ALS Awareness Month

Caregiving and ALS: Recognizing the True Villain

Walt Disney World, Pirates,Fireworks,ALS,Halloween

At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee. They are probably the only villains we met!

May is ALS Awareness Month, and although ALS is always on my mind, even in the days since I lost Ben, I like to think that all of the Awareness months bring new information, insights and reflections into view. This post is probably a long time coming, but this seems a good time to address new issues and aspects of ALS and caregiving. In many posts I have mentioned that while Ben was fighting his battle against ALS, anger, resentment and profound sadness affected us. I would say that we both believed in the quote from the 2015 live action Cinderella to “have courage and be kind,” but it did not always happen. I have read many comments from caregivers of people with ALS and other illnesses expressing aggravation and devastation from the hurtful things their carees say to them. Likewise, they are upset with themselves for the ugly things they have said to their carees. I have not really delved into this topic, mostly because those conversations with Ben feel very unloving and uncharacteristic of our relationship and what I want to remember, and I don’t want to speak for Ben and potentially compromise his integrity. But, having suffered my own battle wounds as a caregiver, and having questioned my caregiving abilities because of incidents with Ben, I felt that sharing my experience might offer some perspective and consolation. To do this, I believe it’s time to invoke the Disney villains!

It must be said, and reiterated, that it is almost incomprehensibly difficult to need a caregiver, but it is also profoundly difficult, in a different way, to be a caregiver. Although the needs of a caree often must take priority, the challenges both face must be considered.  Ben was diagnosed with ALS a couple of years after my dad was diagnosed and living with cancer. In my mind, there was no question that I would be their caregiver, though I cannot honestly say that I knew exactly what caregiving would look like. After his diagnosis, Ben told me that if I wanted to leave and have a different kind of life, that he would understand. I would never have done that, though many people thought I should, for a variety of reasons. To this day, I do not regret my decision. The only regret I have is that Ben and I did not communicate better. I hope that if this post resonates with any caregivers or carees, that they take to heart how crucial it is to have those uncomfortable and sometimes heart-wrenching conversations and to express yourselves before the ugly emotions and language spew forth, so that you can speak to each other respectfully, tactfully, and lovingly. In the case of ALS, communication itself becomes increasingly impeded, so those opportunities for self-expression and sharing should not be postponed.

Hold your tongue! Lady Tremaine, Cinderella’s Stepmother, Cinderella (1950)

Ben’s ALS progressed slowly, which was a good thing. However, it allowed us to procrastinate on difficult discussions and decisions about what kind of home health care we would need, how we could organize our lives financially and practically, as well as emotionally, and even where he would live. When these subjects were raised, either by our loved ones or by his medical teams, Ben’s attitude was that these things were going to happen way down the road. I admired his optimism even when I was frustrated. I worried about these things, but I always reasoned that he was dying and if this was his way of processing these things, that I had to follow his lead.

After nearly four years, despite his denial, we hit that bump in the road where Ben’s needs were increasing, and I was struggling to juggle a full-time teaching job while being his full-time caregiver and my dad’s. To a large degree, I felt that Ben’s denial kept him healthier. On the other hand, because he did not concede to his limitations, he did not admit that I had to do much to accommodate him, which was not true, and I held my tongue and seethed rather than express my concerns about how overwhelmed I felt.  Unfortunately, it came out in bad moods that annoyed Ben because he did not understand their source. It was becoming more and more of a battle to juggle caregiving with work, and to feel that I was slipping away from my friends, family and even myself. Frequently, when we were awake much of the night, I went to work exhausted. Sometimes, on those nights, I would cry while I was assisting Ben, which upset both of us. Of course, it was never his fault that he needed assistance. We both knew it was exhaustion but we had no solution.

When there was not an actual incident, I lived with the worry of one. While Ben was able to do some walking, I went to work every day waiting to get my daily text that he was okay and at his desk and I spent the rest of the day hoping that there would not be a problem. There were many times that I had to leave school because he was having a crisis, either falling, stuck on the toilet, or suffering severe anxiety for which he refused medication.

In one conversation about the difficulty I was having with full time work and full time caregiving, he told me that I did not do very much and what I did was half-assed. I think that even he knew this was true, but it was not easy to hear and it cut me deeply. He asked me to list what I did for him, which I would not do, saying that I should not have to, and I ended the discussion, leaving both of us feeling angry. Clearly it had a strong impact, because I remember it several years later.Better communication about our feelings would likely have helped, even if it could not change our situation. Intellectually, I knew that Ben did greatly value and depend on what I did for him, and he loved me as much as I loved him, but he did not want to admit what was happening to his body, and he took it out on me because I was the closest person to him. He minded his temper more with his daughter because, unlike with me, he admitted that he did not trust that her support was unconditional and he knew that it was measured. There were certainly times that I dropped the ball or was not as patient as I could and should have been. With our own struggles and needs, it became impossible to be objective. We both felt anger, aggravation and helplessness and the reality was that both of our feelings mattered even when we couldn’t meet all of our needs. There was so much love over those years, and it still disturbs me that these memories still hover over me, but it would be dishonest, inaccurate and self-deceptive to ignore them.

Words are important, and Ben got impatient when I was irritated that he did not think he had to say thank you to me. To be fair, sometimes he did, but he had to deem it a worthy occasion. It may be a simple phrase, but he knew that it meant a lot to me, and that I felt that his not saying it was sending me the message that he felt entitled. Rather than argue these things, I withdrew into myself rather than dispute Ben, because, after all, he was dying and had his own inner conflicts. I wrote in my journal and vented to a social worker at the ALS local chapter, to his doctor, and to my friends and family. But, I also felt paralyzed, so nothing changed. I have to say that on so many levels I felt honored to be the person Ben relied on to be his caregiver, but the stress of his worsening condition, lack of acceptance of it, and our reluctance to admit and address our feelings and fears, led to a lot of sadness and resentment.

There were weekends when I simply needed time to myself. TGIF was not something I really looked forward to. Without question, I took care of Ben’s needs- prepared and fed his needs, washed him, transferred him to and from chair and commode, and whatever else needed to be done- but I was sometimes distant. I knew I was aloof and only doing what had to be done, with little conversation or affection.  I stayed by myself in one room and left him in the other to play on his computer or watch television, but I could see and hear him. I knew he waited all week for time with me on the weekend and I felt guilty that I just could not be there emotionally. I knew that I was collapsing and I did not know what to do. Ben did not want to hear it. Staying in a quiet room staring at the television or my laptop was the way I coped. At those times I did wonder if I was a good caregiver. When Ben felt insulted, annoyed or impatient when I was distant, I seriously questioned myself as a caregiver. It’s taken me a long time, and a lot of advice, to reconcile my feelings. I still think about it though, particularly as COVID19 has us all homebound.

In my Disney way, I feel it is necessary to say that there was pixie dust, as Ben and I did find many ways to show each other our love and gratitude. When he did have some private care home health assistance, he sometimes texted me that he had asked his aide to stay an extra hour or two, so I could stay out for a while. He did try to find back-up assistance when there was an event that he knew I really wanted to attend. I kept Ben laughing and smiling, with my Vitamix concoctions, my dramatic presentations of shopping I had done for him, my surprise decorations around the apartment and little gifts, including snowballs after a storm. He knew that I would make the phone calls and write the emails to get him what he needed. There were so many loving gestures that showed the real Ben and Abby, but they were sometimes overshadowed by darker occasions that resulted from our Jaberwocky that was ALS.

Get to the part where I lose my temper! –Red Queen, Alice in Wonderland

One of the physical realities we faced was that I suffered a broken shoulder in 2012 and my back issues were amplified a few months later after a car accident with my dad (he was fine, thank goodness). Fortunately, Ben was able to walk on his own at that point and his ALS had not progressed drastically. However, even a year or two afterwards, when he did need more assistance, transferring Ben frequently was physically difficult, compounded by the emotional toll on both of us. On many weekends, Ben kindly stayed in the bedroom so I did not have to yank his chair across the apartment several times. But, there were times that it was unavoidable. Once, after getting annoyed with me, he asked me to transfer him back to his chair, minutes after asking me to put him into the bed. I felt helpless and irritated, and I asked him why he had to transfer so soon and his response was, “so I can make you as miserable as you make me.” This was one of the very few times that I lost my temper and I argued with him that I gave him 1000 percent and that he was ungrateful. I left him in bed for about ten minutes to gather my strength- physical and emotional- despite his protests.

During some of these kinds of moments, Ben said that if he didn’t have a life, why should I have one? There is no answer to that other than that’s the way things turned out and life was unfair to him. It did break my heart and it still does. It also made me question if I did have a right to want to see my friends sometimes or do some of the things I enjoyed, even if it was just a casual stroll across town after school. I was terrified and devastated by what was happening to him and to our life and I felt like I was not doing a good job of finding a balance of work, caregiving and life.

The trying situations were not always with Ben. There were medical professionals with whom we did not have a positive connection. Some were judgmental and not helpful. One social worker provided misinformation and did not help Ben with financial advice and we ended up researching and completing paperwork on our own, losing a year of benefits. In the hospital, we were fortunate to have many wonderful health care professionals. However, the goal was to move Ben on and out, and I learned that as an advocate, I was easily able to overcome my shyness and lack of confidence to communicate on Ben’s behalf. I aligned myself with the most supportive and helpful team members, and his incredibly patient and wonderful doctor, and enabled Ben to navigate his circumstances on his own terms.

I was also the liaison to Ben’s family, particularly when he was in the hospital. Throughout his illness, Ben was often disappointed by their empty promises, which left me exasperated. Few questions were asked but he and I were often judged despite their lack of actual knowledge of his condition or their involvement, which was infuriating. Intellectually, I knew that it would not help the situation to lose my temper, but I could not refrain on certain occasions, like when one daughter criticized me for taking fifteen minutes to respond to a text when, in fact, I was talking to the medical staff in the hospital, and it had taken her over a week to even reply to a text telling the family that Ben had pneumonia. It helped me to set the bar very low in terms of expectations for logic as well as family support and involvement. A sense of humor also should never be underestimated. The balance in that came with handling their demands and expectations of me. I tried to establish a norm where I relayed particulars but kept my distance, which allowed me to keep them informed without compromising my feelings and enabling a lot of drama. I put aside my own resentments and was able to have meaningful conversations and a brief close connection to one of his daughters, as well. Believe me, in my fantasies and when venting, I was a veritable Red Queen!

“Life’s full of tough choices, isn’t it?”Ursula, The Little Mermaid

Communication and delivery style are so vitally important, especially when tensions are high. On several occasions, Ben said that I had no choice but to take care of him. I remember that one day, I very quietly told him that I did have a choice. I was with him because I chose to be with him because I loved him, but I could also choose not to stay with him. His first reaction was anger, and then it seemed like shock that I would say such a thing. I imagine it scared him to hear that. But, Ben also knew me. He knew I would never leave him. I knew I would never leave him.

I was furious when, without any discussion, Ben told me that he was letting go his home health aide as soon as my school year ended and that I would be his 24/7 caregiver for the summer in addition to 3 hours each weekday of home health care provided by hospice. However, he only allowed them to sponge bathe him and feed him, preferring my “cooking” and with the knowledge that they would not transfer him to and from beds, chairs and the commode. I did ask him why he made that decision without speaking to me about it and he said I had no choice because he was concerned about finances. Ben thought I should not question his needs or his plans, and indeed, he needed 24/7 assistance. Although he did not admit it, I’m sure that there was an element of fear that I would refuse to take on this monumental task, so he created a scenario where there was no opportunity for debate, knowing that I would never leave him. The truth is that I really did not have a choice but to take care of him, not because he said so, but because despite these ugly moments, I was connected by my heartstrings- we loved each other and I would never have abandoned him. But, no one wants to feel taken for granted or stuck, and that was exactly how I felt. I felt very close to a breaking point at that time, but I did not feel that I had any options. It was not a safe or good physical environment, but we were stuck in the apartment. We plodded through these times recognizing, as the song in Cinderella says, “so this is love.” Unfortunately, when there was a conflict, our communication broke down.

We never had a chance to resolve the issue of my being his 24/7 caregiver because he had a respiratory crisis and ended up in the hospital just a few days after the school year ended. When Ben spent his last weeks in the hospital, despite a staff of people to tend to him, I remained at his side for at least 14 hours a day and frequently overnight. That was not a tough choice- it was exactly where I wanted and needed to be. I was the person he depended on. I wanted and needed to be that person. The tensions we had experienced largely disappeared. As he neared the end, it was all about love and how much we appreciated each other.

After Ben died, I heard kind things from so many people about what a good caregiver and how brave I was. I didn’t see it. More than that, I struggled with whether I really was a good caregiver if Ben didn’t think so, as he’d said in these worst moments. I wrote in a previous post about losing my identity, and this was one way it surfaced. I have come to realize that there was a Ben and Abby before ALS and a Ben and Abby after ALS, and in some ways they were not the same. Our relationship shifted from husband to wife to patient and caregiver. There were fears, physical and emotional pains, and challenging circumstances that brought out the good but also the bad sides of both of us.

“You poor, simple fools. Thinking you could defeat me. Me! The mistress of all evil!” Maleficent, Sleeping Beauty

As I reflect on the experiences and the related feelings and emotions, I see that it is so important to remember not to focus on the negative people and personalities, or even on the individual events. Stress, caregiving, and impending death are all things that cause tension and impact on our interpersonal relations. Vilifying people only deviated from the truly and painfully unsolvable problem.There was only one true villain in our circumstance, and that was ALS. While we could not defeat the disease, we could defeat the ugly feelings. Despite the struggles, and though we could not always acknowledge it while immersed in the experience, Ben’s and my relationship and love actually strengthened throughout our ALS journey. I choose to embrace the love that I was fortunate to receive and to give, without forgetting the realities of the big picture within the trajectory of our experience with ALS.

If you are a caregiver struggling with relationship issues with your caree, please remember that it’s been more than four years since Ben left this world, so I’ve had time to gain perspective.  It is not as simple when you are in the midst of the situation, but please try to what the villain really is and open the lines of communication, filling them with love, even if that includes expressions of frustration.  Cut each other slack- it’s okay and to be expected that nobody is always going to be at his or her best, even in the best of times.  It has taken me a while to get to a point where my strongest memories are the beautiful times we had before ALS and the beautiful aspects of caregiving when the most powerful feeling was profound and boundless love.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, It's a Small World

2011- It’s a Small World allows a wheelchair to board the boat, and since that was so easy (and, ok, there are not long lines) we road it frequently! YAY! I choose to remember the love!

A Very Loud Silence- The Project ALS Don’t Talk-a-Thon 2018

Today, May 20, is the Don’t Talk-a-Thon for Project ALS research. I am participating and donating to the cause to honor people like Ben, who lost their ability to speak because of this cruel disease, and to contribute to efforts to fund critical ALS research. Just last week, I wrote about how The Little Mermaid reminded me of how Ben struggled as his speech left him as a result of the progression of ALS. Much of this bears repeating.

It is devastating, and deeply personal, to elaborate on the impact of losing his speech, on him and on me and others who loved and treated him, but I feel very strongly that sharing these details helps to convey the physical and emotional effects of ALS and the urgent need to find a cure.

Ben was fortunate that his speech was very slowly affected. However, as the impairment grew, so did the ability to understand him. Since I communicated with him so much, I was better able to figure out what he was saying. However, phone conversations were extremely difficult. That added a lot of stress because Ben was alone when I went to work. When he finally agreed to having a medic alert device installed, there was a fear that if he activated the alarm, the response team would not understand or hear him through the speaker. Fortunately, the team also notified me if the alarm was activated, and I could run home.

Think of times that you have tried to explain yourself but your point was not understood. Frustrating, isn’t it? Imagine a day full of that. Imagine constantly feeling that. It’s not just the difficulty moving your mouth muscles and using your voice. It’s being understood, truly heard, feeling like you matter. ALS takes that away. Watching someone struggle and surrender, because they just don’t want to keep trying to express themselves, thereby losing their sense of self, is painful.

It’s not just the difficulty moving your mouth muscles and using your voice. It’s being understood, truly heard, feeling like you matter. ALS takes that away. Click To Tweet
It was when Ben had a respiratory crisis that we were both truly frightened by his inability to speak to me. He said very quietly that he was having trouble breathing, which he sometimes said out of anxiety. However, this was the first time that he was having extreme difficulty speaking, so we could not talk it through, and I had to ask him to blink if he wanted me to call 911. This event landed him in the Emergency Room at Mount Sinai Medical School. He was given a Bipap mask and I tried to read his lips.

Suddenly, teams of doctors approached me, talking about moving ahead with a feeding tube and tracheostomy. These were things Ben had always said he wanted. Just the week before this crisis, Ben had spoken to his doctor about making arrangements for the feeding tube, so this was not a shock. However, seeing him with a Bipap mask on a ventilator, and knowing that the tracheostomy was imminent, was terrifying. Once in the hospital, Ben began to rethink his choice and wanted to have the time to make a firm decision.

Doctors talked to me about the need to devise a plan for communicating with him. We had not really considered these options because until this point, a tracheostomy was something to happen down the line. I called my local ALS chapter for advice and was told about communication boards where I could point to letters and commonly used words to help Ben express himself. I brought in paper and markers and made a chart with all the letters of the alphabet. I tried pointing to the letters so Ben could spell out words one by one. It was tedious, frustrating, and tragically sad. Ben hated it. He spelled out a little and then shook his head and stopped trying. Who could blame him? He wanted me to read his lips, but with the Bipap mask, his mouth was obscured. Also, his mouth muscles were not always cooperating, so reading his lips was not always possible.

His doctor suggested a new strategy of asking if each word started at the beginning of the alphabet, A-M, or the end of the alphabet, N-Z. Based on this, we literally recited the alphabet until he nodded that we hit the right letter. Imagine spelling an entire sentence like this, and then having an entire conversation like this. Sometimes Ben got frustrated that I said the alphabet too slowly, he understandably lacked the patience to spell the words out. Ben did prefer that we try to read his lips, and we tried. Since I was with him so much, it was somewhat easier for me to figure out what he was saying, but it was not always possible. There was very little small talk. A long blink was his way of sending me a kiss.

In the hospital, there was also no ability to call or text him. And, there was no ability for him to call for help in the hospital. People wondered why I spent 16 hour days in the hospital, and stayed over at his request, but it terrified me as much as it did Ben that he could not call for help. His hands did not allow him to press the call button and the variations of the call button also did not work. The nursing staffs really were great and they did stop by frequently, but I know that I will never fully be able to understand the depth of Ben’s fear and feeling of helplessness. They were very patient with my phone calls and requests. Ben was at least fortunate to be able to nod or shake his head as they tried to determine his needs. Many with ALS are not.

Basic conversation was challenging enough, with Ben having to spell out the simplest of requests, like blankets or asking me to play a specific playlist on his iPad. But, Ben was also making very serious decisions about how he wanted to proceed in life and death with ALS. I will never forget the meetings with his medical team where they discussed his options: life with a tracheostomy and ventilator at a facility or hospice.

Ultimately, Ben spelled out this message for his medical team:

ALS

I took a photo of it and texted it to his daughter, who shared it with the rest of her family. I felt that rather than my conveying a message, she should know her dad’s exact words. I don’t really know why I kept this horrible message, but I simply had to.

Once he decided to go to the palliative care/hospice unit of the hospital, we had to choose the day that he would separate from the ventilator. I remember him spelling out for me, “When is a good day to die?” It broke my heart to write that and to have to grapple with that. Try to imagine what it must have been like for Ben to tediously spell that out. I still can’t. You can’t either. I’ve said it before and I will always stay in awe of his bravery.

In his last days, I did try to read his lips as much as possible. On the morning of the day that he left us, he asked to say our vows, and he mouthed them and his, “I do.” It is heartbreaking to think of it, and yet, it gave him joy, and it does give me joy to know that he had a beautiful last day filled with love and music.

I share this with you because learning about the actual experiences of people with ALS and their loved ones is, in my opinion, the most heartfelt and accurate way to begin to explain the tremendous cruelty of ALS and the very specific ways in which it affects patients and their loved ones.

Ben was fortunate to have had his voice for five of the nearly six years that he battled ALS, even though it was impaired. His physical voice gave him an emotional strength. When he lost the ability to be heard, he felt invisible and terribly vulnerable. Many people with ALS lose their voices very quickly and live with that feeling for several years. The Don’t Talk-A-Thon asks people to take a vow not to use their voice for at least an hour. Just an hour. Think of the trivial things that we often say over the course of an hour. Think of the many silly texts we send over the course of an hour. Those are luxuries for someone with ALS. But, those little things convey who we are and envelope our personalities. ALS robs speech but we cannot allow it to rob dignity. As caregivers, family members and friends of people with ALS, our patience, creativity and compassion helps people with ALS have a voice and feel significant.

By supporting ALS research through efforts like the Project ALS Don’t Talk-a-Thon, we can be the voice for people with ALS, and contribute to efforts to find a cure.

If you would like to learn more, participate in, and/or contribute to the Project ALS Don’t Talk-a-Thon, please click here.

I thank you for reading this post.

ALS Awareness Month- Never Lose Hope

“You don’t lose hope, love. If you lose hope, you lose everything.”Mrs Potts , Belle’s Magical World

ALS Awareness month comes to a close today, but patients, caregivers and loved ones of those with ALS continue to live with the physical and emotional effects of the disease. August will mark two years since Ben left this world, free from his struggle with the disease. I want to conclude this month by offering this wisdom from Mrs. Potts of Beauty and the Beast fame.

I have written often about Ben’s bravery and persistence. It has taken me a long time to come to understand that I was brave in a different way. And, I can honestly say that hope played a tremendous part in our lives. There was hope that things would get better and we would find innovative ways to help him eat, use his electronics, and maintain a good quality of life. There was hope that the next day would be less stressful. There was hope that each day would have some smiles and laughs. There was hope that I would remain patient. There was hope that Ben would accept that his needs were increasing. There was hope that he would have more time. There was hope that the disease would progress slowly. There was hope that he would transition peacefully.

Was it naïve to hope? Was it like my tossing coins in Cinderella’s Wishing Well? I don’t think so. To wish is to hope, and I have often written about wishes on this blog. Hope allowed me to reach for optimism. It allowed me to see the positive things, even if the big picture was not good. It allowed me to recognize and be relieved and content that one day was better than the prior one, not because the ALS was getting better or going away, but maybe because we were in better moods or successfully solved a problem. Hope allowed me to fantasize in a healthy way, remembering wonderful times and trying to recreate those and create new ones. It allowed me to be a creative thinker. It allowed me to smile, even through tears.

Hope was my pixie dust. Because I had hope, I was able to open my mind to finding ways to help Ben and to help myself. Hoping beyond hope that Ben would transition peacefully gave me the mindset to work towards making that happen. Love let me cope with the moments when hope was waning.

Hope also has helped me get through grief. It has allowed me to envision a positive future without Ben but with love. It allows me to seek opportunities to help others who are dealing with ALS.

I still have hope and I do make wishes. I hope that I always honor Ben’s memory in a way that he would appreciate. I hope that my blog and interactions with people affected by ALS will help and comfort them. I hope that I will find love again. I hope beyond measure that a cure will be found for this horrible disease.

In a way, hope is a gift, because it allows you to escape some harsh realities. I hope that all of my readers who are affected by ALS will find ways that inspire you to be hopeful and to see past the dark clouds to clear your mind, if only temporarily. There are reasons to be hopeful as we look at the research being done. There is also hope for comfort and the future as we look at the communities and forums of supportive and caring people that connect us because we share a deep bond of understanding and empathy.

Yes, ALS Awareness Month is ending. But, I hope that the determination never wanes to continue to raise awareness of ALS and the brave battles fought by people like my Ben.

I agree with Mrs. Potts. If you lose hope, you lose everything.

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2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

An ALS Journey Through a Disney Lens

Walt Disney World, Halloween

Ben and I at Walt Disney World, Halloween 2011

On this blog I write about my experience as a caregiver dealing with my husband Ben’s journey with ALS.  Since May is ALS Awareness month, and Walt Disney World was our most special place, I thought I would use our experiences there to shed a bit more light on how ALS affected Ben over the nearly six years that he bravely managed the disease. It was important to Ben to maintain a positive attitude, and to enjoy his life as much as possible. Of course, he had his very emotional moments and times of supreme frustration and anguish, and at times, he lived in denial of what was happening, but he wanted to live and die with ALS on his own terms. I remain in awe of his ability to do just that and I am proud to be able to share his story.

Ben was diagnosed in April 2010 but had been experiencing symptoms for at least a year prior- falling, weak legs, imbalance. A terminal diagnosis is a frightening thing, and since ALS is rare, we were blindsided and devastated.  ALS is also unpredictable in its progression, so we had no idea what our next steps should be. We didn’t know how much time we had, so we immediately booked a trip to Walt Disney World, our favorite place. It was emotional, and although we were excited to go there, we also knew that we were taking this trip because it might be our last time.

Planning this trip was the first time that we had to think about problems Ben might have and adjustments that we would need to make to our lives. For example, He was still walking on his own, but knowing how much walking is done at the parks and how tired he got, he rented a wheelchair that was delivered by the vendor to our hotel.  Ben’s dexterity was good at this point, and he was able to use the computer, so he made his own arrangements for the wheelchair and for some of our dining reservations. It was good for him to feel productive and capable, especially doing something he loved!  Getting around the airport was a little bit daunting, so we requested wheelchair assistance and a customer service representative escorted us to the boarding area. I was able to help him in and out of his seat on the plane.

Fortunately, at this early stage of ALS, there were not too many logistical issues to consider at the parks. I arranged to take an accessible Magic Express bus (Walt Disney World’s own transportation) from the airport to the hotel. He laughed on the bus lift and made it fun. As he struggled to move around the hotel room with the wheelchair, he realized that a scooter was in order and a switch was very easily arranged. There are local vendors that work well and often with the properties and easily manage delivery and pick-up.  Rather than lament the need for the scooter, Ben completely embraced it and absolutely loved scooting around. I think he also enjoyed seeing me trying to catch up with him!

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2010- First use of the scooter to go to Epcot.

This was also our first endeavor to relive great memories and create new ones. We splurged and stayed at the deluxe hotel we had always thought about, the Boardwalk Inn. Not only is it beautiful, but the Boardwalk itself is a nice surface for scooting and Ben loved to look out on the lagoon. It was also convenient to scoot to the back entrance of Epcot, by the World Showcase, Ben’s favorite place at Epcot, because there were not too many attractions to ride and he had the freedom to enjoy the surroundings. He also loved listening to the live bands, especially at the England pavilion, where they played a lot of Beatles music.

At the Magic Kingdom, the first ride that we had to give up was Peter Pan’s Flight because it does not stop for loading and Ben’s balance was shaky. He suggested that I ride it alone, but it would not have been the same without him. Ben loved Pirates of the Caribbean, and that ride requires a large step down and then a big step up. I was able to help him down into the boat with little problem, but getting him out of the boat required the assistance of a cast member and other very kind passengers. That was his last voyage. The good news was that his other favorite attraction, the Haunted Mansion, was able to stop to load the doombuggy. The cast members were incredibly gracious and accommodating throughout the parks.

We both shed tears at the beautiful parade on Main Street, with its happiness, hope and the magic that is Disney. It was overwhelming given our circumstances, but we were so grateful to be in our favorite place.

We loved to eat at the Crystal Palace and see Winnie the Pooh and his friends. It’s a buffet, and Ben was able to eat everything and enjoy the meal, with the only accommodation being that I had to carry Ben’s plate. And, Pooh and his friends sat with him when he had difficulty standing, even Tigger, who really does prefer to bounce! Ben was still able to hold the camera to take photos, which was also something that he loved to do.

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2010- Standing to meet Tigger at the Crystal Palace!

I think the most emotional moments were with our Disney friends. First, when we met Mickey Mouse we completely broke down. Being at Walt Disney World is entering the fantasy. We needed a fantasy and being with Mickey Mouse is believing that he can sprinkle some of that Disney magic. One of the cast members was especially sensitive, and he pulled me aside and handed me a “ruby” that the dwarfs got in the mine, and he said he wished it would bring us good luck. I still have that ruby. I believe that the luck it brought was 4 of 6 years where Ben managed his ALS symptoms well.

I remember spotting Buzz Lightyear, Ben’s favorite Disney super hero. Ben did not want to meet him, saying Buzz was strong and he felt weak and embarrassed. I had not heard Ben speak like that and it broke my heart. You may not understand that and you might be saying that this is merely an actor in costume. But, to Ben, Buzz symbolized the strength and capability that he was losing.

With a scooter, rain is more of a consideration, so we panicked during the heavy but brief downpours. There was a learning curve of remembering to bring plastic covers with us, charging the scooter at night and bringing the charger with us in case we needed to recharge during the day. Ben was quite a trooper in his Mickey rain poncho!

2010- Adjusting to the rain and using the scooter was more fun with a Mickey Mouse rain poncho!

The monorail and boats are easily accessible, and the buses could also accommodate the scooter, so we were able to travel from hotel to park and from park to park without transportation issues. Bus passengers were not always patient, but drivers and cast members were amazing. Everything took a little bit longer, but we were able to enjoy our time with so much freedom.  We really enjoyed being able to scoot or take a boat to Epcot and Hollywood Studios from the Boardwalk.

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Ben loved riding the monorail!

 

I made a promise to Ben that for as long as he could, we would spend every Halloween at Walt Disney World, our favorite time to be there. Ben’s ALS had not progressed much over the summer, which was such a relief, and we decided to return to Walt Disney World in October 2010, just five months after our last visit. Looking back, a sadness and fear loomed over everything, as we wondered but did not discuss our worry that this might be the last opportunity to do everything that we loved. We continued to use a wheelchair in the airport, but I was still able to help Ben on and off the plane. At Walt Disney World, thankfully, there was not much of a difference in Ben’s abilities from spring to fall, except that his legs got tired more quickly. Ben still rode around the parks in the scooter, but was able to walk with a cane around the shops and restaurants.

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2010- Ben was having trouble on Pirates of the Caribbean, but he still loved pirates!

Some of the attractions had a different line for people with disabilities, which helped with the waiting time, and Ben stayed in the scooter or transferred to a wheelchair until our turn. Disney has since changed its policies on special passes for people with disabilities, but Ben never wanted one, and it bothered us to know that people took advantage of this pass simply to beat the line. He was fine to wait his turn, he only wanted the ability to stay seated for as long as possible. I always got the pass because I thought it might help in the case of an emergency.

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2010- Ben was so happy to be at the Boardwalk Inn and to look out on the lagoon.

This time, when we saw Buzz Lightyear, Ben was ready to meet him. Ben was dressed for the Halloween party in his Buzz Lightyear t-shirt and he used his cane to walk up to Buzz, who made a big fuss of how they were dressed alike. Ben had a wonderful time and it was great to watch him laughing.

Our favorite part of Walt Disney World was Mickey’s Not-So-Scary Halloween party. We were like two little kids trick-or-treating and comparing our candy. Being in the scooter earned Ben extra loot and he loved that! The decorations were fabulous, and the character dance parties were so spirited.  The Halloween parade was Ben’s favorite event, and he often played the music at home. “Boo to you” was one of his most used expressions. I still say it and smile thinking of him.

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It was very important- I guess symbolic- for Ben to stand in front of the Castle.

We made a point of visiting the Wishing Well at Cinderella’s Castle during this visit.  I have written before that with a diagnosis like ALS, you want to take any opportunity to wish or hope for a cure. Was it silly? Maybe.  But it was hopeful. And we needed to be hopeful. Do I still wish for a cure? Every single day. Click here for my post on wishes.

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An important visit to the Wishing Well at Cinderella’s Castle that became a ritual- wishing for a cure for ALS.

We returned to Walt Disney World three more times. We stayed at the Boardwalk Inn for each visit except for the fourth one, when we stayed at the Beach Club, which was across the lagoon from the Boardwalk and also quite nice. And, there we got to enjoy a character breakfast, which was a nice plus. The restaurants were great about letting Ben scoot up to our table so he could more easily transfer to a chair. The staff or I then parked the scooter.

Our third post-ALS visit was Halloween 2011. The airport was a little bit more difficult to manage because I had to carry the bags and wheel Ben around. He could no longer attempt to walk through the scanner by himself. I am always nervous when I fly, but security and the JetBlue staff were great and helpful. I called the airline a few times to confirm everything about our travel arrangements. It was much more difficult than I anticipated to help Ben to stand given the confines of the aircraft seating and the fact that I could not stand in front of him to lift him. The flight attendants were patient and helpful, and one man confided with tears in his eyes that his brother also had ALS but was in a more advanced stage than Ben. The accessible Magic Express bus from the airport to hotel was a necessity, but Ben always enjoyed that brief ride on the bus lift and treated it like a Walt Disney World attraction.

At the parks, Ben stayed in the scooter most of the time, except to transfer to a chair in a restaurant or to a wheelchair to get onto certain attractions. Fortunately, the parks are filled with accessible restrooms and I could help him when necessary. For me, a noticeable and sad change was that Ben did not always want to get out of the scooter for photographs with our Disney character friends.  He did insist on standing and walking to Mickey and Minnie, which I found so sweet.  I cried when Mickey walked to the scooter to escort Ben to the stage for the photo. Mickey and Minnie hold all of the magic and reason to believe. And we really wanted to believe that things would get better.

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2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

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2011- Slight change in photographs, with Ben opting to remain seated.

Ben was still able to enjoy Buzz Light Year Space Ranger Spin, but he could not use the lasers very well. We continued to go to the Haunted Mansion, and Ben was thrilled that they revised the loading path so we could enjoy the entire attraction. He joked that one day he would be a grim grinning ghost, and although it was morbid, I like to picture him there! He did give up going on Pirates of the Caribbean because it was very hard to help him onto the boat, not just because of his balance, but also because his feet had gotten quite swollen and it was hard to maneuver them into the small space on the boat. We felt that it was unfair, and potentially unsafe, to rely on cast members or guests to provide assistance with lifting him. I was so impressed that he never dwelled on disappointment in what he could not do. Instead, he enjoyed the things he could do with complete delight.

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2011- It’s a Small World allows a wheelchair to board the boat, and since that was so easy (and, ok, there are not long lines) we road it frequently! YAY!

The perks of having a scooter are getting to be seated before the big crowds converge, and getting a good spot at the parades, and Ben loved his Halloween parade! And, of course, lots of treats during Mickey’s Halloween party!

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2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

It is hard to believe, but we saw “Fantasmic!” at Hollywood Studios for the first time during this visit. We loved the show, and accessible seating with early entry made it a breeze to attend.

2011- The first time we went to Fantasmic!

We went to our favorite Mexican restaurant in Epcot, La Hacienda de San Angel, and they kindly found a table where we had plenty of room and some privacy, which helped when Ben was self-conscious about his eating. At this point, he was primarily able to feed himself, but occasionally needed help cutting food.  Anyone who saw me feeding him probably thought it was simply romantic! Overall, we put less emphasis on restaurant meals because eating was not fun for Ben anymore. We were at Epcot during the Food and Wine Festival, which was fun and practical, because we tried a wide variety of foods and he could see what worked for him and what did not. Also, because we were getting food at various kiosks and not seated in a restaurant, we could go to a bench where I could feed him in a discreet area, taking as long as we needed.

I will never forget being at the princess lunch at the Akershus restaurant in the Norway pavilion, after a trying morning where Ben was having a lot of trouble moving around and my back was aching. I spotted a little girl watching us as I struggled to help Ben into a chair and then to help him cut and eat his food. Most people did not notice us, but this one little girl did, and we didn’t want to her to be frightened, so we smiled at her and told her how cute she looked in her costume.  This also happened to be my birthday, and the waiter brought a cupcake and sang to me. The little girl came over to me and gave me a big hug and wished me a happy birthday. My eyes welled up, and when I looked at her mom, I saw her tears.  Words are not always necessary, but compassion is always a wonderful thing.

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2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter.

Halloween 2012 was a most magical trip to Walt Disney World, though things were becoming more challenging. We had stayed in an accessible room in 2011, but now we really needed it. We got much later starts to our days because washing and dressing took much more time. Ben’s feet were very swollen and just getting socks and sneakers on was a long process. Ben’s legs were much weaker during this visit, so lifting him to transfer was more difficult for me. It was humbling to have so many people come up to help me and to be so kind and good humored with Ben. I had to feed him most of his meals and he was afraid to eat some foods at this point because chewing and swallowing could be difficult.

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2012- Main Street on Halloween was one of our favorite things to see.

It was during this visit that Ben proposed to me on Halloween, which he knew I would love. We had been together for twelve years but had not actually gotten legally married.  It was emotional, but we proudly wore our “Happily Ever After” buttons, knowing that we might not have a very long “ever after.” Maybe that was why it was even more important to have that symbolic connection. The day we got engaged, we went to Hollywood Studios and Ben met, for the very first time, his other favorite friend, Sully. Another emotional meeting.  I whispered to Sully that Ben loved him, and Sully came over to the scooter to try to help Ben up, which was heartbreaking and heartwarming. Sully escorted him to the stage for the photograph and it was truly touching. We made a holiday ornament from that photograph. Ben rarely got out of the scooter for photos, even with Mickey and Minnie.

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2012- Sully escorted Ben for his photograph!

We gravitated to attractions like “It’s a Small World” and “Winnie the Pooh” because the wheelchair could go right onto the boat and honey pot. OK, that was a bit of a perk for me, since they are my favorite attractions! It is good news that the newer attractions are being built with that in mind.
For example, the new attraction for Journey of the Sea: Journey of The Little Mermaid has clamshells that seamlessly accommodate a wheelchair.  “Finding Nemo” at Epcot also has accessible clamshells.

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2012- Mickey’s Not So Scary Halloween Party. Ben took center stage in the scooter!

Since Ben was homebound, just having the freedom to scoot around the parks was exciting to him. Navigating with the scooter was becoming more difficult for him, so I sometimes had to help him steer into a spot on the bus. We did have one mishap in a shop, when Ben suddenly lost control of the wheel and he plunged into a rack of clothing, causing it to collapse. We both panicked and felt horrible, but the cast members never skipped a beat and were very reassuring as they reassembled everything in a couple of minutes. Ben was completely unharmed but took an emotional hit because it signaled the loss of his arms and, therefore, of his options for movement. Still, he was persistent and determined and that was admirable.

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At the Crystal Palace buffet, Tigger hung out with Ben without bouncing.

 

Our last visit to Walt Disney World was in July 2014. My dad had passed away five months prior, and Ben was changing more rapidly, so I planned a visit for the summer. Walt Disney World in July was not ideal, but I had already missed many days of work caring for my dad and Ben. In June, Ben had finally agreed to hire a home health aide for a few hours a day during the week. Ben was homebound and could no longer walk. He could not use his arms much and his hands lacked much dexterity. The foods he ate were mostly pureed to a bisque-like consistency. There was more luggage, more expense, more caregiving responsibility and more to keep track of. We had to take an ambulette to and from the airport because the drivers could take Ben down the stairs of our building. This time, Ben did not have the dexterity or mobility to use a scooter, so he rented an electric wheelchair. We needed to bring assorted toiletries to the parks, as well as an insulated backpack with Ensure Plus in case we could not find enough food that Ben could eat. The ALS team suggested that I not travel alone with Ben, and I agreed, so I asked his home health aide to accompany us for the nine days in Orlando. I wrote about this most magical trip in a prior post and I invite you to Click here to read more about this visit. It may give you some ideas and will also give you some perspective.  There were definitely more emotional moments during this trip. Ben required more assistance with all daily life activities, including getting into and out of bed and rolling over, showering, toileting, transferring, and eating/drinking.  Having another caregiver with us did add a new dynamic. Ben’s biggest complaint was that it wasn’t romantic. There was truth to that, but for his safety and my own sanity, we needed to have another person to help out. And, in my mind, it allowed me to return to feeling like Ben’s wife instead of his caregiver, holding hands and enjoying our time without quite so much stress over caregiving responsibilities. Click here to continue reading about this visit.

Ben even had fun on the Magic Express wheelchair lift!

When people look at the pictures, they comment about how thin Ben got, and sometimes they see his very swollen feet. Living with him, I can’t say that I noticed those physical changes much on a daily basis at the time, though when I look at pictures now, I do see them. Mostly, I see Ben’s smile and his joy. After all of the ugliness of ALS, I think it is a gift to be able to say that.

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

These pictures do not reveal Ben’s last weeks in the hospital, when he got a feeding tube and a tracheostomy. They do not reveal our fear when he got an infection and pneumonia while in the hospital, shortly after these procedures. These issues were obviously more dramatic than those we encountered in Walt Disney World, and they are the issues that are generally discussed in relation to the progression of ALS. But, this glimpse into our visits to Walt Disney World offers a look at the subtle or small shifts in our daily lives that made significant impacts on Ben’s life with ALS. Maybe it seems trivial to write about Ben not eating the same foods or opting not to walk up to his favorite Disney friends for photographs.  However, these details symbolized sad milestones in the shrinking of Ben’s world and what mattered within it. The changes in our routines and diversions at Walt Disney World were the markers of how he was slowly succumbing to ALS.

When Ben ultimately ended up in the hospice/palliative care unit at Mount Sinai Medical Center in NYC, he was surrounded with favorite Disney toys, photographs and Halloween decorations from our hotel room back in July 2014. He loved those memories and I’m glad he could be comforted and delighted by them until his last moments on this earth. He could not change the fate of an ALS diagnosis, but he did a great job of controlling his attitude,  and he treasured the happy times and bravely navigated the journey on his terms.

I will continue to wish for a cure for ALS and I will continue to take any opportunity to raise awareness of the disease, even if it is in my Disney way.

Ben and I at Walt Disney World, July 2014