caregiving

Caregivers Need Some Bibbidi-Bobbidi-Boo

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?

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

 

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

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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Are Your Emotions All TANGLED?

Tangled, 2010
Walt Disney Pictures, Walt Disney Animation Studios

So often I wished I could go back in time to the  pre-ALS and pre-cancer days. Of course, Ben and my dad undoubtedly felt that way, too!  As their caregiver, I had a very hard time finding a balance between time for Ben and my dad and time for myself. I don’t think that I ever did. I didn’t see my friends much, and I was very excited when I was able to go to the theater, ballet or dinner. This could only happen if someone (usually Ben’s daughter) would stay with him. Ben wanted me to do things for myself that made me happy but also hated that he was primarily homebound, which I completely understood. He did not want to have to depend on me, he wanted to be well and independent. We both struggled with guilt and resentment. There were many tangled emotions. I felt just like Rapunzel who was conflicted about wanting to be free but wanting to do what she thought was the right thing and obey her mother (the clip above). I wanted the freedom to have some semblance of a social life, yet I felt completely guilty and nervous about going out. At a restaurant, my phone was on the table in case someone had to reach me. At the theater, intermission was the time I would check my phone, call or text to be sure everyone was okay. I even slept with my phone next to me in case my dad called. At work or during errands, my phone was in my hand or pocket, just in case Ben or my dad needed me.  I enjoyed time on my own, yet I always felt lonely and worried, and I couldn’t keep my thoughts from drifting to how life would ultimately be without them.

Now, too, I have “ups” where I go to a Broadway show or the ballet, or I make plans without having to consider caregiving responsibilities. But those “ups” are followed by such lows that are the grief, and it comes with a sadness that looms over everything.  The role of caregiver comes naturally to me, and despite the stresses, I believe that caring for Ben and my dad was the best and most important thing I have ever done. It meant the world to me when I felt that I’d helped them. I’m floundering now that I do not have to fill that that role, though I will probably always question whether I did the best job I could do. I’m pushing through the lows because, after nearly a year, I know that I need to join the land of the living.  I have begun to want to do things and see my friends. I figure that the joy and stability will come in time if I “just keep swimming, just keep swimming, just keep swimming.” For now, the emotions are still tangled.

I welcome your comments. If you do not see the Comment form at the bottom of this post, click on the title of the post, then scroll to the bottom of the post and it should appear. Thanks.