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!

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Epcot

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Crystal Palace, Magic Kingdom

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Pirates

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

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

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Tigger

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.

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!

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!

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Sully, Monsters Inc

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Winnie the Pooh

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse,Tigger

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

What Olaf Knew about Love and Melting

Walt Disney World,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)

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.

Bambi and Thumper – A Special Relationship


Bambi
© Walt Disney Productions 1942

Easter seems a perfect time to honor my favorite bunny, Thumper, from Walt Disney Pictures Bambi.  I’ve always loved Bambi, and have written about the song Love is a Song that Never Ends and how it resonated with me in caregiving and in grief. I recently watched “Bambi” again, and was touched by Thumper’s relationship with Bambi in a whole new way.

Thumper was the very adorable and lovable young forest gossip, and he certainly didn’t always say the right thing. He was the one to point out that Bambi was “kinda wobbly, isn’t he?” and “he doesn’t walk very good, does he?” This is not exactly the positive reinforcement someone wants when struggling and self-conscious! And while his mother had to remind him that “if you can’t say something nice, don’t say nothin’ at all,” Thumper was a child making an observation, albeit tactlessly, but his heart was in the right place. He was quite devoted to his new friend, the young prince Bambi.

Thumper and his siblings (also incredibly adorable little bunnies) play with Bambi but also watch out for him. They anticipate where he is going to struggle and they gather around to help him so they can play together. Thumper was Bambi’s motivation. I especially love this clip, in which Thumper assesses the situation on the ice and tries to position Bambi’s legs, advising Bambi to “walk both ends at the same time.” It doesn’t go so well and they both end up skidding and falling. It reminded me of the way I had to work with Ben to help him up and figure out the best way to get around. We each had to trust each other and there were times we were nervous and other times it was fun. There were times that I managed to keep him from falling and got him safely onto the bed or a chair. There were also the times that we both ended up on the ground, fortunately unharmed. And, like Thumper, we often found ourselves saying, “Gee whiz, what happened that time?” I always loved this scene in the film, but now I see it in a new light.

Thumper never gave up on Bambi or their friendship in the same way that as caregivers, we never give up on our loved ones. And, Thumper was so happy when Bambi did have an accomplishment like walking steadily. Though Bambi is first learning to navigate the world and Ben was adapting to new ways to do some tasks and dealing with losing the ability to do others, I could relate to Thumper’s positive attitude of problem solving and encouragement.

Also touching was that he never left Bambi behind in pursuit of his own fun. ALS is known to be an isolating disease, particularly because you lose the ability to communicate. Thumper was determined to have Bambi join him with their other forest friends. It is an important lesson for all caregivers, friends, relatives and others to find some way to remain engaged with our loved ones. Visits, cards, texts, emails, photos, videos and a simple presence can all help a person feel remembered and included in life. Ben and my dad always enjoyed hearing that people thought of them.

Bambi was so frightened, confused and sad to lose his mom. He did not know what the future and the world held in store. But, time went on and winter turned to spring, and Bambi grew up. He reunited with Thumper and Flower and the rest of his friends and all their families, and none of them forgot the friendship they shared. Thumper and Bambi- and a dose of Disney- remind us that love never dies and beautiful memories stay strong and sustain us as we move through life’s good and bad times.

(f you haven’t seen the film, or haven’t watched it in a while, treat yourself. It is a beautiful story.)

To everyone who celebrates it, I wish you a Happy, Peaceful and Healthy Easter!

Happy Anniversary, My Mickey!

ALS,Walt Disney World

A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

Today would be the 18th anniversary of my first date with Ben. I think I’ll always mark these events in my heart. And, I think that’s ok. In fact, I think it’s good. I remember when we wore our “Happily Ever After” buttons at Walt Disney World, even after his ALS diagnosis. It isn’t always easy to remember pre-ALS days, but days like today bring me back to who we really were and the Disney-like romantic times that we were so fortunate to share. I like to believe that he is now watching over me now as I make new milestones, knowing that I always keep him close.

When Ben proposed to me, he asked me to be his Minnie. So, Happy Anniversary, My Mickey. I miss and love you.

Love,

Your Minnie

What Pocahontas Knew About Walking The Footsteps Of A Person With ALS

ALS,Caregiver,Caregiving,Disney,Pocahontas,Colors of the Wind

Lyrics from the song “Colors of the Wind” from the Disney film, Pocahontas”
Lyrics by Stephen Schwartz and Composer Alan Menken

 

These lyrics are from the song Colors of the Wind from Pocahontas. In the context of the film, the song relates to people learning to accept and open their minds to people of other cultures and races. I found myself thinking of the many people we may judge without really knowing them, their stories, and what it is like to be in their lives. I think about the way people responded to the way Ben chose to live and die with ALS. It is easy to have opinions, and it’s fine to have them. I have them, too. We were fortunate to have many people close to us who put aside their opinions to create a solid support network. But, there is a line that is crossed when opinions become harsh judgments that are made without full knowledge of a situation, and, more importantly, without an attempt to see a situation through a different lens and get a glimpse at what it is to “walk the footsteps” of another.

When Ben was first diagnosed, suggestions were offered by his ALS team, who had followed many people on the sad and excruciating journey of this disease. There were opinions from our friends and family. I had my own thoughts. But, Ben had to choose his own path. No one could really know exactly how he felt about facing the loss of his abilities and, in essence, his freedom, as he faced death. I lived with him every single day and talked to him about these things, trying to walk his footsteps, and I still could not truly envision what it was like to be him.  Still, there was a lot of “what you should do” and “what you have to do” from people who had much to say, yet did not ask Ben (or me) questions that would have given them insight into his experience and allowed them to acknowledge and comfort him, rather than simply judge and direct him.

Shortly after his diagnosis, Ben told me that he would understand if I wanted to leave him, if I could not handle what was happening to him and if I wanted to have a different life. From his perspective, he loved me and wanted the best for me, at the same time that he feared and wanted to prepare for the possibility that I might leave him. Indeed, some people told me that I should leave him.  To walk in my shoes would mean that you perceived my overwhelming fear, anger and sadness but knew that I would never leave this man whom I loved and who needed me.  And, to walk in my shoes would mean that you would realize that even when he was harsh and unkind, I would either defend it because of his illness, or believe him and think that I must not be a very good caregiver, or feel helpless because he was a dying man and I was devoted to him.

There were many times throughout Ben’s illness that I would have liked to tell people – strangers and those close to us – to try to walk in our footsteps.  At Walt Disney World, when Ben did not have visible signs of disability in the early stages of ALS, some guests treated him as if he was simply lazy by using a scooter, and were clearly annoyed when loading the scooter delayed a bus and when it took up seating space. Instead of being defensive and angry, we were anxious and unnecessarily apologetic for the delays. That said, there were many people who also offered assistance if they saw me helping him to stand or transfer from the wheelchair, and they were kind and good humored with Ben. Try walking in the footsteps of someone who does not have the freedom to easily step on and off a bus and has to awkwardly and anxiously enter and secure a wheelchair while being watched impatiently by other riders. Imagine knowing that this is only the first of the abilities that you will lose and that this may be the last time you will ever be able to travel. We never know the big picture behind what we are seeing, so it is important to suspend snap judgments.  Ironically, though there are often controversies regarding visitors to Walt Disney World who illegitimately request disability passes to get to the front of the lines, Ben never wanted special treatment or to take advantage of having a special pass for the attractions. I must also add that the Disney cast members on the grounds and transportation were always fantastic.

There were many instances in which people bypassed Ben and only addressed me. When his speech became impaired, he joked that if they heard him speak they assumed he was somehow mentally challenged, and, although it did bother us, I was glad that he had a good sense of humor.  However, I was quick to involve Ben in conversations, because I wanted people to know that he was fully capable of communicating and understanding, even if he needed my help. Then, some people realized that they could engage with Ben. Think about how it must feel to be ignored when you are vibrant, able and wanting to be a part of a world that is becoming increasingly distant. Just acknowledging someone’s presence with just a smile can lift a person’s spirits. It certainly lifted mine to see him respected and happy. Compassion goes a long way.

Seeing things through another’s perspective is not always easy, especially when you are dealing with someone who has a terminal illness, like ALS. Among my biggest frustrations was that some of the people with the strongest opinions, arguments and accusations were also the people who were not actively or consistently involved in Ben’s care. They promised to visit and did not. They did not try to gain a clear picture of his medical and emotional situation and dilemmas or ask how they could help, but they were vocal with their criticism, even if completely unfounded. Instead of walking in his footsteps, they stepped on his feet and tripped me up with the unnecessary drama they created. It is imperative to be honest with yourself about the role you have had in someone’s care and life, and to recognize when to put aside your own needs and agendas, in order to watch and listen, and to “learn things you never knew you never knew.” With that insight and knowledge, you are more able to play a meaningful part in someone else’s journey.

In Ben’s fifth year with the disease, he made the choice to proceed with plans to get a feeding tube but those plans were interrupted by an urgent respiratory crisis that landed us in the emergency room. Then, admitted to the hospital with a biPAP mask and being fed intravenously, he had to decide for sure if he wanted a feeding tube and a tracheostomy. It took him more than two weeks to make that decision. I held his hand, I tried to answer his questions and to get a sense of what he was feeling, but I could not tell him what to do. I was worried about what his quality of life would be in a skilled nursing facility, which was where he would have to go with a tracheostomy. However, talking to him helped me to understand that Ben was focused on living and the things that he would be able to do. I could not begin to imagine all he was experiencing, but talking to him helped me to see his viewpoint and gain insight into his thoughts. I embraced his beliefs and supported him.

Ben did decide to get the feeding tube and tracheostomy, but things did not go smoothly in the hospital. He quickly developed an infection and then pneumonia. He was miserable. After a few weeks, he made the decision to go to the hospice unit of the hospital and to be removed from the ventilator, which was his life support.

Life and death decisions can be debated based on a range of convictions, from emotional to clinical to religious. Ben navigated his journey with ALS in a way that was right for him. I respected that and I admired his bravery. I had to see his situation through his eyes, and although I did agree with him, I understood that agreement with him was not the issue. I was there for him. Whether you are a caregiver, friend, family member or even a patient, it is so important to try to walk someone else’s footsteps. Maybe I did not handle being a caregiver the way some people thought I should and maybe I did. Maybe Ben did not navigate his life with ALS the way some people thought he should, and maybe he did. Keeping an open mind, even if we do not agree, helps us to “paint with all the colors of the wind” and support each other with a more positive, meaningful, loving and helpful connection.