Caregiver

On Slaying the Jabberwocky in Caregiving, Grief and Life

I can’t go back to yesterday, because I was a different person then.

“I can’t go back to yesterday, because I was a different person then.”- Alice Click To Tweet
I saw this quote with an image from the Walt Disney Productions animated film, as I’ve done here. In fact, it is from the book by Lewis Carroll. Still, it’s a great quote that I could relate to, particularly after my caregiving experiences. Intrigued by the quote, I re-watched the original 1951 version of Alice in Wonderland and the 2010 live action remake. Although I have to admit that they are not among my favorite Disney films, there is a lot of wisdom and insight, as well as some welcome sarcasm, that helped me reflect on the impact of caregiving on my relationship with myself and with others. It continues to resonate as I reshape my life and realize that all of those experiences have in some ways changed me.

“From the moment I fell down that rabbit hole I’ve been told where I must go and who I must be. I’ve been shrunk, stretched, scratched and stuff in to a teapot. I’ve been accused of being Alice and not of being Alice but this is my dream. I’ll decide where it goes from here.” - Alice
“I’ve been accused of being Alice and not of being Alice but this is my dream. I’ll decide where it goes from here.- Alice Click To Tweet
My dad’s cancer diagnosis and then Ben’s diagnosis of ALS plunged me down a rabbit hole, alone, devastated and confused. I wanted to be the little girl who was taken care of, but suddenly I had to deal with very adult realities and take care of my loved ones. The teams treating my dad and Ben gave me instructions and details that sometimes tugged at my own beliefs and my emotions. Especially difficult was taking on the role of parent with my own parent. Instead of being the child protected by my dad, I found myself fighting his negative attitude and working with doctors and nurses to make important decisions for his treatment plan while convincing him to comply with orders because he could have a good quality of life. While ordinarily soft-spoken and shy, I learned that I could be a fierce and resourceful advocate. I was insistent and relentless when it came to getting the most appropriate services for my dad and for Ben. There was a lot of information and I was given a lot of advice, and I frequently felt out of control. There were so many people- professionals and people close to me- telling me what I “had” to do and how I had to deal with things and, when I was spiraling downward, I very easily took direction. But, there were also times that I felt like I could take the reins and make my own decisions. At those times, I did what I felt was necessary, regardless of judgments and disagreements, second guessing myself all the way. That was not always easy for the people I had relied on who were used to directing me, especially those people who naturally like to take control and give direction (I do wish I was a little bit more like that!).

As difficult as it was for some people to see me making more of my own decisions and taking a stand, it was hard for me to change my own self-perception. It was also hard for me to say no to people, or to express my disagreement. I listened politely, even if I did not heed the advice, because I did not even have the inner strength to disagree. I guess I generally fall into the category of “people pleaser.” To be fair, I believe that people had our best interests at heart and I appreciated that. But, as I saw myself successfully handling more caregiving responsibilities, and my dad and Ben became more and more reliant upon me as I gained better understanding of their feelings, I felt my confidence growing, and with that came a growing resistance, accompanied by some discomfort, to automatically complying with what I was told I “had to” or “should” do.

“I’m afraid I can’t explain myself, sir, because I’m not myself.”- Alice

Tapping new sides of myself- stronger, more vocal, more responsible- definitely has come with growing pains. The “Abby” I was most familiar with was compassionate and caring, but also emotional, indecisive and insecure. Suddenly, I was able to see myself as braver and more assertive. Who was this person? I was always someone who second-guessed myself and relied on the opinions of my friends and family. I valued and depended on them and still value their thoughts. But, I also learned that I have to go with my gut sometimes and I can stand my ground. Learning to trust myself has not been an easy process for me, and it has not been easy for some of the people who became used to nudging me forward.

I still struggle with who “Abby” is, although starting at a new school last September gave me an opportunity to completely reinvent myself. Some of my struggle has been that I am no longer the person I most related to- a caregiver, and I did not want to introduce and define myself as being in grief, though it was what I felt most strongly within me.

 

“That’s the trouble with me: I give myself very good advice, but I very seldom follow it.”- Alice
“That’s the trouble with me: I give myself very good advice, but I very seldom follow it.”- Alice Click To Tweet
As Ben’s ALS progressed, and things became much more difficult than Ben was willing to admit, I was frustrated and overwhelmed, and also resentful. I was struggling with those feelings because Ben was dying and I felt that if he wanted to live in denial, then I had to live there with him. I gave myself all sorts of advice, having internal dialogues about insisting on more paid help, requiring Ben to prepare legal documents to make other important arrangements, and making scheduling changes that might have made daily life more tolerable. I had a lot of good ideas! But, I rarely followed my own advice. At times, I got angry at myself and felt helpless and defeated. I’m sure that it frustrated people who cared about me to see me drowning as I had a good sense of what needed to be done but lacked the emotional ability, or, to be honest, the actual capacity, to make it happen. I have thought about that a lot, and, to this day, although I know that a lot was not right about the situation, I know that Ben felt cared for, protected, and loved. Sadly, I achieved that by often ignoring my own good advice.

“It would be so nice if something would make sense for a change.” - Alice

I cannot begin to count the number of times I wished that something in my life would make sense. Juggling caregiving for my dad and Ben would have been comical if it was not so serious. There were middle of the night calls from my dad when he was deciding if he should go to the emergency room. If he went, I would ensure that Ben would be okay and arrange back-up if he needed help, and then I would meet my dad at the hospital. From the hospital, there was an endless string of calls and texts to report on my dad and to check on Ben. There were the ridiculous restrictions of what insurance would cover, when clearly ALS is a terminal disease that renders a person needing much care. The insurance issues were there with my dad, too, as I tried to navigate his entitlements without a lot of consistent assistance from the medical teams. There were my klutzy attempts to address the needs of Ben and my dad, which they denied were increasing, while trying not to upset or discourage them. There were the routines we painstakingly created that had to be immediately scrapped because Ben exhibited a new symptom of ALS that rendered the plan useless. We just wanted something to make sense. That never really happened, but we embraced it as our new normal, with a sense of humor when possible.

“Sometimes I believe in as many as six impossible things before breakfast.”- Alice

I do love the whimsy and fantasy of Disney. But, if you follow this blog, you see that there is a lot of inspiration and insight in the films, and it helps me. Although I find comfort in thinking about wishing wells and fairies with pixie dust, my life and decisions are quite grounded in a reality that was, for several years, anything but rainbows and magic. As a caregiver, and then in grief, it has been so important for me to surround myself with the things that gave me comfort and let me at least mentally escape. I could get lost in fantasies in the same way that Alice dreamed about creating a world of her own. For Ben and me, Walt Disney World was that special world of our own. Disney films, toys and memories still give me that much needed opportunity to fantasize, but also help me to sort through ugly experiences that come with caregiving and loss. It is so important for caregivers to identify and retreat into the things that provide comfort, insight and perspective, even if it is a momentary escape from the comfort of your sofa. I continue to find inspiration and insights as I look for a new happy ending and search for a new prince.

“I do love the whimsy and fantasy of Disney… although I find comfort in …wishing wells and fairies with pixie dust, my life and decisions are quite grounded in a reality that was… anything but rainbows and magic. Click To Tweet

Here are two great phrases uttered by the March Hare that I wish I had said often, and I pass along to other caregivers, with the hope that it will help you to avoid unnecessary and sometimes downright outrageous conversations with well-intentioned people who are not involved or informed but have a lot of bad advice that they are eager to spout.

“I have an excellent idea, let’s change the subject”- March Hare

If you don't think, you shouldn't talk, March Hare

OK, you might want to say that more tactfully, but think it just like this and at least you’ll have a chuckle in your head!

As I emerge from grief, I don’t always recognize myself or know exactly who I am or who I want to be. I feel like I’ve changed. But, I can finally say with some pride that, despite my tears, I faced and handled some very difficult situations with and on behalf of Ben and my dad as they took their journeys from this world. I also challenged myself and learned that I can be strong and brave, I just do it with a lot of tears! There were times of conflict with family and friends, but I honored the wishes of my dad and Ben, and I did what I believed was best and was most consistent with their wishes.

I know that my loved ones have always wanted the best for me and that means the world to me. But I also realize that as much as I have gratefully relied on others to guide me when I run in circles, I have to move forward at my own pace, shaping and fulfilling my own dreams on my own terms. I have to determine where I want my life to go. And, I am fortunate that I am surrounded by people who are cheering me on. I do have some inner struggles, and, in a few cases, relationships that I do care about have been strained and tested, and that has not been easy. But, as the White Queen said to Alice, “You cannot live your life to please others. The choice must be yours, because when you step out to face that creature, you will step out alone.” This was also true for Ben and my dad as they faced death, and it is true for all of us.

In the live action Alice in Wonderland, Alice must slay the Jabberwocky to defeat the evil Red Queen. As caregivers, we have our own Jabberwocky to defeat, as we tackle trying circumstances and help our carees battle the demoralizing and painful effects of illness. Though we cannot defeat death, we are fierce in our battle to slay many obstacles and provide as good a quality of life as possible for the carees whom we love. Then, grief becomes our Jabberwocky, and we slay it as we learn to co-exist with it and not let it defeat us as we emerge and continue to live in ways that honor the loves we had and lost, and that do justice to ourselves.

 

Hakuna Matata- Not Always

The Lion King
Copyright ©1994 Walt Disney Pictures

If you read this blog regularly, you know that I like to put things in a positive perspective, even while recognizing the challenging and not so pretty aspects of caregiving and the obvious sadness of grief. After all, the bad feelings are normal and I think that embracing them is healthier than suppressing them. That said, seeking  professional help or a support group as a way of dealing with them is something that I have done and that I encourage when you’re beginning to wonder if what you’re experiencing is not “normal” (or at least “normal” for you) and is affecting your ability to function.

I take so much comfort and find enlightenment and inspiration from Disney quotes, and they have guided me through caregiving and grief.  But, there are always times that “Hakuna matata” has eluded me, and I’m feeling that right now. I know, it is a kind of coping skills anthem, but when I am at the height of anxiety, hearing “Hakuna matata” antagonizes me. It makes me want to summon my inner Scar (click here for that post).

Last week, I was under the weather with a cold, and maybe that has put me in a funk of sadness and anxiety. Walt Disney said “Why worry? If you’ve done the very best you can, worrying won’t make it any better.” While I can’t argue with Walt, I lack his confidence, and I’ve always worried that my best was and is good enough, especially when I was a caregiver. The truth is, I’m a worrier. I have a good sense of humor about it, acknowledging my need to worry as part of my process for sorting through issues and situations.

Of course, when Ben was struggling with ALS, the worries were real, upsetting, and frightening, without any easy solutions. In addition to the harrowing medical and emotional issues, we had to consider financial concerns, such as how we could hire private aides, where he would live and how to arrange his medical insurance and set up his finances to enable him to live with the help and equipment he needed. An added complication with ALS is that its progression is unpredictable. While studies show that most people diagnosed with ALS live two to five years, there are many people who live much longer, and although we wanted him to be here for as long as possible, we wanted that to be with a good quality of life and with financial security and medical coverage. I worried about Ben’s quality of life, particularly in a facility, which would have been inevitable once he was on life support. I did not like to discuss these worries with Ben because I did not want him to worry. I know he did, and sometimes we discussed it in roundabout ways, but we also procrastinated and ignored the elephant in the room. While it did not help to worry, sometimes it was all I could do. I guess it was a form of anticipation, because when the crises arose, I had often already envisioned them! There was no such thing as “Hakuna matata.”

It has been a while since I’ve felt this down and caught up in worries for days at a time. Feeling ill at least gave me a good excuse to sleep all day. Maybe being home with a cold gave me the time to dwell on things that are unsettling to me. I remembered the many times that Ben would show up at my door with chicken soup and comfort foods when I was ill at home. We always did things like that for each other. What began as a wonder is now a worry if I will ever have that again.

I need to remind myself that overall, I have felt like I am making great strides here in the world of the living, coexisting with my memories and the presence of Ben in my life. I am happy at my new school, I see my friends more often, I am frequently at the theater and I even travel. Even though I had some struggles with loneliness during my recent excursion to Washington DC, I am glad that I let myself live that dream of seeing the cherry blossoms in bloom and I continue to marvel at the beauty in the photos that I took, which definitely is something that Ben and I would have done, too. These are new good memories, but they are overshadowed by being memories of myself alone. I feel haunted by reminders that I am alone and I worry that I will always be alone. That set me thinking about how disheartening online dating has been. Will I ever meet someone new, who understood me the way that Ben did? Will I have a future filled with that kind of love? Ben used to love to see elderly couples holding hands and he would say that one day that would be us. As his ALS progressed, we both got emotional when we saw these couples because we knew that it would never be us. I guess I was reminded of that watching coverage of Barbara Bush’s funeral, along with the footage and stories of Barbara Bush and President Bush and their long and beautiful love story. I’m still grateful for the time that Ben and I had and that despite the tragedy, we shared a most special and devoted love in his last weeks in the hospital. Still, we were cheated.

Recently, talking about health care proxies and wills got me thinking about how I don’t have children to take care of these things. I have great friends, and I am so fortunate for that, but I do not have obvious answers to these concerns. When should I retire? Where will I live? How will I live? I’m not naïve. I realize that everyone has to make these difficult decisions and think about these issues, whether they are single or a couple or family. I guess my worry sets in when I wonder if I will be making all of these decisions alone. Mary Poppins is right that, “Worrying won’t help anyone.” Still, I worry. I guess I have not yet adjusted to being on my own and yet, I do, intellectually, know that I will be fine.

I’m always pleased to share that I have been working through grief and still processing the entire caregiving experience with positive and insightful reflections that are not simply Disney whimsy.  But, for caregivers who might feel alone in their setbacks and difficult times, I want you to know that these times happen for me, too. It’s not all “Hakuna matata.” I’m okay with that, as much as I wish I didn’t have the struggles. I think that I understand about myself that worrying has always been part of my way of dealing with things, and sadness is bound to happen. The important thing I try to remember is that I’m living, trying, doing and hopefully, creating or revealing a future that will bring me contentment. I never underestimate the little joys in life, and when I’m ready to get out of the funk, a phone call, email, conversation, and the arrival of spring flowers are distractions from worry that are helping to lift my spirits. And, there’s always pixie dust.

Ben at the Animal Kingdom with the Tree of Life in the background. 2006- pre-ALS, carefree and doing his best Ricky Ricardo “Babaloo” impression.

Wisdom From Olaf About Caregiving and Love

Olaf had to come home with me!

I recently attended Frozen, the new Disney musical on Broadway. Frozen certainly became a phenomenon among Disney films. The Broadway version does not disappoint. It is magical, wonderful and beautiful to watch, with clever surprises along the way. I would love to have seen it with Ben. I have loved going to the theater since I was a child, but Ben had never been to a Broadway show until he met me. He came to love shows and when I went through his things after he left this world, I was truly touched to see that he kept all of the Playbills and ticket stubs from the many shows we saw together. It has taken me a while to truly love going to the theater again, because I went through feelings of guilt for claiming the freedom to participate in things like theater, which I could not enjoy when I was caregiving, and I simply missed going with Ben. But, now I again find great comfort, delight and inspiration from going to the theater. I do notice that I often look at productions through Ben’s eyes. I imagine what he would think, what I would say to him, what inside jokes would be triggered. It’s what I need to do, at least for now.

Frozen has romance, royalty, family strife, tested loyalties, an adorable reindeer named Sven and a really cute snowman named Olaf! What’s not to love?!  Seeing the show triggered that when I saw the film, it struck several chords for me as a caregiver, and I am using images from the film in this post.

Of course, Let it Go has become an anthem for finding all kinds of strength. I know that it is healthier, and I feel better, when I can let go of anger, of bad memories, and of resentment. When I was caregiving and in grief there was a lot of that, for many reasons. I must admit that letting go, in general, is not always easy for me. I have found, however, that it is better to put my energy towards gaining perspective that allows me to let go of the things that are over and done, that I did not create and that I cannot change.

For me, it is Olaf, the sweet and goofy snowman who so beautifully summed up my caregiving experience at its core, when he pointed out to Anna that, “Love is putting someone else’s needs before yours.”

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

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

We all know that we have to take care of ourselves. We have also heard that if we don’t take care of ourselves we will not be able to take care of someone else.  After all, if we don’t take care of ourselves, we might become ill and will then be incapable of caring for someone else. I cannot tell you how many times I was told the airplane analogy of putting on your own mask first, so you could then help someone else. And yet, as caregivers, we do not always take care of ourselves. In fact, we rarely take care of ourselves.  Hearing that advice became irritating because I knew that I should take better care of myself, but I also knew that I couldn’t. Why? Crises occurred, I was exhausted, there was not enough time, and the list goes on. Ultimately, love meant putting the needs of my dad and Ben first.

When my dad and Ben were ill and needed help, their needs were immediate. They had terminal illnesses. If my dad needed to go to the Emergency Room or if Ben needed to shift his position in bed or needed to use the commode, it didn’t matter that I needed sleep to be able to function at work or if my back hurt. I would find a way to catch up on sleep. I would go to physical therapy or take a pain reliever. Their needs could not be postponed.

I’ve written about the stresses and emotions of caregiving. I’ve explained that my loved ones were very concerned about me because I was running in circles, particularly when I was simultaneously caring for my dad and for Ben. It was my routine, my normal, and I just went with it. I do remember that during the time I took family leave, I enjoyed my time on the train, on the way to and from the hospice, because for those 5 hours every day, I was by myself, even though it was with phone in hand to manage any issues that arose during my commute.  Enjoying my thermos of tea on the train while listening to music became my way of taking care of myself.

I don’t think that I realized at the time that I did not really have an opportunity to deeply feel the grief of losing my dad. I was taking care of Ben, who was also struggling with this loss because he loved my dad.  Also, the death of my dad was a scary and sobering reality check for Ben, who lived in denial of that eventuality. For me, it was one step in the sad forecast of my lonely future. I couldn’t grieve with Ben because I did not want to upset him, but I also could not grieve on my own, because there was too much to do and I was working full-time. At times, I did feel like I was melting down, but I did not see any options, and I was so immersed in handling my caregiving tasks and full-time teaching that I just kept plodding along, with a few pity parties and venting to friends and family in conversations or emails and texts. Sometimes that was a distraction from the grief, but it also meant that the grief simmered within me.

I have to explain that although there were times when putting my own needs aside was the obvious and the only solution, it also caused frustration, sadness and anger. I felt depressed and lonely and frightened, and Ben and I were not always patient with each other, which led to resentments on both of our sides. Unfortunately, although I recognized that I was near a breaking point, I could not convince myself to shift my priorities in a way that changed my routines and accommodated my needs.  I write this because saying that love is putting someone else’s needs first does not mean it is always done easily, graciously or without inner conflict. Everyone’s feelings matter, but they have to be prioritized.  Even in retrospect, despite what reason may have indicated, my heart knows that it was the right and only thing to do.

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

“Some people are worth melting for.”- Olaf

Olaf was so right when he said that, “Some people are worth melting for.” While putting my dad’s and Ben’s needs first sometimes caused some melting, it was in the literal letting go of them that I truly melted. But, love meant supporting their wishes.

I did not like to see my dad in a hospice, although he got such wonderful, compassionate care. I melted as I saw him slipping away, but letting him go as he wanted, and very peacefully, was more important than my desire to keep him with me on this earth.

Love meant dealing with the fact that Ben would have gone to a facility if he had chosen to stay on life support. With a tracheostomy and feeding tube, Ben would have needed 24/7 nursing care that could not be accomplished at home. It was a bleak option, but his needs were the priority and as much as it devastated me to think of him in a facility, and it devastated him to accept that he would not be able to be at home with me, we both had to come to terms with that reality. I worried about his being alone while I was at work. I worried that the staff would not be as attentive as I had been. I did not share those worries with him, but I melted when I thought about it.

When Ben decided to go off life support, I melted because I did not want to lose him. I stood by his decision to go off life support because only he could decide how to live and die with ALS. It was a conflict for me because although I was not prepared to lose him, I was relieved that he would no longer suffer with the disease. I was at his side the day he left, we said our vows, and he was surrounded by loved ones and music. It was worth my melting for him to feel loved and comforted as he left this world on his own terms.

I loved my dad and Ben with all my heart. Losing them, particularly so close in time (a year and a half), was very difficult. But, it was worth melting to have shared the love that we did and to let them go and find peace on their terms.

I would like to state the obvious and suggest to caregivers who are reading this that you take care of yourselves and put yourselves first. But, we all know that won’t always happen. Maybe sometimes. Try. Plan. Fantasize! Taking care of yourself does not have to be big events. Take moments for yourself, even if it is a mental escape, or a nap, or a quiet cup of coffee or tea on your way to an appointment!  The thing is that, as caregivers, just like Olaf, you know and are experiencing and demonstrating the true meaning of love.

Walt Disney World,Frozen,ALS,Caregiving

Walt Disney World’s Hollywood Studios (July 2014)

Celebrating Thumper- Bambi’s Good and Caring Friend

Bambi
© Walt Disney Productions 1942

Last week, in the spirit of the Easter season, I honored Winnie The Pooh’s buddy, Rabbit. Today is Easter, and it seems a perfect time to honor dear Thumper, from Walt Disney Pictures Bambi.  I’ve always loved Bambi, and when I first started this blog, I wrote about the song Love is a Song that Never Ends and how it resonated with me in caregiving and in grief. I recently watched Bambi again and was touched by Thumper’s relationship with Bambi in a whole new way.

Thumper was the very adorable and lovable young forest gossip, and he certainly didn’t always say the right thing. He was the one to point out that Bambi was “kinda wobbly, isn’t he?” and “he doesn’t walk very good, does he?” This is not exactly the positive reinforcement someone wants when struggling and self-conscious! And while his mother had to remind him that “if you can’t say something nice, don’t say nothin’ at all,” Thumper was just a child making an observation, albeit tactlessly, but his heart was in the right place. Actually, he was quite devoted to his new friend, the young prince Bambi.

Thumper and his siblings (also incredibly adorable little bunnies) play with Bambi but also watch out for him. They anticipate where he is going to struggle and they gather around to help him so they can play together. Thumper was Bambi’s motivation. I especially love this clip, in which Thumper assesses the situation on the ice and tries to position Bambi’s legs, advising Bambi to “walk both ends at the same time.” It doesn’t go so well and they both end up skidding and falling. It reminded me of the way I had to work with Ben to help him up and figure out the best way to get around. We each had to trust each other and there were times we were nervous and other times it was fun. There were times that I managed to keep him from falling and got him safely onto the bed or a chair. There were also the times that we both ended up on the ground, fortunately unharmed. And, like Thumper, we often found ourselves saying, “Gee whiz, what happened that time?” I always loved this scene in the film, but now I see it in a new light.

Thumper never gave up on Bambi or their friendship in the same way that as caregivers, we never give up on our loved ones. And, Thumper was so happy when Bambi did have an accomplishment like walking steadily. Though Bambi is first learning to navigate the world and Ben was adapting to new ways to do some tasks and dealing with losing the ability to do others, I could relate to Thumper’s positive attitude of problem solving and encouragement.

Also touching was that he never left Bambi behind in pursuit of his own fun. ALS is known to be an isolating disease, particularly because you lose the ability to communicate. Thumper was determined to have Bambi join him with their other forest friends. It is an important lesson for all caregivers, friends, relatives and others to find some way to remain engaged with our loved ones. Visits, cards, texts, emails, photos, videos and a simple presence can all help a person feel remembered and included in life. Ben and my dad always enjoyed hearing that people thought of them. As their caregiver, it lifted own spirits when my friends reached out to them, too.

The film also deals with Bambi fear, confusion and sadness when he loses his mom. He did not know what the future and the world held in store. But, time went on and winter turned to spring, and Bambi grew up. He reunited with Thumper and Flower and the rest of his friends and all their families, and none of them ever forgot the friendship they shared. Thumper and Bambi- and a dose of Disney- remind us that love never dies and beautiful memories stay strong and sustain us as we move through life’s good and bad times.

If you haven’t seen the film, or haven’t watched it in a while, treat yourself. It is a beautiful story.

To everyone who celebrates it, Disney and I wish you a Happy, Peaceful and Healthy Easter!
And, since the holidays coincide, a Happy Passover as well!

 

What Pooh’s Friend Rabbit Knew About The Importance of Routines

Pooh gets stuck in Rabbit’s home entrance, so Rabbit tries to work around the problem! From Walt Disney Production’s The Many Adventures of Winnie the Pooh (1977)

With Easter coming up, I guess bunnies are on my mind. Since I have been thinking about the importance of routines and rituals with regard to caregiving and grief, I am going to put the spotlight on Winnie the Pooh’s buddy, Rabbit. Rabbit is the friend who has to have everything just right, who gets flustered when anything goes wrong or things are not in their proper order. He saw himself as the caregiver of his friends Pooh, Eeyore, Tigger and Piglet. Chances are, as a caregiver, he would put excellent routines in place. He would organize schedules and supplies with impeccable care. He would also be sent into a tizzy at the slightest change in plans but would try to come up with a work-around. Crises might send him into an utter tailspin but Rabbit would be the one to try to solve a problem, possibly more to maintain the order he needs in his world than to show compassion. I think that he might make me nervous if he was my caregiver. And, as caregivers know, trust and compassion are key. What do you think?

Although chaos became my normal during my years of caregiving for my dad and Ben, routines were a great starting point. Since I was working while Ben was at home, we had several routines in place for his safety and ease of getting through the day. I arranged his food so that he could get to it easily. Rabbit would have been furious with my inability to keep things neat, but my priority was to accommodate all kinds of supplies and move things wherever they fit to make other things accessible for Ben. At one point, my dresser was against my closet door and I basically stuck my arm into the closet and grabbed whatever I could, hoping it would be a coordinated outfit. Rabbit would never approve. I tried to see the humor, but humor is not Rabbit’s strong suit. Every day, Ben sent me a text to let me know that he was awake and at his desk and I knew when to expect those texts so I did not worry. I texted when I left school and he let me know if he was okay and if he needed anything. Of course, we also texted throughout the day, and in the case of a problem. Texting became essential when he had trouble answering, holding and speaking on the phone. As each event of ALS struck, we came up with a plan to deal with it. After he died, I missed those routines, especially sending my daily, “I’m free!” text to let him know I’d left school. It’s those routines which seem so silly that became rituals and those are the ones that can still make me cry when I think about them.

Ben and I lived in an apartment building without a doorman, and when Ben had trouble getting to the buzzer, we had to make special arrangements if someone was to visit and I was not home. Ben was in a visiting doctors program through Mount Sinai Medical Center, and those appointments could be hard to schedule. When Ben did hire a private pay aide for a few hours each weekday, all visits had to be coordinated when she was there or when I got home from school. It was a finely choreographed day! However, even the best ballerina sometimes trips or falls on stage, and as most caregivers know, days can be very unpredictable. At least routines offered a structure and a jumping point.

Ben and I also did maintain our rituals whenever possible. We went to the opening weekend of Disney films until he could no longer get down the stairs to go outside. When we were fortunate to be able to return to Walt Disney World, we enjoyed the attractions that we loved, even though there were challenges. Ben really did not want ALS to stop him. On holidays, I decorated the apartment after I put Ben to bed, so that he would have a surprise waiting for him in the morning.

When I lost Ben, I lost my structure. There were no routines in place. I only had to tend to myself, and, frankly, that’s never been my favorite thing to do. I could spend an entire day sitting on the sofa thinking about what to do, and end up doing nothing, relieved that I could just go to bed but lamenting how unproductive I had been.

Work became an important routine because it did structure my day and get me out of my apartment. I worked at a stress-filled middle school, but it filled my hours and gave me purpose.  In what was suddenly my free time, I wrote a lot, in what has ultimately become this blog.  I started to do things that I missed, like socializing with my friends and going to the theater. But, theater did not offer the same escapism and diversion as it always had- I felt guilty about enjoying myself, I had too many memories of when I could not go to the theater and how difficult it was to enjoy myself when I was able to go out, and I had to accept that I would never again be able to do these things with Ben. I spent many weekends staring into space. I was hard-hit by Ben’s absence, just a year and a half after losing my dad, which was another loss of routine, and the people who had consumed my life and my heart. For the first year, I marked in my calendar every single Wednesday, the day Ben died, noting how many weeks had passed, and thinking about him even more than usual, setting aside time to reflect and remember.

Rituals have become a vital part of my being able to dive back into the world of the living. I have maintained some of Ben’s and my rituals and created new ones that honor our relationship. I continue to attend opening weekends of Disney films, as I did last weekend at A Wrinkle in Time. I go by myself because I cannot imagine being with anyone else and it is emotional for me. When I am by myself I can feel Ben with me. I know that some people think that’s strange. I have not yet returned to Walt Disney World. Although I had been there before I met Ben, it was a most special place for both of us and, after his ALS diagnosis, it was the one place where he transcended the disease and felt most free. Our favorite time of year to go was around my birthday, which coincided with the Halloween celebrations. I don’t know if I will ever be able to resume that tradition without Ben.

I have written about how I have made it a ritual to put Ben’s favorite Christmas tree ornaments on the part of the tree where he liked them so he could easily see them all day from his desk. It feels right. I continue to look over at his desk chair, which I have also kept despite its shabby condition, and I feel comforted to see his computer still in its place of honor. There are so many memories are there.  I have also written about how when Ben’s computer crashed, I hired someone to restore it so that I could keep playing his music playlists from his computer (click for post). One of the reasons that Ben’s computer and its music library is so important to me is because music was so essential to Ben’s being. When we first started dating, he often gave me lyrics to Beatles love songs. On my birthday and on our anniversary, left special videos and music clips for me to play. Now, on his birthday, I play for him the Beatles “Birthday.” It makes me cry but I look forward to what I have made a ritual and in my heart I know that wherever he is, he hears it. I’m ok with tears. Sometimes the emotions have to come out, and, with them, come beautiful memories.

One of Ben’s notes with instructions for his musical anniversary surprise for me. As you can see, he always knew that Disney took priority!

I also created a special music playlist called “Ben.” This playlist contains songs that were special to us for different reasons, both happy and sad. One song, “In My Life,” was his favorite Beatles song, and a song that was played for him by a kind and talented musician on the day he died. “It’s a Small World,” because we loved that attraction and he always teased me that it was my ringtone and ringback tone on my phone. “The House on Pooh Corner,” because Ben’s doctor, in an effort to provide some level of comfort and cheer on the day Ben separated from the vent, found the video and played it on his phone for us to watch, and that touched my heart. And, there are a few other important songs. It is my routine and ritual to listen to this playlist every single morning on my way to work. No matter what happens, Ben is with me as I start my day. It gives me a sense of comfort and security and it gets me moving despite how I’m feeling.

I guess rituals and routines are sometimes interchangeable for me. But, it gives me a sense of grounding to know that I will be watching Monsters Inc, Toy Story (1,2, and 3) and The Incredibles on Ben’s birthday or even the sad milestones of his going into the hospital and his passing. They are simple and sentimental ways of honoring the unique and special parts of our relationship.

I was never like Rabbit. I am a horrible housekeeper, and I could never keep things in great order, though I did keep our lives completely organized around Ben’s care and well-being. I like to think that Rabbit would have appreciated that I am, however, insistent upon my routines and rituals when it comes to honoring Ben and the things that were unique to our relationship. No matter where life takes me, these routines and rituals give me a sense of security in the present and the knowledge that I bring the love from the past along as I move forward.

ALS, Walt Disney World, Pooh, Rabbit,Caregiving

Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.