Loving Someone with ALS (from Someone who’s been there)

I don’t have perfect advice — just things I’m glad we did, things I wish I’d known, and things that surprised me along the way. ALS looks different for everyone, and you’ll find your own rhythm.

Take what’s useful. Ignore the rest. Be gentle with yourself as you go.

1. Grief starts early — and that doesn’t mean you’re giving up.

One of the hardest things to understand at the beginning is that grief doesn’t wait.

You may find yourself grieving:

• Small losses

• Future plans

• Versions of life you assumed were guaranteed

This can happen while the person you love is still very much here — and that can feel confusing or even guilt-inducing.

This kind of grief has a name: anticipatory grief.
It doesn’t mean you’re losing hope.
It means you’re human.

You can hold love, sadness, laughter, fear, and gratitude all at the same time. None of those cancel the others out.

2. Try to extend grace to family — even when it’s hard.

This is one I wish I’d understood sooner.

I spent a lot of time wishing other family members would do things differently. I judged them for not doing enough, for not showing up the way I thought they should, for handling things in ways that didn’t make sense to me.

Looking back, I realize I was carrying so much anger about ALS — and I couldn’t be angry at Marc. So some of that anger landed on the people around me instead.

Everyone copes differently.
Some people lean in.
Some people pull away.
Some people avoid.
Some people freeze.

None of it means they love less — it often means they’re overwhelmed, scared, or unsure what their role is.

If you can, try to leave room for difference. It doesn’t make the situation fair — but it can make it less lonely.

3. Do the hard, adminstrative decisions earlier than feels necessary.

ALS brings an enormous amount of decision fatigue — medical choices, equipment timing, paperwork, permissions, logistics:

• Care preferences and schedules.

• Equipment planning

• Legal and medical paperwork

• Account access and permissions

Doing this earlier isn’t pessimistic — it’s protective. It reduces stress later and creates space to focus on being together instead of constantly deciding.

4. If you can, get help earlier than you think you need it.

(This may not apply to everyone — but for many families, it matters a lot.)

If it’s financially possible, I can’t recommend this enough.

As ALS progresses, everyday tasks become harder — eating, getting dressed, going to the bathroom, getting into bed. When family members take on all of that care, the relationship quietly shifts. You become a caregiver before you realize it, and it can crowd out time to just be together.

Having professional care earlier allowed us to:

• protect quality time

• reduce resentment and exhaustion

• stay partners, children, friends — not just caregivers

There will be a time when care is unavoidable. If you can outsource some of it early, it gives you more space to love.

5. Their life slows down. Yours keeps going. Invite them into it.

This one surprised me.

Their world can get very small very quickly — physically and socially — while yours keeps moving forward. We found it really meaningful to build predictable, recurring things to look forward to.

What this looked like for us:

• Weekly Monday brunch — same place, same time. Hard day when everyone goes back to their life after the weekend. II brought my youngest son, Eli, and his caregiver brought him. Occasionally we surprised each other with guests, which was easier than conversation and added a new dynamic. It also became special one-on-one time with my youngest that I never would’ve had otherwise.

• Jaguars football games — Alex took him to every home game so he could just be there with his son, cheering on a team he loved.

These weren’t big, exhausting, novel outings. They were anchors. Familiar. Reliable. Normal.
Consistency mattered more than novelty.

6. Playing with kids gets harder — connection doesn’t have to.

As mobility and speech change, it’s easy to think shielding kids from the disease is the right thing to do. I found that the time he had with his grandkids was priceless.

One thing that worked beautifully for us was finding one special activity that:

• the child loved

• the child wasn’t usually allowed to do

• belonged just to them together

What this looked like for us:

For us, it was YouTube videos on his Tobii (eye-controlled computer). They called them “bad shows.”

Jay was 3–4 at the time, and I was genuinely shocked by how well he understood that this was their thing. We had banned YouTube at home because he used to cry when we turned it off — but with Marc, he never did.

He would cuddle up next to him and watch. When it was time to stop, he’d give him a big hug and climb down. No tears.

Kids are far more adaptable than we expect. They don’t need perfect explanations — they need consistency and love.

7. Technology can be a lifeline — emotionally, not just practically.

The Tobii (eye-controlled computer) was huge for us.

Beyond basic communication, it allowed him to:

• take weekly chess lessons

• stay mentally engaged with books, news, and shows

• feel capable and independent in small but meaningful ways

Games, lessons, routines — anything that gives structure when the body is limiting — can be incredibly grounding.

8. Capture their stories sooner than feels urgent.

This is one I’m endlessly grateful we did.

We hired one of our babysitters — a kind, curious kindergarten teacher — to come once a week and ask questions from StoryWorth. She wrote everything down for us.

Now we have:

• his stories, in his words

• a record of what mattered most to him

At the time, it felt like another thing. In hindsight, it’s one of the greatest gifts we gave ourselves.

9. The fear of “what happens when…” is often worse than the reality.

I spent a lot of time thinking:

We can handle this… but what happens when he can’t do that?

What surprised me was that with each stage of progression, it somehow became okay.
Not easy. Not great. But doable.

You adapt.
They adapt.
The bar shifts — and love stretches.

Try not to borrow too much fear from the future. The present usually finds its footing.

10. There is no “right way” to do this.

You’ll question yourself constantly.
You’ll do some things beautifully.
You’ll miss things you wish you hadn’t.
You’ll get tired.
You’ll still find moments of joy.

All of that can coexist.

-Sarah Litt