caregiving

Making a Memory

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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.

Caregivers Need Some Bibbidi-Bobbidi-Boo

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Cinderella (1950) Walt Disney Productions

Cinderella (1950)
Walt Disney Productions

 

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!

“Time Passed and Pain Turned to Memory.” True?

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The narrator says this in reference to Cinderella's grief over the loss of her mother. Cinderella © Disney 2015

The narrator says this in reference to Cinderella’s grief over the loss of her mother.
Cinderella © Disney 2015

Only a few days ago I posted a video slide show of favorite memories of Ben. One year is a significant marker of time for me and I was very uptight as I anticipated the sadness that I did indeed feel when the day arrived. I don’t know what I expected to happen after I hit that marker, but I woke up the next day feeling so sad. I still feel down. Time has passed but pain has not turned to memory. Both are still quite strong. So, this quote from the 2015 Disney “Cinderella,” which was so powerful to me when I heard it and still remains with me, gave me pause and I had to think about it.

I relish the happy memories and cannot shake the pain of the devastating ones. If pain turns to memory, does pain go away?  Is memory really complete if it does not include the pain and the joy? Is it all a matter of time?  I would think that having lost my mom, my dad and my grandma- that I would be prepared for the flow of emotions that come with grief. I still feel pain at their loss, though I admit the sharp pangs have changed. But, I think that being the daily caregiver for Ben, and seeing the excruciating challenges of ALS, left an indelible mark on who I am as a person and how I see the world. I am stronger and more resourceful than I ever thought I could be, and yet, I am as much of a crybaby as I ever was. I’ve always placed a high value on being compassionate, even if I don’t know that I showed it all the time. Ben and I also were shown a lot of compassion, and it hasn’t always come from places I expected. Through this experience maybe I have a more open mind and heart. But my heart has also been somewhat broken by the cruel nature of the disease and the turmoil it caused. Maybe time will temper all of these dramatic feelings but I feel like as time passes, pain is entwined in memory but it doesn’t turn into memory.

I’m not sure of what my expectations should be of myself and how I handle my grief after a year. Should I consider the expectations people have of me and how I handle my grief from this point forward? Should their expectations influence me?  If so, even if I don’t feel very different all the time, should I act like the pain has just evolved into memory? Should I speak less about Ben? Should I let people see that I still have really sad moments? Should I stop looking back?

I can say that although the bad times are still ingrained in my mind, and I do get depressed, I also do feel a change within myself. I still feel the pain of losing Ben, but I can view that pain as part of sixteen years of so many memories with him, only the last six of which involve his life with ALS and mine as his caregiver. I feel a gradual shift from continuing to live within the pain of suffering and loss, to embracing the wide range of memories, and the feelings they bring, but also trying to define my new “present.” While I am struggling with frequent episodes of drifting back to sadness and dwelling on my memories- good and bad, I have also begun to at least see a “forward.” I have to fight the idea that moving forward is disrespecting Ben’s memory and our relationship. That is an uncomfortable feeling that I have to learn to accept and navigate. Pain, sadness, joy, anger- a bevy of feelings and emotions- are all part of cherished memories and I do have faith that over time they will continue to shape me and lead me towards a bright future.

Colorful Insight into the “Inside Out” of Our Emotions from Disney Pixar

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If you haven’t seen Disney Pixar’s Inside Out, I highly recommend it. This very clever and colorful story 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?

Like Joy, I always wanted to cheer up Ben and my dad. I tried to push sadness- theirs and my own- into a circle. If only it was that simple! But, if they were really sad, that really was ok, and if I was feeling sad, that was ok, too.  The truth is, sometimes embracing the sadness or fear and working through it together, or just being a shoulder to lean on in the sad, angry or scared times, did lead to some really loving and joyful moments that are now the bittersweet memories.

I can’t assign just one emotion to each memory. I remember that Ben and I were so delighted to be able to take that last trip to Walt Disney World in July 2014. When we were there we had our usual fun and funny times- my desire to repeatedly ride It’s a Small World, his delight in shouting to Winnie the Pooh and Tigger on that ride, the excitement of meeting our favorite friends, loving the magic of Fantasmic,… Ben always said, and I agree, that when you go to Walt Disney World you simply forget all of your troubles.  But, we had big troubles. So while we laughed, we also cried, because in our hearts we knew that it would likely be our last trip and we were scared of what the future would bring. Now, I look at our photos and videos with a smile on my face that often turns into tears –I’m also sad and angry- I miss him and I know that we won’t have more of those memories. But, I also remember and will forever admire Ben’s bravery and determination to feel joy despite his own sadness, fear and anger at what was happening to him.

This week will mark one year since I lost Ben, and 2 1/2 years since I lost my dad, and I’m still feeling a wide range of emotions. I probably always will.  My fantastic friends have been my “Joys” who try to cheer me up and provide comfort. It is always appreciated. Sometimes I have, indeed, been distracted, but joy doesn’t always win. The other emotions speak volumes. It is exhausting to pretend to be cheered up! Equally exhausting for them to deal with my sadness and depression, I’m sure!  Now, at least those emotions have evolved into beautiful memories of very caring friends who are my family and for whom I continue to be grateful.

The highs and lows are difficult, but I try to give myself time to just feel. Sometimes the memories are lovely, sometimes they are painful, but it’s love and loss, it turns me Inside Out, and it’s all ok.

Love is a Song that Never Ends

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

From Bambi (1942)
Photo: Walt Disney Pictures

Click to play

“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.

This is a song with words that I found comforting as a caregiver and now, in grieving and sorting through memories.

There were days that were hard, and neither Ben nor I were at our best with each other. I still look back on those days and feel sad. But, it’s difficult beyond words to need a caregiver, and it’s also difficult to be a caregiver.  We were both overwhelmed by the whole situation- the ALS and what it was doing to him, his ever-increasing need for care, the confines of a small apartment, and our relationship that felt like it was shifting from one of husband and wife to one of patient and caregiver. We had so much love, but it was at times overshadowed by sadness, fear, resentment and guilt. It was an emotionally trying situation for both of us.

As Ben’s physical health diminished, it was hard for both of us to feel hopeful, or cheerful, or “normal.” ALS is unpredictable in its progression. We never knew what difficulty Ben would face. Less use of legs? hands? arms? speech? swallowing?  Every day brought the possibility of a new or worsening condition. Nothing was going to get easier, though we hoped it would take a long time for things to get worse. We did try to adjust to the difficulties with humor, too.  Ben  was very entertained by all of the concoctions I made in the Cuisinart to accommodate his taste and need for finely pureed food. I became quite the creative chef!

It was often while reminiscing about our trips to Walt Disney World- such joyful and silly times- that we would be reminded of some of the best and most carefree parts of our 16 years together. Good friends and family to email or vent to, keeping a journal, and occasional therapy also helped!

Hope and love got us through very difficult and ugly times. Now, there is the hope that he has found peace and is free of the constraints of the disease, in a place where he can walk or run, eat, talk and sing. And love’s sweet music will always flow on in the form of beautiful memories.

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