Disney

Ten Things I Learned About Caregiving From Mary Poppins

Since today, October 1, marks the 82nd 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:

  1. “In every job that must be done there is an element of fun.”

Mary Poppins 3

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.

  1. “Worrying won’t help anyone.”

Mary Poppins 4

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.

  1. “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:

  1. “Never judge things by their appearance…even carpetbags. I’m sure I never do.”

Mary Poppins 7

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.

  1. Sometimes a little thing can be quite important.

Mary Poppins 1

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.

  1. Best foot forward. Spit spot.

Mary Poppins 6

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!

  1. 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

Mary Poppins 5

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.

  1. 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!
Mary Poppins 2

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!

  1. 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:

  1. “Mary Poppins. Practically perfect in every way.”

Mary Poppins 8

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.

Happy Birthday, Julie Andrews! Thank you for all of the joy you’re brought!

All photos: Mary Poppins (1964), Walt Disney Productions.

Do The Emotions of Grief Turn You Inside Out?

Inside Out (2015) Walt Disney Pictures, Pixar Animation Studios

Disney Pixar’s Inside Out is a very clever and colorful story, meaningful to children and adults, which takes you into the headquarters of 11-year old Riley’s mind, where her emotions- Joy, Anger, Fear, Disgust and Sadness- vie for attention, with Joy trying to keep the other emotions in check. In caregiving and in grief, my emotions have been all over the place, often at the same time!  After all, even on a regular day without any unusual circumstances, our emotions can run the gamut, right?

It has been two years since I lost Ben, and 3 1/2 years since I lost my dad, and I continue to feel a wide range of emotions. I probably always will. I read many comments from others in grief whom, after what they, or others, consider to be a reasonable amount of time, ranging from a matter of weeks to years, wonder if they should be less affected by the sadness. I have questioned my own grief and emotions, too, wondering if I was handling things “normally” and if should be having the setbacks I have. What I have found is that, although the highs and lows are difficult, I need to give myself time to just feel. Although I tend to bounce back more quickly now, setbacks happen. Conflicting emotions happen. In fact, they happened over the past few days.

I have been having some computer issues and decided on Thursday that I had to organize my files in order not to lose any data. I had to decide what files to put on each computer and on external drives. I am not naturally organized, so this is not an easy task. I have postponed this endeavor because I miss doing this kind of thing with Ben, who was a computer wiz, professionally and as a personal passion. I feel like I need a bigger hard drive, something Ben would have determined and resolved with ease. I am working around it, putting files on external disks and the Cloud. I’m frustrated and so sad. I finally had a complete meltdown, crying and telling Ben how much I missed him and how the computer things were no longer fun without him.

I trudged through and although I’m pretty sure I’m not setting things up efficiently, I’m working through it. I hired a great tech guy once before and I can do it again. But, of course, he’s not Ben. He doesn’t know how I think the way Ben did.

On Friday morning, I plugged my brand new flash drive into the television to watch a film. Instead of the film, suddenly and unexpectedly, Ben’s face filled the screen, accompanied by The Beatles’ In My Life, his favorite Beatles song. It was a video that my lovely and thoughtful friend Maria made just after Ben died, comprised of pictures of us. Unprepared to see it, I burst into tears, though I remembered each picture with love and even smiles. I was completely unnerved. I could have stopped the video, but I felt compelled to experience all of the emotions. As I’ve written before, sometimes it’s perfect to have a good cry.

The video that appeared on my television screen.

If that did not unnerve me enough, the next video began playing automatically. It was the portion of my dad’s funeral when the USMC folded the American flag and presented it to my brother, followed by them playing Taps. I had very mixed feelings about recording it, but Ben was very upset that he could not attend the funeral, and it meant a lot to him to watch the video as a show of respect and love for my dad.

I felt weak. Again, I could have turned off the video but I had to watch it. I heard myself crying on the video, echoed by my crying on my sofa. My dad would have been very honored by the ceremony, and, at least amidst my tears I felt a sense of pride that I was able to arrange this as part of his funeral. But, it was simply too much unexpected emotion.

I’m sure that those video files ended up on that new flash drive because I was transferring many files from one device to another. But, I do not remember putting any videos on that flash drive except for the movie I was going to watch. I certainly did not remember seeing and transferring those videos. Things like that come across to me as signs from my dad and Ben that they are with me. But, they are setbacks for me. All of the sadness and tears, along with the good memories, swell within me and turn me Inside Out. I know that there are people who feel that it’s been more than a couple of years since these losses and I should be able to deal with these moments better. Maybe they are right. But the losses were heartbreaking for me and will always be profoundly felt. Unanticipated events will always trigger sadness. But, the emotion is okay. In fact, I feel entitled to it. In my mind, it means I was fortunate enough to have love and relationships that were wonderful enough that I do miss them. The sadness, anger, fear and frustration of caregiving and ultimately, grief, are intermixed with the love, satisfaction and deep relationships that existed and grew throughout it and now, afterwards. Although I was shaken by the video footage, and I did cry, I was grateful for the visual reminder of the love that was there in good and bad times. This film clip from the Inside Out struck me because it showed that we can aim for joy, but it’s just not that simple, because our experiences are comprised of so many emotions and moments of significance, and sometimes joy arises from or coincides with anguish in unexpected ways.

The fact that I find these hard times to be setbacks means that I am not living in the grief, I’m just visiting with it from time to time. Emotions coexist within us and, I suppose they each need their moments in the spotlight, whether or not we are prepared to indulge them when they are triggered. Grief has its own timetable and we each journey through grief in our own way, at our own pace. Sometimes people are not patient with us, but we must be patient with and kind to ourselves.

On Mulan and Reflecting What’s Inside

 

The new school year started last week. It had me thinking about the past several beginnings of the school years. Honestly, they were not great. I was going from a difficult caregiving situation to a challenging and often unpleasant, bordering on abusive, public middle school environment. While teachers were sharing fun summer stories, I sat quietly, smiled and shrugged if anyone asked me how my summer was.  I was the caregiver with the dad and husband who were both dying. I did not have fun summers. I did not have fun weekends. After I lost both of them, I was the person in grief. In 2015, was not prepared to return to school just two weeks after Ben passed away, and I went through that school year in a bit of a fog, largely just going through motions.  When people looked at me, they saw my experiences in caregiving and losing the people I loved. Well, that and anything Disney-related.

Ben loved Mulan and he really loved the song in this clip, Reflection. I can relate to it, although Mulan was struggling with her identity within her family.

Somehow I cannot hide
Who I am, though I’ve tried.
When will my reflection show who I am, inside?

I’ve written a lot about feeling like I am floundering because I am no longer a caregiver, which was my role for several years. Caregiving consumed my life. I did what I was expected to do but also what I felt in my heart was the right thing to do. Despite the emotional and physical stress, it was the most important, valuable and loving work I have ever done. The attentive and devoted caregiver was who I was inside and out. Caregiving also revealed to me a strength that I never would have believed I possess, and that my often emotional demeanor would never have conveyed. Once that role was removed, I lost myself and my reflection was blurred.

Now, when I look at myself, I don’t really know who I see. I do have more moments when I feel like the more eccentric and whimsical person of my pre-caregiving days. But, I cannot- at least for now- compartmentalize my caregiving experiences and losses.  The truth is that I have embraced my caregiving qualities as positive parts of myself.  It is an accomplishment to feel proud of myself, and caregiving did that for me, though it took a long time for me to realize it.   My struggle is finding a balance of being true to Ben and my dad, and true to myself, while living in the present.  I wonder if and when I am talking about and reliving too much about Ben. I want the Abby I am now to reflect all of those experiences without remaining immersed in them.

Over the summer, I was fortunate to find a new position in a wonderful school. I am back in a high school, which is my preference. As I was gearing up for my first day in that building, I realized that people would not know my story. I was no longer going to be known as Abby, Ben’s caregiver, or Abby who was so devoted to her dad and her husband. I will just be Abby. I guess that offers many possibilities for self-exploration and reinvention. I know that inside myself, I will hold all of my love and experiences. The problem I have is how to reflect on the outside what I feel on the inside and not remain in the past.

When asked to introduce myself at professional meetings or in my personal life, I feel like I’m not really sharing who I am because I do not talk about caregiving, my dad, or Ben and his ALS. I see myself more as a caregiver than anything else. Being my dad’s caregiver and his whole world, and being the person at Ben’s side throughout his battle with ALS are a vital part of how I see myself, even though those actual days are done. Presenting myself apart from Ben, as a person on my own, seems incomplete, and almost disrespectful. I have to keep reminding myself that Ben is still a part of everything that I do and we will always be connected. However, I have to find my own way now.

I do often see signs that Ben is with me. I received one on the second day of school with the students. At this school, instead of bells to signify the beginning and end of class, they play music. It’s quite fun. As students trickled into class, The Beatles’ Twist and Shout came over the loudspeaker. Ben LOVED The Beatles, and it was when Twist and Shout  played at a gala for the organization were we met and worked, that, for the first time, Ben pulled me onto the dance floor. From that point on, we danced to it whenever we heard it, even when I had to hold him up as ALS claimed his legs. I found myself smiling instead of crying, as I turned to the kids, whom I don’t really even know yet, and told them that this was the first song I danced to with my husband. Of course, high school girls love romance, so there was lots of gushing. I knew in that moment that it was a sign that Ben was with me as I embarked on new experiences in this new school.

All of our experiences help us grow and evolve. I will always see the people I’ve cared for, loved and lost in my reflection and I am proud and comforted that this will always keep their spirits alive and close. I hope that what others see in me honors them and our love and does justice to all of us.

Reflection:
Music by Matthew Wilder
Lyrics by David Zippel
Performed by Lea Salonga

Mulan (1998)  Walt Disney Feature Animation

More Than “Just Keep Swimming”- Wisdom for Caregivers from Dory and Hank

Brave Disney during her hospital stay.

I have written before that although I lost myself when I was caregiving, I also found myself in caregiving. I might have fought it when things were difficult or devastating, but I also learned to embrace the beauty of caregiving and to recognize the strength that I do possess when I am in the role of caregiver. I have lost my dad and Ben, but my role continues and it is a perfectly imperfect fit. That became especially clear to me over the past few days, while caring for my ailing cat, Disney.

Disney is almost sweet 16, and sweet she is. She is the most gentle, loving girl, and a little bit of a spoiled brat, but as Ben would say, I created that monster. She’s got a lot of medical issues- diabetes, thyroid, arthritis, heart murmur. With each diagnosis or complication, I’ve channeled my inner Dory and I “just keep swimming.”

Disney was originally diagnosed with a thyroid problem and diabetes just two weeks after Ben passed away, and the news sent me reeling but I was not going to let the undertow drown me. I was told that I would manage her condition by administering injections of insulin twice a day. I am a squeamish person and this had me terribly nervous. But, I reminded myself of all the very ugly and messy things I had to do for my dad and for Ben. “You are braver than you believe, stronger than you seem, and smarter than you think.” Yes, and thank you, Christopher Robin, I am. Disney is a wonderful patient, and she makes things pretty easy. She has begun to eat the pill pocket containing her thyroid medication, leaving the pill visibly displayed for me, showing that I have not outsmarted her. But, as her caregiver, I have to ensure that she gets what she needs.

A couple of days ago I took Disney to the veterinarian for a follow-up visit, pointing out that she was not eating as well as usual. The vet suspected some kidney damage and an infection. Her blood sugar was also very low. She stayed in the hospital overnight for glucose infusions and monitoring. Then, it was determined that she should have an ultrasound. I was able to visit her during her two night stay, and when I was with her she curled up against me and closed her eyes, because all is well in Disney’s world when her mommy is with her. I love the quiet, sweet moments when I know that I am comforting her.

Visiting hours for Disney.

We were sent home with new medications, including one to be given with a syringe, and fluids to be administered under her skin with what looks like an IV drip. I think her vet thought I would pass out or break down as I wrote down all the notes and when I saw the set-up. As Dory says, “You can do whatever you put your mind to.”

When we got home and before we went to sleep she was not acting right. She had two accidents on the bed, which I attributed to the infection. But, she was extremely lethargic and wobbly. Then, she had what turned out to be a seizure. I held her in my arms and she calmed down. After another similar episode, I decided that I had to call the Emergency Room at around 4:30AM. The doctor asked several questions and heard Disney’s distress meow, and said that I should get her to the ER. I sat and waited for a report, as I had done so many times with my dad and Ben. I felt that same exhaustion and worry. And, I realized that although I was distraught, I only wanted to care for and console this little girl whom I love so much.  I am most comfortable in the role of caregiver. It is who I am.

It turned out that Disney’s blood sugar was super low, and had I not taken her to the ER, she might even have died. I am still having trouble wrapping my head around that. She was kept in the hospital for several hours for monitoring while they intravenously administered dextrose. She perked up and was doing much better, so I was allowed to bring her home.  We are adjusting her insulin dosages but I must carefully watch her behavior and reactions. As I cancelled my weekend plans with friends to be with her, I had flashbacks of the many plans I had to cancel or postpone due to issues with my dad and Ben. Of course, there were times I was very disappointed about not going out, but caregiving was my priority and, at the time, because of so many conflicting emotions and so much chaos, I don’t think I even realized that I took pride in being the person they trusted and on whom they depended. It is only in retrospect that I began to realize that it was through caregiving that I really knew who I was and what I was meant to do. Now, I know that Disney will feel better if I am home with her and I love that I make her feel better and that I will be able to give the vet necessary information to inform the treatment plan as we move forward.

I was afraid to go to sleep last night for fear that something would happen. Eventually, we both fell asleep. I awoke to her on the bed staring at me. She did not want to eat much of her breakfast, which has me concerned, but I will be in touch with her veterinarian. She definitely was not thrilled with all of the medications, but was very cooperative. She has been very cuddly and purring a lot, which is a good sign. As I’m writing this I am smiling, because although this is stressful, it is the normal with which I am most comfortable. This is who I am. And, for the first time, I’m feeling proud of it. Like Hank, I’m OK with crazy!

I admit that I am terrified of losing Disney. Intellectually, I know that she has health concerns, and that she is a senior cat. Emotionally, she is just such a lovely cat and she has been there for me as I cared for and lost my dad and then Ben. At my loneliest, most frightened and most inconsolable, she was there with cuddles. She is the cuddliest cat I’ve ever met. People who don’t love animals don’t understand. People like me, who love our pets, don’t understand people who don’t understand the love we feel for our furbabies. But, I was raised in a family that unquestionably valued our dogs as family members. My dad loved my cats, too, though he did unabashedly compare them to our Schnauzers! Some people might take offense at my comparing caregiving for Disney to that of my dad and Ben. I can tell you that my dad would have had it no other way and he would be flattered. Ben would completely understand and he, too, would be flattered. The bond that is felt when caring for someone you love, human or otherwise, is profound and priceless, despite the difficulties.

I summoned the courage to ask the vet if she felt that I should brace myself for losing Disney soon. Thankfully, she said that we do not yet have to make that decision. But, she said that with all of Disney’s health issues, it is a challenge to manage all of her conditions. It is a lot of medication, additional vet visits and always the risk of ER visits. This is a big financial and emotional expense and challenge. In my mind, if she has a good quality of life and just needs management of her conditions, I am up for the task. Disney has always risen to the occasion of comforting me and giving me joy and laughter. She did that for Ben, too. She was definitely affected by the way he changed as a result of ALS and in her own way, she was protective of him. When he was in the hospice in his last days, I was allowed to bring her to visit him. At first, she didn’t like being on the bed with him because her arthritis renders her uncomfortable at times. She sat on the chair next to him and intently watched him. At one point he asked me to lift her and put his hand on her. When I put her on my lap to bring her closer, she pulled herself onto the bed and curled up on him. I put his hands on her and she turned on her side. They both closed their eyes. I believe that in that moment they said their good-byes. It was beautiful. For me, Disney represents a very close remaining connection to Ben. I’m sharing a photo of them in the hospice. I generally don’t share these personal photos, because they are difficult memories and private, but I do think that it is important for people to see the realities of disease.

Disney watched Ben throughout their visit in the hospice, even when he slept, as pictured here.

I will never be selfish and prioritize my desire to keep Disney with me over her quality of life. But, once again, I am lovingly, proudly and purposefully, though sadly, in the position of caregiver, and I will do whatever I can to give her a good quality of life and a lot of love, as she did for my dad, Ben and me.

Disney thanks everyone for their well wishes while she recuperates.

Bambi’s Story Rings True After 75 Years!

From Bambi. (1942)
Music by Frank Churchill
Lyrics by Larry Morey
Photo: Walt Disney Pictures

Today marks the 75th anniversary of the release of Walt Disney Pictures Bambi. It is a special film to me, and has become even more special during my experiences in caregiving and grief.

One of my very first posts was a reflection on the lyrics to “Love Is a Song That Never Ends.” Click here for that post. I frequently refer to that song. Here is the song clip to accompany the lyrics:

Love is a Song that Never Ends
Music by Frank Churchill
Lyrics by Larry Morey

Love is a song that never ends
Life may be swift and fleeting
Hope may die yet love’s beautiful music
Comes each day like the dawn.

Love is a song that never ends
One simple theme repeating
Like the voice of a heavenly choir
Love’s sweet music flows on.

Love guided us through even in the darkest and most trying times. The truth was that as much as we loved each other, when there was stress, we did not always show each other our best sides. We were scared, devastated and angry at what life threw at us. We were human. Now, nearly two years after Ben has left this world, I continue to sort through emotions, but the profound memories that I have – of the more carefree and healthy days as well as the most challenging caregiving and grief-filled days- constantly remind me that “love’s sweet music flows on.”

I wrote another post about the wonderful relationship between Bambi and Thumper.  The following most delightful scene took on a new meaning for me.

What I wrote in that post bears repeating:

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.)

Happy Anniversary, Bambi. And, thank you!