Adding love and light to my home after experiencing ALS loss
A Navy sponsor program brought unexpected joy and companionship
When I was growing up, many of my neighbors participated in the U.S. Naval Academy Sponsor Program, as we lived just a few miles from the school’s campus in Annapolis, Maryland. Under the program, local families “adopted” midshipmen, offering a home away from home to the students, who could come over to watch television, do laundry, and enjoy some time away from the pressures of the respected but rigorous service academy. Often these sponsor relationships turned into lifelong friendships, with sponsor parents and kids remaining close through marriages, children, and other life changes.
When my late husband, Jeff, and I relocated back to my hometown just before his ALS diagnosis in 2018, I was eager for us to become a sponsor family. I pictured boating and barbecues, late-night conversations and rides to the airport, the typical fare of sponsorship. Jeff had studied at the Marine Corps War College in Quantico, Virginia, and we both supported the military. It seemed like a natural fit for us to embrace the local Navy community by adopting a few “mids,” as they’re informally called.
But ALS had other plans for us. Jeff’s symptoms, which had started the previous autumn with an annoying but nonpainful foot drop, advanced quickly the summer we moved to Annapolis. We both realized that something serious was going on, and because ALS was the probable diagnosis, I abandoned our plans to sponsor a “mid.” The next 19 months I was consumed with caregiving, embracing every possible moment of joy, and making all of the memories that we could.
A leap into the unknown
A few months after Jeff died in 2020, my lifelong friend Martha reminded me that the Naval Academy was looking for sponsor families. She’d been a sponsor mom for decades, and the way she loved her sponsor kids had always moved me. Still, I hesitated. Was it fair to bring young people into a house where I was still reeling from loss? Did I have anything to offer them? Would my obvious grief bring them down? Unsure, I submitted my application and waited.
A few weeks later, I was matched with two young women who could not have been more different from each other, or more interesting as individuals. As we got to know one another during those first few months, we settled into routines that made us a little family: ordering takeout, talking on the couch for hours, and hosting friends and fellow midshipmen. From them, I learned about new music and culture, Navy traditions, and laughing again.
The next year, I adopted a classmate and friend of theirs. When all three of them were over — often on weekends and with other midshipmen in tow — I was happily outnumbered in my own home, which once again brimmed with laughter and levity. There was cooking and boating and dinners outdoors. We developed our own traditions and favorite restaurants. We enjoyed the numerous inside jokes that come with familiarity and friendship. I got to know their parents and families.
I shared with all of them, of course, about Jeff and ALS, and about loss. How could I not? Memories of him are all over my home and my heart. Instead of feeling that I was being unfair to them, I realized that what Jeff and I had experienced with ALS made me a more compassionate friend and an empathetic listener. What I’d been through as a caregiver had made me more attuned to others’ feelings and needs. In turn, I learned that they, too, had important things on their minds, and I hope that my own openness and vulnerability helped them see that I could be trusted to listen.
They graduated last year and were commissioned as Navy officers. I was honored that they chose to live here with me last summer while awaiting their service assignments. Two of them are in other states now completing additional training. The other is still nearby, but leaves this week for flight training. We’re having one last dinner together before he ships out.
When, as always, they thank me for hosting them, I say, “No, thank you.” Through these friendships, I learned a few things. Taking a leap into the unknown and out of my comfort zone in those early days of loss brought richness and love into my life. Opening my home to strangers helped me build a new family that I hope to know forever. And it’s never wrong to seek — and offer — connection in the most transitional times of our lives.
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About the Author
Val Coleman
Juliet, thank you for sharing your story about adding love and light into your home after experiencing ALS loss. I lost my husband after three years with ALS. I was his primary caregiver. I struggled with the thought of just changing anything in my home after my husband passed away. It had become some sterile. BUT my family encouraged me to make it my home, where I can be comfortable and my family and friends feel comfortable.
Sincerely,
Val
Dolly McIlvaine
What a lovely story. I’m sorry for your loss, but thank you for sharing how you have turned your sorrow into joy.
buzz alpert
I read Juliet's wonderful letter. It warmed my heart, but just for her. My wife, Jan Meyers and I were married for 45 years. It was a 2nd marriage for both of us. Her husband was exceptionally cruel to her. She had a hard time trusting men after that. I showed her what kindness was like and she finally came to trust me and I loved her so much. She told me that she realized I would make a good home for us and always be her side. She was very talented and said a child she wanted tools, not dolls. That proved itself one cold winter night when our furnace went down. As an avocation we saved sick and injured birds with a federal and state license. Our HVAC guy came out, but was not happy about it and furnace went bad again in 3 months and the weather was bitter cold. He refused to come even though I had a service contract with him. Jan said "Forget him, I'll fix it." I asked what did she know about furnaces and she told she watched him the first time he fixed it. She took it apart, cleaned it, reassembled it hit switch. It hummed beautifully and it was a beautiful song to my ears. Jan was the love of my life and she died 1-2-24 in my arms. I put something in the recycling bin and came right back in the house when her daughter in law said she was passing. I sat on her bed and grasped her left arm. She could talk nor control her movements. Her head wobbled, but she was sitting up and very close to me and looked at me. Her eyes were not focused, but suddenly they were focused and I said, "I love you, Sweetheart." She took shallow breaths and died in my arms. I am haunted by that moment. I sleep only a few hours and sometimes I go 2 days without sleeping. As a former Marine I get counseling at a veteran's facility, but I don't seem to be better. My closest buddies live in other cities and loneliness has overtaken me. However, I am fortunate to have my 100 pound chocolate Labrador, Zelda at my side. She worshipped Jan she sniffed right after she died and I have asked her several time to go to her Mommy and previously she would do it. But alas, she no longer responds to those words and has gotten closer to me. Until Jan got so ill I did 5o push-ups, 80 sit-ups, etc. every day, but 2 hours of sleep on a good night made it impossible to continue. 3 young women have approached my dog and I and expressed interest in spending time with me, but I am 86 and not an old fool and thus spend most of my time alone. Many nights I heard Jan calling me and once I sat up in bed and saw her standing a few feet away and then she disappeared. I could not go back to sleep. I hope time will heal my broken heart. I wrote the below poem for her & was going to read it to her the day she died. I curse myself for not showing it to her before she died. I close with tears in my eyes.
Forever by buzz alpert 1-6-2024
Yesterday and today are forever
You, Jan, are my lifelong love, forever
Our years together spoke not of strife, but how strife
Could not part us. It would be forever
Time has dimmed my physical passions for you but the
Years have changed the goal of that passion.
The physical moved slowly into the eternal and that love
Withstood the waves of changes in life, most small, but
Some huge that appeared they would crush us, but alas,
They did not.
We changed as gravity dragged our bodies toward the
Ground, but inside we were the same, forever.
And now the bitter taste of life gone wrong chokes me.
I reached across the seas and scanned my great country
With all its vision and invention to find help for the love
Of my life, but none was to be found.
And now as she slips from my hands the weakness of
Failure overwhelms me. Her pending loss haunts me as
I lay in bed staring through the night into nothing, unable
To swallow, the fingers of loneliness grip my throat and
Bring tidal waves of tears to my eyes. While I scream inside my brain
Will this loss have any meaning other than the darkness of the night
As life ebbed from her weakened body I told her, “I love you Sweetheart”
And she nodded, ever so slight and took her last breaths. Resting my in
My arms she crossed to the other side and everything else disappeared but
Her face touching mine for that final kiss of love, Forever.
Liz
Julie is one of the most kind, sweet, beautiful,and generous persons I have met. She helped to ease our minds while our “baby” was in a new environment far enough away from home. It meant the world to us and we were lucky enough to come meet and stay with and get to know her. Being able to see where our son was able to escape to and feel like “family” when possible was nice. We will forever be grateful to Julie. She has become like family to us!♥️
Andy Melton
Thank you for sharing this. I’m a retired submarine officer so the Navy was/is my life. As my wife progresses through her ALS journey, I ponder what the future holds. You reminded me that as we embrace living our best lives, part of that is the opportunity to be involved with other people.
Keith Andersin
Thank you so much for sharing your story. It encouraged me as I increasingly take on more care of my wife of 52 years. We’re ’savoring each moment’ and seeking to encourage others who are facing their own life crises. Breathe in gratitude. Breathe out kindness. Thank you again.