On this day, November 4, in 2005, Walt Disney Pictures released “Chicken Little.” I think it’s a cute movie that also has good messages about acceptance, believing in yourself and never giving up in fighting for what you believe in.
This quote felt like a caregiver’s cheer. As a caregiver, there were so many times that I felt that the sky was falling around me. There was, of course, Ben’s actual physical deterioration as his ALS progressed. My increasing caregiving responsibilities were stressful, as was watching Ben struggle, knowing that it wasn’t going to get better but trying to deny it. The emotional toll that took on him was devastating to witness. My giving up was not an option, because Ben needed my help! And, if he wasn’t giving up, even as ALS took away his ability to walk, use his hands, swallow and ultimately, talk, then neither was I!
To be honest, the idea that “every day is a new day” could often be scary. Every day posed the possibility of a new problem. At the same time, every day did present an opportunity for things to be okay, or stable. We hoped for that and there were many good days. Good days could be times when we had a lot of laughs, or Ben was comfortable, or I was able to transfer him easily and without pain (to either of us), or I made a tasty pureed meal in the food processor. Good days were days without frustration, resentment and sadness. Good days were days that we both felt that I was in control of all that needed to be done.
What did I do when I felt like the sky was falling? Sometimes I gave in to the emotions and cried and that did somehow leave me feeling better and calmer. At other times, I needed to take little “mind breaks.” Computer games and surfing the web often proved to be a good distraction. Watching movies, especially Disney ones, also allowed me to escape while still being present. Writing, whether in my journal, or in my book of Disney inspirations, also helped me to focus and sometimes to work out my feelings. I do find that a nice cup of tea also helps me to slow down and regroup.Emails and texts to my friends helped ease loneliness and reassured me that I had a network of support. I couldn’t go out very often, so keeping up with friends in this way allowed me to feel connected to the world. Sometimes I just sat on the sofa with Disney, my cat, while Ben watched TV in the other room. I needed space and there isn’t much in our tiny NYC apartment. And, if Ben was comfortably settled, a bubble bath was a really great retreat.
In grief, I find that this quote also resonates. The pain and loneliness can be awful and the idea of shaping a new life can seem impossible, but I never give up and indeed, after a little more than a year, I feel like I’ve cautiously stepped back into life. I certainly have my setbacks, but I know that every day is a new day, and some are better than others. I try to acknowledge every baby step I take as I heal. Indeed, it was a leap forward to go to London and celebrate my birthday last month. It has been a hugely comforting realization that Ben and all of my memories- the carefree, loving ones as well as the ALS and caregiving ones- will always be a part of me. The future is still daunting, and the present is still lonely and sad, but I have more pleasant days and feel more optimistic now.
I suggest to other caregivers that it’s very important to identify things that make you feel better when it seems that the sky is falling. A network of support is also crucial. Make a list now, before an emotional crisis, of people and places that you can turn to. Maybe some of my ideas will help you. I wish I knew about the Twitter chat support groups while Ben was still here. I find them useful now, too. If there are things that help you, please share them in the comments. For now, listen to the little chicken’s message!
Meeting Monsters Inc Sully and Mike. Ben LOVED Sully!
Halloween was the most fun holiday for Ben and me, especially when we were at Walt Disney World for Mickey’s Not-So-Scary Halloween Party. Halloween is extra special for me because Ben proposed to me at Walt Disney World on Halloween. It was very exciting and, of course, I told all of my Disney buddies! Ben never tired of teasing me about my ability to talk to all of my friends. Why wouldn’t I?!
There are so many videos and photos of our amazing times, but, of all of the fun Disney times we had, I think that a most poignant memory was the Halloween celebration we had back in July 2014. That’s right, July. This was a very special trip, because I think that Ben and I both knew that it would likely be our last visit to Walt Disney World, as Ben’s ALS was progressing more rapidly. I wanted it to be a most incredible trip with lots of surprises.
Traveling to Walt Disney World was stressful but Ben really did have an amazing attitude. I will write some of the details to give an idea of considerations that have to be made when dealing with ALS and other disabilities. I think it was a combination of realism, naivete, determination and pixie dust that enabled me to make these plans! First, we needed to bring another caregiver. I was advised by Ben’s doctors and the ALS team that I should not do this alone. Ben wasn’t happy about it, since another person did change the dynamic, but he had to relent and I had to be strong, since I was nervous about how much assistance he required. Getting to the airport was a bit complicated, since Ben was pretty much homebound at this point. I had to hire an ambulette service to get him down the stairs and safely to the airport. I contacted JetBlue, which was great each time we flew, before and after Ben’s diagnosis. They helped me to choose seats and let me know exactly what to do when we arrived at the airport. We were taken through security with relative ease and he was literally lifted and placed into his seat by a very kind and accommodating crew, one of whom revealed to me through tears that his brother had ALS. Ben was calm and in good spirits, while I was a smiling nervous wreck!
Disney’s Guest Services Department was very helpful and supportive when choosing a room, coordinating transportation to the hotel with a bus that had a wheelchair lift, and arranging for the electric wheelchair to meet us at the hotel. They even put me in touch with a local pharmacy that delivered Ben’s nutrition supplement to the hotel. It was waiting for us when we arrived! We had a room with a roll-in shower, which was such a treat for Ben. We take a lot for granted in life, don’t we?
Ben even had fun on the Magic Express wheelchair lift!
This was going to be a very different trip because so much about Ben’s physical abilities had changed. Ben wouldn’t be able to go on his favorite rides, Pirates of the Caribbean and the Haunted Mansion. Eating was also a big challenge. Because of these obstacles, I wanted to arrange surprises for Ben that would be fun and unusual. Ben knew I had surprises in store, but he didn’t know what I had planned.
Disney has a wonderful Floral and Gift Department (click here to visit the site) that offers a variety of gift packages that can be delivered to your hotel room. They had a Halloween package but it was available during the Halloween season. I called and explained our situation, making a special request for a Halloween hotel room even though it was July. Disney is about magic and dreams come true, and they did not disappoint! When we arrived at our room, outside was a banner that said “Spooktacular Halloween July 2014!” It had a pumpkin with blinking lights. Ben thought it was a promotion for Mickey’s Halloween Party, but he still got excited. When we opened the door, the room was like a little Haunted Mansion and Ben was completely shocked, thrilled and emotional. I thought that if a full day at the parks was difficult, the room would also look very cool, and indeed, it did, but Ben did great at the parks! I was the one having a hard time keeping up with his zipping around in the electric wheelchair!
Since we were bringing Ensure to the parks in case eating was a problem, I had also ordered from the Gift and Floral Department an insulated backpack with some goodies. Also, we were joined by a giant walking Buzz Lightyear balloon. Here are pictures of some of the magic.
Ben was excited just to see the banner! He had no idea what awaited him inside!
Mickey Mouse and Minnie Mouse all dressed up for Halloween in July!
Treat baskets in our room, and a projectable haunted house that shone a haunted house on our ceiling!
The candelabra in our haunted hotel room!
Our hotel room was very fun!
I learned that there was a Pirates and Pals Fireworks Cruise with a party where you could meet Captain Hook and Mr. Smee. When I found out that the boat was accessible, I had my next surprise for Ben! The day of the cruise, I gave him as a hint a little pirate coin I’d found at one of the gift shops. His first guess was that I’d arranged for him to go on Pirates of the Caribbean, which, sadly, I couldn’t do. We took the monorail (also accessible) to the Contemporary Hotel, where the party began. Ben laughed when he saw the really great pirate-themed decorations. We were given bandanas, too. One of the truly brilliant aspects of the Disney team is that they never make someone with disabilities feel uncomfortable. A cast member came and escorted us with no fuss on an accessible path to our boat. The cruise was so much fun, the fireworks looked magnificent from the water, and, as a surprise, Peter Pan was on the dock to greet us when we returned! OK, so I was more excited than some of the children! There were tears and there was joy as we listened to the “Wishes” fireworks lyrics, but watching the delight on Ben’s face is something I will never forget.
At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee.
Ben loving the Pirates & Pals Fireworks Cruise.
Ben had not had a proper haircut in a few months, so I arranged for him to have a haircut and shave at the Main Street Barbershop. He was a little bit apprehensive, but, as I’ve said, he had such a great attitude, and he ended up having a great time. The staff accommodated his electric wheelchair and made him completely comfortable. Outside of the barbershop he met up with the Dapper Dans, the singing quartet he loved.
Ben got a kick out of getting his hair cut on Main Street, especially because it was decorated like an old fashioned barber shop.
The Dapper Dans were very cool! Ben always loved them.
We loved our usual attractions, and Ben loved the new Little Mermaid attraction, where his wheelchair could go right into the clamshell. Of course, we were happy to see our friends.
Buzz was one of Ben’s heroes, but he loved Woody and friends, too!
We visited the Wishing Well at Cinderella’s Castle, which was emotional. We also became overwhelmed when we met Mickey and Minnie at Epcot. Maybe it’s silly, but when dealing with something like ALS, you just want to believe in magic, or something, that will make things better. People sometimes ask me how I can believe in Disney magic, or that dreams come true. I just do, even when it’s difficult. After all, Ben did okay with ALS for about 4 years, and we were fortunate to be able to travel to Walt Disney World many times, even after his diagnosis. We shared a lot of love and wonderful memories that he relived daily as he looked at our many photos and videos. We even had Halloween in July! And, he left this world surrounded by music, love and even Disney. Maybe it’s a matter of perspective, but I feel the pixie dust.
At the Walt Disney World Wishing Well at Cinderella’s Castle
In Disney history, The Jungle Book was released on this day in 1967 (Thank you, DizneyCoastToCoast.com). This is a tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by the tiger, Shere Khan, who hates man. It is also a sweet tale of Mowgli’s relationship with Bagheera, who teaches and watches over him, and in that way it represents a wonderful tale of caregiving. Bagheera has it all: patience, ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and they have a deep friendship and love, but Balloo also needs the guidance of Bagheera. I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! But, Baloo is protective of Mowgli and he has a good message. As caregivers, you don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” And yet, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. Try to focus on those things when the stress becomes severe and you start to forget who you were before you were in a caregiving relationship. I wish I had done that when I was Ben’s caregiver. I think it would have helped me to deal with the frustration that I have only just begun to understand in grief.
As for me, I think I was a combination of Bagheera and Baloo- a dedicated caregiver, acquiring skills on the job, with a sense of humor and incredible klutziness! How about you? What do you consider the important skills of caregiving? Are you more Bagheera or Baloo?
Faith. It’s just so important. Whatever it means to you- religious or otherwise-it doesn’t matter. As Rufus explained to Penny in this scene of Walt Disney Production’s The Rescuers, faith is not something tangible, and it’s hard to explain, but it’s that feeling that things will be ok. We all need, and want, to feel that, and sometimes it takes a real effort.
When Ben and my dad were ill, I had faith that they were getting good care and that they knew what was best for themselves. Every day I had faith that we could get through even a challenging day. On some days that took a lot of energy and it took my Disney-est thoughts to keep the faith.
I had to have faith in myself, that I was a good caregiver and could patiently provide the comfort, compassion and care that they needed throughout their illnesses without falling apart. Faith in myself was something I had a hard time with. I still do. I look back and I do believe that I handled things as well as I could, with love and compassion. As I recall and write about my caregiving experience and the situations I had to tackle, I feel my faith in myself growing stronger. I hope that all caregivers take the opportunity to write, talk, creatively express yourselves, and think about all you do and all that is expected of you in this role. Let this bolster your faith in yourselves, the people you care for, and the support networks around you.
Now, I have faith that Ben is in a place where he can breathe, walk, run, eat, talk and play the keyboard and guitar as much as he wants. I have faith that he is hanging out with my dad and they are watching over me. And, on most days, I have faith that I will forge a new life while always honoring and respecting their memory.
Since today, October 1, marks the 81st birthday of Julie Andrews, I will devote this post to Mary Poppins, the consummate nanny who taught me many things about caregiving. “Mary Poppins” was the first movie I saw in a theater and it remains a favorite, as does Julie Andrews.
A kind yet stern and always magical nanny, Mary Poppins added whimsy to life while addressing all of its practicalities and mishaps. She got Jane and Michael Banks to use their imaginations and see beyond the confines of their nursery. They were safe in her care, learned the importance of rules but also how to challenge them, and, because she knew just how to step in, they built and strengthened relationship with their father. She knew how to meet the needs of the Banks family better than they did. Now that’s what I call a great caregiver!
Here are ten lessons about caregiving that I learned from Mary Poppins:
“In every job that must be done there is an element of fun.”
There were days where there was nothing fun in the actual tasks required in Ben’s care due to ALS. But, those silly moments that made us laugh amidst the sadness are the ones that still stand out.
“Worrying won’t help anyone.”
Even as a worrier, I know it’s true. It doesn’t help. But, if it helps you to picture worse case scenarios and create plans if necessary, go for it. Just don’t dwell! Trust Mary Poppins. It doesn’t help.
“Just a spoonful of sugar helps the medicine go down, in the most delightful way!”
Lyrics to live by! I was there for a reason, and that reason was love and compassion. There’s the sugar. It made the awful, embarrassing tasks “swallowable.”
Click to play:
“Never judge things by their appearance…even carpetbags. I’m sure I never do.”
Because a person needs a caregiver does not mean they become irrelevant. When people would come to see Ben and talk to me as if he wasn’t there, I would redirect them to include him in the conversation, even if I had to explain what he was saying as his speech became more impaired. His brain was still very active. He mattered. I did not let anyone make assumptions about his capabilities or ideas. Always let the person know they matter. Because they do.
The same goes for people who judged our relationship. Whatever people thought of me, or of Ben, and our caregiving situation, we were the only two who were actually in our relationship for sixteen years. In any caregiving situation, particularly within a family, there are dynamics that only those involved can really understand. You can have opinions, but tread gingerly when it comes to offering advice, even if it is requested.
Sometimes a little thing can be quite important.
A smile, a thank you, a kiss, remembering something special. I’ve written about how Ben and my relationship felt like it shifted from husband and wife to patient and caregiver. It was in little things like holding hands, sharing memories, or “inside jokes” that we were brought back to who we really were as a couple before ALS.
Best foot forward. Spit spot.
It’s all you can do. And, when you’re dealing with a lot of crises, you can’t take a lot of time to ponder. As I’ve said in prior posts, I often had to “just keep swimming,” even though I belly-flopped, but I always put my best foot (or fin?) forward!
Let’s go fly a kite
All at once you’re lighter than air You can dance on the breeze Over houses and trees With your fist holding tight To the string of your kite
OK, we couldn’t really do that. But, we had to maintain a sense of fantasy and whimsy that could take us outside of our reality, at least for a few moments. The trips we took to Walt Disney World were always magical, and they took on a special meaning after his diagnosis. Those trips were the kite that took us briefly away from reality. Now, I can look back on those memories with gratitude and a bittersweet delight.
It’s a jolly ‘oliday with Mary
Oh, it’s a jolly ‘oliday with Mary Mary makes your ‘eart so light! When the day is gray and ordinary Mary makes the sun shine bright!
Ben teased me that I loved to use the word “whimsical.” But, I enjoyed bringing whimsy into his homebound life. I often arrived home with shopping bags of “treats”- new tshirts for his collection, a gadget that I thought might help him, a new ingredient for our culinary adventures into pureed concoctions. It always made him smile and laugh. That made the “sun shine bright” for both of us!
Supercalifragilisticexpialidocius
It’s a great word. Covers a lot of territory. It especially made me chuckle to myself when a bevy of not such nice words were going through my head! Try it.
Click to play:
“Mary Poppins. Practically perfect in every way.”
I tried, and often beat myself up too much for feeling that I was not a good enough caregiver. It’s a great goal, and always important to remember that we all define “perfect” differently, and that the definition may vary by circumstance. I hope that, at least at times, I was Ben’s Mary Poppins.
All photos: Mary Poppins (1964), Walt Disney Productions.
