I receive unsolicited advice and judgments about how I should handle my life and how I should feel.

To anyone who has seen that side of me, during caregiving and as I’ve traveled through and emerged from the other side of grief, I do apologize!

Happy

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Walt Disney World Parade, July 2014

Even in the worst and “grumpiest” days of caregiving, when Ben and my dad were struggling and patience ran thin, there was still happiness, albeit bittersweet at times. Sharing good times, making each other laugh, seeing Ben or my dad enjoy something, and successfully meeting their needs, were all positive and joyful experiences that definitely made me Happy!

In the early days of grief, you could call me Happy in those moments when I was lost in good memories or I woke up without dreading the day and the thing that would trigger my sadness.

Now, you can color me Happy when I realize that I am not just going through motions, and I actually am enjoying the present without feeling guilt. I realized this holiday season that I have once again found my genuine smile. I enjoy myself and immerse myself in life and activities I love. In the back of my mind is always the feeling that I wish Ben was with me, but I am usually more comfortable with that. I still have my setbacks, but I can be happy again and it feels good.

Sneezy

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Well, this might not apply to everyone, but I’ve got allergies, even to my cat, whose name, by the way, is Disney! I love her and would not trade her for anything, so I deal with the allergies! Some of my allergies actually subsided after I lost Ben and my dad, leading my doctors and me to think that stress exacerbated my problems.

Doc

On this day, December 21, 1937, Walt Disney’s first full-length feature, “Snow White and the Seven Dwarfs” premiered at the Carthay Circle Theatre in Los Angeles. I wish I could say that I have navigated caregiving and grief like Snow White, the graceful princess who happily sang her way through taking care of the seven dwarfs to a happy ending. I do believe that at times I was that person to Ben and my dad. I was very much the cheerleader and the person who tried to keep them entertained. I was also the nurturing person who managed the details of their care, the way that Snow White kept her household together, except that I lack her stellar housekeeping skills! Alas, I relate more to the dwarfs! I’ve written about how, as a caregiver, I often felt like all seven dwarfs in the course of a single day (click here for that post). To mark this anniversary of the film’s premiere, it seems fitting to me to reflect on how, in grief as in caregiving, I can feel like all seven dwarfs- at times, within the course of a single day. Happy- In the early days of grief, you could call me Happy in those moments when I was lost in good memories or I woke up without dreading the day and the thing that would trigger my sadness. Now, you can color me Happy when I realize that I am not just going through motions, and I actually am enjoying a moment in the present without feeling guilt. Doc- Call me Doc as I diagnose my grief. Am I doing ok? Will people think I’m doing ok? Do I care if people think I’m doing ok? Should I care? Where should I be right now in this process? Am I “normal”? Bashful- Sometimes it’s embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I feel that people are judging how I’m grieving, how long I’m grieving, and what I am doing to continue living and reshape my life. It can be difficult to ask for help, and I’m growing too Bashful to ask people who have been listening to me to continue to do so. I’ve repeated the same things so many times, and I do wonder sometimes what people must think. Sleepy- There are many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss. Dopey- Being caught between the past and the present can be baffling. Sometimes I find myself buying something because Ben would have wanted it. When I get home, I am only reminded that he is no longer here, and then I do feel Dopey, and more sad. There are also times when, in the middle of nowhere, something will trigger great sadness and I will break into tears. People are generally understanding, but I still feel kind of Dopey, and Bashful, for that matter! Grumpy- The conflicting emotions of grief definitely make me Grumpy at times. Sorry! Sneezy- Still allergic to Disney, the cat! I still would not trade her for anything. She has been the greatest comfort to me. How about you? Are you more Snow White or one or more of the dwarfs?

As you can tell, Ben preferred to take my pics with the dwarfs!

As their caregiver, although Ben and my dad did have medical care, when either of them didn’t feel well, sometimes it was up to me to figure out what might help. Sometimes, what we thought could be symptoms of a big problem would just go away. Sometimes I had to seek more advice or help. This is as close to a Doc as I will ever be!

Call me Doc as I have diagnosed my experience with grief. Am I doing ok? Will people think I’m doing ok? Do I care if people think I’m doing ok? Should I care? Where should I be right now in this process? Am I “normal”?

Even now, as I feel that I have stepped back into life, and I’ve even felt that I found my smile and childlike enthusiasm for the holiday season again, I assess my progress in coping with grief and my emergence from the very dark days. I read posts from the days when I just started the blog in 2016 and analyze what has and has not changed, what triggers setbacks and what’s healthy or potentially troubling.

I am happy to say that I feel that, overall, I’m doing well. This Doc rests assured that healing happens.

How about you? Are you more Snow White or one or more of the dwarfs? Please share in the comments section below. If you don’t see the comment box, just click on the title of this post.

 

Walt Disney’s Legacy- 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. I’ve shared some of his quotes that have resonated with me, and I continue to 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. 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. 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. The same can be said about many of the quotes I’ve read by Walt. It seems to me that this is a good day to reflect on some of his words of wisdom that have consoled, guided, intrigued, and entertained me.  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,Caregiving,Grief,Walt Disney World, Disney

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.”

The Dapper Dans were very cool! Ben always loved them.

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.”

Ben even had fun on the Magic Express wheelchair lift!

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.”

At the Walt Disney World Wishing Well at Cinderella’s Castle- Making a wish!

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.”

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- in the past year I’ve gone to see the cherry blossoms in Washington, DC and I’ve greeted otters, penguins and dolphins- all things I have wanted to do. 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.”

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,Caregiving,Grief,Walt Disney World, Disney

This is a comfort to me. 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,Caregiving,Grief,Walt Disney World, Disney

That sounds like a good plan! Thank you, Walt

 

Wisdom from Walt Disney on Moving Forward

Walt Disney, Walt Disney World

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

I guess with December 5 marking Walt Disney’s birthday, and the anniversary of his death just a week away, his quotes have been on my mind. This quote seems to resonate a lot with me this holiday season. This is my fourth holiday season without Ben. During the first holiday season without him, his loss was very raw, and on top of feeling that devastation, I found myself caught up in the memories of the holiday season of 2013, right before my dad died. That year, I observed the holiday season from car and train windows on my way to and from the hospital and then the VA Hospice in Northport, NY. Though I did decorate the apartment for Ben and me, there was nothing festive about our lives. The truth was that I did not get to really grieve for my dad because I was preoccupied with caring for Ben. At the same time, Ben and I both felt the immense weight of my dad’s loss.

My first holiday season alone was painful. I had always made a silly holiday card starring my cat, Disney, but I wasn’t really in a festive frame of mind. I decided to make a card that was a tribute to Ben, using the lyrics to “Auld Lang Syne.” Since then, I have kind of gone through motions around the holidays. I always put up my tree. I continued to put the tree ornaments that Ben loved exactly where they were when he was here, placed where he could see them from his desk. I have gone to see a couple of the holiday store windows, which are usually such a treat in New York City. But, it left me feeling empty and alone. I walked through the holiday markets around the city but felt sad, remembering how I rushed through them looking for something to bring Ben but not wanting to waste time because I had to get home to him. I have not gone to see the Rockefeller Center tree in all this time. These things didn’t feel fun and happy to me. They were painful reminders of my caregiving days and how Ben could not get outside to enjoy things with me and how I did not have time to myself. Last year I simply could not muster the enthusiasm to make a holiday card. I did take a photo of Disney, as I frequently do, and I emailed it to a few people, but I could not put on a happy face and pretend that I was feeling the holiday spirit.

This year feels different. I had to get a new tree- it’s purple, but Ben’s favorite ornaments still have their places of respect in tribute to him. Last weekend, on my way to meet a friend, I walked through one of the holiday markets- I was not terribly enthusiastic, but I also did not dread it. Yesterday, on my way home from school, I decided to go to Macy’s to see the windows. I was keenly aware of this change in my mindset. I also made the usual mental note that I am now able to make spur of the moment decisions to do things that I’d like to do, and although it didn’t exactly feel good, I did not feel the guilt that used to surround me whenever I did something that I was not able to do when I was caregiving or that I enjoyed with Ben. I still feel the loneliness, but it’s a feeling that I’ve integrated into my life that no longer keeps me from pushing forward.

Today, I took an “ugly sweater” cookie decorating class. Baking and decorating cookies is one of my favorite things to do. It’s like my therapy- usually a three-day epic event which thoroughly engages my attention and sense of whimsy. I’m happy that my friends love them. Ben delighted in watching me because it made me so happy and because his daughter was thrilled to get them. We carefully counted the number of each design, remembering how my grandma always counted the matzah balls she made because my dad would sneak into the kitchen to eat them. As I was walking to the class, I thought about how my life has changed. I can freely take classes now. I can feel the excitement of the holidays. Tomorrow, I am going to try to make time to see the Rockefeller Center tree. I am used to missing Ben, at the same time knowing that he is with me. I am more purposeful in my planning and more energetic. There are times when I get overwhelmed and I allow myself those moments of tears and loneliness. But, I am also able to enjoy activities and occasions and I welcome and embrace that joy, too. It’s a kind of emotional juggling act that I seem to be mastering.

The paths won’t be the ones I planned. Right now, I don’t have the purpose that I had as a caregiver. I don’t really know what awaits me, though I know that I would like to find love again and I would like to pursue my blog and pet business ideas. I know there will be bumps, and since I am a klutz, I don’t know how well I will navigate them. I have learned, however, that I will be okay. The good thing is that, as Walt said, I keep moving forward and discovering new things about myself and life.

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

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

Last week, November 23, marked the 23rd anniversary of the release of the original Toy Story. Ben absolutely loved Buzz Lightyear and we both loved this film and its sequels. In the context of Thanksgiving and the film’s anniversary, I’ve been thinking all week about the lyrics to the song You’ve Got A Friend In Me.

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.

Thanksgiving is a difficult time because it is a painful reminder of the family I no longer have. To be more positive, I try to put my energy into reflecting on how grateful I am to have friends who have become my family. There’s good reason this song comes to mind at this time.

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 move, 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.

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.

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.