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.orgI AM ALS / Synapticure (for non-veteran ALS families): www.iamals.orgFor 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] 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 ResourcesALS-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]: [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 & MarP.S. We’d love to hear from you! Drop us a note and let us know how you’re [email protected]@yahoo.comCheck out Lara's blog: Tom's TroopsCheck 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 & MarP.S. We’d love to hear from you! Drop us a note and let us know how you’re [email protected]@yahoo.comCheck out Lara's blog: Tom's TroopsCheck 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, MDHave thoughts you'd like to share? Drop us a note: [email protected]@yahoo.com Check out Lara's blog: Tom's TroopsCheck 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 RestGuided 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-aqktp0Check 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]'s email: [email protected] 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]'s email: [email protected] 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 TimesCheck 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] 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 researchBrene Brown's book Atlas of the HeartMary's new craft shop can be found: cottageatmarehaven.etsy.comLara's blog: https://tomstroops.com/Lara's email: [email protected]'s email: [email protected] Facebook page: https://www.facebook.com/ALSCaregiversandBeyond/

Yes, that is exactly what Lara and Mary are becoming...fix-its. They are learning to fix the practical and seemingly improbable, such as a water irrigation system! The more they learn to fix, the more confident they become in their abilities. Mary shares a quote that finds solace in over and over again: “Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.” ― Pema Chödrön, When Things Fall Apart: Heart Advice for Difficult TimesCheck 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] page: https://www.facebook.com/ALSCaregiversandBeyond

Hello! Welcome to episode 7. Lara and Mary wrap up their conversation regarding the Elizabeth Dole Act. Check out their conversation regarding the pieces of it that are most relevant to our veterans with ALS and their caregivers. As is their way, Lara and Mary start off the podcast discussing their current events, as well as, emotional temperature! As they close out the podcast they leave us with their evolving conversation around gratitude. Mare reads a poem by John O'Donohue: May all that is unforgiven in you, Be released. May your fears yield Their deepest tranquilities. May all that is unlived in you, Blossom into a future, Graced with love.This is a link to the House of Representative's text of the bill H.R.542 - Elizabeth Dole Home Care Act of 2023 This is a link to the Senate's text of the bill S.141 - Elizabeth Dole Home Care ActI AM ALS organization has a summary of the bill that can be found here: https://iamals.org/wp-content/uploads/2023/03/Elizabeth-Dole-Act-One-Pager.pdf Next week, we will focus on the other three parts of the legislation. You can find us on our Facebook page: ALS Caregivers & Beyond Lara Garey's email: [email protected] Hahn Ward's email: [email protected] #alscaregivers #als #advocacy #elizabethdolehomecareact

Gratitude can be a challenge to find some days. In this ALS Caregiver & Beyond life, Lara and Mary embrace a practice of mindfulness and gratitude. For the days they fail to find something to be grateful for they have their fallbacks, such as being thankful for a sunny day, good weather, or a cup of coffee in the morning. Why bother if you have to scratch for some gratitude? Because it forces at least one positive thought into their day and that alone can shift a down day into a better one. Here are a list of wonderful podcasts with a focus on ALS:I Lost My PersonBeyond MNDThe Couple ShiftI Am Dying To Tell YouIIf there is a topic you would like us to cover or would like to be a guest please email us at: [email protected]@yahoo.com

In episode four we talked about advocacy and our efforts over the years. Today, we dig deeper into a piece of legislation, the Elizabeth Dole Home Care Act 2023. The components of the legislation we focused on in this podcast are the following:Create a centralized website to share information and resources related to home and community-based programs and help veterans and caregivers determine their eligibilityExpand access to home and community-based alternative care programs to veterans at all VA medical facilities, including veterans living in U.S. territories and Native veterans enrolled in Indian Health Service (IHS) or tribal health programsIncreasing the amount the VA will pay for health care from 65 percent to 100 percent for alternatives to nursing home care, such as home health care, adult day care, and assisted livingThis is a link to the House of Representative's text of the bill H.R.542 - Elizabeth Dole Home Care Act of 2023 This is a link to the Senate's text of the bill S.141 - Elizabeth Dole Home Care ActI AM ALS organization has a summary of the bill that can be found here: https://iamals.org/wp-content/uploads/2023/03/Elizabeth-Dole-Act-One-Pager.pdfNext week, we will focus on the other three parts of the legislation. You can find us on our Facebook page: ALS Caregivers & Beyond Lara Garey's email: [email protected] Hahn Ward email: [email protected] #alscaregivers #als #advocacy #elizabethdolehomecareact

Lara and Mary talk advocacy in this episode. First, they check in with one another and discover that they each had an unexpected recent experience. They talk a bit about how these experiences indicate personal growth. Then they dig into advocacy, their why, and how. They have spent so much time using their voices in small and big ways for the ALS community, in particular, the veterans with ALS lane.Mary's testimony at a Senate subcommittee on Aging regarding Military Caregivers: https://www.c-span.org/person/?108683/MaryHahnWardMary and Lara's book: Thinking Through VA Benefits and VA Care: A Resource for Veterans with ALS and Their CaregiversLara's Blog: Tom's TroopsLara's email: [email protected]'s email: [email protected] would love to hear from you! Send us an email if you have a particular topic you'd like us to discuss or if you'd like to be a guest. --- Send in a voice message: https://podcasters.spotify.com/pod/show/mary-hahn-ward9/message

Lara and Mary share how the ins and outs of navigating their emotions are tricky sometimes. They can lose sight of life outside of ALS and the places it takes their feelings. They have learned how to meet their own selves in the place they are in with self-kindness. Take a listen. Send them a message if you'd like to share with them or perhaps be a guest on the podcast. They'd love to hear from you!Lara: [email protected]: [email protected] --- Send in a voice message: https://podcasters.spotify.com/pod/show/mary-hahn-ward9/message

Some days are like quicksand. We can't move, forward or backward. Moving backward could be an option if it meant it helped us move. We'd much rather move forward. We get stuck. Join us as we talk about where we are right now in our heads and hearts.To reach out to us send an email to either Lara Garey: [email protected] Mary Ward: [email protected]#ALS #ALScaregivers #ALSsurvivors --- Send in a voice message: https://podcasters.spotify.com/pod/show/mary-hahn-ward9/message

In this first episode, Lara and Mary share big feelings about how the disease impacts them and the role of advocacy in their lives. Storytelling is something they have in common. It helps them cope with life. They are hopeful that through their stories and conversation on the podcast, others will find comfort and perhaps see themselves. They love humor and use it often to lighten their load.We'd love to hear from you. Questions? Comments? Message us at [email protected] and/or [email protected] you for listening! --- Send in a voice message: https://podcasters.spotify.com/pod/show/mary-hahn-ward9/message