Visiting a Family Living With ALS During the Holidays

Christopher, our cousins and friends and I at Christopher's last Christmas.

The holidays are often described as magical, a season of warmth, tradition, and being together. But for families living with ALS, the holidays carry a weight that many people never see. They are beautiful, yes. But they are also emotional, complicated, and exhausting.

If you are visiting a friend or loved one whose family is affected by ALS this season, your presence can mean more than you know. Here are a few things to keep in mind as you walk through their door.

Every Holiday Matters, More Than You Realize

When someone you love lives with ALS, time takes on a different meaning. Holidays aren’t just holidays anymore; they become milestones, memories, and sometimes quiet reminders of what is changing.

Families living with ALS often hold their breath a little each season, knowing that this year’s celebration could be very different from last year’s and it might be the last the family experiences in the same way.

That makes your kindness, your patience, your understanding, and your presence profoundly important.

Caring for Someone With ALS Is Hard, Celebrating Can Be Even Harder

Families affected by ALS want to celebrate just like everyone else. They want to host, to laugh, to participate in the traditions they’ve always loved. But behind every holiday moment, there is an invisible layer of effort.

Caring for someone with ALS is physically demanding. It is emotionally draining. Even getting ready to have visitors can take hours of preparation.

And yet, even in the hardest seasons, there are moments of joy worth fighting for.

Christopher with our family Santa

A Personal Story: Making Holidays Full of Flavour

My brother Christopher loved to eat. Food was joy for him — connection, tradition, comfort. As ALS progressed and swallowing became harder, sharing meals looked very different, but we found ways for him to still enjoy the foods he loved.

Sometimes that meant puréeing dishes. Other times it meant cutting food into very small pieces, adjusting textures, or watching closely while he ate to ensure he was safe.

It wasn’t effortless. It wasn’t simple.But it meant he was still part of the celebration — still tasting the season with the rest of us.

Those small adaptations helped preserve something bigger: his dignity, his happiness, and a sense of normalcy during a time when so much else was changing.

Families Want Joy, Even When It’s Hard

One of the misconceptions we often hear from visitors is:“We didn’t want to intrude,” or“We thought it might be too sad.”

But families living with ALS want joy.

They want company. They want laughter and stories and warm moments.

Even if celebrations are shorter, quieter, or filled with medical equipment… there is still room for joy. Often the most meaningful moments are simple ones: sharing a meal, reminiscing, listening to music, or just being together.

Remember: Their Mind and Heart Are Still Fully Theirs

ALS affects the body not the mind. People living with ALS are present. They understand everything. They feel everything. They notice who shows up and who pulls away (this is especially heartbreaking).

They still want to:

• join conversations

• be included in traditions

• hear what’s happening in your life

• feel like the person they’ve always been

Even if communication changes, their thoughts, emotions, jokes, and insights remain fully intact. Talk to them, not around them. Include them in everything you can. Let them be part of the moments that matter.

How You Can Help Make the Holidays Meaningful

A few small gestures can make a world of difference:

1. Ask what they need, don’t assume.

Maybe they need help bringing in food, assisting with set-up, or simply giving the primary caregiver a short break.

2. Keep expectations gentle.

Plans may shift. Energy may fade. Go with the flow.

3. Be present, truly present.

Put the phone down. Be in the moment with them.

4. Offer practical help, quietly and kindly.

This matters more than people realize. In our family, when relatives quietly started washing dishes, moving furniture back, or sitting with Christopher so we could clean up, it was a huge gift.

These small acts lifted a weight we had been carrying all day sometimes all season.They allowed us to breathe, to regroup, and to feel supported.

5. Lead with compassion.

If emotions run high, remember: the holidays can magnify grief just as much as joy.

The Greatest Gift You Can Give Is Your Time

For families affected by ALS, the holidays are not about perfection. They are about presence. About love. About the moments that carry them forward long after the decorations are stored away.

Your visit, your patience, your willingness to show up, these things matter more than you may ever know.

This season, let your gift be compassion.

Let it be understanding.

Let it be time.

And above all, let it be love. Wishing you and yours the BEST holiday celebrations this Christmastime.