Aunt Eleanor with our Standard Schnauzer, Dulcie. Ellie was never a huge dog lover until she met Dulcie.
Today is my aunt Eleanor’s 91st birthday. I visited her in the nursing home. She has Alzheimer’s disease that has progressed to the point where, for the most part, she does not speak coherently, though she does seem to understand much of what is said to her. Her eyes do light up a bit when she sees me, and she smiles sometimes when I talk to her. I believe that her memories of me are floating somewhere in her mind, or I let myself believe that to cope with my profound sadness. A perfect moment was when I handed her the Mickey Mouse birthday card and asked if she remembered him- she smiled. Disney magic! Pixie dust!
We were so close and she has influenced much of who I am. I look like her and have many of her mannerisms. Ellie was the person who took me to the theater and ballet and inspired my love of the arts and of travel. Ellie took me to book signings when I was young, and I was always thrilled to meet famous and wildly talented people. Now, attending book signings is one of my favorite activities. For a long time, after her Alzheimer’s advanced and she could no longer accompany me, I got books signed for her. We looked at the books together, which she enjoyed despite the changes in her memory, and I enjoyed because it let me step back in time and relate to her in a way that transcended the Alzheimer’s. I remember how excited I was to bring her a children’s book written by Wendy Wasserstein. It was about a girl whose aunt takes her to her first musical. When I handed Wendy the book to sign, I told her that my aunt Ellie was like her book’s Aunt Pamela. She smiled and inscribed the book, “To Eleanor, who IS Aunt Pamela.” I am tremendously proud of my collection of signed books and CDs, and proud to honor the relationship that I have maintained with my aunt.
I tried to maintain our favorite activities and took her to the theater even as her Alzheimer’s progressed. I once took her to a Yiddish theater production where they gave out pickles at intermission. It seems that she immediately forgot the play, but she told people she had pickles and it was really fun. I think she pictured herself back in Brooklyn. I felt like that was still a good memory for her, and I was glad that in the moment, she enjoyed sitting through the show. After spending another day at the theater with her, I took her home, and when I got home there was a panicked phone message from her asking if we were supposed to see each other that day. She had completely forgotten the day. I could only reason with myself that at least while we were at the theater she enjoyed watching the play. I stopped taking her when she seemed to not have as much fun because she was easily confused and disoriented. It would have been selfish to keep trying to keep things the same when things had changed and I had to accept it.
Ellie was the remaining relative to whom I was closest and with whom I spent a lot of time. Although she is still physically here, our relationship is not the same. It hurts to see her and her largely diminished quality of life, though I try to be comforted by the moments that I make her laugh. It feels somehow disrespectful, but I see that in many ways I am grieving her loss.
She was a Spanish teacher and although my career has been varied, I have been walking in her footsteps for the past fifteen years. Today, I can’t help but think of the beautiful song Remember Me from Disney’s Coco. She would have loved it. I’ve put the song clip and lyrics here. The film dealt so beautifully with aging and loss, conveying that our loved ones are always in our hearts. With that in mind, I will spend this evening trying not to dwell on the Ellie I saw today and instead think of all of the wonderful memories that we shared. I hope that somewhere in her mind during her visit, she had a happy birthday and that she felt loved.
The lyrics from the song “Remember Me” were very emotional.
Remember Me Lyrics from Coco
Written by Kristen Anderson-Lopez and Robert Lopez
Performed by Miguel, featuring Natalia Lafourcade
Remember me
Though I have to say goodbye
Remember me
Don’t let it make you cry
For even if I’m far away I hold you in my heart
I sing a secret song to you each night we are apart
Remember me
Though I have to travel far
Remember me
Each time you hear a sad guitar
Know that I’m with you the only way that I can be
Until you’re in my arms again
Remember me
Where Do I Go From Here?
Written by Marty Panzer and Larry Grossman
Performed by Judy Kuhn as Pocahontas
The earth is cold The fields are bare The branches fold against the wind that’s everywhere
The birds move on So they survive When snow so deep The bears all sleep to keep themselves alive
They do what they must for now And trust in their plan If I trust in mine, somehow I might find who I am
But where do I go from here? So many voices ringing in my ear Which is the voice that I was meant to hear? How will I know? Where do I go from here?
My world has changed and so have I I’ve learned to choose And even learned to say goodbye
The path ahead’s so hard to see It winds and bends but where it ends Depends on only me
In my heart I don’t feel part of so much I’ve known Now it seems it’s time to start A new life on my own
But where do I go from here? So many voices ringing in my ear Which is the voice that I was meant to hear? How will I know? Where do I go from here?
May was a bit rough for me. May is ALS Awareness Month. Milestone dates and occasions are always significant. Even though it is not a milestone in Ben’s personal journey with ALS, it is an important time for me. I want and need to participate in the month to raise awareness of ALS, but I never feel like I really make a difference. I’ve been questioning so much about where I am and where I should be in my life. I feel like the sharpest pangs of grief have begun to subside and I have wanted to think that things have been steadily improving. And they have been improving in many ways. Unfortunately, the questions haven’t really ended, they are just different. Now, I question what I should be doing in terms of moving forward, in terms of my relationship with ALS, in terms of grief. Where do I go from here?
There is so much that resonates in this song. Since Ben “left,” as he referred to dying, I have grappled with where to go with my life. I stopped questioning how I survive after I lost my mom, which was my first major loss and was especially earth-shattering because we were so close and it was sudden. The first year, I went through motions. Just like animals Pocahontas described how the bears instinctively know what they have to do from season to season, I just kept going through motions, sometimes instinctively, sometimes lead by others, but never really thinking. Now, it is nearly four years since I lost Ben, and although I have gotten back on track and know that I have much to be grateful for, the setbacks really throw me and I am frequently anxious about my plan for the future and I rely on a wealth of wonderful memories to sustain me. When it comes to the future, there are people who are fine to say that they put things “in God’s hands.” I have never been one of those people, despite being a person who does have faith.
I have done a good job of reclaiming the things I always loved to do. I have resumed active theater-going, socializing and I even travel a bit. Still, there is an anxiety. I feel like I don’t have a strategy for my life. There’s a lot of worry and emotional analysis. There is also judgment. I have had to deal with the judgment of others, to my face or behind my back, but I also judge myself. Am I balancing past, present and future? How do I effectively help others? How do I best help people with ALS and their caregivers? Does that keep me in the past? How do I maintain my connection to the past and to Ben’s journey with ALS while forming a new life and hopefully finding love again? Will I find love again or will I be alone? As much as I would like to find a new relationship and have that kind of love, I don’t seem to have found a good strategy for getting there. Each night, I look at my photo of Ben that is my laptop background, I say good night to him, and wonder if I will ever find someone who “gets” me the way that he did. He doesn’t have to be a Disney prince, either. No matter how good I feel about the strides I’ve made, and no matter how many happy days I have, there is an uneasiness that keeps me from feeling contentment.
While some people think I should put more distance from the past and focus more intently on my vision for the future, being by Ben’s side as he bravely battled ALS changed me. Just as my dad’s cancer began to progress and Ben was diagnosed with ALS, I was launching a pet souvenir business, Pets en Voyage. I slowly put it aside because I couldn’t juggle full-time work, full-time caregiving and building a business. The business was a dream come true for me, and one Ben and my dad, the consummate dog lover, were so excited about. I always said that I would come back to it, but whenever I begin to revisit it, I find it a painful reminder of those days of illness and chaos. I am not letting go of it, but cannot seem to fully embrace it again, either. Not yet.
I was profoundly influenced by my role as a caregiver, and when I lost my dad and Ben, and I lost that role, I did lose a big part of myself. I feel most comfortable when I find ways to tap into that side of myself. This blog has been one way to sort out my experiences and spread the word about caregiving and ALS. I have been touched by the connections I have made and comments I have had from cALS (Caregivers of people with ALS) and pALS (people with ALS) in response to my posts. I was inspired by earn my Certification as a Caregiving Consultant but have not yet figured out how to use it more effectively, though I participate in various online ALS and grief support groups to lend an ear, share my experiences and persistent questions, and offer ideas to those currently struggling with caregiving.
When I was a caregiver, my role was clear: the goal was to keep Ben comfortable and get him the help he needed. There might have been twists and turns, and a lot of curve balls, but I had to come up with plans, and then back-up plans! Now, I’m just not sure of where to go and what to do for myself. What I know, and what I learned as a caregiver, is that I am a born teacher and caregiver. I also saw that I could be a strong advocate for my dad and Ben, but I did not seem to know how to use those skills for myself.
As a teacher and someone who spent more than 30 years in the field of arts and education, I love kids and could not help thinking about how difficult it must be for children to watch a parent or other family member navigate ALS and take on caregiving responsibilities. I have felt that my background could be useful to children who are affected by ALS in their families. A while back, I was able to collaborate with my local ALS chapter to conduct a small workshop for kids who had a parent with ALS. We did crafts, ate pizza and ice cream and talked. Click here to read my post about that experience.
Earlier this month, I had the supreme privilege of working with Hope Loves Company, an organization dedicated to supporting children whose families have been affected by ALS (click here to visit their web site). Hope Loves Company runs camps for children and their families- it’s a special opportunity to get away, participate in all kinds of activities, from hiking to fishing to music and crafts. Also, it is an opportunity to be surrounded by other people who share, understand and can commiserate about the experience of ALS and its impact on our lives. I was a facilitator of a workshop where the children made scrapbooks- some brought photos from home and we also printed photos from their activities during camp. I believe that going through photos can be a very valuable process- it’s a time to relive memories and remember our important relationships- and I was happy to hear the stories that the children shared with me. It was fun and meaningful, and it felt like I was exactly where I should be. I look forward to continuing my volunteer work with this wonderful organization.
It feels good to me to work children in this way. I want and need to follow a path that lets me discover ways to reach out to young people affected by this disease, but also to young caregivers in general. I’m just not sure exactly where to go or how to get there.
Now it seems it’s time to start
A new life on my own
But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?
I have lots of ideas, but I’m a worrier by nature, so I tend to identify the obstacles before I see a clear path. While it’s probably not terribly realistic that I will resolve everything during my summer vacation from teaching, it’s my plan to address ways to expand my work and relationship to ALS. Summer is always strange because it marks another year that Ben spent in the hospital and then left the world, so it’s good to have a focus. It’s especially meaningful to make that focus something that relates to him. Yes, I keep the dating thing on my mind, too, but that kind of strategizing seems to be more daunting to me.
I do welcome ideas and brainstorming, so please feel free to comment or email if there is a project you’d like to consider or implement.
Last night, I watched my recording of an episode of The Aquarium (it’s on the Animal Planet channel). I was so excited about this series because it features the Georgia Aquarium, a very special place that I visited for the first time last summer. In fact, it is so special that I am returning in August.
Penguins were featured in this particular episode. Ben and I loved penguins and last summer, I was fortunate to be able to meet two of them during encounter programs at the Georgia Aquarium. It was a bit unnerving for me because doing a penguin encounter was something I had tried to arrange for Ben and me, but the weather was terrible when we were supposed to go and Ben was afraid to venture outside. Sadly, we never had another opportunity, since he passed away about six months later. It felt simultaneously right and wrong to do an encounter without him. I felt like I did it for us and participated through his eyes. Maybe it’s wishful thinking, maybe it’s justification, but it gives me peace and lets me feel him at times when his absence is suffocating.
In this episode, a baby penguin was born, needing help to hatch and then he was not thriving. They did a lot to help this sweet baby and ended up intubating him. Ultimately, they euthanized him. I was already in tears seeing the tube in his mouth- so tiny to go through this. It summoned memories of when Ben was intubated, which was terribly frightening. Loving penguins as we did, I know that watching this scene also would have devastated Ben. I was hoping for a happy ending and it didn’t happen. The Aquarium wants to present an accurate portrayal of what goes on. I watched the staff cry as they watched the baby leave the world and I sat on my sofa bawling as I have not done in a while. Even today, I have not been able to compose myself. I am back in the saddest and most frightening of memories.
I know that I cry easily and I accept that about myself. I love animals, so seeing a little baby born and then not able to survive is heartbreaking. Having had to put Disney to sleep just a few months ago, and my cat, Tiffany, ten years before that, I know the heartbreak of letting go despite knowing that it is the best thing for your furbaby. Maybe because this was a penguin- the animal Ben and I made ours- made it that much worse. I often talk to Ben, especially if I feel his presence, and I kept looking at his chair hoping for him to console me and knowing that he would feel and share my pain. That may not seem logical or reasonable, but it works for me. Sometimes.
I certainly think about our days in the hospital, but I haven’t relived for a while the intense fear of when Ben had to be intubated. It was done in such an emergency that they performed the procedure in his hospital room rather than bringing him to an operating room. The frenzy was scary. I busied myself by updating his family, but a texting drama was begun by a couple of his family members who were never present but seemed to think that judging me compensated for their lack of attentiveness. Although I refused to participate, I can’t say that it didn’t weigh on me when I still felt that it was responsible to text updates. After the procedure, Ben had to go to the ICU, which I was told was protocol but was still terrifying. Unlike the penguin, with ALS, we knew that Ben was going to die, but these were crises and where death loomed over us, now it was like a flashing neon sign. Listening to the Aquarium veterinarian talk about euthanasia brought back all of the memories of Ben ultimately deciding that he was miserable on the ventilator and choosing to leave this world. So, here I was on my sofa crying for the penguin and for Ben, remembering not the music and the love that surrounded Ben on the day that he left, which I try to keep at the top of my memories, but instead, reliving all of the fear and devastation of that time.
I am drained. I was unprepared for the setback. I looked forward to seeing this episode with my little friends from the Georgia Aquarium. I was happy to recognize some of the staff members who led the encounters I did with the penguins, dolphins and sea otters. Now, I am back among the worst memories of Ben’s battle with ALS and the tragic choices that he had to make. August will mark four years since Ben left. Some people would say that I should not react as emotionally. Maybe I shouldn’t. But I did. I am always wary of when I will have a setback. This was a particularly bad setback, but I’ve learned that I will bounce back. It’s grief. On a daily basis, I’m actually doing fine, but that doesn’t erase my experience and the loss. So, I accept that just as I smile when I think of the wonderful and loving memories- even those during Ben’s ALS days- I will cry when reminded of the pain and loss. It is unnerving and exhausting, but as Baymax so astutely says, “It is alright to cry. Crying is a natural response to pain.” If I want to put a positive spin on it, it’s because I was fortunate to know and give so much love and caring that I feel the pain so deeply. Grief is never easy or predictable.
Today is Memorial Day, and on this day I honor my dad, Jacob, who left this world on February 2014. I salute my dad and all the men and women who have served this country. Of course, Memorial Day is to honor those who died in service, and mercifully, my dad did not. However, he often reflected on friends he lost during the Korean War, and this day was important to him, as it should be to all of us in this country. In keeping with the name of this holiday, I will use this post to recall memories that my dad shared with me that are related to his own experiences as a child during WW2 and then in the USMC.
My dad was a boy in Brooklyn during WW2 and loved to tell stories about the neighborhood. This was a picture he had of my grandfather and neighbors. When I look at it, I can hear my dad’s cute giggle as he told this story: There were concerns that we would be bombed and these gentlemen were the team that was tasked with extinguishing fires in the case of a bombing. My dad never stopped laughing as he pointed out the little bucket, which would need constant refilling, and the short hose that would not reach very far, clearly not the most effective method for dealing with the situation!
Brooklyn, sometime during WW2. My grandfather is the second from the right. Look at how proud and serious the men are!
My dad knew so much about WW2 history. He had tons of books and I loved adding to his library. I still miss my visits to bookshops to see what the new releases were, calling him to read book jackets to see what sparked his interest, and being so proud when I found something new and intriguing.
Daddy was such a proud Marine and a real patriot. It upset him that over the years he saw less and less flags flown around our neighborhood. He wore his USMC cap so proudly and loved to run into other veterans and share stories. But I was his Private Benjamin. The first time I drove him to the VA Hospital out in Northport, Long Island he just shook his head when I clapped and waved as the guard at the gate saluted us when I flashed Daddy’s VA card. Daddy saluted, shook his head and laughed. Although he was not an observant Jew, his Marine Corps experience, where he was one of 3 Jews, gave him a sense of pride in his religion and he did not tolerate any discrimination, gaining the nickname of “that crazy Jew” because he would fight anyone who even looked like they were going to say anything derogatory. He trained down south during the days of segregation, and he remembered with sadness and contempt the way he was not allowed to sit on the bus with his African American USMC buddies and how disgusted he was by those attitudes, which were so different from up here in the north.
Daddy at Mitchel Air Field on Long Island.
The Cradle of Aviation Museum and events at Mitchel Field were favorite destinations for my dad. Since he was trained as a pilot, he loved to see the old planes. I went there with him a few times and although I cannot say I shared his enthusiasm, I loved to see him so happy. And, I felt a lot of pride to see him meeting other veterans and sharing stories of their time in service. I proudly display in my apartment his model of the F7, the plane he flew, along with one of his USMC caps.
In more recent years, Daddy knew the young guys in his neighborhood who returned from deployment. Some of them had trouble getting back into life and my dad was concerned about them. I was always surprised by how much he knew about them, but he took the time to really talk to them. We read a lot about the effects of multiple and extended deployments. My dad understood it well and he felt for these “kids,” as he called them. I learned so much about compassion from my dad.
Daddy loved when people spotted him in his USMC cap and said, “thank you for your service.” He said it to any veterans that he met, too. I had the privilege of meeting many veterans when he was at the VA hospice in Northport. They were proud. They had many stories. And they were still fighting for their lives, in a different way. They were patriots and they inspired me.
You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!
I’ve been missing my dad more than usual, even though I can honestly say that never has a day gone by that I don’t think of and miss him. I miss his laugh, his kindness, his advice, his sense of humor, and his history lessons. I wish that I could talk to him about what seem to be daily crises in our country’s leadership, but I’m glad he’s not witnessing the current events in this country. He’d be devastated and frightened for my future and the future of the next generations, and he would also be reminding me that history does indeed repeat itself.
Memorial Day is a special time to pay tribute to those who lost their lives in service to this country, to make things better for us. It saddens me to feel that our current administration does not really care about making things better for its citizens. But, maybe that’s why it’s even more important to remember those people who did care, to honor and support those people who do, and to reaffirm our love for this country and determination to honor our founding principles.
Semper fi, Daddy! I love and miss you!
A Disney note:
Since I do make Disney connections in most of my posts, I would like to recommend:
Disney During World War II: How the Walt Disney Studio Contributed to Victory in the War is a fascinating coffee table book published in 2014. Although it was published after my dad passed away, I bought the book because it reminded me of my dad and how much we embraced each other’s lives.
Walt Disney Treasures: On the Front Lines, is a 2-disc DVD set, released in 2003, which highlights Disney’s contribution to American military participation in World War II. This collection contains 32 short films used for training, propaganda and education. This set also contains the feature-length Victory Through Air Power, a propaganda film not released since its 1943 theatrical debut. My dad was always amused at my ability to find this connection between my love for Disney and his love for WW2!
When I think of Goofy, I can’t help but remember all of the fun times that Ben and I had with him. Of course, he’s always a lot of fun- he’s Goofy! But, after Ben’s ALS diagnosis, we learned that there is a whole lot more to his Disney magic than silliness. Goofy was a big dose of comfort to Ben during our last visit to Walt Disney World.
Meeting our Disney buddies was always fun, especially for me, but after Ben’s ALS diagnosis, seeing them, especially Mickey Mouse, became very emotional. Although Ben traveled around the parks in a scooter and then an electric wheelchair, while he still had strength in his legs, he stood up for photos with Mickey, Minnie, Pluto, Goofy and Buzz Lightyear. As his legs weakened, he still tried to stand for Mickey and Minnie. A couple of times, Mickey even helped me to help Ben out of the chair and he escorted Ben to the photo spot. During our last trip, in 2014, when Ben would not stand at all, I knew he had truly weakened. Living with him, you might think that it would be more obvious to me that he had deteriorated, and of course you would be correct. However, Ben admitting that he could not stand to meet Mickey was symbolic of his surrendering to ALS and that our life was never going to be the same. I think that Ben was overwhelmed and his tears were a kind of rare plea for help. For magic. It was an overwhelmingly sad and emotional meet and greet, with Ben and me in tears. Mickey had hugs for both of us and I asked him for some magic. With a diagnosis like ALS, you just want to believe in that magic.
It was actually Goofy who picked up our emotional pieces. He saw me trying to comfort Ben and he knelt down next to Ben, being his Goofy self, and soon enough, Ben was laughing. He hugged Ben, he danced around, and simply didn’t stop “goofing around” until Ben was back in the magic. Goofy knew just what to do and there was nothing Goofy about that! That’s Disney magic.
Thank you and Happy Birthday, Goofy! You are 87 years young, and a forever friend.
