grief

June 9, 2018

How Donald Duck’s Birthday Triggered My Reflection On Grief

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, Disney, Donald Duck, grief 0 Comments

Happy Birthday, Donald Duck!

Donald Duck’s birthday prompted me to revisit the post I wrote on this momentous occasion last year. At the time, with summer vacation right around the corner, I was propelled into the heartbreaking memories of debating with Ben how his caregiving would be done when school let out, and having those arguments negated because the summer of 2015 was spent at the hospital, where Ben ultimately succumbed to ALS. Those difficult memories have cropped up again as summer approaches. Since I read last year’s post, I have been reflecting on how my grief has shifted over these three years.

In 2016, as the first summer without Ben approached, I felt overwhelmed by the devastation of reliving every moment of time leading up to and including Ben’s time spent in the hospital, in which the end of summer coinciding with the end of his life. Of course, firsts are always difficult. I was consumed with worry about how I would feel during my first summer in many years without any caregiving responsibilities and without school as a distraction. Caregiving was pretty much the only thing on my mind, so I compiled my journal of Disney quotes and started writing this blog, which was actually very helpful as I sorted through the experience. It gave me a sense of purpose to think that maybe my words and experiences would help other caregivers. This, in itself, was an enlightenment. Although I wished that Ben had never had ALS and needed me as a caregiver, I found that I am a caregiver at heart and I am most content caring for and helping others. Unfortunately, sometimes this has proven to be a convenient way to avoid taking care of myself, but that’s a whole other blog! Since going to the theater is my favorite activity, I got tickets for all of the Broadway shows I had been wanting to see. I was excited at the prospect of seeing the shows, but, once there, I found that I could not truly enjoy myself. I missed Ben. I felt guilty about doing things that I couldn’t do when I was taking care of him. I had a lot of guilt about living my life when he was no longer here and we couldn’t not enjoy our life together. Although I had the freedom to do things, I did not feel the zest of “reclaiming” of my life that people told me I should feel. I wanted Ben to be here. I socialized more, but Ben was really the only thing I wanted to talk about. After outings, I often returned home in tears because home was so lonely without Ben. I went through motions, trying to convince myself that I was doing fine, but fighting myself often led to feeling worse. The fact was that embracing my life felt daunting, wrong, and somewhat impossible.

I spent that first summer dreading and planning how to spend the first anniversary of the day Ben left this world. I decided to make a video tribute to Ben for the blog and I pored over our photographs and videos. It kept me very busy and made me feel good to do this for him, for us. I bought a couple of computer programs to help me with the task, taking pride in the knowledge that Ben would have appreciated my mastery of the software. The anniversary day came with many tears and my keeping a low profile, except for sharing the video with friends, family and some of the special people who took care of Ben. I remember that the day after that anniversary was almost worse than the actual day. I spent so much time bracing myself for that anniversary, anticipating the sadness, making a plan to honor Ben. The next day, I was lost and I was miserable. I was unsure of how to act. Would people not want to hear about Ben and my grief anymore because that one-year marker had passed? What was appropriate in terms of talking about him? What was “healthy?” I knew enough to ignore the people who told me what I “should” or “had to” do, but I didn’t have any answers of my own. I’m a person who wears my heart on my sleeve, and I just had to let my life unfold, understanding that there would be good and bad days ahead.

The second year passed- I became more immersed in supporting other caregivers, particularly those caring for people with ALS, through my blog and various online support groups. I embarked on a certificate program to become a caregiving consultant. I did a lot of reflection and realized that I am most comfortable defining myself as a caregiver, so losing my dad and Ben also signified the loss of much of my identity. In many ways, the second year of grief was harder than the first, because the first year becomes such a fog and the loss is new and raw. In the second year, it seemed like I felt the sadness more intensely. Since I had formed some new routines, when a wave of grief hit me and threw me off course, I had a very hard time getting back on track. There was a constant loneliness, even though I was surrounded by people whom I love and who love me. I assessed everything I did, trying to prove to myself that I was respecting Ben, grieving appropriately, and coping well with life. The truth was that although I was active, going to the theater, seeing friends, writing, volunteering, and I even created a profile for online dating, I was also floundering. I was tiptoeing in the world of the living without really delving into it.

It was during that second year, last June, when I wrote Donald’s birthday post, and I could not shake all of the memories of the summer of 2015, when Ben went into the emergency room and everything changed. I found myself wondering if I was grieving too much, crying too much, dwelling on Ben too much. Still, I was determined to have a productive and positive summer and take grief with me. I made plans to travel to spend time with good friends, something I had not been able to do for several years. I was excited about it, and I did have a wonderful time, but Ben still had a huge presence. I talked about him frequently and kept him close, which sometimes made me miss him even more. I even bought things simply because he would have liked them, bringing them home only to face the obvious truth that he was not really here to enjoy them and then dealing with another setback. But, I have only come to understand in retrospect that I could not venture forth without him.

On the second anniversary of his “leaving,” as he called it, I reposted the video I made the year before. I decided to stay home and keep a low profile. Sadly, as it turned out, I had to attend the funeral of my best friend’s mother, who was often like a surrogate mom to me. It was a day of loss and tears but also of thinking of good times.

This year, heading towards the third anniversary of Ben’s passing, I am facing the summer with less dread. I still think of this time of year in terms of the markers of Ben’s battle with ALS, and I drift back to those memories and give into the bouts of sadness, but as Dory taught me, I just keep swimming. I accept that this time of year will probably always have a tinge of melancholy. However, with more enthusiasm and confidence, I once again made plans that I am looking forward to. I do not feel the same level of guilt about enjoying my life, although I still grapple with the knowledge that adventures would be better if Ben was still here. Some of my plans include things that Ben and I wanted to do together, like a penguin encounter at the Georgia Aquarium. I’m a little wary about it because it stands to be emotional, but I also want to honor our relationship and the things that were special to us. I guess the positive thing is that I am not letting grief or guilt hold me back from living. I am not yet comfortable being on my own, and still often refer to Ben and our life, but I am out in the world having new experiences. Maybe on some level keeping him so close keeps me in our relationship, but I fully believe in my heart that Ben is always watching over me, which gives me comfort. But, I am also creating new wonderful memories. I am not worrying- at least not yet- about how I will spend the third anniversary of Ben’s leaving. I have come to realize that I cannot plan my emotions. The day may be easier or harder than I anticipate. I will let my heart guide me and not fight myself. There will be no right or wrong about what I choose to do or not to do. As I reflect on the past three years, I see that I have learned to coexist with grief as I respectfully give grief its time.

[bctt tweet=”As I reflect on the past three years, I see that I have learned to coexist with grief as I respectfully give grief its time.”]

I would not have predicted that Donald Duck’s birthday would provide an opportunity for reflection and insight into my grief, but reading my post from last year and once again poring over our photographs, with a combination of smiles and tears, let’s me know that I am doing ok. I still cry, I still feel sadness, I still miss Ben, and I am okay with that because those feelings speak to the wonderful times that we have over sixteen years.

Donald Duck hangs out in the Mexican pavilion at Epcot but I don’t know how much Spanish he spoke!

The Disney magic must never be underestimated. When we were at Walt Disney World, Ben and I stepped into a carefree fantasy that helped us to, at least momentarily, transcend the challenges of ALS. Our photos, some of which I share here, were so important to Ben as his ALS progressed. He loved to relive the healthy days, but he also examined his physical changes as a result of ALS. The photos were essential to me in the early stages of grief, particularly when I wanted to keep him as close to actually being with me as possible. They remain a treasured and positive part of my dealing with the rough times of missing him. I never lose sight of how lucky we were to have a special love and to share this love of Disney that always shed much needed pixie dust on our lives. Donald is part of those special memories that comfort me.

So, with gratitude and joy, I say Happy Birthday, Donald Duck.

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.

[bctt tweet=”“I can’t go back to yesterday, because I was a different person then.”- Alice”]
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.

[bctt tweet=”“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”]
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.

[bctt tweet=”“That’s the trouble with me: I give myself very good advice, but I very seldom follow it.”- Alice”]
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.

[bctt tweet=”“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.”]

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 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)

January 13, 2018

For my Mom

abby_admin Grief, Uncategorized Cinderella, Disney, grief, Memories 2 Comments

We were always Mickey Mouse fans!

Today, January 13, 2018, marks 26 years since my mom, Sandra, or Sandy, left this earth. There is not a day that I don’t think of her. I talk about her often, and so much so that some people do not realize she’s gone, or for how long she’s been gone. I don’t know if that is good, or “healthy,” but she is so much a part of me.

This is never a great day. To the people who say that I should not be so affected after 26 years, I say that we all handle things differently. Dates are important to me. I choose to take these anniversary dates to remember my loved ones. I don’t anticipate how I will feel, I don’t punish myself, I don’t feel obligated to act any particular way. But, every year on this day, I do tend to wake up with the vivid memory of how my dad called me and said he thought my mom had died and the ambulance was on the way. His follow-up call confirmed it.

This year, again, I did wake up to those memories of the phone calls from my dad telling me that my mom died. There were tears. However, today I chose to celebrate a special memory. My mom met me in London during a summer that I spent studying there. We went to the theater every night. One of the shows we saw was Stephen Sondheim’s “Follies.” We loved it. I saw that there was a screening today of National Theater Live’s performance of this show. It seemed like a perfect way to remember my mom.

The thoughts of losing and missing my mom did hover over the day. It didn’t help that I found this production particularly dark and depressing, even for Sondheim. But, I also thought of fun memories of our times together, in London and in general. Part of me can’t help but lament the time that we lost and that my mom never met Ben. But, I never lose sight of how lucky I was to have my mom. She was a truly selfless, beautiful and very adorable person and mom. In this clip, Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it and they must honor her. This scene touched my heart. I cherish my memories to keep my mom’s spirit alive and honor her. Of course, my love of Mickey Mouse and all things Disney always make me think of her, but I hope that in some small way I have followed her example. I do know that she is always with me.

In my mom’s memory, I’d like to share some details about my mom and some of the important ways in which she influenced me, even in my caregiving days. This is a reprint of the post I published last year on this day:

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.

My mom and I were very close, or, as everyone said, 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 had so much fun. Frankly, I could not imagine living after she died. I loved her and she loved me, unconditionally.

When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as my grandma, who lived with us, 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.

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

I realize that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after my grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with my 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. For a change of pace, I often brought home treats from Zabars or other NYC places. 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. 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.

As time has passed, I think mostly of the wonderful memories of my mom and our time together. So much who I am and what I do reminds me of her. I get my Peter Pan-like inner child spirit from her. You won’t be surprised that Disney played an important part in our relationship, too. One of my favorite memories is when she called me from Walt Disney World exclaiming, “Abby, I met Mickey!” Another is watching and giggling through “The Little Mermaid,” especially because my grandma was straight-faced and completely baffled by our amusement.

I proudly say like mother, like daughter!

I am not ashamed to say that I still miss my mom terribly. It remains a wound that is easy to open. When watching movies, I often cry at the mere mention of mother daughter love or the passing of a mother, and Ben intuitively handed me tissues in these instances before he even saw tears. Of course, that made me laugh through my tears, and that was a good thing. Ben never knew my mom, but he knew how important she was to me and it touched my heart that he always marked in his calendar her birthday and this anniversary and he would plan something Disney-related, like our date to “Beauty and the Beast” (click here for that post).

I enjoyed the movie “Brave” and feistiness of Merida as she searched to find herself. Fortunately, I never had big issues with my mom. But the scene in this excerpt made me cry because it says it all. Even after 26 years, I just want her back. I have struggled, I have adjusted, and I have had to accept her death. Now, I take comfort in knowing that she’s always been with me and always will live in my heart. On this day and always, I love you, Mommy.

January 6, 2018

Heartwarming Thoughts When I’m Feeling “Frozen”

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

How could I not think about Frozen on a day like today? It’s a wonderful film with romance, royalty, family strife, tested loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?! I’ve written before about what Olaf knew about love and melting (click here to read that post), but a day like today once again brings Olaf’s lessons to mind. The sweet and goofy snowman continues to sum up my caregiving experience at its core.

On this freezing cold day in New York City, amidst several freezing cold days here, I could not help but reflect on days spent trying to help Ben to keep warm. As I am writing this, I am sitting in Ben’s huge old sweat pants from Walt Disney World, along with his Mickey Mouse thermal shirt and Walt Disney World Christmas sweater. My apartment is unusually chilly- normally it feels like a sauna, so I’m happier like this. And,I like to wear Ben’s clothes. They feel cozy and like he is wrapping himself around me, and that warms my heart. Unfortunately, it was not easy to keep Ben warm.

Before ALS, Ben and I both liked the cold. Other than Walt Disney World, Vermont was our favorite getaway, especially in winter. Once ALS progressed, the cold posed challenges and problems for Ben. It was harder for him to move when he was cold. I think it may also have affected his respiratory comfort, though his significant decline in that area began in the warmer weather.

Our apartment is very drafty and Ben could not tolerate the cold. I bought big plastic insulation tarps and put them over our windows. They did help but it looked terrible and they came loose frequently, sometimes requiring middle of the night fixes. We did what we had to do. We became accustomed to living crisis to crisis in an apartment that was a disaster.

“Some people are worth melting for.”- Olaf

Most blankets felt heavy on Ben as his strength diminished, and piling on sweaters made movement even more difficult than it had already become due to the ALS. We found a couple of quilts that were the size of a throw, which made it easier for him to manage. We could not sleep under the same blanket because any tugging or shifting made him uncomfortable. A blanket may seem like a very minor accommodation, but it symbolized relationship changes that took an emotional toll. Suddenly, the life we enjoyed began to change and foretell a sad future, and the way we related to each other changed in very profound ways as we shifted from being husband and wife to patient and caregiver.

I am resourceful and a born shopper, so I was always delighted to find solutions, even if they were temporary. Ben was very skeptical of the little space heater that I brought home one day. I plugged it in as he said it wouldn’t help. It did! He loved that space heater!

I made a blanket of some of our favorite photos from Walt Disney World, and a microfiber towel as well. For the days that Ben did not get to his computer, or felt chilly, he was always surrounded by the photos that he loved so much.

Photo collage blanket.

Photo collage towel.

Dressing for cold weather, even within our apartment, also required creativity. Ben loved insulated puffer vests because they kept him warm without bulk and heaviness, and also gave him some freedom of motion in his arms. He liked sweatshirts that were zippered hoodies because they were easier to put on and to remove, even though he needed assistance to do so. He did find adaptive zipper pulls that he liked. These gave him some independence and that was important for his frame of mind.

Fleece sweaters were often a great option because they were lightweight. Waffle/thermal shirts were cozy for him and allowed for easy layering. He was amused by the camouflage shirts I found for him because they reminded us of how much my dad, the Marine, loved his camouflage! Even as the temperatures dropped, Ben still wore his favorite regular tshirts underneath his warmer clothes. He loved his tshirts. They keep me warm now in the tshirt quilt that I made from them.

A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

It was definitely a challenge for both of us to be comfortable in the same space. I was warm or Ben was cold, but Ben needed to be warm. Physically, the apartment was a mess, with supplies accumulating, space shrinking, and furniture moving according to his needs. At one point, my dresser had to be moved to accommodate his chair, and it blocked the closet. For several months, I either wore what was in the drawers or whatever my hand could reach in the closet. Now, I look back and laugh at the chaos that was our life. Then, we lived crisis to crisis, and despite our frequent ability to see the hilarity in the situations, it sometimes left us feeling helpless and hopeless.

Today, wearing Ben’s clothes and knowing how miserable he would be in the chill, I am feeling a little melancholy. It feels like a long time ago that these were my caregiving responsibilities, and it also feels like just yesterday. I miss him. I cannot deny the inconveniences and the emotional pain we both experienced. Ultimately, Ben’s needs unquestionably came first, and a little melting was a small price to pay. It’s taken me all this time to rebuild the snowlady that I am. I realize that I did find great satisfaction in being able to help Ben and I take pride in the love we shared and the trust he had in me. My heart is warmed to know that now he is free of the constraints of ALS.

Walt Disney World’s Hollywood Studios (July 2014)

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