Caregiver

What “A Wrinkle In Time” Taught Me About Caregiving Warriors

Last weekend, in keeping with the tradition that Ben and I had for seeing Disney films on their opening weekend, I saw A Wrinkle in Time. It is difficult for this Disney fanatic to admit that I was disappointed, but I was able to see beyond the film’s reliance on special effects to be touched by powerful messages that resonated with me. The film prompted me to go home and reread Madeleine L’Engle’s book on which the film is based, and together, the book and film have been a moving experience.

In Disney’s film, A Wrinkle in Time siblings Meg and Charles Wallace are on a quest to find their father, who has disappeared as a result of a scientific experiment to cross time and space to find other planets. They are led on this quest by the guiding spirits of Mrs. Whatsit, Mrs. Who and Mrs. Which. It is a fanciful story, but one that touches on love, hope, faith, and stretching your mind to see possibilities. Not surprisingly, I saw many parallels to the role of caregivers.

The spirits tell young Meg that they are in search of “warriors” who will “serve the good and light in the universe.” I could not help but think that this is a fitting description of caregivers. We are there to help our carees with their physical and emotional needs, to advocate for them, and to make life as positive as it can possibly be.  My support of Ben encompassed all that would enhance his quality of life and support his wishes. That’s what a caregiver does. It took me a long time to understand why people called me brave when they described my experience with Ben. But, as caregivers, indeed, we are brave. Although ordinarily fairly shy, I was a fierce warrior when it came to advocating for Ben. I could not see it at the time, but now, I look back at that experience with pride and love.

As fierce as I could be, and as joyful as my demeanor usually was, so that I could almost always make Ben laugh, Mrs. Which hit the nail on the head when she said, “The only thing faster than light is the darkness.” In A Wrinkle in Time, the “It” was the darkness, the negativity, the hate. For us, the “It” was ALS. As much as we wanted to be hopeful and I wanted to be a cheerleader, after any kind of scary incident, we would quickly fold under the darkness of ALS as it took away Ben’s ability to walk, to use his hands, to chew and swallow, to speak and to breathe. We had good, loving and silly moments, but each struggle and crisis cast the shadow of an inescapable darkness. We fought to keep those positive moments and attitudes, but it was a constant battle.

As Meg, Charles Wallace and their friend Calvin embark on the journey to find their father, Mrs. Witch cautions them that, “You’re going to be tested every step of the way. Have faith in who you are.” This is a caution for every caregiver. The tests never end. I was tested with every issue that arose along the way as Ben’s ALS progressed. As life got more difficult for Ben- and his tests were never-ending and impossible to fathom- it became more difficult for me, too. My physical strength was first tested when Ben began to fall. Lifting him was quite a challenge and did eventually sometimes require my emotional strength in insisting to Ben that I had to call 911 for assistance. Transferring Ben from his chair also tested my physical and emotional strength. I had to overcome my generally squeamish nature to tend to Ben’s daily living needs.  It was exhausting and devastating to see him struggle with the physical challenges and the way that they made him feel, to juggle a full-time job with full-time caregiving, to deal with the fact that he was going to die and to help him deal with that fact. Navigating these issues constantly tested our patience, as we experimented with accommodations, mishaps, disappointments and frustrations. Faith in each other, maybe even more than in ourselves, allowed us to find the strength within ourselves to pass all the other tests. At times, however, we kept Finding Nemo‘s Dory’s mindset to “Just keep swimming.”

Meg’s mom tells her, “My love is always there, even if you can’t see it.” Ben and I had to have that faith, and to be perfectly honest, it was not always easy. We lost patience with each other, hurt each other’s feelings, and went through phases of hopelessness and helplessness. We could see past our disconnects, impatience and frustrations because even when it was not apparent, the love we had for each other was always there without a doubt.

Meg was able to reunite with her dad and bring her back to Earth. Of course, I could not “wrinkle time” and bring Ben back to this dimension. I’ve written so many times that Ben is with me in my heart. I know without question that although he has gone, his love is always here. Even though it does not always compensate for his physical presence, I feel him in so many ways. This film let me realize and embrace the unexpected gifts that Ben left with me. Through this experience, I gained a certain confidence, and I believe that Ben was happy to see that because he never lost confidence in me. Now, I have begun to acknowledge the quiet warrior within myself who, despite a bumpy road, is forging a new path, guided by the spirits of Ben, as well as of my mom, dad and grandma.

The film A Wrinkle in Time did remind me of those beautiful and important messages that I hope will support, comfort and motivate other caregivers. However, my suggestion to you, which may be particularly helpful if you cannot get out to a movie theater, is to read the book while you wait for the film to become available on DVD/Blu-Ray/Digital.

It’s A Small World After All

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, It's a Small World

2011- It’s a Small World allows a wheelchair to board the boat, and since that was so easy (and, ok, there are not long lines) we road it frequently! YAY!

For musical accompaniment while you read this post, click below to hear the song!

It’s a Small World
Lyrics and music by Richard M. and Robert B. Sherman

It’s a world of laughter,
A world of tears.
It’s a world of hopes,
And a world of fears.
There’s so much that we share,
That it’s time we’re aware,
It’s a small world after all.

Chorus:
It’s a small world after all.
It’s a small world after all.
It’s a small world after all.
It’s a small, small world.

There is just one moon,
And one golden sun.
And a smile means,
Friendship to every one.
Though the mountains divide,
And the oceans are wide,
It’s a small world after all.

Chorus:
It’s a small world after all.
It’s a small world after all.
It’s a small world after all.
It’s a small, small world

It’s a Small World is one of my favorite songs, and the ring-tone and ring-back tone on my phone, either to the delight or dismay of people who call me. It is also my favorite attraction at Walt Disney World, and was one of Ben’s, too, and he loved that after his diagnosis, he could easily ride right onto the boat with his scooter and electric wheelchair. I do not like to get political in this blog, but I can’t help but think about how timely this song is and wish that we had more politicians who promoted this kind of unity. But, this is a blog about caregiving.  As a former caregiver, and now a participant in support groups for caregivers and family members of people with ALS, I see so much judgment and the hurt it causes- from caregivers, carees, family, friends and others. Although we all wish we could dismiss the opinions of others, nobody likes to feel judged, particularly when we are already vulnerable and those judgments make us feel inept. It’s so important to remember, and sometimes to look for, the things that we share, even if we take action in different ways. Also, while we debate the efforts that we make, a simple smile is a universal act of kindness that can make a tremendous difference in our lives.

Yesterday, I was reminded of how important it is to have compassion and to be considerate, rather than judgmental, of what people are experiencing. We never know exactly what is going on in someone else’s life or how much we might have in common with a stranger.

I was waiting outside a movie theater to meet a friend, when a woman came up to me to ask for directions. I directed her back down to where she was walking from and she got very upset, saying that she had just been told to come up the block from that direction. I pointed to the street signs- Manhattan is a grid in most parts-  and showed her the precise street she was looking for, which was literally one block away. She showed me the exact address she needed to find, and I confirmed my directions and told her what the cross streets would be, hoping to comfort her by explaining that I lived just below it in the same range of numbers. She was inconsolable. She told me that she was going to her friend’s apartment and was trying to call her, but her friend would only text and would not answer her phone.  The woman appeared to be a New Yorker, but I could see that for whatever reason, she was distraught and seemed almost disoriented. I offered to walk her to the block and that seemed to appease her. When we got to the corner, she got upset again, saying that it was the block that she came from. She tried to call her friend again and got no answer. I didn’t understand why she didn’t text her friend but did not ask questions. Since she was so upset, I offered to walk up the block and see if I could spot the building. I quickly found the building, walked back to the corner where she waited for me, and escorted her to the building.

As we walked towards the building, she apologized for walking so slowly, saying that she had a lot of health issues. I smiled and said it was no problem and told her that my husband had ALS and I walked slowly with her, remembering how I made those accommodations for Ben, then walked beside his scooter, then his electric wheelchair, sometimes having to help him steer that vehicle. She confided that she had Parkinson’s and I applauded how well she was managing despite her worry. We smiled and wished each other a good day and she calmly went into the building.

I walked back to the theater thinking about how at first glance, she just seemed unnecessarily frantic and somewhat unreasonable. Once I understood the context of her panic, I saw that she was probably terribly concerned about walking back and forth, and maybe uncomfortable, tired, and unsteady. But, it really didn’t matter if I understood. What mattered is that I could easily lend a hand and relieve a stranger’s stress.  I then wondered how her friend could be so thoughtless to insist on her texting when, with Parkinson’s, she may have found that a difficult task, especially in the severely cold weather. It seemed at the very least, terribly inconsiderate. Perhaps her friend knew little about her illness. In this case, it would be appropriate, and responsible, to ask how best to accommodate someone. The trick is to do it without making the person feel like a burden or to call great attention to their needs. In the case of someone who is reluctant, or too proud, to ask for or accept help, it can be useful to arrange to be  conveniently nearby.

I have written quite a bit, even recently, about judgments that people made about Ben based on his speech or being in a scooter as opposed to an electric wheelchair (he did eventually need one). As caregivers, we know our carees, and, even at that, sometimes we have to listen to them even though we have our own opinions of how to handle various situations. I was fortunate that Ben never lost his ability to communicate, even though it became more difficult to understand him. He knew himself and his body very well. That’s not always the case, and when it isn’t there is frustration on the part of everyone involved. But, a smile and acknowledgment that we all matter can do wonders to help relieve stress and foster communication and cooperation.

I believe that we know that Eeyore is right that, “A little consideration, a little thought for others, makes all the difference.” Ben and my dad always appreciated expressions of consideration and kindness. Likewise, it meant the world to me to know that they appreciated my efforts on their behalf. Sometimes it could only be expressed with a smile and a squeeze of the hand, but that spoke volumes, especially after bouts of impatience and disagreement and, believe me, those did happen!

We all have our routines, our world views, our opinions. We run across so many strangers in our lives. We have no idea what’s going on in their lives. Even when we do, we are not part of the dynamics of other people’s relationships. People who knew me thought that I should handle things differently and got frustrated and concerned about what they thought was my inaction but was sometimes an emotional paralysis. I’m sure that there were occasions when I was frantic and people thought I was unnecessarily high strung. Strangers didn’t know that I was the caregiver of a man with ALS at the same time that I was helping my dad who had cancer. They did not know that I was in tears as I rushed past them because I was scrambling to make a train to avert a crisis. Undoubtedly, some of these strangers had their own stressful situations. In those moments when there is the inclination to judge and offer an uninformed opinion, or lose patience, please remember what Eeyore said, and also that “There’s so much that we share that it’s time we’re aware, it’s a small world after all.”

To all who now cannot get that tune out of their heads, I apologize- well, sort of. After all, it is my favorite song! These are a couple of favorite pictures from the attraction.

Love these girls!

 

We never passed these girls without shouting “ooo la la” along with them!

 

Some of you may feel like this right now. The sign was on the attraction one year but we never saw it again.

 

July 2014- we never really mastered “the selfie.”

 

How Iago Has Helped Me Through Difficult Times in Caregiving and Grief

ALS,Caregiving,Grief,Iago,Aladdin

The beginning of a new year should be a positive time of looking ahead, setting goals, and optimism. For me, I kind of dread January and February because of the anniversaries- my mom died in January, my dad’s birthday and death occurred two days apart in February, and Ben’s birthday was in February. All I can do is sigh. I guess the melancholy that looms conjures for me of the uglier and sadder caregiving memories, and strengthens the waves of grief.

Last year, I was thrown when Ben’s table collapsed during the holidays and I had to throw it out (click here to read about the things that mattered). I still miss that ugly table because it held so many beautiful memories of Ben.  Then, I was unnerved when I added new ornaments from London to the tree because everything about the tree represented Ben and me. This year, I was prepared for the conflicting emotions as I decorated the tree. I still put the Ben’s favorite ornaments exactly where he liked them, so he could see them from his chair at his table.

When I plugged in the pre-lit tree I saw that the lights didn’t work in several places. Another heartbreak. Ben got that sparkly pink Christmas tree for me when having a real one became too complicated given our space. I admit that I get sentimentally attached to a lot of things, as evidenced by my home filled with mementos from loved ones and special times. Therefore, it is hard for me to part with things that Ben gave me, because represent parts of our relationship. I kept the tree up for the holiday season, feeling that the lack of brightness reflected my mood, and I procrastinated about taking it down. I knew that dismantling the tree meant throwing it away.

Yesterday was the day I had to take the tree out to the curb. As I looked at it, the sadness I felt was not just about letting go of the tree, but of how small and insignificant the tree looked on the tree. Nobody passing this discarded tree would know what that tree represented, how it brought joy during holidays that were not joyful. They would not know that it was the last tree Ben ever saw and how it was decorated according to his wishes and delights.

Although I now feel particularly vulnerable, and I was thrown by the loss of our silly, sparkly pink tree, I also realize that Aladdin’s Iago was right when he said, “You’ll be surprised the things you can live through.” That’s a good life lesson and an important reminder. Although losing the tree doesn’t come close to the tragic and frightening events that occurred as I watched my dad and Ben succumb to their illnesses, it conjured many of those bad memories.  The tree was yet another symbolic loss that amplified that loneliness and makes me wonder when and if all of this will end. I do know that somehow, I keep going.

Throughout my life, I have generally thought of myself as a crybaby, very squeamish, and not physically or emotionally strong. I had a hard time comprehending why people told me that I was brave, when I was not the one facing death, though I have come to understand what was perceived as my bravery. I will always believe that caregiving was the most important and loving thing I have ever done, but it was also intensely difficult, devastating and exhausting. This is probably why I relate to Christopher Robin’s quote, “You are braver than you believe, stronger than you feel and smarter than you think.”

During caregiving for my dad and Ben and then, in grief, despite the times that I felt so close breaking down and so incapable of meeting the challenges, I must remind myself that lived through it. In fact, I did more than live through it because Ben and my dad knew that I did my best for them, advocating, caring for and loving them.  And, although there are still unexpected triggers that cause me to stumble in grief, I know that Iago was right and I’ll continue to get through the waves of sadness and floundering. After all, I don’t want the worst times in my experiences to be what define me or the deeply loving relationships I had with these people whom I love and miss so much. It’s taken time, but I have come to realize that integral to getting through these times is my finding ways to honor my Ben and my mom and dad every day- even through my blogging- and keeping them in my hearts, letting them guide me as I reshape my life, embrace the present, and look to the future.

Disney,ALS,grief,Christmas,Chanukah

Our last family Christmas/Chanukah, 2014 with our sparkly pink tree. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)

ALS,grief,Disney,Christmas

Disney ornaments, one of our photo ornaments, one from Liberty and one from Harrod’s in London. There’s also a Schnauzer I got with Ben- I grew up with Schnauzers.

Pooh and Piglet, Ben and Abby, Best Friends, Best Memories

Walt Disney World, 2012

Yesterday, I received an email from a friend who was doing a crossword puzzle. He wanted to know who was Pooh’s 6-letter friend. I wrote back that it could be Piglet, Tigger or Eeyore, but Piglet was Pooh’s best friend.  Sure enough, the correct response was Piglet. I didn’t expect the day to be filled with memories that were conjured by that simple email.

When Ben and I first started dating, we often walked to the flagship Disney Store on Fifth Avenue in Manhattan. It is no longer at that location. We wandered the 3 floors and I often left with little gifts- the courting phase of a relationship is fun, indeed!

Having spent increasing amounts of time with me, Ben was becoming fully immersed in the Disney mindset, and loving it, sometimes to his own amazement.  One day, as we strolled through the store, Ben called me to look at a figurine, exclaiming, “Abby, look! It’s Piglet and his best friend, Pooh!” I stared at him, speechless, and then started to laugh. He shook his head, laughed, and said, “I was macho before I met you!” Truth be told, he was not so macho. He was a big teddy bear, and he could calm me down with his great hugs. He was also a big kid at heart, and he indulged my inner child, and that was us.  He bought me that figurine as a surprise, and it will always be so special to me.

Disney Store,Winnie the Pooh,Piglet

Piglet and his Best Friend Pooh!
A very special figurine with very sweet memories.

Because of that incident, Pooh and his friends had a particularly special place in our hearts. At Walt Disney World, we always ate at the Crystal Palace buffet, so we could see them. After Ben’s ALS had progressed a bit, I got him settled at our table and then got a plate of food for him. There was one time that Pooh came by our table when I was at the buffet. When I returned, Ben told me that I’d missed Pooh but that he told him that I was going to be disappointed that I missed him. Ben was concerned that Pooh might not have understood him, since his speech was impaired and the costume would make it even harder to hear him (Yes, we did know it was really an actor in a costume, but when we were at Walt Disney World, we completely dove into the fantasy)  A few moments later, I looked up and Pooh was literally running towards our table. He pointed to Ben and then tapped his own forehead, letting me know that he remembered to come back (I speak fluent Disney). Pooh gave me a big hug and we posed for photos. Ben was absolutely thrilled. In fact, making that happen for me was monumental for Ben because, at this point, Ben needed a lot of assistance, and that was difficult for him on a lot of levels: It was not easy for him to be so vulnerable, he was self-conscious, he liked to take care of me and he felt like he could not do that anymore, and there was always a looming worry of what was going to happen next. In this moment, Ben was the hero- he brought Pooh to me! This remains a most treasured memory.

Walt Disney World, 2012

The memories are important. They are everywhere. People might find it odd that so much that I have and do is tied to Ben, and that I continue to regularly share these memories and talk about him. Am I dwelling in the past? Am I keeping myself in a relationship that is no longer here?

There are times when I find that I do want to retreat into the comfort of my memories with Ben. There is also a feeling that I want and need to keep Ben in people’s hearts. I still have a relationship with Ben, though, of course, it is changed. He now resides in my heart and guides me. The fact that we had a perfectly imperfect relationship makes me want to find love again and to create new special memories, though it is also hard to imagine.

Walt Disney World, 2002
The pre-ALS days.

Grief is predictably unpredictable, and I do measure my reactions to these kinds of occurrences.  Am I doing better? Am I handling the grief differently? Better? It’s a day by day co-existence. Yesterday, I found that although the email from my friend made me stumble at first because I immediately thought about how much I miss Ben, I found myself smiling throughout the day as our sweet Pooh memories popped into my head. That was a good feeling. I know and am comforted that Ben is still with me, and that our time together- the good times and the ALS times- has helped to shape me. I struggle with the reminders that our time was cut short and there will be no new memories with Ben. I do feel like I am becoming more accepting of and comforted by knowing that he is with me in my heart, so he will be present in my future.

Walt Disney World, 2011

 

Heartwarming Thoughts When I’m Feeling “Frozen”

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

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

 

How could I not think about Frozen on a day like today? It’s a wonderful film with romance, royalty, family strife, tested  loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?! I’ve written before about what Olaf knew about love and melting (click here to read that post), but a day like today once again brings Olaf’s lessons to mind. The sweet and goofy snowman continues to sum up my caregiving experience at its core.

On this freezing cold day in New York City, amidst several freezing cold days here, I could not help but reflect on days spent trying to help Ben to keep warm.  As I am writing this, I am sitting in Ben’s huge old sweat pants from Walt Disney World, along with his Mickey Mouse thermal shirt and Walt Disney World Christmas sweater. My apartment is unusually chilly- normally it feels like a sauna, so I’m happier like this. And,I like to wear Ben’s clothes. They feel cozy and like he is wrapping himself around me, and that warms my heart. Unfortunately, it was not easy to keep Ben 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.

Our apartment is very 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.

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.

Photo collage towel.

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. 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.

Today, wearing Ben’s clothes and knowing how miserable he would be in the chill, I am feeling a little melancholy. It feels like a long time ago that these were my caregiving responsibilities, and it also feels like just yesterday. I miss him. 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. It’s taken me all this time to rebuild the snowlady that I am. I realize that I did find great satisfaction in being able to help Ben and I take pride in the love we shared and the trust he had in me. 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)