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!
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.
Imagine having a personal inflatable healthcare robot with a database of your medical details, like Baymax from Disney’s “Big Hero 6.” As of now, that possibility lies within the creative minds at Walt Disney Pictures, but hopefully it will eventually become a reality. While we wait for that technology to evolve, we are fortunate to have a company like GreatCall, which offers sophisticated yet accessible mobile and urgent response devices that assist and give peace of mind to caregivers and the people for whom they care.
I’ll use my own experience to illustrate what I consider to be the power of GreatCall’s products. I was the primary caregiver for my dad, who was in his eighties and living alone with cancer, and, at the same time, for my husband, Ben, who had ALS. One of my biggest fears was not being around for, or aware of, an emergency. We did have our routines for phoning and texting while I was at work, but there were the times I couldn’t reach them, and those were times I lived in panic. That’s where GreatCall would have eased our worries.
GreatCall’s Jitterbug Smart, Jitterbug Flip, Lively and Lively Wearable
One product with outstanding features is GreatCall’s Lively, an urgent response device that connects directly to a 5Star Agent for immediate assistance. Unique functions that grabbed my attention are fall detection and GPS location. Like many people, Ben did not want to admit that he needed help, though we both worried about falls. There was more than one instance where although unharmed, Ben had ended up on the floor or could not lift himself from a chair, and was waiting patiently for me to return home. With this device, I could have gone online or used my smartphone at any time to track Ben, and I would have been alerted to any falls, or an agent would have contacted me, either through the fall detection service or if Ben called for urgent care. That would have been a huge relief! When Ben finally did concede to the use of a medic alert system, it had to be connected to a land line, and the speaker was not always nearby, which posed problems particularly as the ALS increasingly affected his voice and speech. In comparison, the Lively does not need a land line connection, has a built-in two-way communication function, and it can be worn around the neck, on the wrist, or carried around on a keychain. It is accessible even to a person who is not tech-savvy, like my dad. The Lively Wearable version of this device can be worn on the wrist and includes a fitness tracker option that can be managed with a smartphone connection.
GreatCall also offers mobile phones- the Jitterbug Smart and the Jitterbug Flip– which offer the features and style you would want in a phone, but with helpful adaptations like voice typing, yes/no prompts for programming and larger screens and buttons. These features would have helped my dad, who rarely used his cell phone because he had trouble with the technology and the small buttons. ALS compromised Ben’s dexterity, so these phones would have helped him as well. The Jitterbug phones also come with the 5Star Medical Alert feature, an emergency button that connects immediately to a National Academy of Emergency Dispatchers agent.
In addition to impressive products, I love that GreatCall considers and integrates the caregiver’s concerns into its products and services. Through a smartphone, tablet or computer, I could have used the caregiver’s app to check on Ben or my dad or known their locations via GPS technology (also invaluable to anyone caring for someone with Alzheimer’s Disease or any form of dementia). It is even possible to check the power level of the devices. This is a tremendous support system. All caregivers need that!
There are no annual contracts or cancellation fees but the services you receive vary by the plan you choose. Options include 24/7 access to urgent care, a GreatCall link for family contact, a personal operator, daily Med-Coach tips (including prescription updates), daily Check-in calls, weekly wellness expert calls, brain games, and product replacement guarantees for stolen, lost, or broken items, fall detection and a fitness tracker.
They may not be able as adorable as Baymax, but GreatCall products are high tech caregiving solutions designed to empower people to feel independent and engaged in life while assuring their caregivers of their safety. I call that a whole lot of pixie dust!
Film clip: The Parent Trap (1961) Walt Disney Productions
In this clip from original Walt Disney Productions The Parent Trap, Sharon- actually, Susan- returns home from camp and is meeting her grandfather for the first time (he, of course, doesn’t realize this). She wants to remember everything about him, including the way he smells.
This scene touches my heart each time I watch it (and when I watch the remake, too!). Memories do give me great comfort, despite the tears they bring. So many of my memories with Ben surround going to Disney films, Disney music, Disney stores and Walt Disney World.
After he was diagnosed with ALS, our trips to Walt Disney World (WDW) really became about reliving and making memories that we could always hold in our hearts. Every experience and every opportunity to take a photo became that much more significant. Those memories are what I have now- bittersweet, and sometimes not happy, but it was life and love.
As the ALS progressed, our trips to WDW became more complicated. By the time we took our last visit there, in July 2014, we were dealing with an additional caregiver, ambulettes to travel to and from the airport, assistance on the plane, an electric wheelchair, challenges with eating, and not being able to go on his favorites rides (The Haunted Mansion and Pirates of the Caribbean). Despite the challenges, Ben was determined to have an incredible time, and he did. I loved that about him.
I was fixated on planning a trip that neither of us would ever forget, filled with all kinds of surprises for Ben. For example, we took the Pirates and Pals Fireworks cruise where we could see the Magic Kingdom fireworks and he got to meet Captain Hook. I knew Ben (and I) would miss being there for Halloween, our favorite holiday and our favorite time to be at WDW, so I worked with the fantastic Disney Floral and Gifts team to surprise him with our hotel room all decorated for Halloween. I remember his face when we arrived outside of our room and there was a big banner with a pumpkin and blinking lights that he thought was a promotion for Halloween and he got so excited. He was completely blown away when I opened the door and it was like entering the Haunted Mansion, which Ben adored. I took tons of pictures and videos for him to enjoy. We also kept all the toys and decorations to decorate our home on Halloween, and I brought them to his room in the hospital to share good memories and Halloween.
I’m so grateful that we were able to relive memories and make new ones. Although I cannot deny that there are tears for the difficulties and ugliness that ALS brought, and for the times we won’t have anymore, I am so thankful to be able to remember him smiling and laughing and being my silly, romantic Ben. I also love the simple memories of that trip: Ben playing air guitar while the band played in the England pavilion at EPCOT, his trying on character hats and choosing t-shirts in the souvenir shops, our holding hands while I walked next to the electric wheelchair or as we watched the fireworks displays, his enjoying the freedom of getting around with the electric wheelchair. Though some people look at the pictures and see how he became very thin with very swollen feet, and that he was wheelchair-bound, I see and remember the joy on his face.
It was too painful for me to decorate last Halloween- Ben had only passed away in August and it was too soon. I do love the photos, and I hope that one day I will want to decorate again and remember the way that we enjoyed it. Maybe this year. I’ll let you know.
Make a memory. Make many. They might be hard to think about or look at in the beginning, but they will be there to embrace if you choose to.
I think most of us have gone through periods when we wish we had a fairy godmother. Come on, admit it! It’s possible that it was more frequent for me when I was a caregiver and Disney was my escape, but whimsy and dreaming are key to who I am. There have indeed been people in my life who have stepped in and brought some pixie dust or “Bibbidi-Bobbidi-Boo” into my life, and sometimes they have come from unexpected places. But, when I have a setback in my emotions, as is happening now, I just wish I could summon Cinderella’s fairy godmother to cast a spell and make it all better.
This past week brought all the tension that most teachers feel as summer winds down and we get ready to get back to the grind. It also brought back the sadness of last year’s bad memories. After spending the entire summer in the hospital, Ben died just a little more than a week before I had to return to school and I was completely unprepared to face the turmoil that teaching in the public school system brings (which could be a whole blog of its own!). The school year began and I went through motions and did my job in a sort of a fog, but I was not coping well in my personal time, and I spent much time crying or staring into space.
This summer I finally had time to relax and invest time in myself and work through some of my grief. I’ve been proud of my slowly growing ability to enjoy and participate in life, though my memories of Ben and my dad remain a big part of everything I do. Given all of this, I wasn’t prepared for the crash of sadness and loneliness in recent days. I can’t seem to stop thinking about where I was at this time last year and I’ve been losing the battle to fight those memories. It’s the ups and downs of grief that are impossible to predict and exhausting to reconcile within myself. I recognize that it’s progress to be more aware of and engaged in the world around me. As I’ve written in prior posts, I do see more glimmers of optimism and desire to move forward. But the waves of sadness and bad memories hit hard. I get angry at myself for giving into the depression. I’ve been through grief enough times to know that this will pass, but will likely happen again because I cannot anticipate the triggers. But, at these times I wish I had a fairy godmother to wave her wand and make everything peaceful and happy. I surely wish a “Bibbidi-Bobbidi-Boo” would make the school year go smoothly, but I’m not sure that even the Disney-est of fairy godmothers could tackle that! Wish me luck!