Caregiver

“Me Before You,” “Me After You,” and “Still Me”- Fiction That Speaks Truth About Caregiving, Grief and Life

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More wisdom from Walt. I love to read- all kinds of books. In more recent years I have read lots of self-help books related to illnesses, caregiving and grief.  In the past year, when I decided to try online dating, I’ve read what I believe are too many books about dating and writing online profiles. They’re not helping! But, I just completed a fiction book that nurtured my soul more than any nonfiction, self-improvement book, speaking a lot of truth about own life without Ben. It is called, Still Me, and it is the third book in what is now a trilogy by JoJo Moyes. It was enlightening, entertaining, validating and inspiring.

The first book in this trilogy is called, Me Before You. It tells the story of a young woman, Louisa, who can’t find herself, but she takes a job as the caregiver of a young man, Will, who is a paraplegic as a result of a car accident. In the course of the story, they fall in love, and, as you can imagine, it is complicated.

I remember being in a bookstore with a friend, and when I looked at the book, he said it was great, but I wouldn’t want to read it. Of course, that only intrigued me. The book was a best seller when Ben had ALS. The book takes you into Will’s experience in this body he doesn’t recognize and a life he cannot accept. Ben had always said that he wanted to do anything to stay alive, whether feeding tube or tracheostomy, but there was always the possibility that he would change his mind. I’m an emotional person, so after I read the book description and reviews, I was not sure how I would feel about reading a book about making a choice to life or die when I was dealing with ALS and losing Ben. On the other hand, I thought that the book might offer insight into the thoughts of someone who is contemplating his quality of life. I decided to read the book. It was a good decision. It was an absolutely beautiful book with a lot of love and interesting perspective. I related to Louisa’s  caregiving experiences and to many of the situations they endured.  In many ways Me Before You helped me to come to terms with accepting whatever decisions Ben would make about how he chose to live and die with ALS. That said, everyone has to make their own decision about whether they want to delve into reality in a book rather than a complete escape. The book was also made into a film, and, as is often the case, the film is not as good as the book. However, if you’re not sure about the book, but you’re curious, you might want to try the film.

I was one of the readers who longed for a sequel, and, thankfully, Jojo Moyes responded with Me After You. As you can probably imagine from the title, it tells the story of how Louisa deals with grief and how she ventures forth in the world to try to find herself, stepping forward and falling back. Again, I was looking for answers, for experiences to relate to, for validation of my own experience. I found them, and enjoyed following Louisa as her story continued. Sometimes, it’s just good to know that the story continues at all, even though it’s a fictional character!

In the third book, Still Me, Louisa is adjusting to her life and carrying Will with her in her heart. She hears his voice as she makes decisions. She looks for ways to honor him. That said, she moves into new romances and takes risks in her life, making some wondrous discoveries about herself. I related so strongly to Louisa creating a new life while finding a place for Will.  I was emotional for the rest of the day after I finished the book, and it has stayed with me, in a good way. I, too, am often guided by Ben. I’m not sure what my happy ending will look like. I know that I hope it includes romance because the relationship that I had with Ben brought so much to my life. The important thing was that the trilogy of books made me feel like that my feelings are normal. The process of caregiving, loss, grieving, and living takes many twists and turns and it did change me.  However, just like Louisa, I can move forward and keep Ben present. I have already made many discoveries about myself and taken many steps-and stumbles- in the nearly three years since Ben left this earth, and, despite a general lack of confidence, I continue to live and love.

I am grateful to Jojo Moyes for helping me to feel positive and cautiously optimistic. I wish she could write a happily ever after for me!

The books are not heavy, difficult reads- they are light and yet deep, and even filled with humor. The characters and relationships are heartwarming and relatable. As Walt said, there is a lot of treasure within them. If you’d like to gain some insights, while probably shedding some tears, this trilogy of books may be thought-provoking, inspiring and comforting. Check them out. Let me know what you think. Please share your reviews in the comments.

Finding Nemo and Dory Also Means Finding Good Advice on Caregiving and Life

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I guess aquatic life has been on my mind since my little jaunt to the Georgia Aquarium and found Nemo and Dory and had so much fun with the sea otters, dolphin and penguins. Nemo, Dory and their friends helped me put into perspective a lot about caregiving and life. It’s not all about “just keep swimming!” but you can read about how that quote inspired me by clicking here.

  1. Some of the best help and support you receive will come from unexpected sources.

Finding Dory,Disney,ALS,Caregiving,Caregiver,GriefDory felt alone because she thought she would never find her mom and dad and have a family. She finally realized that Nemo and Marlin were also her family.  My friends are my family, too and they provided help and support for which I will always be grateful. So did some of the professionals who took care of Ben, and I will forever love and be grateful to them as well. Becky and Gerald may have seemed like they were not up to the task of helping Dory and her friends, but they also came through in big ways. Don’t automatically judge or dismiss people, especially if they genuinely want to help, because they may be the very people who will listen, assist and offer really good ideas and information. Teamwork happens in many ways. All kinds of people stepped in surprised us in wonderful ways throughout Ben’s illness, and they continue to do so. They have compensated for the people who disappointed us, because, of course, there’s that, too.  Knowing that Ben was in the hearts of many always touched me, and it still does. Never underestimate the power of compassion and always be open to delightful surprises.

2. Be careful of the undertow.

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Caregiving is overwhelming for so many reasons. Aside from the demands of the job, there is an emotional toll of helping someone you love deal with any disability or illness and watching them struggle. The “undertow” can take a caregiver and/or a caree to a place of extreme sadness, depression, loneliness and helplessness.  It’s important to stay connected to the outside world, through your own network of friends and relatives, outside agencies, and social media support groups. Make lists of things and/or people that provide comfort, cheer, or assistance when the undertow starts pulling you down.

3. “I’m OK with crazy”- Hank

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Illnesses are unpredictable and caregiving needs are unpredictable. Our moods are also unpredictable, particularly when we are stressed, exhausted and our Tangled emotions are turning us Inside Out (what can I say? Disney references work for me!) You have to be ok with crazy when many things are happening at the same time that you have many conflicting emotions. And, you have to be ok with crazy when attempting to handle crises. I remember thinking that crazy was my new normal. Perspective helps! So does humor.

4. Not everything is easy to do, but there is always another way.

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Creativity, resourcefulness and a good sense of humor can help to determine new approaches and perspectives on how to deal with issues. Don’t be afraid to ask for help.

5. “News flash! Nobody’s fine!” – Hank

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In the most planned and organized day, there will be crises. They can be physical issues but they can also be emotional fallout. Caregivers and carees are not always at their best, though we would like to be. It seems to me that our default answer to “how is everything? “ is “fine” and I’ve found that most people kind of want that answer because they don’t know how to handle anything else. I have heard people with ALS and their caregivers says that it irritates them to be asked that question because people really don’t want an honest answer and they don’t want details. And, they don’t want to feel obligated to do anything, even if there is no expectation of that. It’s ok to admit that things aren’t fine. That admission should not invite any judgment. And, it doesn’t mean that things won’t be fine again, even in a matter of moments. Remember, Hank taught us that we’re ok with crazy!

6. An octopus may have 3 hearts, but it doesn’t mean it’s nice.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Yes, it’s a fun fact, but it also lends perspective to our expectations of people around us. Ben and I were very fortunate to have lovely people around us, but we also learned that not everybody has a big heart, and having three probably would not have helped them either. Also, professionals are there to help, but, like all humans, there are more and less helpful and invested people. We were surprised in good and not so good ways.

7. Let someone know you love, care about and value them.

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Marlin often gotten frustrated with Dory, but he realized that in her innocence, she was fearless and she got him to do “crazy things” like jump jellyfish and outsmart sharks to help find Nemo. His approach to problem solving became asking himself what Dory would do.

In the film, Marlin apologizes to Dory for not having told her how much she did for him. That’s not a regret anyone wants to have. Take any opportunity to share kind and loving moments and memories.  The frustrations and resentments will ebb and flow, but the appreciation and love we have for each other should always flow.

8. “What is so great about plans?”- Dory

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We certainly need to have plans in place, and even back-up plans, but when you’re dealing with illnesses and caregivers, you’re also dealing with human beings and unpredictable factors.  For example, I prepared to go to work every day, but there were days that I had to stay home at the last minute for a variety of reasons. I remember that on some of those days, my feeling Ben’s very loving appreciation and his feeling my unwavering devotion, made for beautiful days. You know you have to be prepared for anything, but expect the unexpected in good ways, too.

9. You can do whatever you put your mind to.

Finding Dory,Disney,ALS,Caregiving,Caregiver,Grief

Dory may have suffered from “short-term remembery loss,” but she dove in and figured out what she needed to do to find her parents. She enlisted her friends to help her and remained determined. She didn’t give much thought to consequences, which did create some problems for her along the way. But, she forged ahead. Caregiving can be very overwhelming at times, in terms of the actual tasks and in thinking about the future. But, I always come back to Christopher Robin’s wise advice to Winnie-the-Pooh: you are braver than you believe, stronger than you seem, and smarter than you think.

10. Never underestimate the power of a cuddle party!

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I am kind of obsessed with river and sea otters, so those litter critters stole my heart in the film. But, they are a strong reminder that a little bit of whimsy, sweetness, and cuteness can lighten any moment. For Ben and me, that often came in the form of generally anything Disney. My huge collection of Disney toys to cuddle didn’t hurt either! I have added a couple of cute little otters to my collection. They all comfort me now in grief, too.

11. Sigourney Weaver rocks! You need someone like her on your side!

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Whether standing up to aliens or lending her voice to stand up for our marine life, she is a star! Sometimes I felt like that person for Ben, and at other times I felt completely inept. But I’m going to always keep reaching to be a rock star (well, maybe more of a Broadway show tunes or Disney star!)

All photos: Finding Dory, Pixar Animation Studios and Walt Disney Pictures, 2016

Walt Disney World’s Epcot, 2007, pre-ALS

 

Independence Day- On ALS and Independence

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Today, here in America, we celebrate Independence Day. In our challenging political climate, 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.

I also can’t help but think of independence as it relates to ALS.

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.

Imagine the loss of all of those abilities that we take for granted. The Project ALS Don’t Talk-a-Thon underscores the physical speech while calling attention to its dramatic impact of a loss of self-expression on our psyches. 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 three years later, am I becoming more comfortable with my independence. Still, I blog and maintain my deep connection to people who are experiencing ALS, as patients or caregivers. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.

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. Let’s be grateful for independence. Let’s fight to preserve those values that are currently under attack and being chipped away and could potentially impact on the medical care and research that strives to help make ALS more manageable and, ultimately, to eradicate this cruel disease. In my practical way, I contribute, through donations and the raising of awareness about ALS. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.

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I always picture Ben like this, in his chair at his desk.

Happy and Hopeful Independence Day.

Walt Disney World
July 2014

 

 

“The Incredibles 2” – Insights Into Super Powers Of Caregiving

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In honor of Ben’s love of this film, here’s a pic of him with one of his best buddies during our visit to Walt Disney World in 2014.

With every Disney film release come thoughts of Ben, but a film like The Incredibles 2 is particularly bittersweet because of Ben’s love of the original film. Mr. Incredible was one of his top three Disney buddies, along with Buzz Lightyear and Sully. Because of this, and since it was our tradition, it was especially important to me to see the film on opening day.

Of course, I had my little cry in the theater as the film began. There are times when I literally feel Ben beside me, which I know some people find strange, but at this film I didn’t feel his presence. I did, however, profoundly feel his absence. I was angry that he did not have the chance to see this movie. I don’t usually feel angry, though I do often feel frustrated that he was cheated of so much of life. There are certainly more profound life moments that he is missing and will miss that I should probably be more angry about, but sometimes the little moments make a tremendous impact.

This blog is a clear reflection of the way I look to each Disney film for enlightenment, hopefully a quote that will carry me forward or give me perspective. I like to be able to share these thoughts with other caregivers with the intention that they will validate, inspire or comfort. The Incredibles 2 did not disappoint. The film actually has a lot of messages about inclusion, diversity, fighting for justice, family and love. There were audible expressions of agreement when Dicker said, “Politicians don’t understand people who do good things. That makes them nervous.“

Interestingly, the quote that resonated with me was very appropriate for caregivers, and for an opening weekend that included Father’s Day. Edna Moda told Mr. Incredible, “Done properly, parenting is a heroic act. Done properly.”  I was so fortunate to have had two devoted and loving parents. As a public school teacher, over the years I have seen many children who are not parented properly, in fact, they are barely parented at all.  Good parenting is indeed a heroic, selfless act of love. The same came be said for good caregiving.

As a caregiver, I often questioned my abilities, especially when I was struggling with exhaustion, sadness and patience with Ben when he was stubborn and demanding. But, like any other caregiver, I put my emotions and feelings aside, or, at least on hold, and trudged on because the immediate needs of caregiving are not negotiable. Phone calls abruptly ended, activities were thrown to the side, chores ignored (well, I can’t say I minded that very much) as I attempted to create order amidst chaos, calm when he was panicked, and peace amidst the devastation of watching Ben deteriorate and suffer, physically and/or emotionally. Like all caregivers, I also ran interference among medical professionals and other related staff, as well as family and friends. I provided spirit boosts and levity and also administered difficult doses of reality, as tactfully as possible.

It certainly wasn’t my goal as a caregiver to be heroic and I don’t think that caregivers generally perceive themselves as heroes. We probably spend more time following Dory’s advice to “just keep swimming.” As a crybaby, I’ve never seen myself as heroic- at any point in my life- which is why, I think, I was puzzled when people told me that I was brave. Ben was brave, I was along for the ride, trying to be helpful and, a good deal of the time, not sure if I was much of a success. My insecurities made me feel much less than a superhero. However, I can attest that I definitely earned the Wonder Woman t-shirt Ben got me after I managed to grab him and keep him from falling off the bed!

In the film we are introduced to new super hero, Voyd, who asks Mrs. Incredible/Elastigirl, “How do you balance the superhero stuff with the life stuff?” Indeed, that’s a very important consideration for caregivers. For me, I constantly struggled with balancing the responsibilities of caregiving against a full-time job, daily life chores, relationships with friends and family, the emotional strain of losing the life Ben and I had, and knowing that ultimately, I was going to lose Ben. In retrospect, I think the balancing act IS the superhero stuff.

Young Dash tells his dad, Mr. Incredible, that he wants to fight bad guys because “It defines me.” I can say that caregiving defined me for several years and I found that it is a significant part of who I am and how I see myself. I have written about how I floundered when I was no longer a caregiver, until I found myself again through blogging, volunteering and trying to support other caregivers. Although I would rather not have discovered this through the illness and loss of my dad and Ben, I feel like I have identified caregiving as my super power. Unfortunately, I was not able to defeat cancer or ALS, but my dad and Ben always felt cared and advocated for and loved, and that is incredibly powerful. I did not see it while I was actively caregiving, but time and distance have provided valuable perspective.

Mr. Incredible at Walt Disney World’s parade, 2014.

Mr. Incredible summed up well the life of a caregiver when he said: “How do I do it? By rolling with the punches, baby!” I can picture Ben smiling and nodding, because, in actuality, both he and I rolled with the punches. I am still in awe of how well he rolled with the severe punches dealt to him by ALS. I guess we were both super heroes, albeit without the cute costumes.

I highly recommend The Incredibles 2. It’s quite fun and fantastic and offers unexpected words of wisdom for caregivers and everyone else. Post your thoughts! I look forward to reading them.

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Ben as Mr. Incredible- Part of a birthday collage that I made for Ben. When it came to battling ALS, Ben was indeed a super hero!

How Rafiki Gave Me Insight Into Grief and The Value of Memories

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Walt Disney World parade 2002

 

It was just last weekend, on Donald Duck’s birthday, that I wrote some reflections about my experience with grief in the nearly three years since Ben left this world. Today, I made some new observations. Classes ended yesterday in NYC public high schools. Today, NYS Regents exams began. I’m on the late proctoring schedule, and since I am devoted to my Fitbit and daily walks, I decided to walk to school, a little more than four miles from my apartment. It was a beautiful day, not yet too warm (I do not like summer heat).

As I do every morning to begin my day, I put on my playlist of “Ben songs”- songs that were important to him and to us. Then, I listened to the Beatles album “Hard Days Night.” Ben loved the Beatles and I have developed a strong attachment to their music because of him. After all, the first time we ever danced together was to “Twist and Shout.” Maybe not the most romantic song, but there was magic when we danced that first time.

As I walked to school, I thought about Ben and how life has changed since my caregiving days. Today, I woke up at my regular time and had the luxury of deciding to leave early enough to take more than an hour to walk to school. When Ben was here, I still would have been happy to have extra time because I could have stayed with him longer and not have had to rush through getting him set for the day. When he did have a private caregiver, on a day like today, I could have stayed home until she arrived, so neither of us had the anxiety of his being alone for any amount of time. Right now, it’s all about me, and, to be perfectly honest, I’m not so comfortable with that.

Although it’s close to three years since I lost Ben, my mind still quickly reverts to my caregiving days and memories of my schedules. When I’m thrust back to those days, it sets into motion a kind of movie in my head about the chaos of juggling work and caregiving. Then, I seemed never to be able to walk at the right pace, or fast enough, to get where I had to be. I continue to replay the following scenes: the panic of Ben being alone; constant texting to check on him; receiving an urgent text from him that I needed to rush home because he needed to use the commode, and then comforting him if I didn’t get home in time; getting his “10-4” or “copy that” texts after I sent an update; walking through the streets with my phone in hand just in case something happened (for a while, it could have been my dad or Ben).

The movie in my head did not make me cry today. It didn’t even unnerve me. It does not feel like a setback. I find that I am so keenly aware of Ben’s absence, and yet, of his constant presence. I don’t feel the same guilt about my “freedom” that I initially felt. However, sometimes I wonder if I will ever really be free, because I am so tied to those memories.

As Rafiki said, “The past can hurt. But the way I see it, you can either run from it or learn from it.” Maybe I have reached a point where I realize and can embrace that certain seemingly mundane or small events- even a shift in my daily activities like walking to work- will always remind me of Ben and our ALS days. Maybe these memories are becoming a kind of comforting reminder that despite the very ugly struggles of Ben’s brave battle with ALS, my caregiving days and our relationship during that time were incomparably and indefinably loving and meaningful and that now, Ben stays with me, even as I keep walking forward and looking for my new right pace.

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