Put Your Own Oxygen Mask on First

On caregiving and refusing to disappear

Caregiving is love—but it is also relentless responsibility. Comforting Lee was entirely up to me. It was on me to calm him, to carry the emotional weight. To make the hundreds of daily decisions, both small and life-or-death (or at least it felt that way).

In reality, all I wanted some days was to sleep through the night. Just a few quiet moments to myself, to rest from the constant vigilance. To just feel safe and not terrified of what is coming next.

Here is the truth I had to learn the hard way:

You cannot disappear in order to care well for someone else.

Alzheimer’s has a way of slowly narrowing your world. Conversations revolve around symptoms, schedules and safety.

And decline. The diagnosis becomes the only story in the room—and I began to slowly fade into the background. I slowly stopped checking in on myself - how am I feeling, am I ok? Every day revolved around Lee and making sure he was as cared for and as comfortable as possible. And trying to be perfect at it, because he’s my husband.

And, of course, navigating ever-changing behaviors and moods brought on by Alzheimer’s.

I looked in the mirror and didn’t see Vicki anymore.

The Unseen Weight

Alzheimer’s and related dementia care presents unique emotional pressures. Persons with dementia may experience mood swings, paranoia, aggression, or complete withdrawal. Caregivers must adapt to changing behaviors, often without prior training or support. Communication becomes more challenging over time. These stressors can lead to emotional numbness, one of the symptoms of compassion fatigue.

In this state, caregivers may start to feel disconnected from their work or the people they care for. Empathy becomes difficult to summon. What once brought meaning and joy starts to feel mechanical and empty. Rather than continuing to absorb the emotional weight alone, caregivers benefit from acknowledging this shift and taking steps to protect their own well-being.

The Oxygen Mask

You know the old phrase, “Put your own oxygen mask on first?” I knew if I didn’t take care of me first, there was no taking care of someone else very well.

A friend and neighbor is caring for her husband with dementia, and she meets regularly with a group of friends they fondly call “The Oxygen”. Another member also cares for her husband with dementia. Through friendship and faith, together they weather the daily strains of caregiving. Several times a year she reunites with another group of friends. They’ve known each other for 50 years, are all in their own seasons, and still they show up. They meet to reconnect and renew themselves through friendship. That is a community that holds you up, that helps you restore your sense of belonging.

As a means of restoring my connection to my community again, I began scheduling breakfast, lunch, and dinner with friends. I felt it was urgent to restore connections and bring friends on the journey, even for an hour or two.

Not “when things calmed down.” Not “when I have time.” I put it on the calendar.

💡Research shows that spousal caregivers carry the highest burden of support and face greater levels of isolation.

Friends listened while I told them some of the life we were living, but we also went off topic and just talked about - anything. We talked about places we’d love to travel, shopping, exercise, our favorite Mexican restaurant - anything but Alzheimer’s and what it was taking from my husband and me.

Those meetups did more than get me out of the house. I felt restored for a while, energized, a little refreshed. Yes, I still worried when I was away from Lee, but I reminded myself that it was important to take a break if I was going to care for him well.

They were a lifeline. They reminded me I was still part of a wider community—part of life that existed beyond medication schedules and behavioral changes.

For an hour or two, I was Vicki again.

Breaking the Silence

And sometimes, we had to have the conversations that mattered most. When the fatigue and the stress and always being “on” became too much and I just needed someone to hear me. The small group of friends who listened silently and compassionately were a lifeline. Even though they couldn’t solve anything, I paid attention when they suggested ways to cope and manage - their “fresh eyes” on the problem brought new ideas.

Research shows that many caregivers keep their struggles to themselves. They fear that admitting hardship will be seen as weakness. Honest conversations among caregiving teams, families, and communities create a safe space for caregivers to share their experiences.

Open discussions reduce isolation and normalize these feelings. They also help identify solutions. Teams can balance workloads, family members can provide more support, and peer groups can offer connection.

Breaking the silence is not just healing, it is empowering.

Steel Magnolias

Watching your spouse decline in ways you can’t describe or predict, while at the same time meeting their physical and emotional needs, requires a warrior mentality. Tender Warriors know this. With love, we make the hard decisions, clean up the messes, rearrange the room, drive for hours, keep the schedules, maintain the house, pay the bills…with clarity of purpose. All without knowing what the next day will bring.

Finding yourself in all of this is not a luxury, it’s survival.

So This is Important:

• You are allowed conversations about you.

• You are allowed laughter in the middle of grief.

• You are allowed connection that has nothing to do with the illness.

• You are allowed to share your frustrations, your fears, your struggles.

Staying tethered to community doesn’t mean you love your spouse any less.

It means you are making sure you don’t vanish while loving them.

I was a caregiver for my husband with Alzheimer’s. I write about Belonging to Self, Community and Home, both during and after caregiving.

If this would be of value to you to hear more about how I restored my sense of community during the years of caregiving, Subscribe to Vicki’s Substack, “The Tender Warrior.”