ALS Caregivers and Beyond

In this episode of ALS Caregivers & Beyond, co-hosts Mary Ward and Lara Garey welcome their second guest, Lisa Musselman — a fellow caregiver, advocate, and newly selected Elizabeth Dole Foundation Fellow.

Lisa shares her 14-year journey caring for her husband Andy, an Air Force veteran living with ALS and FTD, and reflects on how caregiving has unexpectedly awakened her passion for advocacy. Together, Mary, Lara, and Lisa dive into:

• The challenges of navigating VA systems and the fight for equitable care across the country.
• The gifts and blessings that can emerge in the midst of ALS — from lifelong friendships to unexpected community support.
• Balancing autonomy and boundaries in caregiving, and the toll of making hard decisions while honoring a loved one’s wishes.
• The power of advocacy through the Elizabeth Dole Foundation, IMALS, and grassroots caregiver voices.
• Why caregivers matter not only as care partners, but as people with their own health, dreams, and needs.

The conversation is raw, hopeful, and deeply real — reminding caregivers everywhere that while ALS may change everything, it doesn’t have to take everything.

• Elizabeth Dole Foundation: www.elizabethdolefoundation.org
• I AM ALS / Synapticure (for non-veteran ALS families): www.iamals.org
• For veteran caregivers navigating VA systems, contact Lara Garey at [email protected]

👉 If you’re a caregiver, we’d love to hear from you: What boundaries have you set in your caregiving journey? What blessings have surprised you along the way? Share your reflections with us on social media or by email.

Lara Garey: [email protected] or [email protected]

Mary Ward: [email protected]

In this heartfelt conversation, Lara and Mary return after a year-long pause to reflect on the transitional journeys they’ve each faced as ALS caregivers. Both of their husbands, coincidentally named Tom, served as veterans and live(d) with ALS—Tom Garey, who passed more than three years ago, and Tom Ward, who continues to fight the disease.

Lara shares how this past year has brought her moments of joy, both in everyday life and in unexpected ways, offering hope and resilience in life after caregiving. Mary opens up about the increasing challenges of being the sole caregiver for her husband and how the addition of skilled care a few afternoons a week has begun to transform her days. With this support, she is rediscovering pieces of herself, reclaiming her own identity.

Together, Lara and Mary speak candidly about grief, growth, and the relief that comes when help is finally on the way. Their conversation is a poignant reminder that caregivers are not alone, and that seeking support can create space for both healing and renewal.

Caregiver Resources

ALS-Specific Resources:

• The ALS Association – Support, advocacy, and caregiver resources.
• Team Gleason – Innovative technology and support for those living with ALS.
• I AM ALS - Advocacy, peer support, and resources for ALS families.
• Les Turner ALS Foundation - Education, support groups, and direct care services.

General Caregiver Resources:

• Family Caregiver Alliance - Resources, education, and advocacy for caregivers of all backgrounds.
• National Alliance for Caregiving – Research and resources for family caregivers.
• Caregiver Action Network – Free education, peer support, and tools for caregivers nationwide.
• Elizabeth Dole Foundation - Focused on supporting military and veteran caregivers.

Lara and Mary welcome listeners to reach out to them with feedback, requests for topics to be discussed on the podcast, and to get a guest!

Lara: [email protected]

Mary: [email protected]

In this unforgettable episode, we broke new ground by podcasting face-to-face—no Zoom required. Lara and her special friend, Grant Trevarthen, visited Tom and me for a few days, and we had the privilege of having Grant as our very first guest.

Lara and Grant, both living in the ALS Beyond, shared their experiences and insights with deep sincerity. Being in their presence was truly an honor. I've recorded many episodes across this podcast and "This Caregiver Life," but I have to say, this one touched my heart the most. It stands out as my absolute favorite.

Much love, Lara & Mar

P.S. We’d love to hear from you! Drop us a note and let us know how you’re doing.

[email protected]

[email protected]

Check out Lara's blog: Tom's Troops

Check out Mar's Etsy shop: Cottage at Marehaven

#ALScaregivers #ALS #ALSwidows #ALSwidowers #ALSsurvivors #Caregivers #Terminaldisease

In this episode, we’re embracing new horizons. One of us has been on exciting adventures, exploring both nationally and globally, while the other has been discovering the beauty and challenges of staying local. Join us as we share the lessons we’ve learned and reflect on how our lives are evolving.

To our beloved ALS Caregiver & Beyond community, thank you for being with us on this journey. Your experiences and stories inspire us every day.

Much love, Lara & Mar

P.S. We’d love to hear from you! Drop us a note and let us know how you’re doing.

[email protected]

[email protected]

Check out Lara's blog: Tom's Troops

Check out Mar's Etsy shop: Cottage at Marehaven

#ALScaregivers #ALS #ALSwidows #ALSwidowers #ALSsurvivors #Caregivers #Terminaldisease

The first quarter of the year is wrapping up and it's been a whirlwind for both of us. We share where we are in this caregiver life (Mar) and where we are in the Beyond (Lara). There has been lots of growth for both of us. As always there isn't a minute of our conversations that we do not enjoy thoroughly. No one sees us more clearly than those who know ALS.

We talked about Mel Robbin's podcast episode: The #1 Menopause Doctor: How to Lose Belly Fat, Sleep Better, & Stop Suffering Now with Mary Clare Haver, MD

Have thoughts you'd like to share? Drop us a note:

[email protected]

[email protected]

Check out Lara's blog: Tom's Troops

Check out Mar's Etsy shop: Cottage at Marehaven

In this episode, Mary and Lara discuss the strategies they have learned and continue to practice to help ease the ALS caregiver and survivor journey. Both Mary and Lara discuss how they came to these practices at a time that was right for them. They both still struggle with their journey, but having something to lean into when the journey becomes too hard has been the key to finding their paths forward. We hope that by seeing how differently we both came to mindfulness and meditation it is never too late or too early to find peace in the chaos of this ALS life.

Check out Lara’s latest blogs, Ending 2023 with gratitude and Finding peace just outside my door regarding how she feels she is transitioning from deep grief to healing:

https://tomstroops.com/2023/12/31/ending-2023-with-gratitude/

Check out Mary’s Cottage at Marhaven Etsy shop.

This Caregiver Life podcast episode: Give Your Mind a Rest

Guided Meditation by Tara Brach

This time of year, the holidays, can be a challenge for us in the ALS community, now and in the afterlife. We do our best to figure out ways to make it palatable. Sometimes we succeed. Sometimes we don't. It's very individual to know what will work for you. Lara and I agree that staying away from Social Media for a few days before, during, and after a holiday can be helpful.

Several years ago, when I was fully engaged in co-hosting the podcast "This Caregiver Life" I interviewed Lara. Lara shared her strategy for getting through: https://podcasters.spotify.com/pod/show/thiscaregiverlife/episodes/E18-Upside-Down-Holidays-e8j029/a-aqktp0

Check out Lara's latest blog post: https://tomstroops.com/

Check out Mary's Cottage at Marehaven Etsy shop.

Have some thoughts you'd like to share:

Mary's email: [email protected]

Lara's email: [email protected]

Facebook page: https://www.facebook.com/ALSCaregiversandBeyond

#ALScaregivers #Caregivers #Survivors #Sympathy #Podcasts #ALS

Lara and Mary dig into their experiences when sympathy from others produces big feelings that are not always positive. Lara says "It's the look" and it is, isn't it? They also share some big laughs when Mary shares the crazy things Tom says! With each podcast, it is easy to see how this concept can be applied to them: To be listened to is healing. (The Covenant of Water, Abraham Verghese). If you are struggling, please find someone who will listen you without judgment.

Check out Lara's latest blog post: https://tomstroops.com/

Check out Mary's Cottage at Marehaven Etsy shop.

Have some thoughts you'd like to share:

Mary's email: [email protected]

Lara's email: [email protected]

Facebook page: https://www.facebook.com/ALSCaregiversandBeyond

#ALScaregivers #Caregivers #Survivors #Sympathy #Podcasts #ALS

Mary & Lara chat about finding grace and its value to their life. They have each discovered in their own way that grace frees them from the constraints of feeling guilty, encourages them to be kind to themselves, and gives their hearts relief.

Have you found the gift of grace? Please let us know and we will share it on the podcast.

We enjoyed another Pema quote this episode:

From the very beginning to the very end, pointing to our own hearts to discover what is true isn't just a matter of honesty but also of compassion and respect for what we see.

Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult Times

Check out Lara's latest blog post: https://tomstroops.com/

Check out Mary's Cottage at Marehaven Etsy shop.

Have some thoughts you'd like to share:

Mary's email: [email protected]

Lara's email: [email protected]

Facebook page: https://www.facebook.com/ALSCaregiversandBeyond

#grace #ALS #endALS #ALSsurvivors #ALScaregivers

Lara and Mary explore the need to belong, the loss of belonging, and the uncertainties of future belongingness and how they feel about it. This may resonate with ALS caregivers and those living the beyond life. Their belongingness tends to be in lanes they didn't seek out or expect. The Science Behind Our Need to Belong - Insights into the history, present, and future of belonging research

Brene Brown's book Atlas of the Heart

Mary's new craft shop can be found: cottageatmarehaven.etsy.com

Lara's blog: https://tomstroops.com/

Lara's email: [email protected]

Mary's email: [email protected]

Their Facebook page: https://www.facebook.com/ALSCaregiversandBeyond/