Episode 113
An ALS Caregiver's Courage: How Love Transforms Into Legacy When Everything Changes
Guest: Jennifer Allebach
Former Chief Girl Experience Executive at Girl Scouts USA and MDA (Muscular Dystrophy Association)
Episode Summary
Jennifer Allebach's life changed forever when her husband Brian was diagnosed with ALS in 2019. After 32 years of marriage and five children together, she became his primary caregiver while continuing to work full-time—first at Girl Scouts USA, then in a remarkable coincidence, at the Muscular Dystrophy Association, which serves ALS families.
For four years, Jennifer navigated the devastating progression of ALS while managing Brian's care, from installing Hoyer lifts to redesigning garden paths for wheelchair accessibility. She shares the emotional weight of caregiving, the financial challenges not covered by insurance, and the difficult decisions families face when confronting terminal illness.
Now in what she calls "the toddlerhood of grief," Jennifer is channeling her hard-won wisdom into purpose—planning to create resources for other ALS families based on the practical insights she gathered throughout their journey.
Key Topics Discussed
- The reality of being a primary caregiver for someone with ALS
- How ALS differs from other terminal illnesses (taking the body but not the mind)
- The financial burden of caregiving not covered by insurance
- Making end-of-life decisions as a couple
- Maintaining family relationships during long-distance caregiving
- The coincidence of working at MDA while becoming an ALS family
- Finding purpose in grief through helping others
- The practical challenges of home accessibility and daily care
Resources Mentioned
- Muscular Dystrophy Association (MDA) - Provides research funding, clinics, and support for families affected by ALS and other neuromuscular diseases
- Girl Scouts USA - Where Jennifer served as Chief Girl Experience Executive
Connect with Jennifer
Jennifer is currently developing resources for ALS caregivers based on her experience. While she doesn't have public social media for this mission yet, her story demonstrates the power of turning personal experience into support for others facing similar challenges.
About ALS
ALS (Amyotrophic Lateral Sclerosis) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. It typically takes about a year to diagnose and is always terminal. Unlike other conditions, ALS affects voluntary muscles while leaving involuntary muscles (like the heart) and cognitive function intact, meaning patients remain fully aware throughout the disease's progression.
Support ALS Research and Families
- ALS Association - alsa.org
- Muscular Dystrophy Association - mda.org
- ALS Therapy Development Institute - als.net
This episode touches on themes of terminal illness, grief, and caregiving. If you're facing similar challenges, please reach out to appropriate medical professionals and support organizations.
Next Episode:
Terry Grahl is the Founder and CEO of the national non profit, Enchanted Makeovers. The mission serves women and children living in shelters who have escaped domestic violence and human trafficking. Terry is also a children’s book author, speaker, and WARRIOR!
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Transcript
Welcome to the Uplifters podcast. I'm Arances Savas and I've spent the last 20 years at the intersection of behavior change research and coaching. On the Uplifters podcast, we share diverse stories of women who've found something beautiful on the other side of the hard stuff. Despite self doubt and fear and honestly, who among us doesn't have those? These women have done big brave things anyway.
and show us through their actions how we can too. Today I'm speaking with Jennifer Alibach, a woman whose life has been defined by lifting others up. Her professional legacy is extraordinary. She served as the chief Girl Experience Executive at Girl Scouts USA and probably to many is one of the most impactful leaders in that organization's long and storied history.
She later brought her transformational leadership to the Muscular Dystrophy Association, developing strategies to serve their camps and children with neuromuscular diseases. But it's her personal journey of courage that brings us together today. Two years ago, Jennifer lost her husband, Brian, to ALS after four years of being his primary caregiver while working full time.
Jennifer's isn't just about loss. It's about the weight of caregiving. It's about how
sometimes our most difficult moments can become catalysts for helping others. She's here today because she believes that no family should have to navigate ALS alone. And she's ready to turn her hard-won wisdom into support for others. Jennifer, welcome to the Uplifters.
Jennifer Allebach (:Thank you. It's good to be here.
Aransas Savas (:What a life, what a story.
How are you today?
Jennifer Allebach (:Well, as a friend put it, we are in the toddlerhood of grief in our family.
Aransas Savas (:Hmm.
Nobody asks for this disease. Interestingly, the last ALS wife we had on here was married to a man named Brian, who was also his primary caregiver. How long were you and Brian married?
Jennifer Allebach (:We were married 32 years. Yes, and we had five children.
I came to our marriage with three boys from previous marriage, and two years later we had twin girls. We had a great time.
So we were shocked when a very healthy, very vibrant, very busy man came down with this disease. Everybody was shocked. He ran, he went to the gym three times a week. He drove me in and out of New York City where I had an apartment and work.
Aransas Savas (:you
Jennifer Allebach (:and came home every weekend and he would drive me in, go to an opera, drive home. So we were stunned.
Aransas Savas (:what were the early signs for him?
Jennifer Allebach (:He was moving more slowly and he was hunched over. And that happened about a year before he was diagnosed. We all saw it. We didn't know what was going on.
r to diagnose. So in March of: Aransas Savas (:Mm-hmm.
Jennifer Allebach (:our grandson was getting baptized. So we got home and they formally diagnosed him the next month. And then it began. His disease progressed very quickly. He was using a walker within weeks and within a few months he had a wheelchair and we just had to quickly move on.
a lot of things to make sure he was safe because he kept falling. So our lives were devastated.
Aransas Savas (:Hmm.
All the freedom, all the adventures you dreamed of together just suddenly changed.
Jennifer Allebach (:Yes, yes,
everything, yeah. And he loved driving, And soon after Christmas, he couldn't drive. and then the endemic hit.
Aransas Savas (:you
Jennifer Allebach (:So that kind of was a blessing in disguise for us because everybody shut down. it kind of saved him a little bit because everybody was stuck. Except that our dreams of trips and things that we really wanted to do were shot because he never regained his health. ALS is a certain death. They tell you immediately.
Aransas Savas (:Mm-hmm.
Mm-hmm.
Mm-hmm.
Jennifer Allebach (:Prepare for death. Eat anything you want. Do anything you want within your capabilities. But you will die. There's no cure.
Aransas Savas (:you
Jennifer Allebach (:Two days after our formal diagnosis, I was offered a job at MDA.
Aransas Savas (:So you had already applied?
Jennifer Allebach (:Yes, Talk about amazing coincidence.
Aransas Savas (:you were working at MDA because... What the...
So
explain the connection between the MDA and ALS, I'll be honest, I didn't know until I started going to the MDA fundraisers.
Jennifer Allebach (:Yes.
Yes, MDA is an amazing organization and MDA looks at trying to find cures and servicing people with neurological diseases, Muscular Dystrophy Association, and they take care of children who have muscular dystrophy, all sorts of neurological diseases, including ALS. They take care of and fund research.
I was being heavily recruited while I was at Girl Scouts for almost a year to take on this job. I was very happy at Girl Scouts, loved my job. And my husband, who was an HR person, kept saying, talk to them. Nothing ventured, nothing gained. So I did. When all of this was happening, his diagnosis was in play. So he was diagnosed while they were offering me the job.
And I couldn't in good conscience take a new job when I didn't what was going to happen. So I called the recruiting firm who called the CEO and 20 minutes later they called me back. said, come on over. There's no better place for you. And that was where her exact words. So I joined MDA because MDA just has the
Aransas Savas (:Mm-hmm.
my gosh.
Jennifer Allebach (:most heartwarming people who just hug you with love and care and they would help people if they needed a wheelchair or they would help people with advice and love and care as well as research money. There are clinics, the doctors just are all over the country.
I met the son of the man who actually, this is not a wonderful thing to brag about, who signed Luke Eric's death certificate. I mean, there are people here who have been there for generations working on ALS. So I went to work for them. And they were so understanding for our family and for Brian and me. But eventually,
It got so difficult for me to work there and to be a caregiver through the pandemic. I closed up shop in New York and came home full time. MDA has the most amazing outlook on research for ALS.
Aransas Savas (:Mm-hmm.
it's doing. thankfully, I've been exposed to some of it and it is, it's an extraordinary organization made up people. How remarkable that timing is.
What has this journey been like for you as a family?
It's a big family. Everybody spread out, it sounds like. And this didn't just happen to Brian, and it didn't just happen to you and Brian. I know this impacted everyone.
Jennifer Allebach (:You
Yes.
It did and.
Everyone took it differently. We would FaceTime our children, FaceTime our grandchildren. There would be calls, letters, cards, but it was hard. Our grandsons, three little boys who live in Texas. They would come home and they knew how to use the Hoyer lift and they would...
take care of Pop-Pop and get him out of bed. And they would drive the wheelchair when he couldn't drive it anymore. And yet they would talk to him on FaceTime whenever they could. But their dad and mom were missing him. And they were missing the day to day. And my other two sons were having a hard time because...
Aransas Savas (:Hmm.
Jennifer Allebach (:They couldn't see the day to day and they didn't know what the impact it was having on me. My daughter is the same thing. This was their father and daddy's little girls. So we had a hard time communicating everything to them. they were older when this happened. They weren't around the house dealing with it as children. So it's very hard for me to be able to mother and grandmother with them as with my husband.
Aransas Savas (:Mm-hmm.
Mm-hmm.
Jennifer Allebach (:When Brian died, my oldest son was in Scotland on sabbatical and speaking. So that weighed heavily on us that we didn't have a normal existence as a family with.
terminal illness. My niece in Florida, she would get home as often as she could.
Aransas Savas (:Yeah.
Jennifer Allebach (:So
the kids were really impacted as adults. And I worried and worried about that. And I miss them. to be somewhat selfish as a mom, I wasn't seeing them then. We couldn't visit as much. When I could visit, our caregiver was so gracious. She would come and spend the night. and we don't have more than one caregiver. So she would be able to stay a limited time because of her family needs.
Aransas Savas (:Mm-hmm.
Yeah.
Jennifer Allebach (:So it was very difficult to be a long distance family. Yeah.
Aransas Savas (:Hmm.
Yeah, yeah, to be separated by
distance for sure. And it sounds like there was some tension for you personally in terms of probably what you expected to be doing in that chapter of your life, which was to pour into your adult children, to pour into your grandchildren. And then all of that caregiver energy was being repurposed to someone you thought you would be caregiving alongside
Jennifer Allebach (:But he was, by the time he was very ill, he had already really taken care of me. And Brian was a caregiver to me at first. When he first got it I came home from New York one weekend and he said, I'll never have to live without you, Jennifer, but you're going to have to learn to live without me. And he pulled out a
Notepad and it was written a whole list of things and started with family finances Investments kids trips maintenance yard gardens and I looked at it and he said yep Sit down and here we go and he taught me how to do all the things that were his contribution to the
marriage and things that I didn't generally do. So I now learned how to do all the finances and all the maintenance and what he usually did in the yard and what our goals were for the kids and our trips and everything that we needed to talk about. And we worked it all out. And then he kind of regressed into taking stock of his, his physical health.
And he's a quiet man. So once I got it all together, he would reflect and just let me take care of things. And I knew he was worse when he wasn't double checking my numbers. He let me do it. And I thought, he's not feeling as well. and then it was all on me.
Aransas Savas (:Hmm.
Yeah.
Jennifer Allebach (:So caregivers do it all.
Aransas Savas (:All of it, yeah.
Looking back now, what support do you wish you had had during that phase?
Jennifer Allebach (:Well, it's interesting because, and I believe the last woman said this in the other podcast, everything is not paid for. ⁓ Out-of-pocket expenses are very costly, and caregivers,
Aransas Savas (:Mm-hmm.
Jennifer Allebach (:they're not paid for by Medicare. They're not paid for. So it would be really great if the government would look into those sorts of things. And I've often thought about, advocating for those sorts of things to be paid for in the cases of terminal illness.
Aransas Savas (:Mm-hmm.
Jennifer Allebach (:Because that's where we saw the need I became exhausted, and it was hard. He was 200 pounds. And even though a Hoyer lift did most of the lifting, I was lifting as well. Feeding, all of the bathroom needs, everything was.
one person. It was either his caregiver who came or me. And she was cheerful and happy to do it. But she was tired too. she probably went home and felt exhausted. So I do think advocating on a national basis for paid caregiving, that would be huge.
Aransas Savas (:Mm-hmm.
Yeah, really to bring in professionals so family members can get a break.
Jennifer Allebach (:Yeah, we have a wonderful group of friends who called the book club, but It's like 12 couples they did everything for us They would come over and weed our flower beds and sit and talk to us and I have other friends who would just drop off with food our church would bring food and we had all that but I knew early on this was going to extend a while and unfortunately
people, they tap out.
Aransas Savas (:Yeah,
Jennifer Allebach (:yeah, it's not a six week recovery period.
Aransas Savas (:No. No.
Jennifer Allebach (:So there's
got to be a solution and ALS is the most tragic of these diseases.
Aransas Savas (:Why do you say that?
Jennifer Allebach (:I say it because
There's no time frame on it. he was in the hospital once and they said, okay, can you just turn over so we can adjust your sheets? And I'm like, he can't move. Even the healthcare people didn't know about ALS. So there has to be more awareness. And that's the problem with ALS. I think other diseases seem to have a little more awareness
Aransas Savas (:Thank
to me, it seems particularly tragic because it takes the body but not the mind.
Jennifer Allebach (:Exactly. It's the involuntary versus the voluntary muscles and people don't understand that. And Brian was able to speak till the very end, which was amazing. But he was a singer. He was the church musician. He was the choir director. So he could sing and I think his diaphragm was so strong that he was able to, he was able to,
Aransas Savas (:Yeah.
Jennifer Allebach (:Now he was very weak the last weekend before he died, but he actually whispered the Lord's Prayer before he died.
Aransas Savas (:And had he decided not to do the trach?
Jennifer Allebach (:He had a directive to do the trach until he saw the children get married. And we had four weddings during the pandemic. Our children all decided to get married.
Aransas Savas (:Four
Jennifer Allebach (:It was wonderful. And then after they got married, we sat down and I said, hey, bud, do you want to consider? And I said, let me know. And that's how we discussed things. and he said, time to change the directive. I don't want the trach. So we had the lawyer change the directive to a DNR. And that's how it ended.
Aransas Savas (:Mm-hmm.
I bet that was hard.
Jennifer Allebach (:Yes, but it was fully his decision.
Yeah, because that does prolong your life exponentially.
Aransas Savas (:sort of indefinitely, but with such limited personal freedom.
Jennifer Allebach (:Yes, yes.
And it would take additional caregivers.
Aransas Savas (:Yeah, exactly. You have to have 24-7 care.
Jennifer Allebach (:Yes.
Aransas Savas (:I'm sorry, that was a very personal question. just, I think it's to me part of why this disease feels so deeply tragic is you actually, you have to make this decision to keep a very specific.
Jennifer Allebach (:That's okay. I think it's important.
Aransas Savas (:type of life. And I think what your story illustrates is how personal that decision is depending on the life stage you're in.
Jennifer Allebach (:Yes.
Yes. I mean, he felt watching them all get settled with a person they adored was so important. And then it was time to let go, let God.
He was amazing.
Aransas Savas (:Sounds amazing.
Jennifer Allebach (:Yeah, he loved his children. He loved his grandchildren, he was a true hero. He never complained. The only thing he would do at the end of the night, I would put him in bed and tuck him in and he would just look at me and a tear would come down and say, I don't want this life. And I would say, I don't either, but.
We're stuck with it, so let's make the most of it. Yeah.
Aransas Savas (:Yeah,
and it sounds like you did.
Jennifer Allebach (:We tried.
Aransas Savas (:When I opened the show, I said that we talk about finding beauty on the other side of pain. This is still an open wound, I imagine.
Jennifer Allebach (:It will always be an open wound. I always question why him. we went to church all of the time. but I can't sit in church and look up at the choir.
Loft and not cry. So I don't go. I look at people and I think.
I don't have anybody. I'm alone. And I will be alone. I had the best.
So that's how I live.
Aransas Savas (:Hmm.
What does it mean to live in a way that honors him?
Jennifer Allebach (:I try to be the...
parent.
who would be making the decisions and giving the input that we would both give if kids ask. I'm trying to.
continue the life that we had.
And I'm trying to be happy. Because he was always happy. He was a half full and I'm always a half empty. So now I'm really half empty and I'm trying to like make it half full.
And half of the time I wondered, why not me, why him?
because he loves this house. He loved being in the backyard.
That's all he would do. And now I'm like, I gotta go in the backyard. So I'm trying to do it all, if that makes sense.
Aransas Savas (:Yeah,
yeah, it sounds like you're asking a lot of yourself. When you say that you're trying to be happy, what are you doing for you?
Jennifer Allebach (:Yeah, I'm trying. Yeah.
I have these two little guys that I spend two days a week with.
And they keep me really happy. They're two and a half. And they call me NeNe. And we play here all day long, And I spend time quilting, which sounds like an old lady, but I love it. And I do like to just sit and relax and think about.
Aransas Savas (:Hmm.
Hehehehehe
Great.
Jennifer Allebach (:things and read and I travel a lot I see my kids.
life I want it. And it's not the life anybody who loses somebody to ALS want it.
Aransas Savas (:Right.
No. No.
Jennifer Allebach (:So
that's, I mean, that's the problem.
ALS just depletes you. I was depleted before he died. And deplete it in a different way after he died.
Aransas Savas (:Yeah, yeah. And it sounds like you're doing the things you and Brian plan to do, but because you're doing them alone, that difference is eating a lot of the joy.
Jennifer Allebach (:Mm-hmm.
Yeah, it's true. It's true.
It's true, but it'll get better. I won't get over it. No one does.
Aransas Savas (:Mm-hmm.
Right.
Jennifer Allebach (:No one does.
Aransas Savas (:What are your hopes for yourself in the coming years?
Jennifer Allebach (:Well...
I want something.
to come out of this, there's two things that I want, aside from family I've just become involved with Girl Scouts in a different way, in a global way, the World Foundation, and working with 11 million girls around the world.
making sure that we get funding for girls in 153 countries to bring leadership development around the world. That's something that I feel strongly about. But I feel like there's something left to be done from my perspective for ALS. And I want to...
I want to help people.
there's just little things to help people and I don't know exactly how or what.
Aransas Savas (:Yeah.
Jennifer Allebach (:I have one guidebook that I think was written in the 90s, the ALS handbook. But like there's things to do and I don't know if it's finding funding for it, fund it myself, but
Aransas Savas (:Hmm.
Jennifer Allebach (:there's a lot of hints to share and I haven't shared them yet. So I don't know how to do that.
Aransas Savas (:Yeah.
I think that's so powerful what you're saying there because when I think back to the 100 plus conversations we've had here and I look at them zoomed out as research, one of the key themes that I see in these stories is that we alchemize pain into purpose.
And I hear that echoed in your story. what that does then is it makes it meaningful in some way. Doesn't make the grief go away, but it does allow you to use it to help others.
Jennifer Allebach (:Mm-hmm. Mm-hmm. No.
Yes, yes. I mean, there's probably just, I mean, it just sounds so stupid, but I didn't realize that you couldn't turn a wheelchair at a right angle, did you?
Aransas Savas (:No.
Jennifer Allebach (:I mean, I didn't know that, so I had all the garden paths redesigned into curves.
Aransas Savas (:Wow.
Jennifer Allebach (:and he
died too soon to use some of them, but it's like, those are the kind of things. And then there are people who will do that for you.
and who will do it willingly and cheaply or free. So is there, like, is there a way?
Aransas Savas (:Where is that? Yeah.
Well, here's what I will tell you. I promise you, if if you consolidate and capture those insights, I will gladly help you figure out what to do with them and how to share them. And I suspect just by saying this out loud, you will start to attract other people.
who want to help as well. And you have a pretty remarkable legacy of helping others. And one of the things I've learned about Uplifters here too is that they have gained an extraordinary amount of community capital. It's one of the reasons so many people listen to so many of our episodes. Because the people who have helped everyone else, everyone else wants to help them.
And so I feel pretty confident that if you decided you wanted to capture these and create something useful, there would be people who wanted to help you make a difference with it, including me.
Jennifer Allebach (:That would be great. I mean, as simple as, Like when your husband gets ALS, you identify Who are you calling at 3 a.m.? Who do you call in the supermarket when you see somebody you don't want to talk to so they can come pay for your groceries and you can run out? Like there are things you need.
and you don't realize you need them.
Aransas Savas (:But if you hear somebody else say it, you can have that awareness more quickly.
Jennifer Allebach (:They tried exactly.
have them all in a notebook. Like they tried to get me, the one person I talked to tried to get me to install a portable bathtub that you blow up and you put your ALS patient in and you just put a little curtain around it and you put a garden hose in to bathe him. And I'm like, what?
Like a pet? And I was like, why would I do that? She goes, well, you have to get a caregiver. How can you do that in a renovation? I'm like, how do you know what I can do? And I mean, it's like, no, you can't tell people what you can do. You have to find a way to do it. Right? All right. I'll get busy.
Aransas Savas (:Mm-hmm. Yeah, that's right. Yeah.
All right, yeah, I'm excited to see what you come up with. And I feel like if you were to share what you've created with other people who've been in your situation, it could be strengthened through the combined experience.
Jennifer Allebach (:Yes, because there's many more ideas now.
Aransas Savas (:And like, what would a piece look like that you could say was co-created by 25 primary caregivers of ALS? And then it's just a matter of getting it to the people who need it. And there's lots of ways to do that.
Jennifer Allebach (:to meet.
That's amazing.
Aransas Savas (:Like what's needed at different life stages and for you to write from your unique perspective as a primary caregiver of a spouse, that is something unfortunately many, many, many more people will have to learn how to manage. But yeah.
Jennifer Allebach (:Unfortunately.
Aransas Savas (:Perhaps through your experience though it can be a little easier for them.
Jennifer Allebach (:I like that.
Aransas Savas (:I love the smile on your face.
Jennifer Allebach (:Well, you've just helped me find my
cup filler.
Aransas Savas (:Hmm. Yeah, the glass is half full and half empty, kind of all at once, isn't it?
Jennifer Allebach (:It is.
With ALS it is.
Aransas Savas (:I'm really, really glad we met. I can't wait to share what you create. And I'm here, truly, truly. I happen to be really, really good at getting things done.
Jennifer Allebach (:I am too.
Thank you. I'll get working on it. Okay.
I have a feeling you are.
Aransas Savas (:So you just let me know I'd love to do that with you. I'd be honored. It was so nice to meet you.
Jennifer Allebach (:Thank you. Thank you.
