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Messy Motherhood: Jennifer Mercz’s Story

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I felt I was falling short in a lot of places. You can’t have it all together.

In January 2019, after a year of doctor’s appointments, increased symptoms, referrals and second opinions, Jack Mercz was diagnosed with ALS at the age of 53.  In a recent ALS Texas interview with his widow Jennifer Mercz, Jennifer shared “our whole relationship pretty much changed in a day.”  Jennifer and Jack had a then two-year old son, and Jennifer added, “I had been with my husband for 10 years and suddenly found myself not only caring for my husband but also my young child.” She recalled moments that included putting her son in the bath and helping her husband in the shower at the same time, and at the end of the day being too tired to even take a shower herself.

Jack and his family battled ALS for more than a year- and amid the COVID pandemic as well, until Jack passed away in September 2020. “Walking on this journey was one of the most challenging things my family has ever endured,” shared Jennifer. Yet, she is ready to share her experience with others. “This community and support are lifechanging; to have support and know that you are not completely alone.  Me sharing…if this helps one person that’s good enough for me.”

Jennifer shared that Jack was not very accepting of any kind of help; he wanted to be stronger in every way and help Jennifer at home when he was not traveling for work. Frustration over his declining physical abilities and strength led to anger and depression and Jennifer shared that she “became very standoffish emotionally-clinical with him.” While Jennifer did reach out to ALS Texas and the community as much as she could, she added that “things were moving so quickly that I didn’t seem to have time” to do more-such as accessing our ALS Texas equipment loan program sooner. “The ALS Association delivered a Hoyer lift to our home-it was great, and we needed it.  Jack was able to get up (after weeks of being in bed) and sit on the couch with our son.”  He told me that he wished we would have had that [Hoyer lift} earlier.  In retrospect, she added that she would do things differently in making some “executive decisions” about Jack’s needs; equipment and care that would have also benefitted her.  She urges all family caregivers to seek help with caregiving if at all possible-from anyone who is able to help, including friends and family members, and when someone says, “Hey, do you need help?” the answer is “YES! Here’s how you can help me.”

You put yourself on the back burner. Get help, even if just for an hour, so you can eat, shower, and take a deep breath. Support, from my husband’s perspective, was not a priority, but I needed it… 20-30 minutes for yourself is the most important.

ALS Texas offers programming and support for caregivers of all ages. You know when you receive safety instructions before traveling by air, and the flight attendant tells you that in the event of an emergency, you should put the oxygen mask on yourself before helping those around you? They say this because you will not be any good to those who depend on you if you cannot breathe yourself. This applies in caregiving too, and it is very important to remember.

Not only do we have Brewed Awakenings, our caregiver group just for women, or one of our many Connection (Support) Groups throughout the state for both those living with ALS and their caregivers, but we also host workshops such as Running on Empty: Burnout and Compassion Fatigue, The Cost of Caregiving.  Often, caregivers like Jennifer share that they just do not have time to attend any of these. In reality, you cannot afford NOT to.

Jennifer was dealing with so many different emotions, and candidly shares that she was “in such a dark place.  Added to all of this was an unneeded dose of Mom Guilt. Mom guilt is the feeling of guilt, doubt, anxiety, or uncertainty experienced by mothers when they worry that they are failing or falling short of expectations in some way.  Being a parent is one of the most difficult jobs in the world and does not come with a handbook, and surely not a handbook for when ALS enters your life. No book, pamphlet, workshop, or conversation can truly prepare you for what you are about to experience.  Jennifer recalled once giving her son a bag of chips and then going to care for Jack.  “When I returned the bag was laying there empty, and I thought to myself, I hope my son ate those and not the dog. At times that was all that I had time for.”

Pay more attention to what is real and less attention to what you feel. Feelings can trick you in to thinking you are the worst mom out there.  Being level- headed and rational with your thinking will help you to see what is really going on.

When asked how she and their now almost four-year old son are doing today, Jennifer replied, “Grief is a tricky thing. Overall, he is good, and I’m touch and go.  Today, I’m good.”  ALS Texas walks alongside our families throughout every phase of the disease and we also have many bereavement resources for adults, youth, and children, and hosts a quarterly Bereavement Group.

Learn More about our Caregiver Programs

View Upcoming Support Groups

2021 Under Ballou Skies Hero: Sarah Durand

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This year, we are honoring Sarah Durand as our ALS hero during the Under Ballou Skies Golf Classic & Party. In the last year, Sarah has not only had to navigate life during a pandemic, but also an ALS diagnosis.

Sarah currently resides in Austin, where she has lived for the last 18 years. She built a career in massage therapy, working for two different resorts. In September of 2019, Sarah started to notice that one of her fingers would not fully extend. She thought it might be the onset of arthritis, a common experience among massage therapists.

Once the COVID-19 pandemic began, resorts closed, giving Sarah several months off, yet she saw no improvement with her finger. She went to a Rheumatologist and was diagnosed with rheumatoid arthritis in early 2020 and started doing injection treatments. However, after three months of injections, her condition continued to worsen.

“I noticed in my yoga class that I couldn’t balance on my right leg anymore,” Sarah shared. After visiting with a neurologist, Sarah was diagnosed with ALS in September 2020. She even went to two other doctors for a second opinion—both coming to the same conclusion: ALS.

Getting Connected with the ALS Community

Sarah connected with the ALS Association of Texas shortly after her diagnosis. She already visited a multidisciplinary ALS clinic once and plans to go twice a year for routine care. And while she may still be in the early stages of the disease, Sarah knows that ALS Texas is just a phone call away for everything from no-cost equipment loans to support groups!

ALS can affect people of any age and gender, and the average age of diagnosis is 55, but at only 39 years old, Sarah hopes to connect with younger people with ALS, especially other women. “I recently have found a couple of girls that I’ve started talking with and that’s been a true blessing, having somebody that understands what I’m going through.”

A New Normal

In the meantime, Sarah is finding a new normal, from adjusting her home to make it accessible to applying for disability. “Once I get adjusted to one thing, I lose control of something else.”

Sarah has even had to changed how she spends her free time. “A lot of my hobbies, I can’t do them anymore,” she shared. “I loved to go hiking and loved to go running. I have two paddle boards in my backyard that I stare at all the time and can’t use them, you know?”

Sarah finds joy in time spent with her boyfriend, Danny, her friends, or her two dogs and cat. She cheerfully shared how Danny is incredibly supportive of her ALS journey, “He’s really been with me day in and day out.” From cooking together, to enjoying a relaxing day at the pool, Sarah and Danny are making the most of every moment they have together.

Fighting to Raise Awareness

Sarah is passionate about raising awareness for ALS. “I had never even heard of ALS before I got diagnosed,” she shared. And finding a cure for ALS starts with people seeing the need for a cure for ALS.

Before being diagnosed with ALS, Sarah ran races and supported fundraising events for breast cancer research. Her mom had fought the disease, which made it a cause dear to her heart. However, she noted that there is not the same kind of widespread awareness surrounding ALS. “I never see anything for ALS like pins, hats, clothing”.

Sarah hopes soon that more doors will open to host fundraising events to awareness efforts and critical research for a cure and reliable treatments. However, there is an exciting way that you can support Texans with ALS like Sarah from the comfort of your own home!

Supporting Texans with ALS at Home

This year for Under Ballou Skies, you can support Texans with ALS from the comfort of your own home with our Party with a Purpose basket. Join us on May 13 for a virtual party, where we’ll honor Sarah and support Texans with ALS with an auction. Each basket includes boutique picnic provisions and items to make a Tito’s signature cocktail for you and your guests!

Secure Your Party with a Purpose Basket Today

Support Texans with ALS

 

Go! Go! Go! – Bruce Gilliam’s Story

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Don’t let the fear of striking out keep you from playing the game.

Bruce Gilliam of Lubbock knows a thing or two about playing ball-specifically men’s softball. Not only did he play ball for many years, but the men’s Over 50/Senior Tournament Team that he now coaches-Team LBK, just last month participated in the invitation only Tournament of Champions in Florida. Before an invitation can be extended to this tournament, a team must have also won a tournament in the U.S. Team LBK-with the LBK being a nod to their hometown of Lubbock, TX, won the state tournament in Grapevine, TX in August 2020, and came in second place in a tournament in Phoenix, AZ just before Thanksgiving 2020.

Bruce, a younger “senior” at age 57, was diagnosed with ALS in July 2019. Being the youngest of seven children, he has always been a scrappy fighter and not one to let life’s curveballs keep him down. “I used to be very competitive playing ball, and once I couldn’t play anymore they asked me to coach.”

He adds that he has known some of the players on his team for a very long time, and that when they were younger, they qualified to the World Series in Florida three times.  During games, Bruce takes his scooter on the field just outside the dugout and the umpires let him park there to keep score, coach, and discuss game rules.  He added that most umpires also ask a player to stand in front of him to help protect Bruce from both hit and thrown balls. In January 2021, Team LBK took home a second-place trophy.

“I did not want to give up softball, and yet it is a JOB coaching-organizing and setting up tournaments.”  Even thought it is a lot of work, Bruce is no stranger to that concept. “I’ve always been a Go, go, go! person.”  Bruce added that one of his former managers that he has kept in touch with has said that Bruce is “the hardest working man I’ve ever known.” Before retiring, Bruce was the manager of an appliance parts supply store and fixed appliances after hours. He still enjoys working on those appliances when he is able to do so- “dryers are easier because they are lighter,” and his wife (Raquel) can help lift them if needed.  Bruce has lost some grip and strength in his right hand that has forced him to learn to use his left hand a lot more.

Sometimes the only thing that is fair in life is the ball hit between first and third.

In addition to his passion for softball and repairing the things that he can-Bruce loves his rescued pup, Mia, restoring vintage cars, and he is also an avid sportsman who enjoys fishing and bird hunting.

Bruce and his wife, Raquel, have a blended family of four grown children, and six grandchildren. Raquel is still working full-time in banking industry, and Bruce-well, you’ve gotten a glimpse in to his life and how he is making every day count.  This is one of the reasons that Bruce Gilliam was the first feature in our new ALS Texas “One Day….” Series. Watch his interview on Facebook!

The “One Day….” series helps remind all of us to slow down and stop looking forward to or preparing for the next thing, and to instead enjoy what we have right in front of us-to making these moments count.  Sometimes that might mean to make them meaningful, sometimes it might mean to make them memorable-and we want to help make that happen.

Do you have a memorable moment to share?  We want to hear about it!  Send your “One Day…” stories to Tonya. Our lives tell a story of the journey of our days.  One Day can be full of thousands of moments, and every day… is a gift; don’t send it back unopened. One Day…there will be a cure for ALS.

One Day… A New Series to Celebrate Our ALS Texas Family

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A lot can happen in one day.

For many of us, our days feel like a blur of appointments and tasks to be completed. We often do only the bare minimum of what we need to stay afloat. Other days, things go our way, we are checking things off of our lists, we receive good news, we carry out or witness good deeds, and we feel like a superhero.

Sometimes we think, “I’ve got this!”, and feel like we are walking on sunshine. Then the clouds move in, and there are days we feel like we have never been more lost and without any sense of direction.

Simon Sinek teaches us to have an infinite mindset. “In an infinite game, there is no winning. There is only ahead and behind.” He challenges us to change our narratives and to stop labeling days as either good or bad. Instead, we should think of days as either ahead or behind. It reminds us that life is a journey of our days that some might even compare it to an amazing race. We tend to forget that each and every day is more than just that single time stamp. Each is made up of many different moments.

Nobel Prize-winning scientist, Daniel Kahneman, suggests that we experience approximately 20,000 moments every day. A moment is defined as a few seconds in which our brain records an experience. These moments are captured as positive, negative, or plain neutral. Rarely do we remember neutral moments, but instead we remember the positive and negative moments.

“Each day… is a gift; don’t send it back unopened.”- Unknown

This quote reminds us to slow down and stop focusing on the next thing and to instead enjoy what we have right in front of us, to making these moments count. That might mean working to make those moments memorable and we want to help that happen.

Beginning in February 2021, The ALS Association of Texas will launch a new five-minute interview series entitled, “One Day…” We will visit one moment of One Day in the life of members of our ALS Texas community and celebrate our ALS Texas family. Do you have a memorable moment to share?  We want to hear about it!

Send your One Day stories to Tonya. Maybe it’s something like a “Walk and Roll” that one of our ALS families told us about. A wife and her husband with ALS take an afternoon stroll together: hers is a walk, and he puts some miles on his power wheelchair! They get fresh air, sunshine, and they do it together. Now that is a moment to capture!

Together, we will savor the sweetness and celebrate victories big and small, friendships, creative approaches to living life to the fullest, family, and just plain good stuff. We will lock arms not only in our fight against ALS, but in creating more ahead days than behind, and in our determination and hope that there will One Day be a world without ALS.

Patricia’s Story: Give Courage

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Patricia is the captain of her life and her ALS diagnosis, but she didn’t always feel that way. She, like many others with the disease, took time to accept her diagnosis, acknowledge how her life would change, and how her son and husband would be affected.

Walking through the door of her first ALS Multidisciplinary Clinic was a hard step to take—she even tried to leave. Her husband Oran shared that once she was able to accept her diagnosis, Patricia found her courage.

Today, Patricia and Oran are advocates for the ALS community. She and her husband attended the ALS Advocacy Conference in Washington, D.C. in 2018, where they met with members of Congress to advocate for patient rights and research funding.

Patricia and Oran have hope for the future. They’ve worked closely with the ALS Association of Texas, finding the resources and support needed, and knowing that they are never alone on this journey. “They’ve helped me a lot… they’re always there,” Patricia says.

Because of you, they have hope for a world without ALS.

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John’s Story: Give Joy

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Gratitude is what guides John and Jill Lay’s life. Everything from the life they’ve built together and their children and grandchildren, to the simpler things like University of Texas football games and sunsets on the farm bring them joy.

When John received the devastating diagnosis of ALS in 2019, he didn’t let that steal his joy. Instead, he and Jill started searching for resources. That’s when they discovered the ALS Association of Texas and the ALS community that would help them through this journey. It has been an uplifting experience for them to join a community of other families living with ALS, while collecting knowledge and receiving support.

John and Jill continue to live their lives to the fullest, despite the challenges of ALS. In fact, John declared the year of his diagnosis the best year of his life. “It might sound strange, but I am grateful,” he shared, “I’ve had the opportunity to see my children grow up, my family is healthy and happy, and I have the support of an incredible community.”

As the disease progresses and John continues to experience symptoms, he and Jill find comfort knowing they are not alone on this journey and that they can reach out to the team at ALS Association of Texas anytime for guidance and resources.  ALS Texas provides crucial programs to them and others on the ALS journey.

“That is the reason I am so excited to support ALS Texas – for what they do to help people on this journey with this disease,” John shared.

Although a cure may not be available for John in his lifetime, he and Jill are hopeful that in the future, there will be a cure for others diagnosed with ALS. In the meantime, John and Jill continue to live every day with gratitude and joy.

Because of you they have hope for a world without ALS.

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Young Caregivers in Texas Aren’t Alone

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We must never underestimate the strength that caregivers have for providing support to those who need it most, nor the toll that it takes upon them both emotionally and physically.

Last year for National Family Caregivers Month, the ALS Association of Texas focused on recognizing, supporting and empowering family caregivers. In this third and final installment to our three-part caregiver series, let’s dive into a caregiver perspective that’s frequently overlooked.

We mostly hear of advanced illnesses throwing spouses and life partners into the primary caregiver role for their loved ones. However, we rarely acknowledge the many young adults, youth and children that are providing care for a parent.

Approximately 1.4 million children and youth from ages 8 to 18 in the U.S. are familiar caregivers of a family member. They support both activities of daily living (ADLs) and instrumental activities of daily living (IADLs). This includes managing complex assistive devices, feeding, bathing and toileting, among other activities.

In Texas, we know that there are more than 2,500 youth and children involved in the ALS experience.

The ALS Association of Texas worked in the last year to developing educational resources and programming for young caregivers involved in the ALS journey. During this process, a phenomenal group of young leaders emerged, and just like ALS, they don’t stop. Abby Estrada, LCSW, Jothi Gupta, Connor Hadley and Gabriel Poveda all know first-hand what it’s like caring for a loved one with ALS, specifically their fathers. Keep reading to hear more about their stories:

Abby Estrada, LCSW

Abby Estrada’s father was received his ALS diagnosis while she was in high school. She helped provide much of his care until he passed away while she was in college. Abby took her experience and passion for helping others into her career as a licensed clinical social worker in Texas. Abby heavily involves herself in our fAmiLy talkS workshops and is looking forward to also being a therapeutic resource for our ALS Texas community as a LCSW.

When it comes to those difficult but crucial talks about ALS, Abby shared, “Keep the conversation ongoing with your children. Check in with them, especially at times when ALS progresses and your ‘new normal’ is changing. Listen—perhaps the best thing you can do is be there and listen. Your children may be angry, confused or sad. Hear them and allow them their feelings.”

Jothi Gupta

17-year-old Jothi Gupta launched the It’s Okay to Not Be Okay: A Closer Look at Family Illness and How to Navigate It podcast earlier this year. Perseverance is also way of life for her family, who as a whole, has shared their poignant journey with ALS with our community. Jothi is also the editor-in-chief of her school newspaper, a leader on her school’s debate team, and co-founder (along with her sister) of the RG Foundation for ALS Awareness.

“This is such a painful disease to watch slowly take my Dad away and we want to do everything in our power to fight back,” she shared. Jothi also noted that she is passionate about resiliency and is looking forward to connecting with and supporting other teen caregivers in Texas.

Connor Hadley

Connor Hadley was a pre-teen when his Dad, Collin, was diagnosed with ALS. He since has watched ALS progress and rob his Dad of so much. Now at the age of 17, virtually every day brings a new normal.

The Hadley family believes in making each day count.  Connor just attended his last youth church camp and loves playing football. He still puts his experience as young caregiver into action. Connor  believes he has a gift of helping people do the right thing and wants to support youth and children in Texas. He added that while he is a teenager knocking on the door of adulthood, he was much younger when his Dad was first diagnosed with ALS, and he believes he can really relate to that age group.

Gabriel Poveda

Gabriel Poveda is wise beyond his 20 years and has likely experienced more than just about anyone in his sophomore class at UT Austin.  This year’s National Family Caregivers month theme is Caregiving Around the Clock, and Gabriel can certainly attest to this being true.

“My Dad was diagnosed November 14, 2017. I had just turned 17 as well. From 2017 to August of 2019, I was very involved in my father’s day-to-day caregiving,.” Gabriel Shared. At the time, he was still in high school. “I had to make sure that I got home on time so I could give him is IsoSource feedings. I had early release at school, and got home around 1:00, and would stay with my Dad until about 6:00pm when my Mom got home from work, and then she would take over.”

Young caregivers experience an impact on their friendships, relationships, clubs, etc., Gabriel added, “You forget about a lot of things; emotions foremost among them, but also other relationships, and other bits of everyday life that you previously thought were important.”

Gabriel learned about a student-led program at UT Austin which pairs young people with senior citizens for weekly/bi-weekly chats. “It’s an inspiring group of my peers and it got me thinking: why not for ALS? It would require, time, money, and most importantly people, but I believe it is plausible.”

So what’s next for young caregivers?

We’re taking Gabriel’s feedback to heart! ALS Texas has launched online peer support groups for young caregivers involved in the ALS journey. The inspiring young people above will co-facilitate this group, continuing to change the world one day at a time. Each of them want to connect with other young people who feels isolated and alone. Young caregivers in Texas aren’t alone.

Gabriel extends this invitation to all of our ALS Texas young caregivers, “I encourage you to reach out… we’re starting online peer support groups, and we’d like for you to be a part of it.”

View the virtual support groups schedule

Wife, Partner, and Caregiver – The Balancing Act

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The ALS Association of Texas is dedicated to recognizing, empowering, and supporting family caregivers throughout Texas. Our hope is to share the different perspectives of the ALS experience and walk alongside every family member throughout the journey—the journey that is a marathon and not a sprint.

Did you know that in the United States, about one in 10 caregivers are providing care for their spouse? Stamina and success as a spousal caregiver mean knowing when to ask for help, finding time for yourself, and making peace with your partner. Now you have all the answers. That’s the end of this story, right? Not. Even. Close. All of the things mentioned above are so much easier said than done.

“Many people will say that they will do as much as they can until they can’t anymore, and that’s not good for anyone,” says Dr. Jacobs, author of Meditations for Caregivers: Practical, Emotional, and Spiritual Support for You and Your Family. Friends and other family members are often more willing to help than you think, so don’t steal their chance to be a blessing! (Know when to ask for help)

In visiting with families throughout the state, I’ve asked many wives this question. “What do you need most that ALS Texas is not currently providing?” More times than I can count, the answer has been, “What I need, you can’t help with. I am no longer a wife; I’m a caregiver, and you can’t fix that.” While it’s true that ALS Texas can’t change that, we can help provide more education, programming and support on how to take control of that balancing act and not lose what you value most in your marriage.

That ultimately starts with MAKING time for self-care! Start with just five minutes a day and add a minute or two as you can; even if you have to go into a closet to breathe deeply, read, meditate, and have some alone time, those few minutes can make a huge difference. One of the best pieces of feedback I’ve heard from a wife/caregiver is, “He can be very dependent on me, but I tell him that I need some uninterrupted time for myself.” (Finding time for yourself)

The Gupta Family

In September, we were honored to join the Gupta family from Plano, TX as they invited our ALS Texas community to walk alongside them in their genuine and very poignant journey with ALS. During the Gupta’s Family Talks special event, we listened as Hema Gupta emotionally shared, “I went from being a wife…to a caretaker. I think I….I honestly don’t think about any of that stuff, because it’s too hard, and I refuse, I refuse to let to let this…ALS, be the defining of the family.”

In her recent column We Are Both Patients, Kristen Neva shared, “I never imagined I would be providing this type of care for my middle-aged husband.” She adds that caregiving for her husband who has ALS, is stressful for them both, but their strong relationship helps them through the tough times.

“Spouses need to pause and recognize that their marriage has changed completely and may never return to the way it was,” says Dr. Denholm, PhD, a psychologist in West Palm Beach, FL, and author of The Caregiving Wife’s Handbook. “If the sick spouse is still able to communicate, I always recommend that couples talk about the changing relationship openly and honestly, and as soon after it starts changing as possible.” (Making peace with your partner)

As a caregiver, do you and your loved one living with ALS have an agreed-upon signal to let each other know it’s time for you to take a break? Many spouse caregivers struggle with the “G” word – guilt – and on a daily basis; they feel guilty for doing too little or too much. It shouldn’t be wrong to say, “I am your wife, above all, and not only a caregiver now.” Many spouse caregivers throw themselves into their new role so wholeheartedly that they neglect their own care or forget to consider how their spouse might be able to contribute.

Cultivate healthy communication as a practice. Being able to talk to your spouse candidly is important for every marriage, but it’s especially crucial for couples in which one person is taking care of the other. You may need to have delicate or difficult conversations about everything from toileting to the changing nature of your intimacy; the key is to not avoid those conversations. After all, caregiving is a partnership between the giver of care and the receiver of care. In practicing good communication as a husband and wife, you continue to focus on the art of adaptability. Experiment, think outside the box, and be creative in adapting to new normals – bring sexy back!

Knowing when to ask for help, finding time for yourself, and making peace with your partner are some of the biggest secrets to success in the balancing act of the wife, partner, and caregiver marathon. If you’re looking for ways to build these practices into your family’s ALS journey, our ALS Texas Caregiver Groups are a tremendous resource for spousal caregivers. We even offer a dedicated group for women, Brewed Awakenings.

Join a Virtual Support Group

Trimming the Fat: A Husband’s Perspective on Caregiving

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While Tyler Wood may not like being in the spotlight and does not consider himself a leader, the way that he cares for his family and for others (and even for himself), shines a much different light.  Leaders are oftentimes not specifically chosen for the role, rather it finds them, and they either sink or swim.  Family Caregiver Tyler Wood has chosen to swim in all of the uncharted waters and realizes that not only is life (especially life as a caregiver), a triathlon, but it is also a team sport. In sharing his journey, he hopes to “lift others up and support, and hopefully help them out by sharing my story; giving them tips and tricks that I use” as a caregiver.

Tyler is husband to his beautiful wife, Mylinda, and they recently celebrated their 23rd anniversary. He is also father to three boys; ages 17, 13, and 10. Their 10 year-old son has special needs and is living with Down Syndrome. Tyler also works full-time at a wonderfully supportive architectural firm, and enjoys smoking and curing meats, and making knives – both as hobbies and side businesses.  Tyler is also the family caregiver to Mylinda who was diagnosed with ALS in 2018.

November 2020 is National Family Caregiver Month, and the theme for this year’s focused and intentional appreciation and dedication to family caregivers around the nation is Caregiving Around the Clock.  If you ask Tyler about the 24/7, 365 days a year commitment of a family caregiver, he sums it up perfectly:

“It’s about trimming the fat, really, and figuring out what’s important stuff…but with self-care, you have to make sure that you’re not trimming all of your stuff out. You have to give yourself time, and that’s part of the care of your spouse – is caring for yourself. Because when you take care of them, you give out of yourself, and it’s a bucket of water.  Every time you pour out of yourself a little bit, there’s less in that bucket. When that bucket is dry, you’re not going to be of use to yourself or your spouse. It’s every minute of every day, because you’re not just caring for your spouse in that daily care, you’re caring for yourself so you can continue to care for your spouse.”

You can’t punch a clock to the end the day when you are a family caregiver, and it can be hard on the caregiver physically.  However, Tyler would challenge that the “mental is the most strenuous, tiring aspect of the entire thing. If you’re not taking the time to rest your emotions and your mind, you’re not gonna make it. You’re just simply not.”

Tyler readily shares that the ALS Association of Texas has been helpful in providing equipment as needs arise. He adds that he is thankful that in two years, Mylinda has progressed slowly, and they have not needed much of that just yet.  However, what has been most helpful to Tyler and Mylinda are the information and contacts, especially in the Lubbock and West Texas area where resources are more limited.

“Through ALS Texas, we were also able to receive information about clinics throughout the state, and get tied into those, as well as connect with other people in the area who are struggling with ALS.”

Information is especially critical in navigating the day to day challenges and often-times new normals that are part of the overall ALS experience. Tyler’s biggest struggle as a male caregiver? “Thinking like a woman. You have to somewhat get in a woman’s head as a male caregiver and that’s dang near impossible for us guys! It’s the mental game that you have to play with yourself. As men, we don’t think about that stuff, but the ladies, they still want to look pretty; they still want to feel pretty.  Feeling pretty for a woman is huge.”  And the biggest challenge within this? Sharing in his genuine approach that always contains some humor and laughter, Tyler quickly offers, “I do not like touching feet.”

He adds with a more serious tone, “clipping her toenails, painting her toes…you know doing all that stuff.  You really start to think about what attracted you to your spouse. It’s almost like you gotta think about being the opposite sex, and what they think is important and make that important to yourself as well. When you take the time and make her feel pretty, it’s amazing the glow that comes out of her, and the more zeal for life she has, despite the situation she’s in.”

In his last words of encouragement and support for all family caregivers, Tyler adds, “Hug your spouse. No matter what you’re going through, they’re going through it worse. Hug them, love them, show them compassion.”

Watch Tyler’s full interview below.

Walk to Defeat ALS Hero: Maria G. Sanchez

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Written by Maria’s daughter, Melissa.

Maria was a hero to everyone for many reasons. For her closest family, friends, and mentees it was because they could feel that Maria possessed the ability to see the very best in them no matter what. They knew that her occasional tough love was actually just the frustration she felt from them not living up to their own limitless potential.

Quite literally, she was a hero because she was a registered nurse, a nurse manager at University Medical Center (UMC) in El Paso, and a clinical instructor for The University of Texas at El Paso School of Nursing. She was a go-getter, a leader, and well-respected at the hospital and in her community. Maria was dedicated to patient care, and accomplished many “firsts” for UMC. She was a mentor to many. So much so that her UMC family continues to raise awareness for ALS and joins the Walk every year in her memory.

“She was full of life. We would go out shopping, and she would out-last everybody,” her daughter Melissa says. She always had an inappropriate joke, a Maya Angelou quote, uplifting advice and a prayer ready for any situation and any person that needed it.

Maria worked to instill strong values in her children, Melissa and Francisco, and sparked their desire to give back. Her motto was: “To whom much is given, much is required.” Melissa and her brother saw this in action, as their mother continuously helped family and gave back to her community, never expecting anything in return.

When Maria was diagnosed with ALS in August 2015, she didn’t tell her children or her family until January. She wanted to protect them, as she always did. She took the initial heartache, head on, with only her husband David by her side. She referred to him as her rock and her angel because he stood by her side through every heartbreaking battle so that their children and family didn’t have to worry. And they didn’t because they knew she was in the best hands.

During her battle with ALS, her humor and unwavering faith gave her family peace. Her smiles in photos were bigger than ever. Her daughter believes she did this consciously in order to show her loved ones that not even ALS could destroy her fighting spirit and the love she had for them. Her whole life, she embodied the Maya Angelou quote, “We may encounter many defeats, but we must not be defeated.”

After Maria passed away, her family felt called to honor one of Maria’s final wishes, “Life goes on,” she said, “You have to go on.” There was no better way for them to go on than to honor her life by continuing her legacy of giving back by starting the Walk to Defeat ALS team Maria G. Sanchez’s Warriors and volunteering with the ALS Association of Texas. They have even started reaching out to corporations to help secure corporate sponsorships for Walk to Defeat ALS. Their hope is that their efforts contribute to helping people with ALS and their families in even the slightest way.

“I want to tell people with ALS that you are not forgotten. You are not alone. My Mom at times felt like she was a burden to us, but it is the honor of our lifetime to be there for you in your time of need, just as you have always been there for us. You’re our heroes and you will always be our source of strength.”

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