Caregiver

Happy Anniversary, Pinocchio- Lessons On Caregiving and Heartstrings

Caregiving, Walt Disney World, Disney, Pinocchio

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

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!”

What Olaf Knows About Caregiving and Melting

Olaf had to come home with me!

The weather in NYC has been crazy. We were in a deep freeze one day, and then near 60 degrees two days later. Of course, Frozen came to mind. I’ve written before about what Olaf knew about love and melting (click here to read that post), but the drastic weather and reminded me of Olaf and his lessons on love and caring. The sweet and goofy snowman continues to sum up my caregiving experience at its core.

My apartment is generally as warm as a sauna. In fact, I have been sleeping with the air conditioner! During that one ridiculously cold day, even my apartment was cold. I could not help but reflect on days spent trying to help Ben to keep warm.

Before ALS, Ben and I both liked the cold. Other than Walt Disney World, Vermont was our favorite getaway, especially in winter. Once ALS progressed, the cold posed challenges and problems for Ben. It was harder for him to move when he was cold. I think it may also have affected his respiratory comfort, though his significant decline in that area began in the warmer weather.

Although it is usually very warm, the apartment is drafty and Ben could not tolerate the cold. I bought big plastic insulation tarps and put them over our windows. They did help but it looked terrible and they came loose frequently, sometimes requiring middle of the night fixes.  We did what we had to do. We became accustomed to living crisis to crisis in an apartment that was a disaster.

"Some people are worth melting for," Olaf, Frozen,ALS

“Some people are worth melting for.”- Olaf

Most blankets felt heavy on Ben as his strength diminished, and piling on sweaters made movement even more difficult than it had already become due to the ALS. We found a couple of quilts that were the size of a throw, which made it easier for him to manage. We could not sleep under the same blanket because any tugging or shifting made him uncomfortable. A blanket may seem like a very minor accommodation, but it symbolized relationship changes that took an emotional toll. Suddenly, the life we enjoyed began to  change and foretell a sad future, and the way we related to each other changed in very profound ways as we shifted from being husband and wife to patient and caregiver. As Olaf said, “Some people are worth melting for.”

I am resourceful and a born shopper, so I was always delighted to find solutions, even if they were temporary. Ben was very skeptical of the little space heater that I brought home one day. I plugged it in as he said it wouldn’t help. It did! He loved that space heater!

I made a blanket of some of our favorite photos from Walt Disney World, and a microfiber towel as well. For the days that Ben did not get to his computer, or felt chilly, he was always surrounded by the photos that he loved so much.

Photo collage blanket.

Dressing for cold weather, even within our apartment, also required creativity. Ben loved insulated puffer vests because they kept him warm without bulk and heaviness, and also  gave him some freedom of motion in his arms. He liked sweatshirts that were zippered hoodies because they were easier to put on and to remove, even though he needed assistance to do so. He did find adaptive zipper pulls that he liked. These gave him some independence and that was important for his frame of mind.

Fleece sweaters were often a great option because they were lightweight. Waffle/thermal shirts were cozy for him and allowed for easy layering. He was amused by the camouflage shirts I found for him because they reminded us of how much my dad, the Marine, loved his camouflage! Even as the temperatures dropped, Ben still wore his favorite regular tshirts underneath his warmer clothes. He loved his tshirts. They keep me warm now in the tshirt quilt that I made from them.

Caregiving,Grief,ALS,Memories

A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

It was definitely a challenge for both of us to be comfortable in the same space. Once again, Olaf got it right when he said, “Love is putting someone else’s needs before yours.” I was warm or Ben was cold, but Ben needed to be warm. Physically, the apartment was a mess, with supplies accumulating, space shrinking, and furniture moving according to his needs. At one point, my dresser had to be moved to accommodate his chair, and it blocked the closet. For several months, I either wore what was in the drawers or whatever my hand could reach in the closet. Now, I look back and laugh at the chaos that was our life. Then, we lived crisis to crisis, and despite our frequent ability to see the hilarity in the situations, it sometimes left us feeling helpless and hopeless.

"Love is putting someone else's needs before yours," Olaf,Frozen,ALS

“Love is putting someone else’s needs before yours.”- Olaf, Frozen

Now, I am trying to keep my cat, Disney, warm. With her arthritis and cancer, she is having some trouble walking around. It breaks my heart but I am trying to keep her as comfortable as possible so that she has a good quality of life. I use Ben’s hot water bottle and our heating pad and try to convince her to rest on them. I did put her in her little pajamas, which she actually seemed to like.

Going through these motions does leave me feeling a little melancholy. It feels like a long time ago that these were my caregiving responsibilities, and it also feels like just yesterday. Although I don’t mind being chilly- in fact, I prefer it, I always feel a little guilty admitting these things. I’d tolerate any kind of weather if Ben was here and well. I miss Ben. I cannot deny the inconveniences and the emotional pain we both experienced. Ultimately, Ben’s needs unquestionably came first, and a little melting was a small price to pay. My heart is warmed to know that now he is free of the constraints of ALS.

Walt Disney World,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)

 

When You Need Some Bibbidi Bobbidi Boo

Brave Disney during her hospital stay in 2016

Sometimes you just need some Bibbidi Bobbidi Boo. This is one of those times for Disney and me.

Cinderella (1950)
Walt Disney Productions

In my last post I was worried about Disney as I faced 2019. My worries have escalated. I took her to the veterinarian during the week. The vet believes that she has cancer that is affecting her spine and that’s why her legs are weakening. There is nothing that can be done for her because medications would damage her already failing kidneys and cause her diabetes to go out of control. Her veterinarian, Dr. Napolitano, is wonderful, and she described Disney as an impressive girl- at 17 years old and with so much wrong with that little body, she is a fighter. But, she’s still my baby. Disney was given an injection, and I was given a prescription, to help with the inflammation that might ease her walking. Now, it’s a matter of time.

Visiting hours for Disney during one of her hospital stays.

I see a very slight improvement in her walking, and she is persistent. She climbs onto the sofa and the bed and likes to be near me. Her appetite is good and she was very excited to eat turkey, probably her very favorite treat. She’s not quite herself, but she is not as withdrawn as she had been, so maybe the medication is helping. Dr. Napolitano says these are good signs. I am spending a lot of time giving Disney attention and love, but the sadness looms.

Watching Disney, doting on her and worrying about her certainly has me pretty stressed. I find that I am not only dealing with the impending loss of my sweet Disney, but I am also reliving the terrible parts of caregiving and anticipatory grief that I experienced during Ben’s battle with ALS. On Friday, I spent the day at work preoccupied with how Disney was doing at home- if she had fallen, if she was in pain, if she was scared to be by herself if she didn’t feel well. That brought back memories of the years of being at school with my phone in hand, hoping that my phone would not ring with an alert that my dad or Ben were having a crisis. Yesterday, I did go to the theater with a friend, but I was distracted by thoughts of how Disney was doing at home. I felt the same guilt about going out that I felt when I arranged to go out while Ben was ill. Once again, there is no relaxation at home. The pain of those memories, which has dulled but has not been forgotten, has once again become vivid.

Also, I feel like I have once again stepped back to being Abby who is caring for an ill loved one. When I started working at my new high school, no one, except for a few teachers who knew me prior to this position, knew about Ben and my dad. I could shed my reputation as the caregiver or the griever. But, here I am again. I do appreciate the concern shown by my friends, I just don’t want to be “that” Abby again.

Timon from the The Lion King was right when he told Simba, “Sometimes bad things happen and there’s nothing you can do about it.”  I know the realities. Disney is seventeen years old. She’s been ill for quite some time. She was diagnosed with diabetes about a week after Ben died. Since then, it’s been one medical problem after the next. Despite this, she’s had a really good life and she’s brought me so much happiness and comfort. She is simply a very sweet cat – beautiful inside and out- without any of the negative qualities attributed to cats. She’s kind of like a needy toddler who always needs her Mommy. She was always there for cuddling when things were awful with my dad and Ben and when I looked in her big green eyes I knew she understood what was in my heart. When Ben was in the hospital for those six weeks, I was so grateful to return home to her. Importantly, she is, actually, my one remaining connection to Ben. Disney was here as Ben’s ALS progressed. She watched intently as his walking became unsteady. She went to him when he could no longer go to her. She was even in the hospital to say good bye and watch over him. And, here I am, watching over Disney in the same way, trying unsuccessfully to simultaneously ignore and accept what I know is happening.

Disney watched Ben throughout their visit in the hospice, even when he slept, as pictured here.

I have pushed through the bad days as I navigated the Inside Out of emotions in caregiving and grief (click here for prior post) and I am constantly reminded and reassured that I can step back into life. Writing these posts helps me to sort through issues as they arise. Maybe that’s why I am so shaken by the way this event has thrown me so far back into the depths of grief.

Ben made the choice of how he would live and die with ALS. I will have to make the choice for Disney. I want to be sure that she is comfortable and that I am not being selfish and keeping her here when I should let her go. Maybe I am too obsessively following her, lifting her so she does not have to climb, keeping a close eye on her and listening to every sound, talking to and cuddling her. I wish I had a fairy godmother who could bring us some Bibbidi Bobbidi Boo, but maybe Disney and I are each other’s fairy godmothers, and even though we don’t have actual magic, we are always there for each other with all the love in the world.

Disney and I in our recent holiday photo. She was very patient about my enthusiasm for the Santa hat.

Snow White and the Seven Dwarfs – Kindred Spirits in Caregiving, Grief and Beyond

Original ad for the movie premiere.

On this day, December 21, 1937, Walt Disney’s first full-length feature, Snow White and the Seven Dwarfs premiered at the Carthay Circle Theatre in Los Angeles. I wish I could say that I navigated caregiving and grief like Snow White, the graceful princess who happily sang her way through taking care of the seven dwarfs to a happy ending. I do believe that at times I was that person to Ben and my dad. I was very much their cheerleader and the person who tried to keep them entertained. I was also the nurturing person who managed the details of their care, the way that Snow White kept her household together, except that I seriously lack her stellar housekeeping skills! Alas, I have always related more to the dwarfs!

One of my first blog posts addressed how, as a caregiver, I often felt like all seven of the dwarfs within a single day. In the earlier stages of grief, I also had drastic ups and downs and could feel like any and all of the dwarfs within moments. Now, more than three years after losing Ben to ALS and almost five years after losing my dad, I still feel a kinship with those seven cuties. Here’s how.

Sleepy

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Walt Disney World Halloween Electrical Parade

During my caregiving days, as Ben’s ALS progressed, he often required assistance throughout the night. I am a NYC public school teacher, and there were days that I could barely keep my eyes open at work, and a classroom is a place where you need to be on your toes. My dad also called many times in the middle of the night if he didn’t feel well, and I would travel about 45 minutes either to his home or to meet him at the Emergency Room late at night or early in the morning.

In the early phases of grief, there were many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss.

Now, I continue to have sleepless nights, though less consistently. I worry about being alone for the rest of my life, feel anxiety about dating, and sometimes I simply get caught up in memories and my mind gets the best of me. It’s also exhausting to deal with the ups and downs of emotions while adjusting to a new lifestyle, trying not to revert to staying by myself and becoming too comfortable alone.

Dopey

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Not sure who the real Dopey is!

When juggling Ben’s needs, I did not necessarily know what to do or how to help him, and, indeed, I did feel Dopey. The medical jargon was also confusing to me at times. Simple things just seemed out of reach for me because I became so overwhelmed or was just so tired. I broke things, dropped things, locked myself out of the apartment, and a bevy of other Dopey things.

For the first couple of years after I lost Ben to ALS, I found it very difficult to be caught between the past and the present. Sometimes I found myself buying something because Ben would have wanted it. When I got home, I was only reminded that he was no longer here, and then I felt Dopey, and more sad.

There are still times when, in the middle of nowhere, something will trigger great sadness and I will break into tears. People are generally understanding, but I still feel kind of Dopey.

Trying to step back into a social life, reaching out to old friends and new people has me feeling awkward and yes, a little Dopey. I feel most Dopey since I have delved into online dating. I feel like I never do the right thing, take things personally from people who don’t even really know me, and like there are codes and strategies that I am too Dopey to understand!

Bashful

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

I love Bashful!

When I was a caregiver, asking for help and not even knowing exactly what to ask for was  embarrassing. Having to explain to professionals, or even friends, some things I would have preferred not to discuss, or even know about, was definitely cause for me to feel Bashful!

Throughout the early days of grief and even now, it’s been embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I have felt that people are judging how I’m grieving, how long I’m grieving, and what I am doing to continue living and reshape my life.

As I’ve stepped back into life, I have had to overcome my general shyness to create a new social life. I have reached out to old friends and made some new ones. I have also joined some online dating sites in an effort to find love again. It’s very difficult for me. And, it’s been very disheartening, amplifying the feeling that Ben is the only person who would ever really “get” me. But, despite embarrassment and vulnerability, I press on.

I also feel Bashful about things that are not going as well as I would like them to go, like online dating. I don’t feel like my life is where I want it to be, though I am proud of myself for taking many steps forward, but I am self-conscious and sometimes want to withdraw and stay by myself.

Grumpy

Staying cheerful, positive and focused when my dad and Ben were Grumpy was difficult. They were understandably Grumpy, but their taking it out on me sometimes only made for more Grumpiness! When I had been through all of the scenarios that I just described, sometimes in a single day, it was pretty easy to be Grumpy!

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Ben (pre-ALS) and Grumpy, Walt Disney World, 2001

Now, it’s usually the setbacks that have me feeling Grumpy. The events dim my mood, like when I went to the Georgia Aquarium and my immediate reaction as I walked through that magnificent facility was anger that Ben did not live to join me and have that experience. Sadness and devastation were familiar to me, but the anger was new and it left me feeling Grumpy. I am also Grumpy when I receive unsolicited advice and judgments about how I should handle my life and how I should feel.

To anyone who has seen that side of me, during caregiving and as I’ve traveled through and emerged from the other side of grief, I do apologize!

Happy

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Walt Disney World Parade, July 2014

Even in the worst and “grumpiest” days of caregiving, when Ben and my dad were struggling and patience ran thin, there was still happiness, albeit bittersweet at times. Sharing good times, making each other laugh, seeing Ben or my dad enjoy something, and successfully meeting their needs, were all positive and joyful experiences that definitely made me Happy!

In the early days of grief, you could call me Happy in those moments when I was lost in good memories or I woke up without dreading the day and the thing that would trigger my sadness.

Now, you can color me Happy when I realize that I am not just going through motions, and I actually am enjoying the present without feeling guilt. I realized this holiday season that I have once again found my genuine smile. I enjoy myself and immerse myself in life and activities I love. In the back of my mind is always the feeling that I wish Ben was with me, but I am usually more comfortable with that. I still have my setbacks, but I can be happy again and it feels good.

Sneezy

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Well, this might not apply to everyone, but I’ve got allergies, even to my cat, whose name, by the way, is Disney! I love her and would not trade her for anything, so I deal with the allergies! Some of my allergies actually subsided after I lost Ben and my dad, leading my doctors and me to think that stress exacerbated my problems.

Doc

On this day, December 21, 1937, Walt Disney’s first full-length feature, “Snow White and the Seven Dwarfs” premiered at the Carthay Circle Theatre in Los Angeles. I wish I could say that I have navigated caregiving and grief like Snow White, the graceful princess who happily sang her way through taking care of the seven dwarfs to a happy ending. I do believe that at times I was that person to Ben and my dad. I was very much the cheerleader and the person who tried to keep them entertained. I was also the nurturing person who managed the details of their care, the way that Snow White kept her household together, except that I lack her stellar housekeeping skills! Alas, I relate more to the dwarfs! I’ve written about how, as a caregiver, I often felt like all seven dwarfs in the course of a single day (click here for that post). To mark this anniversary of the film’s premiere, it seems fitting to me to reflect on how, in grief as in caregiving, I can feel like all seven dwarfs- at times, within the course of a single day. Happy- In the early days of grief, you could call me Happy in those moments when I was lost in good memories or I woke up without dreading the day and the thing that would trigger my sadness. Now, you can color me Happy when I realize that I am not just going through motions, and I actually am enjoying a moment in the present without feeling guilt. Doc- Call me Doc as I diagnose my grief. Am I doing ok? Will people think I’m doing ok? Do I care if people think I’m doing ok? Should I care? Where should I be right now in this process? Am I “normal”? Bashful- Sometimes it’s embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I feel that people are judging how I’m grieving, how long I’m grieving, and what I am doing to continue living and reshape my life. It can be difficult to ask for help, and I’m growing too Bashful to ask people who have been listening to me to continue to do so. I’ve repeated the same things so many times, and I do wonder sometimes what people must think. Sleepy- There are many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss. Dopey- Being caught between the past and the present can be baffling. Sometimes I find myself buying something because Ben would have wanted it. When I get home, I am only reminded that he is no longer here, and then I do feel Dopey, and more sad. There are also times when, in the middle of nowhere, something will trigger great sadness and I will break into tears. People are generally understanding, but I still feel kind of Dopey, and Bashful, for that matter! Grumpy- The conflicting emotions of grief definitely make me Grumpy at times. Sorry! Sneezy- Still allergic to Disney, the cat! I still would not trade her for anything. She has been the greatest comfort to me. How about you? Are you more Snow White or one or more of the dwarfs?

As you can tell, Ben preferred to take my pics with the dwarfs!

As their caregiver, although Ben and my dad did have medical care, when either of them didn’t feel well, sometimes it was up to me to figure out what might help. Sometimes, what we thought could be symptoms of a big problem would just go away. Sometimes I had to seek more advice or help. This is as close to a Doc as I will ever be!

Call me Doc as I have diagnosed my experience with grief. Am I doing ok? Will people think I’m doing ok? Do I care if people think I’m doing ok? Should I care? Where should I be right now in this process? Am I “normal”?

Even now, as I feel that I have stepped back into life, and I’ve even felt that I found my smile and childlike enthusiasm for the holiday season again, I assess my progress in coping with grief and my emergence from the very dark days. I read posts from the days when I just started the blog in 2016 and analyze what has and has not changed, what triggers setbacks and what’s healthy or potentially troubling.

I am happy to say that I feel that, overall, I’m doing well. This Doc rests assured that healing happens.

How about you? Are you more Snow White or one or more of the dwarfs? Please share in the comments section below. If you don’t see the comment box, just click on the title of this post.