Is A Dream A Wish Your Heart Makes?

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At the Walt Disney World Wishing Well at Cinderella’s Castle- Making a wish!

I’m a dreamer. Disney always lets us believe that dreams come true. Cinderella, my first favorite princess, said “they can’t stop me from dreaming,” and she sang “a dream is a wish your heart makes.” In Pinocchio, we are taught that “when you wish upon a star your dreams come true.”

So, when I woke up on a recent morning, upset by an actual dream I’d had, I began to wonder about dreams. Are they a reflection of what I wish for? Are they the resurfacing of bad memories I only convinced myself that I had happily put in the recesses of my brain? Maybe both?

Truth be told, I rarely remember my dreams. I do know that at times, when I’m having a bad dream, in the dream I tell myself to wake up. When I awoke from this particular dream, I remembered a lot of details. In this dream I revisited a lot of the issues that arose during my 16-year relationship with Ben. I again experienced the anger and aggravation that I did during our more challenging times. During the dream, I saw Ben curled up and crying with apologies and regrets. I calmly talked through the issues with him and comforted him. I talked to him honestly and openly and he listened and really heard me. In this dream, I got to a point where I could express that I accepted our entire relationship, good and bad, and I told Ben that I loved him, which was something he always knew anyway. I left the dream with him reassuring me of how much he loves me.

It bothered me that Ben was so upset. It also bothered me to revisit the difficult issues. Was my heart wishing for this dream? I couldn’t imagine how. It’s been gnawing at me and it has had me in tears.

I suppose that every relationship has its imperfections. However, when Ben was in the hospital and he knew his time in this world was limited, we had a special opportunity to resolve a great deal of the rough feelings. We even said our vows on the morning that he departed. I am not as naïve as my love of Disney would imply to some. I believe that I have a realistic memory and perspective of our relationship and, although I choose to focus on the wonderful aspects of my time with Ben, I also acknowledge the aspects that were difficult. After all, if I can’t do that, I am not doing justice to our time together and the love that lasted in good and bad times. But, why was I revisiting the bad times, seeing Ben so distraught and full of regret? Why was I talking through everything with him without just placating him? I felt like this dream must have been sending a message.

In my dream, Ben’s children ignored and dismissed me as they did throughout our relationship and his battle with ALS. For many months, I have been troubled by the only one of his daughters with whom I had a brief good connection at the end and for the first two years after Ben died, because, without any explanation or any kind of falling out, she began to ignore me and not respond to my texts. I have been feeling hurt and confused, because we had spent milestone events together, such as his birthday, the anniversary of his passing. I tried to be supportive and arrange activities that would honor Ben and that we could enjoy as we remembered him. Actually, for most of the time that Ben was ill, we did not have a strong relationship, so I suppose things just returned to their original status. In my dream, I matter-of-factly said good-bye and confidently walked away from her.

Dreams are such a matter of interpretation. In this case, I have come up with an interpretation that works for me. I recently marked three and a half years since Ben left this world. Those kinds of milestones always bring back a lot of memories- the good times and the illness, and, of course, his last day. While I get caught up in those memories, I have also stepped back into the land of the living. I am even trying to find love again. Interacting with people online, and writing dating profiles allows the opportunity to look at the beautiful and not so beautiful aspects of my relationship with Ben. I feel like I know what I am looking for and that I am ready to be in a relationship. Maybe this dream was showing me that indeed, I am able to look back honestly at my relationship with Ben, and to know that those issues are resolved. I can enter into another loving relationship and work through any issues that arise.

I do believe that Ben is with me. I have gone to a medium who has confirmed that. I realize that many people do not believe this as I do. Maybe Ben entered my dream so that we could talk through things and he would know that I still love him and am connected to him but can also move to a new relationship with an open and loving heart. Maybe we worked through things so he could peacefully let me step forward.  Maybe my heart wished for the opportunity to talk with him about our relationship to reinforce in my heart and mind that we will always have a relationship, but it is now different.

As for the daughter who has cut off communication with me, in my dream, Ben watched as I confidently walked away from her. It made me feel like I have his support. This dream allowed me to let go of the anger, confusion and frustration that I have been feeling, knowing in my heart that I did everything that Ben would have wanted me to do, serving as the connection that she herself said she needed and wanted because her immediate family was not expressing much in the way of grieving Ben’s passing. This dream has empowered me to stop worrying and wondering and to sever the notion that I ever actually had any relationship with his immediate family. I gave and they took. For the most part, Ben had the same relationship with them.

Maybe it was just a dream conjured by the many memories swirling in my conscious and subconscious around the anniversary of his passing. On the other hand, although it upset me, maybe this dream was the wish that my heart has been making to talk to Ben, let go of the difficult times, feel heard and listened to, feel his love and permission to find love again and know that I am able and willing to once again enter into a healthy and happy relationship. Cinderella did say, “No matter how your heart is grieving, if you keep on believing, the dream that you wish will come true.” No wonder she remains my favorite princess.

Thinking of Ben, My Mickey, On His Birthday

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Today, February 21, is Ben’s birthday. I’ve been suffering from vertigo and horrible back pain that I think is sciatica, so, physically, I am already feeling pretty lousy. This is another of the February milestone dates that I dread. It is the fourth 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 miss Ben and I think that’s okay. 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. I also looked at the video that I made on his birthday the first year I was without him, which I have placed here again. 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 was always there, so I embrace 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 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.

This year, I’m fairly homebound given the way I’m feeling. That is certainly reminiscent of the way we celebrated Ben’s birthdays. This year, however, I have a new little baby. Having lost my sweet Disney, I brought home little Tinkerbell on Monday. The organization that rescued her listed her birthday as January 29, because that is the date that she was found. However, I gave her the birthday of February 18, which is the day I brought her home. It is my one happy February date amidst of several sad milestones.

Tinkerbell is quite small. At two years old she weighs less than 8 pounds, so she’s almost fairy sized! Disney, when she was healthy, weighed about 16 pounds and so did Tiffany. Tinkerbell is an affectionate, sweet little girl who follows me everywhere and within one night was already sleeping against my feet. She has a tiny little meow, too, that almost sounds like Tinker Bell’s jingle-talk!

Although it’s barely two weeks since Disney went to be with Ben, I realize that I am at my best when I am taking care of someone, human or otherwise. Caregiving taught me that. In the moments, it was not always a lesson I wanted to learn. In fact, at times I resented it. Of course, I needed help so I was sometimes sinking in the tasks and emotions. But, as I have said before, caregiving was the most loving, meaningful and important work I have ever done. I continued it with Disney, as she got diagnosed with diabetes just after Ben left this world, and then continued to have more and more health challenges.

I hope that Tinkerbell, or “Little Bell,” as I’ve been calling her, has a long and healthy life. She’s a wonderful joy in my life right now, and today I will talk to her about Ben. He would be very happy that I called her Tinkerbell (I spelled it a little differently). We loved Tink and the fairy films. We often watched them before we went to sleep. It always made me chuckle that he loved Pixie Hollow Games and would often watch it even when I was not home. Then, he would remind me that he was macho before he met me.

One of my favorite Tinker Bell related memories was from Walt Disney World. We met Tink and her friend Terrence in Pixie Hollow, where, of course, we were shrunken to pixie size. Terrence was so extravagantly in character, having particular fun because we were adults (well, technically- Ben probably would not have vouched for my maturity level!)  and I couldn’t stop laughing. The photographer caught this photo of Ben laughing at me. It remains one of my very favorite photos of him, especially because it was when his ALS was progressing and we truly treasured the laughter. Today, I want to remember that laughter.

Ben laughing at me in Walt Disney World when we met Tinker Bell and Terrence.

I will have my usual Disney movie marathon of Ben’s favorites- Monsters, Inc., Mulan, Toy Story (1,2,3) and The Incredibles. I will also show Tinkerbell the Tinker Bell films so she can see the feisty fairy for whom she is named.

This year, my physical feelings happen to match my emotional tension, but I want anyone reading this to know that, at least 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 he is comfortable, and running, singing and eating to his heart’s delight. And, wishes for a cure for ALS, because wishes do come true.  As Cinderella’s Fairy Godmother says, “even miracles take a little time.”

An important visit to the Wishing Well at Cinderella’s Castle that became a ritual- wishing for a cure for ALS.

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 Anniversary, Pinocchio- Lessons On Caregiving and Heartstrings

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Pinocchio and Jiminy Cricket
Walt Disney World

Pinocchio was released on February 7, 1940. I do love this story of the mischievous little puppet who just wants to be a real boy. For me, so much of the film is about the song lyrics. They took on a special meaning when I was a caregiver and they continue to touch my heart.

When times are hard during caregiving, whether it is in the role of caregiving itself or in watching your caree struggle, it is easy to wish, as Pinocchio did:

I’ve got no strings
So I have fun
I’m not tied up to anyone
They’ve got strings
But you can see
There are no strings on me

There were times when I just wanted to stroll home instead of rushing to tend to Ben, or go to dinner with a friend, or watch tv without an interruption. For me, much stress came when Ben was feeling frustrated and took it out on me by being critical and difficult. Ben did not want to accept that he needed more care than I alone could provide. He did not want to admit that he was afraid to stay alone. I did not know how to approach him about the fact that he needed more care. I didn’t want to disappoint him and yet I was upset because his expectations were unrealistic. I was upset with myself for rarely standing up for myself. Frustration was perfectly understandable on both of our parts.

The truth was that I was attached not by puppet strings, but by my heartstrings. When I did have some time to myself, Ben was pretty much the only thing on my mind. If I went out, I constantly texted him to see if everything was ok, even when someone was with him. I knew he was most comfortable with me and I was most comfortable when I was there.

When he did finally agree to get a home health aide, we had our routines for when they would update me. I had my phone with me at all times waiting for his text telling me that he was awake and seated at his computer. Even when he was in the hospital, and I knew he had constant medical attention, I felt the need to be there. After all, he could not even move his hand to use a call button. The strings that attached us were unbreakable.

I had a lot of support from friends, his medical care team and some family. Of course, they were concerned about Ben, but they were also concerned about me and that I was running myself ragged. I know the philosophy that if you don’t take care of yourself, you can’t take care of anyone else. But, it was impossible for me to prioritize myself knowing that Ben had ALS and it was progressing, and knowing that he could not help needing assistance. In the back of my mind, he was dying, so while he was here I had to do anything to help, advocate for and entertain him.

There are also certain realities that affected caregiving. Insurance does not cover home health aides. Since ALS is a disease that does not have a predictable progression, even when he admitted to needing help, he was afraid that he would completely deplete his savings. These are such stressful situations to deal with in the midst of dealing with the physical and emotional impact of the disease. It is tragic that better care and attention is not given to circumstances such as these and to supporting caregivers and carees. I could devote many blogs to that subject!

So many people told me that I simply had to tell Ben that I could not care for him anymore, or that he could not stay in the apartment anymore, or that he had to begin to pay for care. People are very good at giving advice. And, in my experience, they really do mean well. Interestingly, they don’t always follow the advice they give. Some people who told me to take a hard line with Ben have then found themselves in caregiving situations where they were also towing the line without support and with unrealistic expectations from their caree and others.

In grief, people have also told me what I “should do.” Again, they mean well. Some people think that blogging and pursuing opportunities to support other caregivers has kept me in the past. I disagree. I feel it is important, and even responsible, and it is also rewarding. It allows me to take my experiences and use them positively as I move forward. But, no one should really have to defend themselves. I say this here because, as caregivers, and then in grief, we all have to step back into life and redefine ourselves, and maybe my own experience will give other caregivers food for thought.  The bottom line is that we all know in our hearts what we have to do because our consciences are our guides. We can request and get advice, but only we know ourselves and our circumstances. And, until you walk in someone else’s shoes, you cannot clearly judge them. This applies to caregivers and to carees.

Jiminy Cricket was so right when he said, “Always let your conscience be your guide.” I had to do what I felt was right for Ben. I hope that I’ve come out of the experience with a stronger ability to communicate my feelings, but I still would not have changed my actions. Although I always worried that I was not a good enough caregiver, particularly when Ben was in bad spirits and critical of me, I let my conscience be my guide. I look back and am grateful that, in the end, Ben was able to stay at home with me until he went into the hospital, and I was at his side until the very moment when he left this world.

As I wrote in a previous post, I still believe in making wishes, and I love the song “When You Wish Upon a Star.” I wished that Ben would find peace and I do believe that he is now in a place where he can walk and talk and eat and play his musical instruments. I wish for a cure for ALS. Whenever I see a fountain, I toss a coin to wish for a cure for ALS. I will continue to wish until it comes true because, as the song goes:

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true

Happy Anniversary, Peter Pan- About Faith, Trust, Pixie Dust and Thinking Happy Thoughts

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Magic Kingdom, 2006- pre-ALS days

Peter Pan was originally released on February 5, 1953.  Ben and I loved the film. What adult has not chuckled at how they spent their childhoods waiting to grow up just to wish that they had stayed children?  I am a firm believer in embracing my inner child. Ben also loved to tap his inner child. Walt Disney World is a place where it is a requirement! Maybe that’s why Ben and I loved it so much!

February is a difficult month for me. My dad’s birthday and date of his death, Ben’s birthday, the anniversary of my grandma’s death. A lot of milestones within a short period of time. Think happy thoughts. It’s not always easy when I’m feeling down, but it’s also important and helpful for me to remember the good times, even if it makes me cry. Thank you, Peter Pan, for the good advice.

 Think happy thoughts took on a whole new meaning when Ben was struggling with ALS and I was struggling with caregiving. ALS is known to be a very isolating disease. I’m sure that even when he was not literally alone, Ben felt isolated. I felt so helpless when Ben hurt because sometimes, it was so hard to speak to explain himself and be understood, that he just shook his head and stopped trying. Also, with every day came the dread of what ability he would lose. Sometimes he simply had a bad day and other times there was an obvious change in his health. There were days when I was able to care for him without any problems, but then there were the days when it was exhausting and overwhelming, and if I was having back issues, it was physically painful. We cannot walk in the shoes of our loved ones, we can only love them. Love is a lot. Thinking happy thoughts is a lot, too, because, along with love, it lets us remember who we were and what was important before illness changed things. When facing a terminal disease, the unhappy thoughts come easily. The happy thoughts seem surreal, and yet, they let us escape and remember. For us, happy thoughts almost always included memories of our visits to Walt Disney World. Ben spent so much time every day looking at the videos and photos from our visits to Walt Disney World. We loved to listen to the music from the parks, too. He went on their vacation planning web site to plan fantasy trips. I liked to see him planning because I felt it kept his head in living and focusing on what he could do. I truly believe that helped him manage the disease pretty well for about four years.

On those very difficult days when eating was a challenge, or there was a fall, or some other accident, or even just a lack of energy to transfer or be transferred, we had to remember, “All you need is faith, trust and a little pixie dust!”So much happens with illnesses and caregiving that is unpredictable and beyond our control. For me to maintain a certain state of calm that allowed me to be a problem solver, I needed to have faith and trust that things would ultimately be okay. The pixie dust was the whimsy that always let my inner child thrive in the midst of very grown-up, complex circumstances. Sometimes it was just a loving moment between Ben and me that would make us laugh. Sometimes it came from friends, sometimes it came from caring strangers, and sometimes it came from both of us taking a moment to remember the good and loving times. And, with faith, trust and pixie dust, we even made it back to Walt Disney World four times during his illness.

I named my blog Pixie Dust For Caregivers because quotes like this, as well as many Disney characters, films, lyrics and attractions from the Parks were the pixie dust that gave me perspective, inspiration, and comfort during the caregiving years and as I have been working through grief and rebuilding my life. They helped Ben, too. At times, they simply gave us much needed entertainment.

We did love the Peter Pan attraction at Walt Disney World. We loved to soar over Neverland on the pirate ship. Unfortunately, it is not accessible and has to be boarded while it is in motion. Ben had trouble with balance and walking early on, so it was the first ride we had to give up. Still, we never lost our love for Peter Pan and Tinker Bell.

A line in the song “You Can Fly,” is, “Think of all the joy you’ll find when you leave the world behind and bid your cares goodbye.”  I wanted Ben to have peace and to feel comfort he had not felt in the nearly six years he bravely battled ALS. Tragically, ALS was not going away. He was not going to get better. He was miserable after he got his tracheostomy and feeding tube, and he made the decision to be removed from the ventilator. He was ready to leave the world. I am still glad that he was able to make that decision for himself. My own emotions were all over the place- devastation that I was going to lose him in just a few days, along with relief that he would indeed, leave his cares behind and be free from the physical and emotional pain and constraints of the disease that rendered him unable to breathe on his own, speak, eat or walk.

Peter Pan said, “To die would be an awfully big adventure.” I don’t know that Ben would have called ALS an adventure, but it was a journey. A very difficult journey that he navigated with much bravery. Now, I put faith, trust and pixie dust in the belief that Ben has “bid his cares goodbye” and he is in a peaceful place where he can walk and run and eat and talk and sing and use his hands to use the computer and play his instruments. That gives me peace.

I guess it’s my turn to think happy thoughts and have faith and trust that pixie dust will sprinkle good things on my future. It has certainly brought me a lot of love and good memories.

“All you need is faith, trust and pixie dust!”