Lindsay Rodney
Caregiver for her husband, Adam, who was diagnosed with ALS
Hi Lindsay, what’s your story?
My name is Lindsay Rodney and I grew up in a small town outside of Ottawa, Ontario, Canada. I’m currently the full-time caregiver for my husband Adam, who was diagnosed with ALS in February 2021.
Adam and I met at my first “real job” at a construction company, he walked into the room and in my head, I was like “wow, who’s that?” We started chatting at work back and forth, until one day he asked for my phone number. I said sure, and then he said to stay by your phone for the next few minutes, to which I got a text asking me to a hockey game. I guess he couldn’t do it in person. But needless to say, I went on that date and we’ve been inseparable since. We moved in together 6 months later and married in September 2012.
You shared with me that Adam was diagnosed with ALS just before his 43rd birthday. What was life like before the diagnosis?
Before Adam’s ALS diagnosis we were struggling to grow our family. In 2016, we decided it was the right time and started trying. After a year of trying, we sought some help and went to our Doctor - luckily we became pregnant in July of 2017. However, in August we miscarried. We would go on to miscarry again in December of 2017, and again in August 2018. We were heartbroken. We were so ready to grow our family but it wasn’t working. Our hearts were crushed and it took a toll on both of us.
After much exploration and Dr.’s appointments, in July of 2019 we found out we were pregnant for the 4th time, 3 days before I was supposed to go on a business trip to Australia. We contemplated if I should go or not, but we’d put our lives on hold for so long, that if I was going to miscarry again, I knew what to expect. However, this time it stuck and in March of 2020, we welcomed our beautiful girl, Frankie.
We were on top of the world, finally having our little one earth side and I loved being on maternity leave. I didn’t know if I would make it here but here I am, caring for this little girl who is perfect.
Can you share about the initial diagnosis?
I’ll never forget, it was a Wednesday, Adam was at work, I was at home with Frankie and our Dr called and said can you go to the hospital tonight? We’re going to get you in so that we can get these tests done faster. I said yes, called Adam at work, and he came home right away. We packed his bag and asked my dad to drive us. We tried to keep the conversation light, but deep down we were both terrified. We both had ALS at the back of our minds, and we both were scared shitless.
We arrived and got Adam checked in. He was nervous. I was nervous.
Due to covid restrictions, I couldn’t stay with him, I had to go home. Leaving him there that night, was heart-wrenching. He texted before I was even out of the city to ask to come home. But I couldn’t get him, I knew we needed these tests done.
At 4:10pm the next day I get a call from Adam, “Lindsay, they said I have ALS,” I heard through the phone. I dropped to the floor in the foyer of my parent’s house and sobbed. I couldn’t believe what I was hearing. “You have what?”
I couldn’t get to him fast enough. My dad drove me back to the hospital and he wasn’t going fast enough. I needed to get to him. He’s alone in a hospital room. By himself. Who delivers that kind of news to someone who’s alone??? Get me to him.
I finally got there and I just broke down. He broke down and we hugged for hours. I stayed with him that night, as he needed to complete an EMG test the next day to confirm the diagnosis.
We talked about the future, our past, we laughed, we cried - we didn’t want to leave each other.
Did Adam show early signs of ALS? Or did you suspect anything before his diagnosis?
In August of 2020, Adam started to have weakness in his hands, but just thought it was tiredness. During this time all of his symptoms were attributed to severe diabetes. So we were hoping, that once the diabetic medication started working that these symptoms would go away. Of course we Googled his symptoms and ALS came up, but it wasn’t explored. By November, he was having speech issues and by January he could no longer carry Frankie in his arms.
He finally went to the ER, where the Dr said it could be related to the diabetes OR it could be neurological, so they referred us to a neurologist. Keep in mind, this is all happening in a lockdown during the peak of our third covid wave. A couple weeks later, we saw a neurologist over zoom and he ordered some tests. But I knew things were changing too quickly and that we needed answers sooner rather than later, so I pushed our family Dr to help with fast-tracking the process.
What has life been like as the disease has progressed?
The first 5-6 months after diagnosis seem like a blur. People coming in and out, appointments every day, paperwork to fill out, registering for this and that, making sure the right people are notified, etc. There was so much to do. There was so much progression, from walking with a cane, to walking with a walker, then only transferring from wheelchair to stair glide, then finally moving him to the main floor with a hospital bed and hoyer lift. It all happened so fast.
Not to mention I was gearing up to go back to work off mat leave. I was only back at work for about four months before I took a leave of absence to take care of Adam full-time. Thankfully, my employer has been AMAZING and so supportive during this time.
“Being the sole person who has to deal with every decision is the hardest. I’m responsible for the happiness and quality of life for everyone and some days that takes a toll on me.”
Anticipatory grief can include grieving someone who is physically alive, but psychologically different. Can you talk about some of the secondary losses associated with your husband’s diagnosis?
I’m grieving the life I thought we would have together. I wanted to grow old with him. I wanted him to teach Frankie how to ride a bike, play baseball, go fishing and all of that is taken away. I’m grieving doing things as a family, planning family trips, taking her to the sugar bush or the park.
I wanted him to see her graduate, walk down the aisle, and have grandbabies (if she chooses to). I want him to be here for all of those moments, but I know I will have to do them alone.
Adam has bulbar ALS which affects the neck muscles, including swallowing and speech. One thing I miss the most is his voice. I miss having a conversation with him. I miss hearing him say how much he loves Frankie, or me. While he can use his speaking device to communicate, it just isn’t the same.
What has it been like, transitioning from wife and mom, to now caregiver as well?
I think for me there was never a doubt that I wouldn’t be Adam’s caregiver. I knew that I wanted to be there with him during this time. For me, it’s being the sole person who has to deal with every decision relating to Adam, Frankie, and myself, is the hardest. I’m responsible for the happiness and quality of life for everyone and some days that takes a toll on me.
What is a typical day for you?
A typical day for me starts when Frankie wakes up. I get her dressed and ready for the day, make breakfast (and coffee for me, of course), have her play for a bit, usually talk to the person who’s here doing overnights for Adam for a bit. If it’s a day she goes to daycare, I’ll take her over, if it’s a day she’s home I have another person come to help me for the day, so I wait for them.
Adam gets up at 9am, his Personal Support Workers (PSWs) get him ready for the day. I get his pills and feeds and he usually watches sports for a good portion of the morning. Then he heads for a nap for a few hours. If Frankie is home I’m getting her lunch and then she’s down for a nap too.
This is when I usually get an hour or two to myself, responding to emails, setting up appointments, making phone calls - this is when I get things done.
When Frankie gets up from her nap, the person here helping will usually take her outside and get some fresh air while I get Adam up. He gets more pills, then another feed. Then we watch something together before I need to get Frankie’s dinner ready.
Dinner time for everyone, Frankie eats and then I feed Adam (if he feels like having anything).
Then it’s time for bed for Frankie - bath, pj’s, stories, and bed.
Adam gets his nighttime pills, we watch Wheel of Fortune and Jeopardy, then bedtime for Adam.
I usually chat with the person who’s doing overnights for a bit and I aim to be in bed by 9pm.
That’s a lot to handle. Any words of wisdom you would give to others in a similar situation?
If you’re in a similar situation, I’m sorry you’re here. I’m sorry this disease has touched you. I’m sorry that you’re part of this group now. But know, there are so many of us out here willing to be your support.
All of the information, all of the things that need to be done, just everything at the start is so overwhelming. You can feel a range of emotions as they’re all ok. First things first, connect with your local ALS chapter, they will be a great resource and advocate for you. They also usually have a loan pool of equipment that you can use free of charge (this is huge!).
One piece of advice I got from someone in those early days when my head was spinning was, get the equipment before you need it. I didn’t understand what that meant until I did. Try to see what you’re going to need a month out, two months out, and start getting it now. It can take a while to get what you need but if you can anticipate your needs, it’s so helpful.
What has been a specific low point or struggle you’ve experienced?
One of my low points was realizing that I’m not superwoman. I know that sounds weird, but I’ve been running on adrenaline for so long, being everything to everyone, making our household run, that I realized I couldn’t do it anymore. Something had to give.
I love Adam so much, but I’m not good for him if I’m short and snippy and not providing the best care I can.
How did you manage to find joy during those low moments?
Every time I’m having a hard time, just seeing Frankie and Adam together makes my heart smile. They’ve created such an amazing bond. The first thing she wants to do when she walks in the door is show Adam the craft she made for him at daycare, and it’s the highlight of his day. I’m so grateful that they’ve been able to create something so beautiful out of our really crappy situation.
What do you want others to know about ALS?
ALS is 90% sporadic, meaning in 90% of cases there’s no known cause. Only 10% of ALS cases are genetic. This means there are more cases of people with no known cause who have ALS.
In Adam’s case, he’s lost the ability to speak and move, but his mind is as sharp as ever. He’s still in there, and I’m so grateful for eye gaze technology that allows Adam to communicate with me.
How can a person best be there to support someone whose family is going through something similar? Any specific ways you’ve been supported that have been helpful?
If you want to help, be specific in how you can help. I know that saying “let me know if you need anything” is the easiest, but be more specific. This puts undue pressure on the person who needs your help to find something you’re willing to do, so do it for them. Give them a list of 3 or 4 specific things you’re willing to help with:
“Can I organize your lawn care for the summer and snowplowing for the winter, my treat?”
“Can I drop off dinner on Thursday around 5pm?”
“Can I pick the kids up from school on Tuesday and feed them dinner and bring them back for bedtime?”
“I’m running out tomorrow to do errands, anything you need?”
“I have a friend who does in-home pedicures, can I book you one?”
You get the idea, be specific, don’t leave the person guessing on what you’re able to do for them.
Any resources that were helpful for you that others might be able to utilize?
What brings you joy in your days now?
Spending time with Adam and Frankie having dance parties in Adam’s room.
Anything else you’d like readers to know?
Just know you’re not alone. Being a caregiver to anyone with a terminal illness can be so isolating, it’s groundhog day every day. Lean on people who are willing to support you, it may feel uncomfortable to accept help, but you can’t do this alone.
Want to learn more about Lindsay and her story? Check out her Instagram account @therodneyfam