Disney

Happy Birthday, Ben, My Mickey! Thoughts On National Caregivers Day

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Today, February 21, is Ben’s birthday. This is another of the February milestone dates that I dread. It is the fifth birthday without him, and I can’t help but ask myself how many of his birthdays I am going to feel like this. The truth is that I have gotten used to the waves of sadness and loneliness. I didn’t know how I would feel today but I go with the flow of my emotions. I don’t convince myself that I have to be miserable, I don’t punish myself, and I don’t anticipate anything other than that I don’t know how I am going to feel and that I will be okay with whatever mood hits. The sadness and loneliness don’t paralyze me the way they did, but the bursts of tears remain.

I thought that I might run a few errands today, but I can’t seem to get myself off the sofa, preferring to wear Ben’s flannel Mickey Mouse pajamas (my cat Disney and I had matching ones) and immerse myself in Ben’s favorite Disney and Pixar films. I already watched Monsters, Inc. I cried when Boo said good-bye to Sully. I can’t help but relive saying good-bye to Ben. It will always be painful, especially on days like today. There is no distraction from tears  or from the pain. But Ben loved Sully, and when they met, Sully was compassionate and funny.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Sully, Monsters Inc

2012- Sully escorted Ben for his photograph!

Today also happens to be National Caregivers Day, which honors the health care professionals across the country providing long-term and hospice care. It always falls on the third Friday of February. I don’t remember being aware of this day when Ben was ill. I do remain grateful to and in contact with some of the professionals who cared for Ben. Although I was not a professional caregiver, I was a devoted one, and the memories of being Ben’s caregiver are among my most difficult and frustrating, while at the same time they are my most loving and significant. I am fortunate to have a wealth of good memories from our sixteen years together. I do tend to separate them into our pre-ALS and ALS days. Being a caregiver, for Ben and for my dad, brought out who I am at my core, and it also changed me, I hope for the better. I was able to find a stronger voice as an advocate for them, and I suppose now it’s time to use that voice for myself. I have a lot of work to do in that regard. I’m definitely better at caring for others and I prefer it.

I watched the video that I made on Ben’s birthday the first year I was without him, which I have placed here again. I miss Ben and I miss making a fuss on his birthday. When he was homebound, I decorated our apartment after I put him to bed so he would have a fun surprise in the morning. He knew I was decorating but never knew exactly what he would find, and that delighted him. When I look back, I think that making the video was my way of continuing to create a birthday celebration for him. There are photos of his birthdays and other happy occasions, and, of course, some Walt Disney World photos. Some were taken when he had ALS and some in the pre-ALS days. The love is palpable in all of the memories. I guess it will always be jarring but sweet to hear The Beatles’, “Happy Birthday.” Ben woke me up with that song every year on my birthday. Now, I am playing it for him. I do believe that he played it for me when I visited Walt Disney World and listened to the band he loved. When I watch the video now, I remember the grief that I felt as I poured through and selected the images. Still, I do find it comforting to revisit beautiful memories. That doesn’t mean that it doesn’t come with tears, but tears are okay. So are smiles. All of the memories, even through the darkest days of grief, play along with the video but I am reminded that I will be okay and Ben is still with me.

Ben’s birthday always falls during the week that the schools have a mid-winter break. I’m glad that I have the time without having to be “on” in the classroom. I have enjoyed having some time to organize my apartment. This meant going through some of Ben’s things, particularly computer and electronics related items. I threw out things that I had been keeping only because they were his. I brought several old laptops to be recycled. I talked aloud to Ben throughout the process. It’s taken all this time, but once I realized that they brought no particular joy or memories, and that even Ben had mindlessly tossed these things into boxes rather than throw them out, I was more able to part with them. Still, the mere action of having to go through his things without him was stressful. Maybe my timing was not great. As I said, I never know how things will feel so I just go with it.

I did pick up Ben’s favorite meal from our local store and will have that for dinner. I so often think of how Ben wanted to be able to eat the foods he loved, and how I always say that I hope that he is now eating, walking and singing, free of the constraints of ALS. For the first time, the idea struck me to have one of his favorite meals in his honor, with the knowledge in my heart that he can now enjoy that freedom. In my opinion, there is no “right” way to deal with events like this. If I had felt like I did not want to do anything special for Ben’s birthday, and just share a quiet thought of him, that would have been fine, too. I feel no compulsion to defend myself. That, in itself, feels like progress!

As I wrote last year, there is no candle on a cake now, but always wishes that Ben is comfortable and at peace. Also, wishes for a cure for ALS, because wishes do come true.  As Cinderella’s Fairy Godmother says, “even miracles take a little time.”

Wishing well at Walt Disney World
July 2014

 

When Ben proposed to me at Walt Disney World, he asked me to be His Minnie. So, on his birthday, I say
Happy Birthday, My Mickey!
With much love and pixie dust,

Your Minnie

Halloween 2012. Eeyore’s wearing a birthday hat!

 

Happy Birthday Daddy and Cinderella! Thank You For The Life Lessons!

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Today, February 15, would be my dad’s 90th birthday. It’s a strange and melancholic kind of time, with the anniversary of his passing just two days ago and Valentine’s Day yesterday.  I did go to the theater today, which is always comforting to me, but the sadness loomed. Fortunately, my friend understood my need to talk about him and my awkwardness and mixed emotions. But, there are so many good memories on which I try to dwell during these down days. I was a Daddy’s girl and I was his life and his caregiver. My dad is always in my heart and thoughts, and at this time I would like to take the opportunity to put him front and center and share glimpses of his life. My dad never wanted to make a fuss over his birthday. But, I always did. And he deserved it. My dad taught me so much about life, integrity, generosity and loyalty, as well as the importance of a sense of humor and of being able to laugh at yourself. I strive to make him proud because I know he’s watching over me.

I realized as I was preparing this video, that my dad was not in so many pictures because he was always the one taking the photographs. The background music is From The Hall of Montezuma, the USMC hymn. He would love that. He loved dogs, the USMC and his family.

The camouflage coat was one of our funniest memories because he liked telling people that he wore it when he went outside and tried to hide among the greens from his mother-in-law, my grandmother. I wore my camouflage pants in his honor.

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

Who would have thought that my dad and Cinderella and I would have any connection? Well, they do. Cinderella and my dad share a birthday, since the movie Cinderella was released by Walt Disney Productions on this date in 1950, which makes my favorite princess 70 years old today! She has remained dear to my heart since childhood because there is more to Cinderella than what meets the eye. She appears simply sweet and naïve, but she had feistiness and determination, and also a loyalty to her father’s memory to which I can wholly relate. It was very hard for her to lose both of her parents, but she let their lessons and moral compass guide her. That’s something I completely understand.

Cinderella knew the importance of integrity and 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! She knew at her core that, despite her stepmother and stepsisters 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 and I could stand alone and live happily with them in my heart. 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.

Cinderella,Disney,ALS,Grief,Caregiving

Cinderella, 1950
Walt Disney Productions

Maybe you don’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 okay.

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 Cinderella called, So This is Love.  Though the song is about romantic love, the title is significant. 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 who wished for the fairytale ending. Sometimes I think that it’s a matter of perspective. I do believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me and times like these past few days are quite sad and lonely. 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 Cinderella’s Fairy Godmother said, “Even miracles take a little time.”

My dad called me his Private Benjamin, but I was also his Cinderella, and I will always keep his spirit alive and let him guide me.

Happy Birthday, Daddy! I love and miss you!

Sleeping Beauty and Lessons in Caregiving From The Fairies

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Today marks the anniversary of the 1959 release of Walt Disney Productions’ Sleeping Beauty.

With the upcoming anniversary in mind, I watched the film last weekend. I have to admit that my favorite characters are the three fairies. In fact, after my cat Disney passed away and a new, small young cat and I adopted each other, I thought about naming her Merryweather, but it just didn’t flow off the tongue. Instead, I named her for another feisty fairy- Tinker Bell!

There is a scene when the fairies brainstorm ways to counteract the curse that Maleficent has placed on Princess Aurora. While Merryweather has the idea of turning Maleficent into “a fat old pop-toad,” Flora reminds her that their magic can only do good to bring joy and happiness.

Fauna believes that Maleficent probably isn’t very happy because she doesn’t know anything about love, or kindness or the joy of helping others. In the story, the three fairies decide to give up their magic and their identities and move to a secluded area in the forest to take care of Aurora until her eighteenth birthday, to keep her safe from Maleficent’s spell. Their entire lives turn upside down. They put Aurora’s needs before their own. That’s a scenario that is familiar to many caregivers. I watched this movie often while Ben’s ALS was progressing but I don’t think I saw the connection at that time. I think that I was too entrenched in the difficulties and what I thought I was doing wrong to see that the love and care in caregiving were always coming through and were nurturing Ben and me.

In my own story, when Ben was diagnosed with ALS, although he lived in denial about its progression, we went crisis to crisis and began shifting things in the apartment as necessary. I had to take many days off from work to help him or just to provide emotional support if he was having an anxiety attack. There were a couple of times that I thought my job was on the line until my principal helped me to arrange for family medical leave. I was tired and stressed, but that was not a priority. There was sometimes tension between Ben and me because I was having a difficult time juggling full-time work with full-time caregiving and Ben would not admit that it was difficult and that he needed more care than I alone could provide.

When the fairies were scrambling to make Aurora a beautiful birthday cake and dress without the use of magic, I thought of the many times that I would experiment with foods and the Vitamix, or help Ben to devise some kind of contraption to help with his lack of dexterity. The fairies wanted to surprise Aurora with a party, finding ways to get her out of the house so they could decorate. I thought of the many nights that I waited until after I had put Ben in bed to decorate the apartment for holidays or Ben’s birthday, so he would awaken to a surprise. I lacked the wand, but like any caregiver, I had to create a kind of magic to make life easier and entertaining. Only in retrospect can I see how it may have exhausted me, but it also fueled me.

We all have to deal with our Maleficents. These were the unreliable family members or even the completely unhelpful but judgmental health care professionals. Like Merryweather, I had some spirited fantasies, but they were more along the lines of banishing them from our kingdom! Alas, I, too, had to focus on the caregiving and vent to my friends the way Merryweather vented or fantasized aloud to Flora and Fauna.

Taken at Walt Disney World in 2002, the pre-ALS days.

As I look back at my caregiving days, I realize that although it was the most difficult work I ever did, it was the most important and loving work, too. The fairies were entrusted with Aurora’s life and they did whatever they had to do to protect and care for her. I was not as selfless as the fairies-  there were times that it made me angry and resentful to have to juggle so much, especially when Ben was not acknowledging that his ALS was progressing and I was losing my ability to “just keep swimming.” At the same time, I also would not have had it any other way. Ben knew that about me and I knew that about myself. Caregiving let me see that I found the most satisfaction and joy in showing love and kindness while helping Ben and my dad.  It wasn’t a matter of feeling happy all the time. In fact, I was not happy to Ben – and my dad- decline and to see our lives and future disappear. However, I felt purposeful and proud that I was the person they knew they could count on to always be there for them.  I realize now that I had the most true sense of myself when I was caring for and bringing joy to them. Although those days are behind me, I often reflect on them, and looking back through the lens of Flora, Fauna and Merryweather remind me of the valuable life and love lessons of caregiving.

Another favorite part of Sleeping Beauty is when Aurora tells her forest friends about the prince she sees in her dreams. She says, “If you dream a thing more than once, it’s sure to come true.” So, I will keep wishing and dreaming and feeling the pixie dust for cures for ALS and all awful illnesses, and for love and all good things. I hope you do, too, and I hope your wishes and dreams come true.

Thank you, Flora, Fauna and Merryweather, and Happy Anniversary, Sleeping Beauty.

Walt Disney World, July 2014

“Scent-sitive” in Grief

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I used to love to cook for Ben and my dad. Since I lost them, I haven’t really had the desire to cook. It’s not fun to cook for myself. Also, I am not a great cook, but I am a very good recipe follower, and recipes tend to yield a lot of leftovers when I’m just cooking for myself. The abundant leftovers only remind me that I am alone.

I wrote about my first foray into cooking and how it reminded me of this scene from the original version of The Parent Trap
(Walt Disney Productions 1961.)  You can click here for the link to that post.  Other than making an omelette for myself and simple microwave or stovetop things, I haven’t cooked. Today, I decided to make chili. I found a recipe, got all of the ingredients, and got to work. I was keenly aware that last time was very emotional, and it wasn’t long before I was heading toward the same place. As soon as the apartment filled with the smell of the onions and vegetables, I remembered how Ben loved when I would start cooking and he would smell onions and garlic. I decided to talk to him while I was cooking, which still had me in tears but also smiling. I did experiment a bit with the spices and it worked out well. I am proud to say that it was delicious. Ben and my dad would have been proud, which is important to me.

I do have a lot of leftovers, which does make me feel lonely. And, I had to do the dishes. Ben and I had always split the responsibilities- if I cooked, he did the dishes. It wasn’t as difficult as the first time I cooked, which is good. It was a food that I never made for Ben or my dad, and maybe that was helpful. I did expect and prepare myself for sadness, but I didn’t force sadness or keep myself from delving into the activity, open to enjoying it. While it wasn’t fun like it used to be, I coped by talking aloud to Ben. It’s a way that I co-exist with grief- looking back with sadness but also good memories, and continuing to take the baby steps forward with the knowledge that Ben and my dad are still with me.

 

Happy National Hugging Day! Who Needs A Hug?

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Who wouldn’t be happy with a big hug from Mickey!?!?! July 2014

Today is National Hugging Day. Why not? There’s a National Day for everything!

Ben gave the best hugs. As his ALS progressed and his arms became weaker, he could no longer hug me. I remember, in particular, that he felt terrible that he could not hug me when I got the phone call that my dad had died. I remember being afraid to hug him tight, too, because everything felt so heavy to him. It’s strange that a day celebrating something joyful like hugging should trigger sadness, but that’s the thing about grief and loss. I miss Ben’s hugs.

Fortunately, there are so many good memories, too.This picture is one of my very favorites. The story is interesting and, I think, worth sharing.Ben and I were always so happy to meet Mickey and Minnie. As his ALS progressed, Ben still tried to walk to see Mickey. I knew that it was getting bad when he stopped trying to walk and just rode his electric wheelchair up to Mickey. I was always the one who got super excited to see my friends. In this photo, we had just entered the room and were greeted by Mickey. He actually spoke to us. I was just shocked and he reacted with surprise at my shock, so I started laughing.

What you cannot tell by looking at the pure happiness on my face is that this picture was taken on our last visit to Walt Disney World in July 2014. It was a truly wonderful visit, but stressful because Ben needed much more assistance (we brought a paid caregiver with us) and because we knew in our hearts that it would likely be our last visit. You can read more about that visit by clicking here. The Magic Kingdom is very accessible, but making sure that Ben had what he needed, that there were accessible bathrooms nearby and that Ben would be able to fully enjoy himself did come with stress. Getting to meet Mickey without any issue and with Ben feeling truly delighted gave me a feeling of success and relief. What you also don’t see in this picture is that I whispered in Mickey’s ear that we really needed some magic. Mickey just had to look at Ben in his electric wheelchair- unable to speak very clearly, very thin but with super swollen feet- to know there was a medical issue. Mickey held me tight and he patted my hand. He and Minnie gave Ben a lot of attention. It was emotional and it was beautiful.  I needed that hug. I needed to believe that Mickey could help.

I believe the Disney magic did help. No, it didn’t cure Ben’s ALS, but, being at Walt Disney World brought Ben such happiness, it allowed him to feel free, and, as Ben described, he forgot his problems, which is saying quite a lot. We had four years after his diagnosis during which we were fortunate to enjoy several visits to Walt Disney World. I do call that pixie dust. So was the hug.

I feel it’s an important story to tell because we never know what’s going on in someone’s head or their story. I love that this photo captured a very vibrant smile before the tears that came with the emotion. That photo reminds me that a hug from Mickey Mouse came with all of the dreams, wishes and comfort that is Disney magic. That hug was compassion. We all need to show and to feel that. Mickey didn’t have to say anything, didn’t have to offer any advice or judgment- his hug was the compassion that we needed.

This is another favorite picture of mine- Ben loved Sully, and when Sully saw Ben in the electric wheelchair, he ran over to him and offered to help him up. Sully gave Ben the biggest hug, which made Ben so happy. You can just see his inner child shining in this photo. It absolutely delights me to have these memories.

I send everyone a big hug of compassion on this National Hugging Day!

Two Goofy guys! July 2014

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