May 13, 2018

A Mother’s Day Tribute- The Women Who Showed Me the Caring In Caregiving

abby_admin Grief, Uncategorized Mother's Day 0 Comments

We were always Mickey Mouse fans!

Today is Mother’s Day. My grandmother used to say that every day should be Mother’s Day. And, 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. Living in a house with Grandma, I feel like I grew up with two mothers, and I would like to honor them today.

My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie. There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.

People often described Mommy and me as being attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her when we were out shopping. People laughed that we spoke on the phone many times every single day. We went to the theater and ballet together. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events. We loved each other unconditionally and had so much fun. Frankly, I could not imagine living after she died.

Grandma and I were also very close. From the time I was a child, I was in awe of Grandma and her elegance. I loved her sense of fashion. She had a wonderful way of putting together colors and fabrics and styles. The best shopping I ever did was in her closets and drawers. In fact, I still have some of her clothing and jewelry. More than once, sales people at stores would approach me and ask, “are you the person who called your grandmother for fashion advice?” They found that admirable. If they knew her, they would have called her, too! When I’m feeling lazy about dressing up or putting on make-up- it happens rarely, but it happens!- I hear her warning me that I never know who I am going to meet and I should always look my best. Clearly, she was hoping for a nice, Jewish Prince Charming. My fairytale was not quite exactly her idea of the “tale as old as time,” but Grandma always seemed to understand that I danced to my own beat. Sometimes we frustrated each other, particularly when I challenged her ideas of an ideal life. At times, it was also difficult for me to feel that I had two moms telling me what to do, and that my mom seemed to have a supervisor. But, Grandma and I had a special bond and an unconditional love for each other.

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

Grandma had four brothers and a sister, my great-aunts and great-uncles, and I loved them all dearly. Losing Grandma and my older relatives left a huge void in my life. However, through our loving relationships, I developed a tremendous appreciation of and compassion for elderly people that I have to this day.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

Grandma was very artistic and I inherited her abilities and passion for crafts. She crocheted many aphgans and sweaters, skirts, dresses and ponchos. I remember choosing wool colors with her and how each item had to represent the gift recipient, yet had to be timeless and classic. I can see my own shifting tastes as I look at my childhood aphgan in its pastel colors and then the gray, maroon and cream colors in my college aphgan. I remember waking up in the morning covered with the squares she made while I was asleep. My dollhouse and dolls even got aphgans! I still have many things that she made. They hold such beautiful memories of time spent watching her and learning how to crochet. Eventually, she helped me to make an aphgan of my own. Ben used it often. Grandma’s talents extended to the piano, and she inspired me to learn how to play. I never played as well as she did, but she helped and encouraged me to play, and I’ve kept some of the sheet music.

My mom was at her core a natural, nurturing caregiver, at a time when there was no real acknowledgment of the role of caregivers. She took care of my dad, brother, our dogs and me, as well as Grandma, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times. She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.

In many ways, my own caregiving days started when my mom died. I followed her example and began looking after Grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with Grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles. I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. My grandma did not want to be cheered, and I understood that. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. And, as in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.

Grandma and I around 1990

When Grandma was ill, I helped with her caregiving, and although I was not her primary caregiver, I was the one she usually relied on for comfort. At the same time, she wanted to protect me from the fact that she was dying.

When I was the sole caregiver both for Ben and my dad, I often thought about how hard my mom worked, and that served as a tremendous inspiration. Ben admired the closeness and devotion that we had. He saw it in my relationship with Daddy and felt it as I shared stories, rituals and memorabilia with him.

As time has passed, I recall many wonderful memories of my mom and Grandma and our time together. So much of 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!” Every time I bake I feel Grandma with me, and she is a part of all of my creative and artistic endeavors, as well as my fashion choices.

Making humentashen is a tradition that started a long time ago!

There is not a day that I don’t think of my mom and Grandma. I am proud to honor them on Mother’s Day, though in truth, I celebrate and treasure them always.

May 6, 2018

On ALS and The Little Mermaid- When Ariel Lost Her Voice and Herself

abby_admin ALS, Caregiver, Caregiving, Disney, Uncategorized 3 Comments

“The Little Mermaid” © Walt Disney Pictures 1989

May is ALS Awareness month and despite the popularity of the Ice Bucket Challenge, it still is not a well-known or understood disease. In this post, in my Disney way, I want to do a little more to describe the progression of ALS as Ben expressed his experience and as I witnessed it.

ALS/Lou Gehrig’s disease, is defined as a disease which causes the death of neurons that control voluntary muscles. My friends and family became aware of the physical effects of the disease primarily through Ben’s experience. Ben’s first symptoms were a lack of balance and falling. His legs also became tired very quickly. As the disease progressed, he lost the ability to use his legs at all, and then his arms and hands, then chewing and swallowing became difficult, and his speech became increasingly impaired as he experienced those muscle losses. His cognitive skills were not affected, so he was completely aware of what was happening to his body. The progression of ALS varies from person to person, so, for example, some people may never lose their ability to walk, others lose their ability to speak first, while Ben lost it last. Eventually, the ability to breathe is lost, and that is often the cause of death from the disease.

This scene from Disney’s The Little Mermaid was poignant to me within the context of ALS. Ariel wanted so much to be a human and to be with Prince Eric that she was willing to relinquish her voice to the sea witch, Ursula. Ariel knew that her voice was integral to who she was, but she was in love, and you know how that goes, especially in a Disney film. Once she gives her voice to Ursula, she quickly realizes that she has lost the ability to express herself, and her ability to sing, which was so important to her. She also did not realize that without her voice, she was no longer recognizable to Prince Eric. Of course, she made a choice. Someone with ALS does not get a choice, and I would venture to guess that they would advise her to keep her precious voice.

ALS,Walt Disney World,Little Mermaid,Ariel

The Magic Kingdom at Walt Disney World- 2001. Pre-ALS days

The loss of easy communication was very frustrating to Ben. First, phone use became difficult because handling the phone was hard and it was difficult to understand him. We then began frequent texting. Ben used a virtual/on-screen keyboard and an app that connected his phone to the computer screen. However, if his hand slid off the mouse, communication was cut off and that led to some very tense moments.

Living with Ben, I was more likely to understand what he said and I could facilitate conversations with others. There were times, however, that I could not understand him. He would shake his head and tell me to “forget it,” which upset both of us. When communication was an obstacle and he was homebound, Ben did notice and lament that he had less contact with people. Friends and relatives with whom he thought he was close stopped reaching out, or, they made promises to visit that they did not keep. At the same time, he did not really want people to see him as he looked. He did not want them to see him looking gaunt and struggling to talk, eat and move. It did leave him feeling isolated and hurt.

When strangers did not understand Ben, they sometimes assumed that he was mentally challenged and spoke to him like a child or addressed only me. Often, Ben laughed about it, but on some occasions he felt invisible and very misunderstood. So, I involved Ben in the discussions to show people that Ben was fully capable of understanding and had lots of opinions and many people did follow my lead. As caregivers and loved ones, I see it as our responsibility to educate people through example, because some people are willing but not quite sure how to engage with people with a variety of disabilities. Unfortunately, not being able to say what he wanted and be truly seen and heard sometimes caused Ben to withdraw. I cannot begin to imagine how Ben felt to be seen for the ALS symptoms rather than for himself.

I cannot begin to imagine how Ben felt to be seen for the ALS symptoms rather than for himself. Click To Tweet

After a respiratory crisis landed Ben in the hospital, he had a Bipap mask before he had the tracheostomy. This was the first time that Ben really had absolutely no voice. He could not call me, or call for help, or just have a conversation. On an emotional note, he could not kiss me or tell me he loved me. When I recently re-watched The Little Mermaid and I saw Ariel panic the first time she tried to speak and remembered that she could no longer do so, I remembered Ben’s panic at the thought that he could not easily get someone’s attention with is voice, but he also could not use a hospital call button. Ben was afraid to be alone in the hospital room and I was afraid when he was alone. The mask obscured his mouth, so reading his lips was also very difficult. We spelled out words by my reciting the alphabet and his nodding when I reached the correct letter. However, the length and tediousness of that process frustrated him, and he began to weigh what he really needed to say. There were many incidents when hospital staff ignored Ben and asked me questions that he could answer. I immediately addressed those questions to him so that he could participate in the discussion. Yes, it took longer, and it was not easy, but he mattered, and staff had to accept that. Most really were wonderful, and they got a glimpse of who Ben really was beneath the ALS. But, just as Ariel felt devastated that Prince Eric did not recognize her, Ben, too, felt that he was becoming unrecognizable, even to himself. It also made him look at how he saw himself moving forward, which was something he had tried to avoid since his diagnosis nearly six years earlier.

Ursula tells Ariel that even without her voice, she has her looks, and to “never underestimate the importance of body language.” Unfortunately, with ALS, Ben could not rely on body language. He certainly did not underestimate its importance. ALS slowly strips away a person’s ability to move their limbs and even make facial expressions. Although Ben’s experience with ALS never progressed to the point where he was completely immobilized, some people are left only with the ability to blink, if that. Without a voice or facial and body expressions, a person would understandably feel isolated and even irrelevant. Although visits from loved ones are appreciated, they are not easy, so, unfortunately, as in Ben’s case, visits become less frequent.

Walt Disney World, 2001

Ben could certainly have related to Ariel’s wish to have legs like a human. As he lost his ability to walk, he often told me that in his dreams he always saw himself walking and running. As Ben lost his abilities to walk and move his arms and hands, he saw himself as weak and self-conscious. He missed going outside and playing handball. He did enjoy using his scooter, but daily life skills were becoming impossible and that carries an emotional toll. He walked until he accepted that his legs could not handle a single step without his sinking to the ground. That took away his freedom to move around the apartment. It chipped away at his dignity to have to be transferred to and from the bed, his chair and the commode, and to have to be fed his meals. He often denied that he needed as much assistance as he did, which was stressful for me as his caregiver, but that was what he needed to tell himself to deny that ALS was progressing.

Ben was also aggravated that he could no longer do things that he loved to do, like play music on his keyboard and fix computers. He could still talk me through what needed to be done with the computer hardware, but it was not the same. He also continued to research and discover adaptive electronic and computer devices, though they rarely worked for long, as new symptoms of ALS constantly appeared that rendered them ineffective. Music always remained an essential part of Ben’s life and our relationship, and although he couldn’t play his instruments, and we could no longer dance, he never stopped listening to music and making little videos with music clips for me to celebrate different occasions. I also brought his iPad to the hospital, so he could always listen to his favorite tunes.

Body language encompasses body image. ALS seriously impacted on Ben’s body image. He said that he did not like to look at himself in mirrors. As eating became more challenging, Ben lost a lot of weight. His feet got terribly swollen and even the widest shoes did not fit, so he wore adjustable slippers. He could no longer shave himself and although he said I did a pretty good job, I did not do as perfect a job as he did. We could make it fun and funny, but the underlying issue- the deterioration of his muscles- was frightening and tragic. At one point, his aide shaved his beard and left only his mustache. He was a bit insulted that it took me a while to notice exactly what was different. I think that I somewhat tuned out the physical because there were simply so many changes, and they were too sad to dwell upon. Ben, on the other hand, regularly studied the photos from our visits to Walt Disney World and compared his physical changes from visit to visit. In fact, when I showed pictures of those visits to friends, they always commented on how thin Ben had become, shocked by his physical transformation. When I looked at the photos, I saw only the joy on his face. I guess that’s the Pollyanna in me.

Fortunately for Ariel, she was surrounded by people (well, mer-people and some very adorable sea friends) who loved and looked out for her. Sebastian was an astute and compassionate, if high-strung, caregiver. Nutty but devoted Scuttle revealed Ursula’s evil magical trick to get Eric and Ariel’s voice was restored, she was able to keep her legs and marry the Prince. There was the Disney happy ending.

ALS is not a fictional magical trick, rather, it is a cruel disease to which Ben ultimately succumbed. Still, despite the obvious devastation of his struggle and of losing him, I have to look at the end of Ben’s ALS story with some positive thoughts. Ben’s personality shone as he left this world, according to the very wishes that he expressed, even without his voice, embraced by people he loved and requested to be present, and with music that filled his heart. He was heard and he knew that he mattered and was loved, as his hero Buzz Lightyear said, “to infinity and beyond.”

Now, I use my voice to spread awareness and support caregivers and people with ALS. And, in my Disney way, I will keep wishing on stars for a cure that will ensure a genuinely happy ending for those with ALS.

In my Disney way, I will keep wishing on stars for a cure that will ensure a genuinely happy ending for those with ALS. Click To Tweet

Walt Disney World
July 2014

April 29, 2018

On Slaying the Jabberwocky in Caregiving, Grief and Life

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized Alice in Wonderland, ALS, caregiving, Disney, grief 0 Comments

I can’t go back to yesterday, because I was a different person then.

“I can’t go back to yesterday, because I was a different person then.”- Alice Click To Tweet
I saw this quote with an image from the Walt Disney Productions animated film, as I’ve done here. In fact, it is from the book by Lewis Carroll. Still, it’s a great quote that I could relate to, particularly after my caregiving experiences. Intrigued by the quote, I re-watched the original 1951 version of Alice in Wonderland and the 2010 live action remake. Although I have to admit that they are not among my favorite Disney films, there is a lot of wisdom and insight, as well as some welcome sarcasm, that helped me reflect on the impact of caregiving on my relationship with myself and with others. It continues to resonate as I reshape my life and realize that all of those experiences have in some ways changed me.

“I’ve been accused of being Alice and not of being Alice but this is my dream. I’ll decide where it goes from here.- Alice Click To Tweet
My dad’s cancer diagnosis and then Ben’s diagnosis of ALS plunged me down a rabbit hole, alone, devastated and confused. I wanted to be the little girl who was taken care of, but suddenly I had to deal with very adult realities and take care of my loved ones. The teams treating my dad and Ben gave me instructions and details that sometimes tugged at my own beliefs and my emotions. Especially difficult was taking on the role of parent with my own parent. Instead of being the child protected by my dad, I found myself fighting his negative attitude and working with doctors and nurses to make important decisions for his treatment plan while convincing him to comply with orders because he could have a good quality of life. While ordinarily soft-spoken and shy, I learned that I could be a fierce and resourceful advocate. I was insistent and relentless when it came to getting the most appropriate services for my dad and for Ben. There was a lot of information and I was given a lot of advice, and I frequently felt out of control. There were so many people- professionals and people close to me- telling me what I “had” to do and how I had to deal with things and, when I was spiraling downward, I very easily took direction. But, there were also times that I felt like I could take the reins and make my own decisions. At those times, I did what I felt was necessary, regardless of judgments and disagreements, second guessing myself all the way. That was not always easy for the people I had relied on who were used to directing me, especially those people who naturally like to take control and give direction (I do wish I was a little bit more like that!).

As difficult as it was for some people to see me making more of my own decisions and taking a stand, it was hard for me to change my own self-perception. It was also hard for me to say no to people, or to express my disagreement. I listened politely, even if I did not heed the advice, because I did not even have the inner strength to disagree. I guess I generally fall into the category of “people pleaser.” To be fair, I believe that people had our best interests at heart and I appreciated that. But, as I saw myself successfully handling more caregiving responsibilities, and my dad and Ben became more and more reliant upon me as I gained better understanding of their feelings, I felt my confidence growing, and with that came a growing resistance, accompanied by some discomfort, to automatically complying with what I was told I “had to” or “should” do.

“I’m afraid I can’t explain myself, sir, because I’m not myself.”- Alice

Tapping new sides of myself- stronger, more vocal, more responsible- definitely has come with growing pains. The “Abby” I was most familiar with was compassionate and caring, but also emotional, indecisive and insecure. Suddenly, I was able to see myself as braver and more assertive. Who was this person? I was always someone who second-guessed myself and relied on the opinions of my friends and family. I valued and depended on them and still value their thoughts. But, I also learned that I have to go with my gut sometimes and I can stand my ground. Learning to trust myself has not been an easy process for me, and it has not been easy for some of the people who became used to nudging me forward.

I still struggle with who “Abby” is, although starting at a new school last September gave me an opportunity to completely reinvent myself. Some of my struggle has been that I am no longer the person I most related to- a caregiver, and I did not want to introduce and define myself as being in grief, though it was what I felt most strongly within me.

“That’s the trouble with me: I give myself very good advice, but I very seldom follow it.”- Alice Click To Tweet
As Ben’s ALS progressed, and things became much more difficult than Ben was willing to admit, I was frustrated and overwhelmed, and also resentful. I was struggling with those feelings because Ben was dying and I felt that if he wanted to live in denial, then I had to live there with him. I gave myself all sorts of advice, having internal dialogues about insisting on more paid help, requiring Ben to prepare legal documents to make other important arrangements, and making scheduling changes that might have made daily life more tolerable. I had a lot of good ideas! But, I rarely followed my own advice. At times, I got angry at myself and felt helpless and defeated. I’m sure that it frustrated people who cared about me to see me drowning as I had a good sense of what needed to be done but lacked the emotional ability, or, to be honest, the actual capacity, to make it happen. I have thought about that a lot, and, to this day, although I know that a lot was not right about the situation, I know that Ben felt cared for, protected, and loved. Sadly, I achieved that by often ignoring my own good advice.

“It would be so nice if something would make sense for a change.” - Alice

I cannot begin to count the number of times I wished that something in my life would make sense. Juggling caregiving for my dad and Ben would have been comical if it was not so serious. There were middle of the night calls from my dad when he was deciding if he should go to the emergency room. If he went, I would ensure that Ben would be okay and arrange back-up if he needed help, and then I would meet my dad at the hospital. From the hospital, there was an endless string of calls and texts to report on my dad and to check on Ben. There were the ridiculous restrictions of what insurance would cover, when clearly ALS is a terminal disease that renders a person needing much care. The insurance issues were there with my dad, too, as I tried to navigate his entitlements without a lot of consistent assistance from the medical teams. There were my klutzy attempts to address the needs of Ben and my dad, which they denied were increasing, while trying not to upset or discourage them. There were the routines we painstakingly created that had to be immediately scrapped because Ben exhibited a new symptom of ALS that rendered the plan useless. We just wanted something to make sense. That never really happened, but we embraced it as our new normal, with a sense of humor when possible.

“Sometimes I believe in as many as six impossible things before breakfast.”- Alice

I do love the whimsy and fantasy of Disney. But, if you follow this blog, you see that there is a lot of inspiration and insight in the films, and it helps me. Although I find comfort in thinking about wishing wells and fairies with pixie dust, my life and decisions are quite grounded in a reality that was, for several years, anything but rainbows and magic. As a caregiver, and then in grief, it has been so important for me to surround myself with the things that gave me comfort and let me at least mentally escape. I could get lost in fantasies in the same way that Alice dreamed about creating a world of her own. For Ben and me, Walt Disney World was that special world of our own. Disney films, toys and memories still give me that much needed opportunity to fantasize, but also help me to sort through ugly experiences that come with caregiving and loss. It is so important for caregivers to identify and retreat into the things that provide comfort, insight and perspective, even if it is a momentary escape from the comfort of your sofa. I continue to find inspiration and insights as I look for a new happy ending and search for a new prince.

“I do love the whimsy and fantasy of Disney… although I find comfort in …wishing wells and fairies with pixie dust, my life and decisions are quite grounded in a reality that was… anything but rainbows and magic. Click To Tweet

Here are two great phrases uttered by the March Hare that I wish I had said often, and I pass along to other caregivers, with the hope that it will help you to avoid unnecessary and sometimes downright outrageous conversations with well-intentioned people who are not involved or informed but have a lot of bad advice that they are eager to spout.

“I have an excellent idea, let’s change the subject”- March Hare

If you don't think, you shouldn't talk, March Hare

OK, you might want to say that more tactfully, but think it just like this and at least you’ll have a chuckle in your head!

As I emerge from grief, I don’t always recognize myself or know exactly who I am or who I want to be. I feel like I’ve changed. But, I can finally say with some pride that, despite my tears, I faced and handled some very difficult situations with and on behalf of Ben and my dad as they took their journeys from this world. I also challenged myself and learned that I can be strong and brave, I just do it with a lot of tears! There were times of conflict with family and friends, but I honored the wishes of my dad and Ben, and I did what I believed was best and was most consistent with their wishes.

I know that my loved ones have always wanted the best for me and that means the world to me. But I also realize that as much as I have gratefully relied on others to guide me when I run in circles, I have to move forward at my own pace, shaping and fulfilling my own dreams on my own terms. I have to determine where I want my life to go. And, I am fortunate that I am surrounded by people who are cheering me on. I do have some inner struggles, and, in a few cases, relationships that I do care about have been strained and tested, and that has not been easy. But, as the White Queen said to Alice, “You cannot live your life to please others. The choice must be yours, because when you step out to face that creature, you will step out alone.” This was also true for Ben and my dad as they faced death, and it is true for all of us.

In the live action Alice in Wonderland, Alice must slay the Jabberwocky to defeat the evil Red Queen. As caregivers, we have our own Jabberwocky to defeat, as we tackle trying circumstances and help our carees battle the demoralizing and painful effects of illness. Though we cannot defeat death, we are fierce in our battle to slay many obstacles and provide as good a quality of life as possible for the carees whom we love. Then, grief becomes our Jabberwocky, and we slay it as we learn to co-exist with it and not let it defeat us as we emerge and continue to live in ways that honor the loves we had and lost, and that do justice to ourselves.

April 22, 2018

Hakuna Matata- Not Always

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized 0 Comments

The Lion King
Copyright ©1994 Walt Disney Pictures

If you read this blog regularly, you know that I like to put things in a positive perspective, even while recognizing the challenging and not so pretty aspects of caregiving and the obvious sadness of grief. After all, the bad feelings are normal and I think that embracing them is healthier than suppressing them. That said, seeking professional help or a support group as a way of dealing with them is something that I have done and that I encourage when you’re beginning to wonder if what you’re experiencing is not “normal” (or at least “normal” for you) and is affecting your ability to function.

I take so much comfort and find enlightenment and inspiration from Disney quotes, and they have guided me through caregiving and grief. But, there are always times that “Hakuna matata” has eluded me, and I’m feeling that right now. I know, it is a kind of coping skills anthem, but when I am at the height of anxiety, hearing “Hakuna matata” antagonizes me. It makes me want to summon my inner Scar (click here for that post).

Last week, I was under the weather with a cold, and maybe that has put me in a funk of sadness and anxiety. Walt Disney said “Why worry? If you’ve done the very best you can, worrying won’t make it any better.” While I can’t argue with Walt, I lack his confidence, and I’ve always worried that my best was and is good enough, especially when I was a caregiver. The truth is, I’m a worrier. I have a good sense of humor about it, acknowledging my need to worry as part of my process for sorting through issues and situations.

Of course, when Ben was struggling with ALS, the worries were real, upsetting, and frightening, without any easy solutions. In addition to the harrowing medical and emotional issues, we had to consider financial concerns, such as how we could hire private aides, where he would live and how to arrange his medical insurance and set up his finances to enable him to live with the help and equipment he needed. An added complication with ALS is that its progression is unpredictable. While studies show that most people diagnosed with ALS live two to five years, there are many people who live much longer, and although we wanted him to be here for as long as possible, we wanted that to be with a good quality of life and with financial security and medical coverage. I worried about Ben’s quality of life, particularly in a facility, which would have been inevitable once he was on life support. I did not like to discuss these worries with Ben because I did not want him to worry. I know he did, and sometimes we discussed it in roundabout ways, but we also procrastinated and ignored the elephant in the room. While it did not help to worry, sometimes it was all I could do. I guess it was a form of anticipation, because when the crises arose, I had often already envisioned them! There was no such thing as “Hakuna matata.”

It has been a while since I’ve felt this down and caught up in worries for days at a time. Feeling ill at least gave me a good excuse to sleep all day. Maybe being home with a cold gave me the time to dwell on things that are unsettling to me. I remembered the many times that Ben would show up at my door with chicken soup and comfort foods when I was ill at home. We always did things like that for each other. What began as a wonder is now a worry if I will ever have that again.

I need to remind myself that overall, I have felt like I am making great strides here in the world of the living, coexisting with my memories and the presence of Ben in my life. I am happy at my new school, I see my friends more often, I am frequently at the theater and I even travel. Even though I had some struggles with loneliness during my recent excursion to Washington DC, I am glad that I let myself live that dream of seeing the cherry blossoms in bloom and I continue to marvel at the beauty in the photos that I took, which definitely is something that Ben and I would have done, too. These are new good memories, but they are overshadowed by being memories of myself alone. I feel haunted by reminders that I am alone and I worry that I will always be alone. That set me thinking about how disheartening online dating has been. Will I ever meet someone new, who understood me the way that Ben did? Will I have a future filled with that kind of love? Ben used to love to see elderly couples holding hands and he would say that one day that would be us. As his ALS progressed, we both got emotional when we saw these couples because we knew that it would never be us. I guess I was reminded of that watching coverage of Barbara Bush’s funeral, along with the footage and stories of Barbara Bush and President Bush and their long and beautiful love story. I’m still grateful for the time that Ben and I had and that despite the tragedy, we shared a most special and devoted love in his last weeks in the hospital. Still, we were cheated.

Recently, talking about health care proxies and wills got me thinking about how I don’t have children to take care of these things. I have great friends, and I am so fortunate for that, but I do not have obvious answers to these concerns. When should I retire? Where will I live? How will I live? I’m not naïve. I realize that everyone has to make these difficult decisions and think about these issues, whether they are single or a couple or family. I guess my worry sets in when I wonder if I will be making all of these decisions alone. Mary Poppins is right that, “Worrying won’t help anyone.” Still, I worry. I guess I have not yet adjusted to being on my own and yet, I do, intellectually, know that I will be fine.

I’m always pleased to share that I have been working through grief and still processing the entire caregiving experience with positive and insightful reflections that are not simply Disney whimsy. But, for caregivers who might feel alone in their setbacks and difficult times, I want you to know that these times happen for me, too. It’s not all “Hakuna matata.” I’m okay with that, as much as I wish I didn’t have the struggles. I think that I understand about myself that worrying has always been part of my way of dealing with things, and sadness is bound to happen. The important thing I try to remember is that I’m living, trying, doing and hopefully, creating or revealing a future that will bring me contentment. I never underestimate the little joys in life, and when I’m ready to get out of the funk, a phone call, email, conversation, and the arrival of spring flowers are distractions from worry that are helping to lift my spirits. And, there’s always pixie dust.

Ben at the Animal Kingdom with the Tree of Life in the background. 2006- pre-ALS, carefree and doing his best Ricky Ricardo “Babaloo” impression.

April 15, 2018

Wisdom From Olaf About Caregiving and Love

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiver, caregiving, Disney, Frozen, grief, Lou Gehrig's disease, Olaf 0 Comments

Olaf had to come home with me!

I recently attended Frozen, the new Disney musical on Broadway. Frozen certainly became a phenomenon among Disney films. The Broadway version does not disappoint. It is magical, wonderful and beautiful to watch, with clever surprises along the way. I would love to have seen it with Ben. I have loved going to the theater since I was a child, but Ben had never been to a Broadway show until he met me. He came to love shows and when I went through his things after he left this world, I was truly touched to see that he kept all of the Playbills and ticket stubs from the many shows we saw together. It has taken me a while to truly love going to the theater again, because I went through feelings of guilt for claiming the freedom to participate in things like theater, which I could not enjoy when I was caregiving, and I simply missed going with Ben. But, now I again find great comfort, delight and inspiration from going to the theater. I do notice that I often look at productions through Ben’s eyes. I imagine what he would think, what I would say to him, what inside jokes would be triggered. It’s what I need to do, at least for now.

Frozen has romance, royalty, family strife, tested loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?! Seeing the show triggered that when I saw the film, it struck several chords for me as a caregiver, and I am using images from the film in this post.

Of course, Let it Go has become an anthem for finding all kinds of strength. I know that it is healthier, and I feel better, when I can let go of anger, of bad memories, and of resentment. When I was caregiving and in grief there was a lot of that, for many reasons. I must admit that letting go, in general, is not always easy for me. I have found, however, that it is better to put my energy towards gaining perspective that allows me to let go of the things that are over and done, that I did not create and that I cannot change.

For me, it is Olaf, the sweet and goofy snowman who so beautifully summed up my caregiving experience at its core, when he pointed out to Anna that, “Love is putting someone else’s needs before yours.”

“Love is putting someone else’s needs before yours.”- Olaf, Frozen

We all know that we have to take care of ourselves. We have also heard that if we don’t take care of ourselves we will not be able to take care of someone else. After all, if we don’t take care of ourselves, we might become ill and will then be incapable of caring for someone else. I cannot tell you how many times I was told the airplane analogy of putting on your own mask first, so you could then help someone else. And yet, as caregivers, we do not always take care of ourselves. In fact, we rarely take care of ourselves. Hearing that advice became irritating because I knew that I should take better care of myself, but I also knew that I couldn’t. Why? Crises occurred, I was exhausted, there was not enough time, and the list goes on. Ultimately, love meant putting the needs of my dad and Ben first.

When my dad and Ben were ill and needed help, their needs were immediate. They had terminal illnesses. If my dad needed to go to the Emergency Room or if Ben needed to shift his position in bed or needed to use the commode, it didn’t matter that I needed sleep to be able to function at work or if my back hurt. I would find a way to catch up on sleep. I would go to physical therapy or take a pain reliever. Their needs could not be postponed.

I’ve written about the stresses and emotions of caregiving. I’ve explained that my loved ones were very concerned about me because I was running in circles, particularly when I was simultaneously caring for my dad and for Ben. It was my routine, my normal, and I just went with it. I do remember that during the time I took family leave, I enjoyed my time on the train, on the way to and from the hospice, because for those 5 hours every day, I was by myself, even though it was with phone in hand to manage any issues that arose during my commute. Enjoying my thermos of tea on the train while listening to music became my way of taking care of myself.

I don’t think that I realized at the time that I did not really have an opportunity to deeply feel the grief of losing my dad. I was taking care of Ben, who was also struggling with this loss because he loved my dad. Also, the death of my dad was a scary and sobering reality check for Ben, who lived in denial of that eventuality. For me, it was one step in the sad forecast of my lonely future. I couldn’t grieve with Ben because I did not want to upset him, but I also could not grieve on my own, because there was too much to do and I was working full-time. At times, I did feel like I was melting down, but I did not see any options, and I was so immersed in handling my caregiving tasks and full-time teaching that I just kept plodding along, with a few pity parties and venting to friends and family in conversations or emails and texts. Sometimes that was a distraction from the grief, but it also meant that the grief simmered within me.

I have to explain that although there were times when putting my own needs aside was the obvious and the only solution, it also caused frustration, sadness and anger. I felt depressed and lonely and frightened, and Ben and I were not always patient with each other, which led to resentments on both of our sides. Unfortunately, although I recognized that I was near a breaking point, I could not convince myself to shift my priorities in a way that changed my routines and accommodated my needs. I write this because saying that love is putting someone else’s needs first does not mean it is always done easily, graciously or without inner conflict. Everyone’s feelings matter, but they have to be prioritized. Even in retrospect, despite what reason may have indicated, my heart knows that it was the right and only thing to do.

“Some people are worth melting for.”- Olaf

Olaf was so right when he said that, “Some people are worth melting for.” While putting my dad’s and Ben’s needs first sometimes caused some melting, it was in the literal letting go of them that I truly melted. But, love meant supporting their wishes.

I did not like to see my dad in a hospice, although he got such wonderful, compassionate care. I melted as I saw him slipping away, but letting him go as he wanted, and very peacefully, was more important than my desire to keep him with me on this earth.

Love meant dealing with the fact that Ben would have gone to a facility if he had chosen to stay on life support. With a tracheostomy and feeding tube, Ben would have needed 24/7 nursing care that could not be accomplished at home. It was a bleak option, but his needs were the priority and as much as it devastated me to think of him in a facility, and it devastated him to accept that he would not be able to be at home with me, we both had to come to terms with that reality. I worried about his being alone while I was at work. I worried that the staff would not be as attentive as I had been. I did not share those worries with him, but I melted when I thought about it.

When Ben decided to go off life support, I melted because I did not want to lose him. I stood by his decision to go off life support because only he could decide how to live and die with ALS. It was a conflict for me because although I was not prepared to lose him, I was relieved that he would no longer suffer with the disease. I was at his side the day he left, we said our vows, and he was surrounded by loved ones and music. It was worth my melting for him to feel loved and comforted as he left this world on his own terms.

I loved my dad and Ben with all my heart. Losing them, particularly so close in time (a year and a half), was very difficult. But, it was worth melting to have shared the love that we did and to let them go and find peace on their terms.

I would like to state the obvious and suggest to caregivers who are reading this that you take care of yourselves and put yourselves first. But, we all know that won’t always happen. Maybe sometimes. Try. Plan. Fantasize! Taking care of yourself does not have to be big events. Take moments for yourself, even if it is a mental escape, or a nap, or a quiet cup of coffee or tea on your way to an appointment! The thing is that, as caregivers, just like Olaf, you know and are experiencing and demonstrating the true meaning of love.

Walt Disney World’s Hollywood Studios (July 2014)

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