ALS Texas

Donate

Staying Connected on the ALS Journey: Norman and Dee Jones’ Story

by Leave a Comment

Faith has guided Norman Jones his whole life. Even in the face of an uncertain ALS journey, it hasn’t wavered. 

Norman Jones described the beginning of his ALS journey as an emotional rollercoaster. He had gone from the highs of retirement and having more time to spend with his family, to the lows of a devastating ALS diagnosis. “But my faith has kept me strong,” Norman shared. “My wife, my kids, my friends, family, and church…they kept me strong.”

Even from a young age, Norman’s grandmother instilled in him the importance of faith. It kept him strong when he moved to the U.S. from Jamaica as a child, and it led him to become a Chaplain in the Army. Norman served in the army for 32 years, 24 of those being as Chaplain, before retiring in 2016.

Two years later, he noticed symptoms such as his left foot dragging while he walked and slurred speech. Through a series of tests and doctor’s appointments, Norman was formally diagnosed with ALS in May 2018.

Today, Norman and Dee, his wife of 41 years, live in San Antonio. They have two daughters—one who lives with them at home and the second who recently got married and is teaching in Korea.

Norman is still involved with his church, teaching a Wednesday Bible study, preaching occasionally, and even sharing weekly email devotions with his congregation. “Even though I have my limitations, I don’t let that stop me from getting involved.”

Dee and Norman connected with the ALS Association after visiting with Dr. Jackson at UT Health in San Antonio. Just two years into their ALS journey, Norman and Dee had to also adjust to the challenges of the COVID-19 pandemic, as In-person clinics and support groups came to a halt for the safety of Texans with ALS and their families.

During this time, virtual support groups kept the Jones family connected with the ALS community. “You’re able to express your emotion and your struggle. And then you get advice from others how they handle their struggles,” Norman shared.

Hearing the stories of other ALS families and swapping notes has been incredibly helpful to Dee as a caregiver. “For me, it’s a lifeline,” Dee shared. She recalled that many times, she has heard experiences from other wives and caregivers that are like her own. “Some of us are going through the same issues and same journey. I try to embrace it.”

Besides the hope of finding a cure, Norman, and Dee hope that researchers will discover ways to detect ALS early and provide treatments to improve quality and length of life with the disease. “I have a lot of hope,” Norman shared.

In the meantime, Norman encourages others on the ALS journey to stay connected to the community around them. “Reach out and connect with family, friends, and organizations, because you get your strength and support from others.”

Embrace the Equipment: Mike & Mary Busch’s Story

by Leave a Comment

As ALS progresses, it robs you of the ability to eat, speak, move, and breathe on your own. One of the most important resources provided by the ALS Association of Texas is our Equipment Loan Program. Access to no-cost equipment loans, give Texans with ALS their much-needed freedom and mobility back. For ALS families like Mike and Mary Busch, this program is life changing.

“We’ve been great beneficiaries of the loan closet, and unfortunately though they had challenges during COVID in terms of delivery they made arrangements to have things direct shipped.” Mike shared. His family has utilized equipment like ramps for the house, a special shower chair, and Hoyer lifts. “They’ve come incredibly handy.”

For Texans with ALS, durable medical equipment not only allows them to maintain their independence but also allows their caregivers to better care for them. “I couldn’t do it alone if I didn’t have that Hoyer,” Mary shared, noting how they use the lift at least four times a day. “It’s a shame when you see people never getting out of bed because they don’t have the equipment. It lets you get up and feel like a normal human.”

Mike’s core strength has diminished as his ASL progresses, making it difficult to sit in a traditional chair. “One of the biggest lifesavers in addition to the Hoyer was a special chair that makes showering easier.” Equipment like Hoyer lifts, ramps, and shower chairs, bring Mike a sense of normalcy during an otherwise difficult ALS journey.

“Anticipating things coming down the line and getting the equipment before you need it is important,” Mike shared. Through ALS Texas and our community partners, we help Texans with ALS stay one step ahead of the disease.

One of Mike and Mary’s other big pieces of advice for ALS families: “Embrace the equipment,” even when it is overwhelming. “I can’t say enough good things about ALS Texas and how they’ve supported us. Just in bringing the community together and the equipment closet…I hope everyone would grab every opportunity they have to grab all the resources available,” Mary shared.

Learn More about the Equipment Loan Program

 

2021 Under Ballou Skies Hero: Sarah Durand

by 1 Comment

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

by Leave a Comment

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.

2021 Shoot Out ALS Hero: Stacy Brown

by 8 Comments

Embrace everybody and every day, enjoy every moment and say what you need to say to those around you. That is the essence of #JustLiving. Stacy Brown and his family developed this philosophy following his ALS diagnosis. This year, we have the pleasure of honoring Stacy Brown as the 2021 Shoot Out ALS Hero.

Stacy was raised by amazing parents and grew up in a small town in northeastern Arkansas. He moved to New Orleans the day after he graduated from high school.  After attending LSU and graduating from Centenary College he moved to Texas, and has lived in Houston since the late ’80s. There he met his future wife, Kellye.

Stacy and Kellye first met during a Sunday school class in Houston. He was the president of the class and she was there with a group of friends. After leaving the class, Kellye recalls telling her friends, “I’m going to marry that man one day.” And marry him she did.

Following five years of building a friendship, Stacy finally asked Kellye to be his girlfriend. They were engaged after three months of dating and married six months after that in 1995. A few years later, they had  boy/girl twins, Emily and Scott.  Today, Kellye and Stacy have been happily married for 25 years and still call Houston home.

The Beginning of an ALS Journey

Stacy started to experience slurred speech in 2020. He and Kellye thought he may have had a stroke. They decided to consult with a friend who was a neurologist at Houston Methodist to be sure. Through a process of elimination, Stacy received a formal diagnosis of bulbar onset ALS in October 2020. Bulbar onset ALS is when symptoms first affect the muscles of the face and throat.

As Stacy’s symptoms progressed, speaking became increasingly difficult, and he decided to retire in December 2020 after a successful career in sales and marketing.  While working, Stacy used those skills to serve others. “I’ve always enjoyed doing philanthropic work. It was a great way to give back to the community,” Stacy shared. He is a former Chairman of the Rotary Smith Award and a member of the Lomdardi Award Committee and is currently a Vice Chairman of the Wine Committee of the Houston Livestock Show & Rodeo as well as serving on the World’s Championship Bar-B-Que Committee for over 25 years.

Joining the Fight Against ALS

“I was shocked to find out that there is no cure and that there are very few treatments,” Stacy shared. While searching for organizations that supported the fight against ALS, he came across the ALS Association of Texas. They were then able to get connected with resources, including one of our multidisciplinary clinics in Houston.

“We have been utterly blown away by the level of care afforded to, not only the ALS patients, but their caregivers as well,” Stacy noted about the ALS clinics. “Seeing everybody in one day is incredibly helpful. We must increase funding in order to provide local ALS clinics across the state.”

Shortly after getting connected with the resources at ALS Texas, Stacy looked for ways to impact the organization himself. “From my previous philanthropic work, I had skills that could be utilized for raising money and awareness.” After connecting with an ALS Texas board member, Stacy joined the ALS Texas Regional Leadership Council.

We must increase fundraising for additional research in hopes of curing ALS so others don’t have to go through this.

Foundation of Faith

Kellye noted that Stacy’s faith plays a key role in his desire to serve others. “Regardless of what we are experiencing, God teaches us that our focus is not inward, but outward. Faith has always been and continues to be, the driving force in our family. It will sustain us through our ALS journey.”

Knowing that his life is being cut short by this terrible disease, Stacy makes it a habit of expressing the important thoughts and feelings that he may or may not have said to his friends and family.

Our love for others is our grateful response to the love God first demonstrated to us. 1 John 4:19

In the short few months since Stacy’s diagnosis, Kellye said “So many others affected by an ALS diagnosis have come into our lives and I can only attribute that to God’s providential care.”

#JustLiving

Before the ALS diagnosis, Stacy was blessed with many opportunities. He has traveled extensively, become a sommelier, played guitar in bands, wrote and published music, and got his sailing license. However, his biggest accomplishment is his twins, Emily and Scott, who are both college graduates and are currently working in the Houston area.  They are his pride and joy.  Today, he is not letting ALS keep him from enjoying the little things. “I’m taking this time to just live and enjoy what I’ve been blessed with, mainly my family and my friends.”

He and his family coined #JustLiving, a philosophy to guide them through the ALS journey and beyond. The essence of #JustLiving is to embrace everybody, experience every day, enjoy every moment, and say what you need to say. “We’re going to live every day as fully as we can until we can’t,” Kellye tearfully shared.

Encouragement for Those on The ALS Journey

The ALS journey can feel isolating, so it is important to stay connected with others. “Surround yourself with a group of people, family, friends and experts who can support you,” Kellye suggested for others on this path. The ALS Association of Texas provides a network of support from ALS clinics to support groups.

“Without the ALS Association, we wouldn’t have a pathway to direct dollars to research and clinical care, and that’s a big deal!” Stacy shared about ALS Texas. He is both hopeful for a cure and hopeful for new treatments to improve the quality of life.

You can support Texans with ALS like Stacy Brown by joining us for the Sixth Annual Shoot Out ALS Sporting Clay Shoot in Houston, Texas on March 23, 2021. Shooting enthusiasts will participate in an afternoon clay shoot followed by cocktails, dinner, and awards at the Greater Houston Sports Club.

Not a shooter? No problem! Dinner-only tickets are available for those who do not want to shoot, but still want to support the fight against ALS.

Register for Shoot Out ALS Houston

Donate to ALS Texas

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

by Leave a Comment

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.

Young Caregivers in Texas Aren’t Alone

by Leave a Comment

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

by Leave a Comment

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

ALS Caregiver Recognized for Excellence in Caregiving

by 1 Comment

Caregivers of people with ALS are crucial in the care of their loved ones battling this disease. Being the primary caregiver for a loved one with ALS can be stressful – not only are you on call 24/7, but you may have additional outside responsibilities, like working a full- or part-time job or caring for additional family.

ALS caregiver Trixie Stanford was honored at the Gordon Hartman Family Foundation‘s 2nd Annual Excellence in Caregiving Awards in April. A Belton resident, Trixie serves as the primary caregiver for her son Charlie.

[Read more…]

ALS Can Never Steal the Joys of Motherhood

by Leave a Comment

In 2001, Patricia and Oran Hamilton welcomed their son Patrick into the world. As Patricia started this new chapter in her life, she knew that she wanted to cherish every moment of motherhood. Over the years, she watched as her son grew, encouraging his love of learning.

When Patrick was 11, Patricia started experiencing weakness in her hand, and went to a neurologist who gave her three different diagnoses. In March 2014, she was finally diagnosed with ALS.

[Read more…]