Grief

What Olaf Knew about Love and Melting

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Walt Disney World,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)

Frozen certainly became a phenomenon among Disney films. There’s romance, royalty, family strife, tested  loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?!

Of course, “Let it Go” has become an anthem for finding all kinds of strength. I know that it is healthier, and I feel better, when I can let go of anger, of bad memories, and of resentment. When I was caregiving and in grief there was a lot of that. I must admit that letting go, in general, is not always easy for me. I have found, however, that it is better to put my energy towards gaining perspective that allows me to let go of the things that are over and done, that I did not create and that I cannot change.

Who would believe that Olaf, the sweet and goofy snowman would so beautifully sum up my caregiving experience at its core.

We all know that we have to take care of ourselves. We have also heard that if we don’t take care of ourselves we will not be able to take care of someone else.  After all, if we don’t take care of ourselves, we might become ill and will then be incapable of caring for someone else. I cannot tell you how many times I was told the airplane analogy of putting on your own mask first, so you could then help someone else. And yet, as caregivers, we do not always take care of ourselves. In fact, we rarely take care of ourselves.  Hearing that advice became irritating because I knew that I should take better care of myself, but I also knew that I couldn’t. Why? Crises occurred, I was exhausted, there was not enough time, and the list goes on. Ultimately, love meant putting the needs of my dad and Ben first.

When my dad and Ben were ill and needed help, their needs were immediate. They had terminal illnesses. If my dad needed to go to the Emergency Room or if Ben needed to shift his position in bed or needed to use the commode, it didn’t matter that I needed sleep to be able to function at work or if my back hurt. I would find a way to catch up on sleep. I would go to physical therapy or take a pain reliever. Their needs could not be postponed.

I’ve written about the stresses and emotions of caregiving. I’ve explained that my loved ones were very concerned about me because I was running in circles, particularly when I was simultaneously caring for my dad and for Ben. It was my routine, my normal, and I just went with it. I do remember that during the time I took family leave, I enjoyed my time on the train, on the way to and from the hospice, because for those 5 hours every day, I was by myself, even though it was with phone in hand to manage any issues that arose during my commute.  Enjoying my thermos of tea on the train while listening to music became my way of taking care of myself.

I don’t think that I realized at the time that I did not really have an opportunity to deeply feel the grief of losing my dad. I was taking care of Ben, who was also struggling with this loss because he loved my dad.  Also, the death of my dad was a scary and sobering reality check for Ben, who lived in denial of that eventuality. For me, it was one step in the sad forecast of my lonely future. I couldn’t grieve with Ben because I did not want to upset him, but I also could not grieve on my own, because there was too much to do and I was working full-time. At times, I did feel like I was melting down, but I did not see any options, and I was so immersed in handling my caregiving tasks and full-time teaching that I just kept plodding along, with a few pity parties and venting to friends and family in conversations or emails and texts. Sometimes that was a distraction from the grief, but it also meant that the grief simmered within me.

I have to explain that although there were times when putting my own needs aside was the obvious and the only solution, it also caused frustration, sadness and anger. I felt depressed and lonely and frightened, and Ben and I were not always patient with each other, which led to resentments on both of our sides. Unfortunately, although I recognized that I was near a breaking point, I could not convince myself to shift my priorities in a way that changed my routines and accommodated my needs.  I write this because saying that love is putting someone else’s needs first does not mean it is always done easily, graciously or without inner conflict. Everyone’s feelings matter, but they have to be prioritized.  Even in retrospect, despite what reason may have indicated, my heart knows that it was the right and only thing to do.

While putting their needs first sometimes caused some melting, it was in the literal letting go of my dad and Ben that I truly melted. But, love meant supporting their wishes.

I did not like to see my dad in a hospice, although he got such wonderful, compassionate care. I melted as I saw him slipping away, but letting him go as he wanted, and very peacefully, was more important than my desire to keep him with me on this earth.

Love meant dealing with the fact that Ben would have gone to a facility if he had chosen to stay on life support. With a tracheostomy and feeding tube, Ben would have needed 24/7 nursing care that could not be accomplished at home. It was a bleak option, but his needs were the priority and as much as it devastated me to think of him in a facility, and it devastated him to accept that he would not be able to be at home with me, we both had to come to terms with that reality. I worried about his being alone while I was at work. I worried that the staff would not be as attentive as I had been. I did not share those worries with him, but I melted when I thought about it.

When Ben decided to go off life support, I melted because I did not want to lose him. I stood by his decision to go off life support because only he could decide how to live and die with ALS. It was a conflict for me because although I was not prepared to lose him, I was relieved that he would no longer suffer with the disease. I was at his side the day he left, we said our vows, and he was surrounded by loved ones and music. It was worth my melting for him to feel loved and comforted as he left this world on his own terms.

I loved my dad and Ben with all my heart. Losing them, particularly so close in time (a year and a half), was very difficult. But, it was worth melting to have shared the love that we did and to let them go and find peace on their terms.

I would like to state the obvious and suggest to caregivers who are reading this that you take care of yourselves and put yourselves first. But, we all know that won’t always happen. Maybe sometimes. Try. Plan. Fantasize! Take moments for yourself, even if it is a mental escape, or a nap, or a quiet cup of coffee or tea on your way to an appointment! But, caregivers, like Olaf, know the true meaning of love.

On Caregivers and Slaying the Jabberwocky

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I saw this quote with an image from the Walt Disney Productions animated film. In fact, it is from the book by Lewis Carroll. Still, it’s a great quote that I could relate to, particularly after my caregiving experiences. After reading the quote, I re-watched the original 1951 version of Alice in Wonderland and the 2010 live action remake. Although I have to admit that they are not among my favorite Disney films, there is a lot of wisdom and insight, as well as some welcome sarcasm, that helped me reflect on the impact of caregiving on my relationship with myself and with others.

My dad’s cancer diagnosis and then Ben’s diagnosis of ALS plunged me down a rabbit hole, alone, devastated and confused. I wanted to be the little girl who was taken care of, but suddenly I had to deal with very adult realities and take care of my loved ones. The teams treating my dad and Ben gave me instructions and details that sometimes tugged at my own beliefs and my emotions. Especially difficult was taking on the role of parent with my own parent. Instead of being the child protected by my dad, I found myself fighting his negative attitude and working with doctors and nurses to make important decisions for his treatment plan while convincing him to comply with orders because he could have a good quality of life. While ordinarily soft-spoken and shy, I learned that I could be a fierce and resourceful advocate. I was insistent and relentless when it came to getting the most appropriate services for my dad and for Ben. There was a lot of information and I was given a lot of advice, and I frequently felt out of control. There were so many people- professionals and people close to me- telling me what I had to do and how I had to deal with things and, when I was spiraling downward, I very easily took direction. But, there were also times that I felt like I could take the reins and make my own decisions. At those times, I did what I felt was necessary, regardless of judgments and disagreements. That was not always easy for the people I had relied on who were used to directing me, especially those people who naturally like to take control and give direction (I do wish I was a little bit more like that!). As difficult as it was for some people to see me making more of my own decisions and taking a stand, it was hard for me to change my own self-perception. It was also hard for me to say no to people, or to express my disagreement. I listened politely, even if I did not heed the advice, because I did not even have the inner strength to disagree. I guess I generally fall into the category of “people pleaser.” To be fair, I believe that people had our best interests at heart and I appreciated that. But, as I saw myself successfully handling more caregiving responsibilities, and my dad and Ben became more and more reliant upon me as I gained better understanding of their feelings, I felt my confidence growing, and with that came a growing resistance, accompanied by some discomfort, to automatically complying with what I was told I “had to” or “should” do.

Tapping new sides of myself- stronger, more vocal, more responsible- definitely has come with growing pains. The “Abby” I was most familiar with was compassionate and caring, but also emotional, indecisive and insecure. Suddenly, I was able to see myself as braver and more assertive. Who was this person? I was always someone who second-guessed myself and relied on the opinions of my friends and family. I valued and depended on them and still value their thoughts. But, I also learned that I have to go with my gut sometimes and I can stand my ground. Learning to trust myself has not been an easy process for me, and it has not been easy for some of the people who became used to nudging me forward.

As Ben’s ALS progressed, and things became much more difficult than Ben was willing to admit, I was frustrated and overwhelmed, and also resentful. I was struggling with those feelings because Ben was dying and I felt that if he wanted to live in denial, then I had to accommodate that. I gave myself all sorts of advice, having internal dialogues about insisting on more paid help, requiring Ben to prepare legal documents to make other important arrangements, and making scheduling changes that might have made daily life more tolerable. I had a lot of good ideas! But, I rarely followed my own advice. At times, I got angry at myself and felt helpless and defeated. I’m sure that it frustrated people who cared about me to see me drowning as I had a good sense of what needed to be done but lacked the emotional ability to make it happen. I have thought about that a lot, and, to this day, although I know that a lot was not right about the situation, I know that Ben felt cared for, protected, and loved. Sadly, I achieved that by often ignoring my own good advice.

I cannot begin to count the number of times I wished that something in my life would make sense. Juggling caregiving for my dad and Ben would have been comical if it was not so serious. There were middle of the night calls from my dad when he was deciding if he should go to the emergency room. If he went, I would ensure that Ben would be okay and arrange back-up if he needed help, and then I would meet my dad at the hospital. From the hospital, there was an endless string of calls and texts to report on my dad and to check on Ben. There were the ridiculous restrictions of what insurance would cover, when clearly ALS is a terminal disease that renders a person needing much care. There were my klutzy attempts to address the needs of Ben and my dad, which they denied were increasing, while trying not to upset or discourage them. There were the routines we painstakingly created that had to be immediately scrapped because Ben exhibited a new symptom of ALS that rendered the plan useless. We just wanted something to make sense. That never really happened, but we embraced it as our new normal, with a sense of humor when possible.

I do love the whimsy and fantasy of Disney. But, if you follow this blog, you see that there is a lot of inspiration and insight in the films, and it helps me. Although I find comfort in thinking about wishing wells and fairies with pixie dust, my life and decisions are quite grounded in a reality that was, for several years, anything but rainbows and magic. As a caregiver, and then in grief, it has been so important for me to surround myself with the things that gave me comfort and let me at least mentally escape. I could get lost in fantasies in the same way that Alice dreamed about creating a world of her own. For Ben and me, Walt Disney World was that special world of our own. Disney films, toys and memories still give me that much needed opportunity to fantasize, but also help me to sort through ugly experiences that come with caregiving and loss. It is so important for caregivers to identify and retreat into the things that provide comfort, insight and perspective, even if it is a momentary escape from the comfort of your sofa.

Here are two great phrases uttered by the March Hare that I wish I had said often, and I pass along to other caregivers, with the hope that it will help you to avoid unnecessary and sometimes downright outrageous conversations with well-intentioned people who are not involved or informed but have a lot of bad advice that they are eager to spout.

OK, you might want to say that more tactfully, but think it just like this and at least you’ll have a chuckle in your head!

As I emerge from grief, I don’t always recognize myself or know exactly who I am or who I want to be. I feel like I’ve changed. But, I can finally say with some pride that, despite my tears, I faced and handled some very difficult situations with and on behalf of Ben and my dad as they took their journeys from this world. There were times that there were conflicts with family and friends, but I honored the wishes of my dad and Ben, and I did what I believed was best and was most consistent with their wishes.

I know that my loved ones want the best for me and that means the world to me. But I also realize that as much as I have gratefully relied on others to guide me when I run in circles, I have to move forward at my own pace, shaping and fulfilling my own dreams on my own terms. I have to determine where I want my life to go. And, I am fortunate that I am surrounded by people who are cheering me on. I do have some inner struggles, and, in a few cases, relationships that I do care about have been strained and tested, and that has not been easy. But, as the White Queen said to Alice, “You cannot live your life to please others. The choice must be yours, because when you step out to face that creature, you will step out alone.” This was also true for Ben and my dad as they faced death, and it is true for all of us.

In the live action Alice in Wonderland, Alice must slay the Jabberwocky to defeat the evil Red Queen. As caregivers, we have our own Jabberwocky to defeat, as we tackle trying circumstances and help our carees battle the demoralizing and painful effects of illness. Though we cannot defeat death, we are fierce in our battle to slay many obstacles and provide as good a quality of life as possible for the carees whom we love.

Bambi and Thumper – A Special Relationship

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Bambi
© Walt Disney Productions 1942

Easter seems a perfect time to honor my favorite bunny, Thumper, from Walt Disney Pictures Bambi.  I’ve always loved Bambi, and have written about the song Love is a Song that Never Ends and how it resonated with me in caregiving and in grief. I recently watched “Bambi” again, and was touched by Thumper’s relationship with Bambi in a whole new way.

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.)

To everyone who celebrates it, I wish you a Happy, Peaceful and Healthy Easter!

Oh Bother!

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Grief,Disney,Winnie the Pooh

The Many Adventures of Winnie The Pooh
Walt Disney Productions

 

For the first time since I started blogging, back in July 2016, last week I was having a hard time writing. I was feeling down, and writing was not helping me the way it usually does. I could not figure out why, and it bothered me.

I write a lot about reshaping my life, which has been an ongoing process. Even though he is gone, Ben has been included in my decisions in redecorating my apartment, traveling, spending my time. I often see things through his eyes and our eyes. Writing about these things, incorporating the Disney things that inspire and console me, is an important part of my healing. So, why was I suddenly having a hard time?

Finding out that the school where I teach is closing got me thinking- more- about how I want my future to look. I have been working hard to reshape my present and I’ve been feeling good about the steps I have taken to deal with grief, honor Ben and even support other caregivers and people with ALS. I even just wrote a post about how I’ve been finding myself. I do have more and more good days in the present, but I flounder when I think about the future. Last week, when I felt overwhelmed with grief again, I panicked and got angry at myself for stepping back into the pain, but it was actually looking ahead that was pushing me forward into anxiety. I realized that I am not only redefining my life in the short term, but also in the long term, and that includes redefining my relationship with Ben. But, I listen to Dory and “just keep swimming.”

Going to “Beauty and the Beast” without Ben compounded my sad acknowledgment that there are “us” things that I will do without him. It has been a year and a half since Ben left this world. I have put some routines in place, but he is very present in my existence. Somehow, when I went to see “Beauty and the Beast” I strongly felt his absence. Missing him is one thing, but living with his absence is another. That he is absent might seem like stating the obvious, and, of course, it is, but up until this point, my thoughts have so revolved around him that on some levels I have felt like I was still in our relationship. Maybe I need to fool myself, maybe it is just part of grieving, but it has kept him with me.

Once I started to piece together what was getting me down, I felt motivated to write this post. I do give myself the time to feel, and once I begin to sort out the “why” of the feelings, I do begin to feel better. At least, I understand my emotions, which allows me to be more patient with myself. In grief, as time moves on, we question our feelings, our thoughts and our “progress” as we step back into the land of the living. At a certain point, we might ask ourselves if we should be “over” the setbacks. And, if we don’t question it ourselves, we often have people around us who will point it out (click here for a way to deal with them)! I am finding that there are and will be steps forward and steps back, there will be adjustments, and there will be what feel like slaps of reality. They hurt. Sometimes, to work through the bad patches, I need the support of friends and family whom I trust to be honest but compassionate. Sometimes, I just need time to be in the moments. But, I do believe that it’s all okay. Or, it will be.

I always welcome your comments and experiences in the reply section below.

How Does a Moment Last Forever?

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Walt Disney Pictures 2017

I was excited to see the live action Beauty and the Beast on its opening weekend. Beauty and the Beast was a special film for Ben and me, so I knew it would be emotional to see it without him. I tried to see it through our eyes, as if he was sitting next to me. Sometimes that made it easier, sometimes it made it harder. When I love an animated film, as I do Beauty and the Beast, I worry that the live action will disappoint. It did not. Beauty and the Beast was absolutely spectacular, with excellent casting. I was captivated. And, at the end, I could feel Ben smiling. I, of course, was a puddle of tears!

In the beginning of the film, Belle’s father, Maurice, sings a lovely little song with these lyrics:

How does a moment last forever?
How can a story never die?
It is love we must hold onto
Never easy, but we try
Sometimes our happiness is captured
Somehow, a time and place stand still
Love lives on inside our hearts and always will

Here is the music clip:

 

Caregiving,Grief,Disney,Beauty and the Beast

Beauty and the Beast (2017)
Walt Disney Pictures
Pictured: Kevin Kline (Maurice) and Emma Watson (Belle)

These lyrics touched my heart, so simple and yet so profound. I know that Ben would have handed me tissues knowing the tears would flow. But this is the magic of Disney. At the heart of the whimsy and fantasy lie our deepest emotions.

I believe that these lyrics beautifully capture the thoughts of caregivers and those grieving the loss of a loved one. In caregiving, I grieved the loss of the life we had. I grieved what ALS took away from Ben and from us. I grieved the relationship we had as it shifted to that of caregiver and patient. We clung to memories and those brought a mix of pain and joy. And, we both lived with the knowledge that Ben was going to “leave,” as he referred to dying.

In grief, I have relied on the memories and the love that we felt. The heartache is there, but as the song says, “it is love we must hold onto.” I write so often of the importance of the memories that keep Ben in my heart. Love and our stories will always keep him there, along with my parents and other loved ones.

Early in our relationship, Ben gave me this frame with his own picture inside.

I immediately got the soundtrack to the film, which I also heartily recommend. And, although it makes me cry, I keep listening to this song and the longer version, performed by Celine Dion. Just like “One Dance,” this song struck a chord (pun intended) within me!  Sometimes I am caught off-guard by overwhelming emotion and at other times I just need to immerse myself in the grief and have a good cry.

Music and lyrics were so important to Ben. I believe that he would appreciate how the lyrics of this song spoke to and moved me, and how they confirm that he will always live on in the song that was our love and life.

As for the comparison to the original, animated version of the film, I love them both. When I came home after seeing the new version, I immediately watched the Blu-Ray of the animated version. It remains dear to my heart. I don’t think they detract from each other in any way. In my opinion, they are both wonderful. I will enjoy watching them both on Blu-Ray!

I told Beast that he was much more handsome in person!

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