grief

What Olaf Knew about Love and Melting

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.

Oh Bother!

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?

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!

So This is Love… The World According to Cinderella

Cinderella, Disney, ALS, Grief, Caregiving

Walt Disney World
July, 2014

 

“Cinderella” is celebrating a birthday today. The film was released on this date in 1950. She was my favorite princess when I was a child. She remains dear to my heart because there is more to Cinderella than what meets the eye. She had feistiness and determination, and also a loyalty to her father’s memory that let her tolerate the poor treatment by her stepmother and stepsisters and maintain her dignity. Cinderella knew the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect and power!

Cinderella knew at her core that, despite treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort. Now, as I work through grief, dreams help me to redefine myself and reshape my life. No one can tell me that dreams are not valuable and important.

It’s pretty cool to make dreams come true, too. Ben wanted so much to go to Walt Disney World as often as possible. That last trip we took, in July 2014, was a dream come true for him. It was a challenge, and I wished a lot for things to go smoothly. They went fantastically! We even had a Walt Disney World Halloween in July! Now THAT’s pixie dust and Disney magic at their finest!

Ben and I with Cinderella
Walt Disney World
July 2014

Maybe you didn’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be ok.

Cinderella,Disney,ALS,Grief,Caregiving

Cinderella, 1950
Walt Disney Productions

During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.

There is a song in the film, “So This is Love.” The song is sweet and romantic, and love is beautiful. In the rough times, it is easy to lose sight of those feelings. The thing is, when we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.

At the heart of the film is the song “A Dream is a Wish Your Heart Makes.”

A dream is a wish your heart makes
When you’re fast asleep.
In dreams you will lose your heartaches.
Whatever you wish for, you keep.
Have faith in your dreams, and someday
Your rainbow will come smiling through.
No matter how your heart is grieving,
If you keep on believing,
The dreams that you wish will come true.

I’ve always been a dreamer. I believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Fairy Godmother said, “Even miracles take a little time.”

 

Remembering My Daddy

Today marks 3 years since my dad, Jacob, left this world. Not a day goes by that I don’t think of and miss him. I miss his laugh, his kindness, his advice, his sense of humor, and his history lessons. He was a proud Marine, and a real patriot, and I’m glad he’s not witnessing the current events in this country. He’d be pretty devastated, and he would also be reminding me that history does indeed repeat itself.

I wrote notes about my relationship with my dad for the Rabbi to present at his funeral. I thought that on this day I would share them to let people know a little bit about him. He would say he did not want any attention, but he deserves it.

My dad was a one-of-a-kind. He was so funny, so kind, so generous, but he liked you to think he was Archie Bunker. I don’t think he ever knew or believed how loved he was.

He was such a proud Marine. He wore his USMC cap so proudly and loved to run into other veterans and share stories. But I was his Private Benjamin. The first time I drove him to the VA out in Northport he just shook his head when I clapped and waved as the guard at the gate saluted us when I flashed Daddy’s VA card. Daddy saluted, shook his head and laughed.  Although he was not an observant Jew, his Marine Corps experience, where he was one of 3 Jews, gave him a sense of pride in his religion and he did not tolerate any discrimination, gaining the nickname of “that crazy Jew” because he would fight anyone who even looked like they were going to say anything derogatory. He trained down south during the days of segregation, and he remembered with sadness and contempt the way he was not allowed to sit on the bus with his African American USMC buddies and how disgusted he was by those attitudes because it was so different than up here.

He lived and breathed dogs but really loved all animals. When I was a little girl we used to read the Dog Breed book all the time. I knew every breed and I used to say that I couldn’t be Daddy’s daughter if I could not identify every kind of dog!  But, he took great pride in his dogs and Schnauzers were our breed. The whole neighborhood knew my dad as Dulcie’s dad. And we all lived by the motto of “love me love my dog.” He was delighted when a group of kids told their sister, who was afraid of Dulcie and making a bit of a scene, to “go inside if you don’t want to play with Dulcie” instead of telling Dulcie to go away. When he was selling our house, a real estate agent brashly told him to put the dog outside. He told her she could stand outside but the dog lived there. She left and never came back. My dad was fine with that! He used to leave messages for my cat when he knew she was alone and let her know that it was a grave injustice that her mommy left her alone.

He was so proud of me and excited that in 2010 I finally was able to launch my dream pet souvenir business and he loved helping me with ideas and business advice. Just last weekend Ben put pictures from a recent dog event I was asked to participate in on his iPad so I could show them to my dad. He loved to look at the pictures and was interested so in my life that he even knew my doggie friends by name.

He had such a good sense of humor and was also a prankster. He got such a kick out of calling companies to review their products or ask questions and having them send him coupons.  Once he called me laughing so hard about his call to Uncle Ben’s Rice. He drove the poor girl crazy asking about the measurements, explaining that his mother in law had always cooked for him but now he was on his own. She asked him to hold on and he heard her say, “I don’t know if this guy is sorry that his mother-in-law died, but I sure am!”

He liked teasing my grandmother, sometimes by pretending to sneak into the kitchen to steal her freshly made matzah balls, to the point where she started counting them! To this day when I bake the cookies and hamentashen she taught me to make, I count the number of each shape and/or flavor!

He loved to laugh and to make people laugh. His facial expressions were priceless. His humor made stressful situations tolerable. I remember giving him books on Jewish humor and how he would call me to read some of the jokes, laughing so hard with his cutest laugh. He called me when he was watching our favorite comedies to recount a scene as he was watching it, and his laughter was so contagious that it always made laugh. Some of our favorite quotes came from Mel Brooks’ “The History of the World: Part 1,” “Tootsie,” “Guess Who’s Coming to Dinner” and “Hope and Glory.”

My dad loved history and military aviation. He knew so much about WW2. It was a challenge to find books about things he didn’t know, but he loved to read. I used to call him from Barnes and Noble and read the summaries of the new arrivals to see what he responded to. When there was someone or something that he didn’t know well, I knew I had a winner! Ben and I used to find documentaries for him and Ben would convert them to DVDs. He loved seeing footage he had never seen, and it wasn’t easy to find it!!!  And we had many, many discussions about history.

As much as he loved gadgets, he had no patience. While he screamed about the bad instructions, I constructed tv stands and bookshelves. FIOS drove him crazy. I got many frantic phone calls when he could not get the tv to work. Ben and I downloaded manuals with the remote layouts so we could walk him through possible solutions. Ironically, he was a master at his trade in heating/air conditioning and was incredibly good at home repairs, helping neighbors and families with boilers, clearing floods, making heating/A/C decisions. Even from the hospice he gave me the perfect solution for dealing with the radiator and my freezing apartment.

He was like a father to Ben, who has ALS/Lou Gehrig’s disease, and was always looking for any gadget that would make his life easier. And they often do!  I never had dinner with him where he didn’t order something for me to bring Ben, who cannot really get out very much at all any more. In the days when we did visit my dad, he would show Ben his gadgets, books and WW2 bullet casings and they would sit and talk about the wars. They both loved it.

I always knew how loved I was and I loved him. We used to speak maybe 5 or 7 times a day, sometimes to share what was on TV, or make each other laugh, or more recently, when he was living alone, I would remind him to eat and see how he felt every time I had a free period at school.  Because I was a Spanish teacher he started watching Spanish television and he would call and ask me what words meant. I used to joke with my students that he worked harder than they did. But, it also intrigued them that my dad cared so much about what I did. And that was an important life lesson for many of them.

He was a man who was so devoted to his family. He always said that he just loved to hear my mom and I giggle with my grandmother. He was so proud to send my mom to meet me in England, even though both of us were amazed at her inability to work a luggage cart! He took care of my grandma, his mother-in-law, driving to and from work in Brooklyn to Woodmere to drive her to the beauty parlor, wait for her to be finished, drive her home, and then go back to work. He was honored and almost humbled that Uncle Larry called him every single Friday. He really missed Uncle Larry. There isn’t a friend or a child of a friend of mine that he did not ask and care about.

He was generous and was more comfortable giving than receiving help.  He taught me by example to be kind, generous and compassionate and to have a sense of humor. I already miss the phone calls. But I am still talking to him.