When someone is diagnosed with ALS, the priority for care and support is always going to be the patient. What many don’t think about initially is the caregiver, the critical role they play and how closely tied to the patient they are and will be throughout the ALS journey.
Connecting ALS recently sat down with Ann Larson to learn more about her experience as an ALS caregiver for her beloved husband Dave, and better understand the challenges she encountered during their three-year journey with the disease.
The transcript below has been edited for brevity and clarity.
Can you take a moment and just introduce yourself and give us a sense of your connection to ALS?
Well, my name is Anne Larson, and my husband Dave Larson was diagnosed with ALS in his mid-forties. Dave was a very active, athletic, energetic husband and father. He grew up playing soccer. He was a division one soccer player. He was a super involved dad. He was a coach. He was a scout leader at the time our boys were 12 and 15 years old, and we were just really caught off guard. And we started to embark on a journey that profoundly changed our lives.
We've heard from so many people that we've had the privilege to talk to on this show about that sense of shock upon the diagnosis, and once you had confirmation of the diagnosis, how long was the journey from there?
Well, when we had confirmation, it was about three years. So, we knew something was wrong prior to that. And getting confirmation was both a relief and a blow at the same time. And I remember coming out of the hospital and getting in the car and coming out of the parking garage, and he was driving, and we didn't say a word, not one word to each other. And I remember coming down the ramp and looking around at all of the busy things taking place around the hospital. I remember seeing a woman in a lab coat across the street. I remember seeing two other younger professionals waiting near the bus stop, and you just start to think, wow, they're just going about their day. And I think our life just ended as we know it.
I reflect back the ALS Focus survey recently looked into some of the challenges and some of the shared experiences of caregivers in the ALS community, and one of the things that really came home to me about that was just the level of stress that caregivers face on a day-to-day basis, and throughout their journey as caregivers. Is that something that you can reflect upon looking back on your experience?
Yeah. Yeah, I can. I think as caregivers we do anything to make our PALS more comfortable, to see them smile, to bring a little bit of joy to their life. And sometimes it's really, really hard, because we have so many emotions going on inside of ourselves, how our family's changed, how our lives changed, how we know what's coming and we're going to miss them so much. And the exhaustion and the sleep, and he could no longer eat. And I remember, I didn't want him to smell food, so I would eat a hardboiled egg and I would go inside the laundry room so he didn't know I was eating because, I felt guilty. And I remember one specific time that I really lost it. So, if you're a caregiver out there, it's okay sometimes to lose it.
So, he passed away on October 31st. It was maybe early October, and the weather was changing and it was getting cool, pretty cool. And I remember that particular day was really ugly. It was raining sideways, and I had these tomato plants and I hadn't been able to tend to my garden in a long time so they were wild bushes of tomatoes. And I remember walking out of the sliding glass door in the bedroom into the rain, and I didn't want him to see me, he was in the bed and I had a caregiver there on that particular morning, someone that came in a couple hours in the morning. And I looked at her, gave her a head nod, and said, “I'll be right back.”
And I walked out into the rain, it was freezing cold. And I looked over on the side of the house and there was a baseball bat, one of my kids' bats. And I picked it up and I walked to the back of the garden and I just started hammering the snot out of tomatoes, one after another, they were just flying like crazy. And it wasn't enough to kill every last tomato on the vine, but then I started smashing the chicken wire and the rain got harder, and it was colder and I was crying. And after I got that all out of me, I calmly turned around, sat down the bat, walked around the house so he wouldn't see me, went in the side door, down to the basement, took a shower as I was complete wreck after that covered in tomatoes and tears, and came back up and put on my smile and carried on.
What advice would you have for someone who may be at the beginning of their journey as a caregiver, for someone living with ALS? What tips, or what grand advice would you give them who may be listening at home?
It's hard because everybody's journey is different. So, I don't know if what I would say to somebody would fit into their lifestyle. I think as a caregiver, what I would say is you are stronger than you could ever imagine, and you may not know it at the time, every milestone that we hit like, oh boy, we need to get a catheter. And I thought people would say, oh, you need to learn to change that catheter, that was like a surgical one, that went through your stomach. And I would think, oh my God, there's no way I could ever do that. If that time comes, I can't do that.
And the next thing I know, you just take a deep breath, not only can you change that catheter, but you're doing it in the living room while you're cracking jokes and talking to your son and same thing with the feeding tube. At the end, here I am changing a feeding tube in the living room and things I never thought I could do, that next milestone. And I would say to caregivers, you can, you can handle it.
Don't be afraid to use your resources, use all of your resources. So, it's so nice to listen to some of the prior members of your podcast, and you have patient advocacy organizations on, reach out to those organizations, they're so important. I know that when my husband was first diagnosed, the very beginning, we were given information about The ALS Association. We were like, okay, we don't need that now. And I think everybody, a lot of people feel like that way first, because you're in shock. Well, we then got involved with The ALS Association and they became such great resources and friends of ours. They became such an important part of our life and helped us in so many ways. So, I would say use those wonderful resources out there.
Special thanks to Ann Larson for sharing her personal journey as caregiver for her husband, Dave. To continue to follow stories about people living with ALS in the community and learn more about the disease, follow our blog at als.org/blog.
Stay up-to-date on the latest information about ALS care, disease management and resources to help you navigate your ALS journey by subscribing to our quarterly e-newsletter, Care Matters.
Listen to the entire podcast episode, "Family Caregivers Month...", on Connecting ALS or wherever you listen to your podcasts.
My husband was just diagnosed. We are in shock. So many unknowns!
So sorry, Susan. Your local ALS Association chapter can provide resources, information and support. Find their contact information at als.org/chapters
Yes, I know that shock. My husband was diagnosed in August '21. I am so sorry; just want you to know you are not alone. We have received unbelievable help from the Portland VA and ALS Assoc.
I am so sorry Susan. I also know that shock, as my husband was diagnosed in August of 2021. We have received so must help from the Portland VA and ALS Association of Oregon. Life will never be the same, but we are grateful that we are not alone. One day at a time.
My loved one was diagnosed in May of 2016 and we are still battling ALS today, jumping new hurdles as they arise. We are just 34yrs old. We have 3 children: 13, 7 and 5. Everyday, somehow, all my moments add up to one day at a time. I know our lives will never be the same, but the memories we've made will last forever and for that, I thank God! Be strong PALS!
Thanks for sharing. My wife had Bulbar Onset ALS and was gone a year and a half after being diagnosed. She'd had it a year and we had no idea what it was. Be tough and hang in there, caregivers. Your loved one will appreciate it more than you know.
Join the conversation. Please comment below.