“You want to allow for as much function and independence as possible, but you’re feeling like you need to stand by in case it's not working, or in case your help is needed.”

Ann and Layne Oliff’s ALS journey officially began in 2020, although the first signs of what was to come emerged nearly a decade before. In hindsight, Layne believes he can trace his first ALS symptoms back to 2012. After years of doctors’ appointments and tests, he was diagnosed with PLS in 2017. In 2020, he began experiencing lower motor neuron symptoms, leading to a new diagnosis of ALS. Facing this new reality, Layne and his wife Ann moved out of their house and into a smaller apartment that would be easier for Layne to get around in.  Ann was fortunately able to retire from her career as a massage therapist to care for Layne full-time.

In honor of National Caregivers Month, Ann joined the ALS Therapy Development Institute (ALS TDI) to talk about what it’s like making the transition to caregiving for a loved one, the challenges she has faced, and how she navigates the constant changes that come with ALS.

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ALS TDI: How have you adapted to the realities of being a caregiver, particularly a sole caregiver, for your husband?

Ann Oliff: Well, I think it's a constant adaptation, with this disease especially. With ALS, people progress. Even the speed of progression shifts. From a caregiving perspective, we’ve been mostly ok. He's a slow progressor, so for a long time we plodded along well. And then we hit a point where I had to ask myself, “are we ready for the future?”

With caregiving, you’re always looking to see – “What do I need?” “What do we have?” “What do I need for them?” Not just thinking in the now, but thinking for the later.

Things also get quieter. You can't go as many places. We still get out sometimes, but you're always constantly checking for accessibility of places. Where we’re at now, I consider myself lucky that I’m still able to get out for a couple hours here and there. I can run out to the grocery store, just get out and come back. I’m constantly attached to my phone, just in case. And that’s only as long as he promises to just be in his chair, to not get up and go anywhere. I used to be able to be away for longer, but now I just get out in stints. I feel like I have to limit my trips. Before I would be able to go out for the evening with friends – I can’t do that anymore, because he needs help with bedtime things.

I think right now it's a lot of waiting. Waiting for whatever help he’ll need next. For instance, today, he can tie shoes. But I’m waiting for the sign that says I need to tie his shoes. You want to allow for as much function and independence as possible, but you’re feeling like you need to stand by in case it's not working, or in case your help is needed.

Can you say a little more about where things are at now for you? What do you need to help with daily?

So right now, I'm helping with most everything. He can still eat, but we try to make it as easy as possible. Spoons and forks are tough, so we go for things that are easier to eat or hand-held. He can no longer just go into the kitchen and get something out of the fridge, he just doesn’t have the arm strength. So, I’m doing all the meal prep and giving him his meals. If it needs to be cut, I do that.

He also needs help with bathing now. He gets into bed independently, but it’s via a wheelchair that’s pulled up to a rollator, and I stand by and assist with one hand on him just to make sure he doesn’t fall. He needs more help getting out of bed. He can still push himself in and out of the car from his wheelchair, but I need to put his hands where they need to be so he can steady himself.

It's not total care, yet.   It's his arms that really are the biggest problem. He still has a recumbent bike. If I can help him get onto the bike then he can cycle for an hour, and he doesn't need me for any of that. And then I just need to help him get off.

You mentioned needing to plan for the future when it comes to caregiving. What sort of things are you thinking about preparing for?

At first, you’re at a point where you don’t need assistive devices. And now we’re getting to the point where we need stuff.

Take something even as simple as a shower chair. Do I just go get a shower chair? What if we get to a point where transferring to that shower chair is tricky? Do you get a shower chair that can roll over a commode? That will roll right into the shower? Those are the kinds of things that I’m thinking about. I’m thinking: “Ok, right now, he can stand. But what if tomorrow he can’t?” I need to make sure I have something that might help, not just for right now, but also if more function is lost.

Becoming a sole caregiver isn’t something everyone is able to do. What circumstances do you think have allowed you to take on this role?

The ability to be available, to leave my job and retire, that is huge. Not everybody can do that. But the flip side, if I had to get a caregiver, we'd be paying. So even if I was working, I’d have to pay for a caregiver. There's a financial tradeoff there somewhere. No caregiver is free.

I was a nurse and a massage therapist; I've always been a caregiver to some degree. That helps. I think many people step into this role whether they've had that experience or not. I think that’s made it… I don’t think easier is the right word, but more natural.

I apologize in advance, because this is a very open-ended question, but what more could we be doing – as an ALS community, as a medical establishment, or even as a society – to support caregivers?

It’s interesting because, right now, we’re still swimming. We’re still above water. But I think about when you get to a point where you can’t get out, where you can’t be a sole caregiver, where you need help. And health care is very broken. I read all the time about trying to find somebody to help, trying to pay for it, trying to find someone who knows what they’re doing. It’s not a common situation, dealing with ALS. It’s a huge problem.

We’re not in that situation yet where we need that help. But I do think we’re going to need it. Are we going to be able to find it? If I need an in between I do have family and friends I can pool from, until I’m able to get help. But I think it’s a big question.

I think the mental health component of this is also a big thing. I think it’s lacking from ALS clinics and from the support you get from your ALS team. When Layne was diagnosed and he was trying to find a social worker or psychologist, someone to talk with, that had some experience in this arena, that was a real challenge. We couldn’t find a great fit, couldn’t even get good recommendations. That, to me, seems like it’s always been lacking, and I think it’s hugely important.

People are always looking for equipment. I sometimes think there should just be one big warehouse where people could get equipment and get rid of equipment when they no longer need it, and someone could use it. Now people can go on Facebook Marketplace and all that kind of stuff. The other night I was thinking, what if there was just one big warehouse where you could say, “I don’t need my money back for this cane, or for this rollator, or whatever.” Where you could just put this stuff in one central place, not in each little organizations’ loan closet. I feel like there’s some opportunity there.

Thinking back on your experience thus far, is there anything you would want to say to someone reading this who’s at the start of their caregiving journey?

I would say, buckle up. Take a breath and buckle up. But take a breath and enjoy the moments that you can. I know people say to get your ducks in a row at the beginning, but there will be a lot of getting your ducks in a row as it goes. So, take a breath, and find people, find support. Find people and try to keep people who want to help. Reach out to people. It’s the hardest thing to do to ask for help, but people want to help, and you need help.

Learn that you can’t do everything. I have learned to say no to a lot of things that I never would have said no to before, because my cup is full. Know what you can take on, and know what you can’t take on, because sometimes saying know is a hard thing to do. And I’m not talking about from a caregiving perspective. It’s things like, babysitting for the grandkids at 10:00 at night, that you maybe you could do before. But now it’s really going to set you back.

I had to learn to “no, sorry, I can’t do that. Normally, I would, but my life is different now.” And you must learn to be ok with that ­­– with setting those boundaries to keep you sane.

Obviously, this is a terrible situation, one that no one wants to be in, but with those caveats, is there any part of caregiving that you find rewarding?

Not rewarding, no. That’s not the right word.

It’s not like I go to bed every night and think “I didn’t sign up for this.” If I had to do it again, I would. But I’m struggling with the word rewarding, like I think I deserve some sort of award.

Gratifying is a better word. In the sense of gratifying if I have been helpful in easing the day, moment, journey. Gratifying if I have solved a problem, found a new way of doing something that works or works better. And following that thread – grateful to be able to do what I can and to hopefully make a positive impact in this journey. 

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