Today, May 21, 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.
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 that constantly feeling, day in and day out. 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 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 worried 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 generally 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. But, when I was present, there were some people who addressed me as if he was not there, despite the fact that he understood everything. I had to redirect the conversations to include him. Sometimes, I’m sure it had to do with needing to do things quickly, but it took a toll on Ben. He felt invisible. 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.
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 such a 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, 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 think back to caregiving days and I often had to cheer myself on and cheer on Ben and my dad. Ben was actually great at motivating himself. I can picture him singing this song from “Hercules” with a big smile on his face. I still have such great admiration for how he was inventive and determined to maintain as normal a life as possible despite the abilities ALS was stripping away. I was there to help him accomplish his goals, make him smile, and do for and with him what he could not do on his own. Although it was heartbreaking, and at times very tense, we did have a lot of laughs. But, he really did strive to go the distance, up until he left this world. I remain in awe of his bravery and strength.
My dad was another story, spending seven years counting down to his impending demise. We joked about his negative attitude, but at times it did drain and frustrate me to the point of tears. I was his cheerleader, and I did enjoy hearing from him and from so many people that I was his life. I was a Daddy’s girl, and he was my life, too. My dad loved history, he was a very proud Marine, and he loved to read. I spent much time calling him from bookstores to read aloud book jacket descriptions of new books about World War II. It was hard to find books with an angle he did not know. When he asked a lot of questions but concluded by saying that I should not buy the book because, “where I’m going I won’t need books,” I knew I had a winner. Ben and I also found lots of World War II documentaries for my dad to watch, and he and I frequently watched one of his favorite films, “Mrs. Miniver.” I had to go the distance and be strong to find ways to give my dad strength and optimism. That was indeed a Herculean task!
Living with and succumbing to a terminal illness is indeed courageous. Caregiving, too, requires super powers. When I was exhausted, or feeling downtrodden as a caregiver, I had to force myself to believe that I could be strong and that I could “go the distance.” Sometimes, it was a matter of reflecting on the difficult time that Ben and my dad were having, physically and emotionally. I was the caregiver, but they were the patients. I think back to the times that I just managed to keep Ben from falling, which, given my own lack of coordination, was quite a surprising feat to accomplish, and in those instances, he called me Wonder Woman. He even got me a Wonder Woman t-shirt. Those shows of strength did take a physical toll on me, but “every mile was worth my while.” I knew that I belonged at Ben’s side. And, in retrospect, I learned a lot about myself in that process. It brings me to my favorite Christopher Robin quote, “You are braver than you believe, stronger than you seem, and smarter than you think.”
Managing grief has been another Herculean task. The ups and downs have been hard, but I cheer myself on, more successfully on some days than on others. I have definitely stepped back into the world of the living again. I am more comfortable in, or better resigned to, my routine of living alone, and I enjoy with less guilt the freedom to socialize again and to enjoy doing things I love, like going to the theater. I even added to my routine with strolls through Central Park, where I do see signs of Ben from time to time. I have changed things in my apartment, though Ben is very present here in photographs, things of his that give me comfort, and things of ours that bring good memories.
When I think of the future, I still have to convince myself to go the distance. It’s not easy for me to perceive myself as strong, though intellectually, I know that I have shown physical and emotional resilience over the past several years.
I have blogged about my memories, and coping with my present, but the future is still daunting. I recently began entertaining the notion of dating again, tiptoeing into the online dating realm (not loving it!). My relationship with Ben brought so much to my life, and I do desire to find love again. I believe that Ben would want that for me, too. After sixteen years with Ben, it is very challenging to be vulnerable again. I like to think the best in people, so to have to have my guard up is out of my comfort zone. Armed with my Disney soul, I still believe that I can have a happy ending, so, I have to believe that it will be worth my while to go the distance and be strong to find where I belong. I’ll keep you posted…
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!
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.
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.
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.
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.
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.
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.
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.
2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!
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.
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!
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.
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.
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.
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.
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.
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.
Frozen certainly became a phenomenon among Disney films. There’s romance, royalty, family strife, tested loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?!
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. 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.
Who would believe that Olaf, the sweet and goofy snowman would so beautifully sum up my caregiving experience at its core.
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 was 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.
While putting their needs first sometimes caused some melting, it was in the literal letting go of my dad and Ben 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! 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! But, caregivers, like Olaf, know the true meaning of love.
I saw this quote with an image from the Walt Disney Productions animated film. 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. After reading 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.
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. 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.
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.
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 accommodate that. 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 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.
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. 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.
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.
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.
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. There were times that there were conflicts 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 want 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.