ALS

What Alice Knew About Caregiving, Grief and My Identity

I saw this quote with an image from the Walt Disney Productions animated film, as I’ve shown here. In fact, it is from the book by Lewis Carroll.

 

School started last week. Two days of just the teachers and administrators and two days with the students. Of course, no teacher sprints back to school, but when my dad and Ben were ill, I especially  dreaded that day. In those days, some teachers knew not to even ask me how my summer was. They knew not to ask me how my weekends were! I would sit and observe everyone sharing their fun summer stories and just hope that I didn’t get asked questions so I didn’t have to shrug and get those sympathetic or pitying looks.  After I lost Ben, when I started in a new school, where only a couple of people knew me, I could just give a generic reply to strangers rather than reveal how difficult summers were. I’m not a terribly superficial person, so it felt like I was not really being myself, yet I was grateful to shed the image of the caregiver running in circles to tend to her dying dad and husband, or the woman grieving her losses. Last week, when asked how my summer was, it was a strange feeling to be able to respond with complete honesty and enthusiasm that it was great. I was keenly aware of feeling good and yet awkward about that answer.

Summer remains a time that is shadowed by the sad memories of Ben’s departure. As this summer approached, I braced myself for those memories but still made plans that I would enjoy. I am pleased, relieved and even proud that I truly had a delightful summer. It feels like an accomplishment. Still, it comes with a bit of guilt and confusion.

I sometimes wonder if my ability to fully immerse myself in life and joy means that I am distancing myself from the loss of Ben. Is it a lack of respect for Ben? Does it appear that way to others? If being Ben’s caregiver and grieving widow have been the ways I have defined myself for such a long time, who am I without those most important aspects of myself? Who do I even want to be?

Although I felt relieved to be able to smile and say that I had a great summer, there was so much emotion and history behind that seemingly simple response. People who have known me through all the difficult years know that it is a big step to be able to experience joy again beyond just having some good times. I am so grateful and appreciative that they are happy for me. For those who don’t know me, it is just casual conversation among acquaintances. Part of me is happy to be a new Abby without that sad history. Part of me feels that those are such vital pieces of who I am that to be unaware of them is not to really know me. Also, it feels strangely disrespectful if Ben is not somehow a vibrant part of the new Abby. It’s hard for me that I’m no longer part of Abby and Ben. By saying I had a great summer, it feels that I am not acknowledging the pain that did exist and continues to haunt me. It dismisses my ongoing struggle to achieve a balance between living in the here and now and taking Ben, and essentially, my past, everywhere in my heart.

Alice was right. I can’t go back to the person I was before the caregiving days and grief. Those experiences did change and shape me. People will not necessarily know my experiences. If they get to know me, it’s likely they will because Ben, and our journey with ALS are vital parts of the person I have become. This blog, my volunteering and my goals to work with other caregivers evolved from those experiences. All these things keep me heading towards the future but also keep Ben with me as I venture forward.

Who am I? In some ways, am still floundering to define myself. I hope that in time I will become more comfortable with myself without so much self-assessment and self-criticism. I knew myself best as a caregiver and person in grief, and the transition to a life without those prominent roles has been difficult.  Of course, grief does not really go away, though it shifts. The Abby from before my days of caregiving and loss has always lived within me during those rough years, but I am just not exactly sure who I am at this point in time. Maybe this is simply who I am, realizing that as we go through life, it’s okay that people will enter and exit and not necessarily know my history. I have yet to be comfortable with who I am in the present and as I look to the future. Maybe I need a looking glass.

 

How Walt Disney Helped Me Understand Grief, Happiness and Optimism

Happy memories from Walt Disney World.

I have been hearing and reading so much about how we “have to” choose to be happy. Maybe it’s because last week was the fourth anniversary of the day that Ben left this world, but I have been thinking about the many pieces of advice I have received about dealing with grief. I have been thinking about my own happiness and attitude and how they continue to shift over time. Walt Disney has been an inspiration to me in so many ways. He said two things that make a lot of sense to me when it comes to grief and how we look at life. It seems to me that we tend to equate happiness and optimism, and while there may be a connection, we must draw a distinction between happiness and positivity or optimism.

 “I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

Walt Disney, Walt Disney World

 “Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

From the time that Ben left this world, I received the rallying cheers about the good news: I had my life back, it was time for me, it was time to move on, time to close the book and start a new chapter. Sometimes, I felt like people said these things to make themselves feel better, or because they felt uneasy with my grief. Some people were simply judgmental and felt that I had exceeded their idea of an appropriate time to feel grief. Superficial clichés are easy to spout when you just don’t want to invest in conversation. Yes, I knew that Ben would want me to be happy, but what I realized is that if I wasn’t acting happy, certain people were uncomfortable. They wanted to advise but not to listen, but I was not happy and did not want to act. I learned when to be very superficial and when I could truly be myself. I am very fortunate to have been surrounded by a lot of genuinely caring and loving friends/family. They have been there for me throughout my experiences in caregiving and grief, and while I’m sure it was difficult for them to listen to and see my pain and stagnation, they let me express myself, validated my feelings and gently shared their thoughts. Those who were more adamant about what they felt I “should” or “had to” do definitely felt more tension when I asserted myself and my right to feel the way I did. Many times, the best support I got was a compassionate ear, and at times, a shoulder. Sometimes, the best help you can offer is your presence. Telling someone who is grieving to simply choose to be happy and do things to make themselves happy is dismissive and tone deaf.

The notion of happiness is not easy in grief. I may have found a lot of happiness-or maybe more comfort- in the memories, but the sadness was also palpable. Sometimes there were brief moments of happiness that snuck into my overall feeling of devastation, but I still did not feel happy in my life. It was often suggested that I do things that made me happy, but I did not know how to begin to identify those things, and frankly, I did not want to feel happy. Sometimes the grief was overwhelming and paralyzing, and at those times it took too much energy to be optimistic or positive enough to look for happiness. A happy event was frequently followed by confusion, frustration and amplified sadness when I realized that it was nothing more than a fleeting distraction and I was still arriving home to be alone without Ben. I was not quite sure how to define happiness- for a time it was just a moment of not feeling the pain of grief. Having experienced the loss of my parents, grandma and other loved ones, I did, however, know that there would be shifts and I chose to be optimistic that happiness was attainable- at some future and unpredictable date.

As Joy learned in Inside Out, in life, happiness and sadness are not mutually exclusive, and anger, disgust and fear also have their roles. When I have tried to process my caregiving days and the losses, the idea of happiness seemed way too elusive and simplistic an option and those happy moments that I experienced were only a superficial illusion. There was also a lot of anger at and disgust with ALS, some people around us, even Ben and myself, and that’s hard to think about, although I have gained some perspective with time. Fear has also been prevalent- first, it was the fear of impending loss and potential crises, then fear of the future and fear of being alone. I desperately wanted to be happy, despite not really knowing what would make that happen or how it would feel, but I also wanted to feel that I was reaching to be positive and optimistic.

For a long time, the idea of happiness came with a lot of guilt, because Ben could not share that happiness and so much opportunity was taken from him because his life was cut short. Was it appropriate to be feeling happy or enjoying my time? Did it mean that I didn’t miss Ben anymore? Did it mean that I was happy to have been absolved of my caregiving responsibilities? I judged myself as much as, or more than, I felt judged by others.

Grief comes with ebbs and flows, and good and bad days and moments. I have a lot more good days after four years, or five and a half if I count the loss of my dad. There is more light in my life now, and less guilt, and I know that the people who love and care for me are glad to see me taking positive steps and genuinely enjoying life again. But there are also the shadows, and I am not someone who likes to, or can, put on a show of emotions. The good and bad moments are all okay. They make me human.

Walt Disney also said, “In bad times and in good, I have never lost my sense of zest for life.”  For me, that is the distinction between being positive or optimistic and being happy. Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, escaping for a while into a Disney frame of mind helps me to be positive. Trying to stay positive is my choice, but it doesn’t mean that I am always happy. I wonder if being optimistic in our nature, but for me, it’s always worth the effort to be optimistic. Still, I accept all the emotions and phases of grief and of life.

I think about Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. There was happiness and certainly sadness, fear and anger, but he always did try to be positive. It was an important lesson for me.

I do want to add that social workers and other mental health professionals were also available to Ben and to me. I was more willing than Ben to discuss my feelings, but when I did feel overwhelmed, I did see a therapist and speak to some of the people from Ben’s team, even after he was gone. It is always a good option if you are struggling with your emotions or need an objective listener.

Being positive allows me to follow this advice from Walt: “First, think. Second, believe. Third, dream. And finally, dare.”

Am I happy now? Well, I’m happier. I am pleased and even proud of myself for creating a truly wonderful summer for myself, where I felt more joy and fulfillment than I have since I lost Ben. While the anniversary of Ben’s passing on August 26 was still a very difficult day, the sadness is something I accept and embrace because it is all part of my life experience. This summer, I realized that I have found ways to do things that bring me joy while keeping Ben close, in my heart, and that feels right and gives me balance. I think this gives me more moments of complete happiness rather than brief happy distractions from going through motions in my life. These moments are the ones that keep me optimistic and propel me forward and allow me to keep dreaming and believe that I can make my dreams come true. I know that happiness is not everything, particularly when it is fleeting and superficial- I am not that much of a Pollyanna. I do aim for contentment and trying to maintain an optimistic outlook that I will achieve it. I’m floundering and anxious about my next steps in life, and I am shaken when something triggers a setback in grief, but even when I’m getting caught in the undertow of emotions, I think positively like Dory and dare to just keep swimming.

My buddy is Cruz. Summer 2019- finding happiness!

 

Dear Ben, It’s Been Four Years

Dear Ben,

Today marks four years since you left this world. Four years have passed and it is still such a difficult day. I thought that I would go to Central Park to look for the turtles but I have learned not to make a firm plan for the day because I don’t know how I will feel.

I woke up in tears, but got dressed and walked to the park. It was nice that the weather was on the cooler side. I looked down from Belvedere Castle and only saw one little turtle, which was disappointing There were only a few turtles by the Bethesda Fountain, but when I saw them poke their little heads up, it was still a comfort. I don’t know if there was a message in the lack of turtles. Is it that they think I don’t need them? Were they not expecting me because of this anniversary date? What do you think, Ben? I’m sure you were there.

I did bring a lot of change to toss into the fountain. I still like to make wishes. I made wishes for myself and for people I love. I always make the same wishes. Maybe some people would be disheartened, but I still believe they will come true.

On my way home I stopped at the “Imagine” mosaic by Strawberry Fields. Of course, as I strolled, I listened to Beatles music and Disney theme park music just for you. It was a rare time that there was not a line of tourists waiting to take their pictures. All I could think was to imagine a world free from ALS, a world free of all disease, really.

Imagine mosaic at Strawberry Fields, Central Park, NYC

I checked my watch all day remembering the exact moment that we all gathered around you, saw you separated from the vent, and that moment when you left. It was as you wished it, with love and music. We even said our vows. It’s so difficult to think of that day as the day we took our vows and also as the day we said good bye. I feel a combination of devastation and satisfaction that you had such peaceful farewell. It was a lot of work, but it gave me purpose and it touched my heart that everyone came together as they did, even people at the hospital who did not know us well but who quickly came to love you. Sometimes I wonder and worry if you are at peace with all of it. I hope you are.

I came home and sat with Tinker Bell. She didn’t know you, my dad or Disney. She doesn’t understand my sadness. She just watched me, seeming to know that I wasn’t myself. She’s a sweet girl but we don’t share that history. Maybe that’s a good thing. We are creating our own new history and memories. Still, it’s a lonely feeling. Rest assured that I show her your pictures on the throw and we both say good night to you each night.

I decided to watch Disney’s Tinker Bell’s Pixie Hollow Games today. It always made me chuckle to come home and find you watching it. No, you weren’t really so macho before you met me! I loved you for it!

When I plugged in a thumb drive to watch the film, the first video that came up was a video I made to accompany the song One Dance, which has much significance for me at this time of year. I miss being able to dance with you and I remember how that song was the shot of reality that we would never dance, you would never come home, and you really were soon going to leave. I had a good cry and then watched the Tinker Bell movie. It did make me smile to see my Tinker Bell cat sit in front of the television and watch Tinker Bell the fairy. I couldn’t get her picture because she kept watching me as I moved. I know that you think I’m like Boo chasing Sully when it comes to our cats!

I finally crawled into bed and put on one of your absolute favorites, Monsters, Inc., surrounded by your plush Sully toys and the Monsters, Inc. throw. There is a scene where Sully is looking at the one piece he kept from Boo’s door that completed the door and made it possible for him to go back and see her. That scene never fails to make me cry. If only there was that one piece that would allow me to open a door and see you again. Maybe scientists will soon find that piece that will solve the puzzle of ALS and put people back together.

Once again, I have been watching the videos I made and looking at our many photos. There are so many wonderful memories. Even the photos where the ALS progression was obvious are still filled with the joy on your face. We were very lucky to have each other, even in the lousy times.

I still love this video that I made for the first anniversary of this day. It still captures the love and good memories.

I want you to know that you are always with me in my heart. You are with me in my new adventures and I know that you send me messages.

I love you to infinity and beyond and I miss you every day. I hope you’ve been walking, running, eating and playing your music. It would be one of my dreams come true.

Love,

Abby

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!

Grief And The Things That Turn Me “Inside Out”

Sometimes, the hardest times are the ones when I remember the joy at the same time that I feel the sharp devastation and anger about loss. These are the times that turn me Inside Out. That’s what I have been experiencing this weekend. It’s exhausting.

Tomorrow will mark four years since Ben left this world. It’s almost as if I gear up all summer for this day. For the most part, I am proud, relieved and joyful that this has been a very good summer. In fact, it’s been the best I have had since he left. I was better able to balance being myself- my new self- with keeping Ben in my heart wherever I went. I know and accept that I can’t keep sadness in a corner, as Joy tried to do. The sadness and the joy were all part of our relationship, so they have to remain in my memory to keep them real.

I’ve noted it before, but there are triggers of setbacks. I don’t usually get angry at myself for crying. Anyone who knows me knows that I often default to crying. In Inside Out, Sadness says “Crying helps me slow down and obsess over the weight of life’s problems.”

This has been a weekend of tears and of letting myself feel the weight of grief, loneliness, alone-ness, anger, frustration, compassion and empathy. I spend a lot of time assessing myself and how well I am navigating my life. Maybe I need this time to slow down and let myself miss Ben and lament what our life could have been and what ALS took from us and is continuing to take from so many other individuals and families.

On Friday, I traveled up to the Berkshires to spend the day wandering around the town of Stockbridge prior to volunteer work on Saturday. I arranged to stay at the luxurious Red Lion Inn. It had been many years since I sat on the famous porch enjoying a glass of wine and I looked forward to being there. I entered my room and immediately thought of how Ben would have loved it. We loved to go to the quaint towns of Vermont, and the Inn and this room were reminiscent of our visits there. As I walked through the little library that led to the elevator, I thought of how Ben would have looked at the wall of books and commented that I would love a room like that, and I would have to agree. I took pictures as I know he would have done. In my room and throughout the building there are many beautiful antique desks. My aunt Ellie loved those desks, and she was the first person to take me to the Berkshires, so thoughts of her were also in my mind. She is the remaining relative to whom I was the closest, but with her Alzheimers disease, although I believe that I remain somewhere in her mind, in most ways, the aunt I knew and loved is gone.

The first shop I visited was Williams & Sons Country Store. Ben and I loved to go to country stores. I love the look and feel of them. We always found fun things at the Vermont Country Store, where we spent hours! It didn’t feel the same being without Ben. Nothing does, of course, but traveling to a place so much like places we would travel to felt so very sad. I wanted him to see the retro Cracker Jacks boxes, wanted to buy them just because he would have loved them. I did buy a little tiny turtle with a bobbing head. It reminded me of him and I knew he would have loved it, too.

I continued my stroll and spoke to lovely shopkeepers. I treated myself to some new clothing and fun jewelry. Retail therapy is always helpful to me, but I could not really shake that feeling of not belonging. I did have a glass of wine on the porch, but I felt like the only person by myself. I don’t always feel that way. Throughout my life I have traveled by myself, so I am often comfortable on my own. I think it was especially hard because Ben would have enjoyed it so much and it would have been a perfect getaway for us.

I was happy to meet Norman, the feline ambassador of the Red Lion Inn. He was very tolerant of my need to follow and pet him. I could hear Ben reminding me that I was like Boo in Monsters, Inc., who was always following Sully calling, “Kitty, kitty!” There was not a thing I did that didn’t make me think of and miss Ben. I think my last straw with myself was going to the pub where there was live music. I thought I would enjoy it, but it was something I really couldn’t do without Ben, so I left quickly. I found Norman, said goodnight, and went to my room to prepare for my volunteer work. This was filled with more reminders of Ben, since I was working with Hope Loves Company, a wonderful organization that serves children who have a family member with ALS.

Hope Loves Company runs 3-day camps in various locations across the country for families whose lives are affected by ALS. It’s a special opportunity for the whole family to get away and participate in an array of fun activities including boating, swimming, sports and crafts. Since all of the campers have ALS in common, they share an understanding of the experience that need not even be spoken. It’s a beautiful thing. During the spring, I had volunteered to do a scrapbooking workshop in New Jersey, and found it so rewarding that I asked to repeat the workshops at the camp in Camp Emerson in Hinsdale, MA. I am grateful that Hope Loves Company embraces my desire to volunteer and welcomed the idea of a scrapbooking project. Scrapbooking is a valuable tool for the children. Some bring photos from home and we also print out photos taken during camp. It is a way to capture and share memories. Older children can write more of a narrative if they wish. I went a little crazy shopping for all kinds of stickers, and it’s fun to see the kids select their favorites. It’s great to watch them interact with their parents as they look at photos together. I brought supplies for embossing, which lured even the coolest older kids. They had fun, were intrigued, and continued to bond with each other, which is such an important aspect of the camp. Maybe scrapbooking will be something that they will pursue. Maybe they will think about the activity as they look for another outlet for their self-expression.

Some of the scrapbooking stickers. Hope Loves Company camp at Camp Emerson, Hinsdale, MA

I enjoy meeting the families at the camp. For some, I suppose I am the sad reminder that, at least for now, ALS always wins the battle. But, I hope that they also see that I am here, I reshaped my life and I want to be supportive and do something positive to help in the battle against this disease.

The bus ride back to New York gave me five long hours to think about how much my life changed as a result of ALS. It certainly altered the course of my relationship with Ben. Although I had already been my dad’s caregiver, being Ben’s caregiver was a different experience. I don’t want to wash my hands of ALS. I want to support people who are impacted by the disease. It gave me joy to know that people in the Berkshires who recognized me from the NJ camp valued that I traveled to be with them and do a project with the children. Caregivers need to feel that kind of love and caring. For me, volunteering is a way to channel the negative experience into positive, into a way to help others. It’s something that I want to do with my life. I am thrilled that my blog helps others, but I want to expand that to more hands-on experiences, and the workshops allow me to do that. I guess that although the timing was difficult, and it turned me Inside Out, the volunteer work being on this particular weekend is a perfect tribute to tomorrow’s anniversary of Ben’s departure. I find comfort in knowing and affirming that our life, our relationship and our experience with ALS will be a part of my life and goals as I move forward.

These are excerpts from my own scrapbook, which I show to the kids so they can see my own experience with ALS and some ideas for scrapbooking.

             

A favorite page- Ben’s proposal at Walt Disney World!

Ohana Means Family- Who is Yours?

At this time of year, when I think about the upcoming anniversary of the day that Ben left this world, the notion of family comes strongly into focus and reminds me of how my definition of family has changed over the years. Although I love the film, Lilo and Stitch and its messages about family, love, acceptance and grief, I used to be troubled by its very famous quote, “Ohana means family. Family means nobody gets left behind-or forgotten.” Unfortunately, to a large degree, this has not been my experience and that makes me sad. For various reasons, and sometimes on the grounds of religion, there has been conflict in my family, and caregiving for my grandmother magnified our issues after my mom died. I learned the difficult lesson that, with rare exception, aside from my dad, I could not depend on the love of my family to provide the support that was needed. When I lost my dad, I lost the sense of family that I always thought of as my anchor. Family frequently let Ben down, too, and usually, it was not something that I could prevent, though I could support him through it. I was someone who always said that family was important- it was also what I was taught- but I didn’t feel the unbreakable bonds that I believed should exist. In addition to grief over the loss of my dad and Ben, I was grieving an overarching sense of family. As with all grief, I learned to co-exist with it despite reminders that still do make me feel sad and alone. However, reflection has lead to new perspective, and the Pollyanna in me has enabled me to expand my view of Ohana. (Click here for Pollyanna’s instructions on how to play The Glad Game.)

Ben and I were Ohana, with or without a marriage certificate. When Ben was diagnosed with ALS, we were not legally married but, of course, there was no question that I would be his caregiver. I had friends and relatives who told me to leave him because we were not married, which was absurd to me, because I loved him and Ohana means nobody gets left behind. His family members were certainly upset by his diagnosis, and there were many promises made of visiting and helping him. For the most part, those promises did not materialize into actual visits or even regular expressions of concern about how he was doing. He reached out to people and then they usually responded, with what became to him empty proclamations of love and caring, but they rarely took the initiative to reach out to him. It hurt him and frankly, angered and shocked me. Ben witnessed my devotion to my dad–he listened to our countless daily phone calls, watched me cook and shop for him, visit him on weekends, accompany him to his doctor visits, make follow-up calls to doctors and companies treating his cancer, just as I did for Ben. That was not happening for Ben with his family, with rare exception. There was, however, a lot of drama that was unnecessary, ridiculous, and selfish.

I am grateful that while Ben was in the hospital, one of his daughters frequently visited him. She was also with him at the end. She and I had a lot of time to talk in those weeks. We were close for a time, but that seems to have disintegrated, which is, for me, yet another disappointment in the experience of family and not really unexpected. I try to focus on the few nice surprises that occurred along the way, in the form of the few family members that expressed genuine caring and concern. We shared a love of Ben and respect for each other that continues today.

I found in caregiving that the people who are least involved have the most opinions and make the most judgments. I will admit that it was, at times, difficult to put aside the drama and just focus on Ben’s needs. Family came to the hospital and talked to him about his going home, getting his hopes up without asking any questions or having realistic information, but with plenty of judgment, especially of me. A friend of his visited and tried to dissuade him from separating from the vent on religious grounds after giving me a hard time about the issue. While visits can be a good time for a caregiver to take a break, I could not leave people alone with him because communication itself was challenging and discussions were often inappropriate and inaccurate. Mostly, they were not much of a comfort to him. This is not the way I want to define Ohana.

Just as I have found ways to reshape my life, I have also reshaped my perspective on family. As I have said before, I am eternally grateful for an incredible group of friends. Though they do have families of their own, these supportive and loving people embrace me and are my Ohana.

Summer is now become a time when I travel to visit some of my friends. I’m beginning to see it as the time I travel to see my family. A few weeks ago, I visited my friend Dorie, which came with wonderful revelations (click here for that post.) Last week, I visited my college friend Monica and her family in Chicago. She’s got two absolutely fabulous daughters, one of whom is my namesake! I love them all. We did fun things like go to a Cubs game (Cubs won!), visit a zoo and discuss the plans for our upcoming trip to Walt Disney World, which will be a tribute and celebration of Ben and my cat, Disney. For me, the best part of the visit was just sitting around on the sofa and talking or watching videos. It’s a beautiful thing to feel like I am part of the lives of these children and to feel like family, accepted, understood and even appreciated for all my quirkiness. I could continue to lament Ben’s and my lack of caring relatives, but I am no longer under that cloud of grief. Instead, I am so very proud and fortunate to be surrounded by people who have been more family than family.

Monica, my namesake, Abby and I getting splashed at the dolphin show at the Brookfield Zoo.

With Monica at Wrigley Field- Cubs win! August 2019

In caregiving, if the people whom you’ve defined as family are not supportive, of course it is hard not to dwell on it. As someone who is emotional, I won’t suggest that you ignore your feelings. So, what can you do? If you’re a primary caregiver, as long as you keep family informed, express needs and set boundaries for what and when you will dispense updates, you will have some level of control of, and grasp of, your caregiving responsibilities and scenario. Family members will have to live with their decisions and you will be able to plan accordingly. It doesn’t mean that you won’t be disappointed or saddened, but you will have a keener understanding of your circumstances and interpersonal relations. This is likely to allow you to detach a little bit as family interactions happen, or don’t, drawing attention to the positive aspects of visits (or not) on your caree.

For your own self-expression and reflection, things you might consider are: keeping a journal, seeing a therapist, venting to friends who are good listeners, attending a support group or, if it is difficult to arrange to leave home, there are online and phone support groups. But, please don’t lose focus on the important, loving and invaluable work that you are doing for your caree.  As I have sorted through the many memories surrounding Ben’s care, I have learned to let go of (or at least work hard to fight) anger and resentment, and I have begun to recall incidents more as a matter of fact and sequence than with emotional attachment to the people who let us down. I can look back and feel grateful that I was able to show Ben so much love, though I also wish with all my heart that we never had to go through the experience.

If you are a family member of a caree, please be honest with yourself about the relationship that you have had with this person and the caregiver. Be realistic about what you can and are willing to do. If you want to help, ask questions about how you can help and also before judging. Remember that this is not about anyone but the caree, and that the primary caregiver does have the greatest perspective, knowledge of and responsibility to the caree.

As you move through caregiving, grief, and life, it is so important to have a clear understanding of the people in your life who are reliable and truly devoted. This does not necessarily mean cutting people off from your life, but rather knowing who will be there to have your back. Lip service is irrelevant. Ben and I learned that we could not rely on his family. Fortunately, we did have friends who stepped in and helped without needing to be asked. I have indulged in and expanded my family of friends. Maybe they are not the traditional definition of family. Yet, they are. Like Stitch, I am grateful to have them in my life. Know who your Ohana really is because they will not leave you behind. That is truly something to celebrate.

Stitch gave Ben some extra love! July 2014

Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.