How I Found Meaning Outside of Caregiving My Loved One With Alzheimer’s

My loved one’s dementia came at me and my family like a tornado. Suddenly, this formerly self-sufficient member of our family simply couldn’t take care of herself anymore … and we were left to clean up the chaotic disaster her dementia had unleashed.

People think of dementia as the inability to remember dates, names, faces, and words. While that was true for my loved one to some extent, the most notable feature of her dementia was that she couldn’t make adult decisions anymore, couldn’t take care of her space, and had abandoned things like basic hygiene, cleanliness, and order. Basically, her executive functioning had deteriorated dramatically.

So, while we were taking her to doctors and processing her dementia diagnosis, we were also cleaning out her apartment, which had become a hazardous situation as a result of intense hoarding, including the build-up of piles and piles of spoiled and seriously rotten food. We were also managing an enormous buildup of credit card debt she had gotten herself into in a matter of months. And we were doing all this while securing her in-home care as quickly and economically as we could.

Losing Myself in Caregiving

I have two children and a full-time job, so when I needed to help stabilize my recently diagnosed loved one, my own life became a complete mess. I barely had time to eat or sleep, let alone consider things like self-care or my own needs.

But over a year into this journey—and thankfully with a much more stabilized loved one who is cared for 24/7 now—I have learned that abandoning myself in the name of caregiving is a big nope.

It’s non-negotiable. It’s the only way that I will be able to manage whatever the next few years throw at me in terms of the progression of my loved one’s dementia. Most importantly, there is no way I can be the caregiver to my loved one that I need to be unless I take care of myself, too.

Why Finding Meaning Outside Caregiving is Important

It’s not just something I came to on my own: experts wholeheartedly agree that finding meaning outside of caregiving isn’t just important—it’s vital for your mental health and physical health, as well as your ability to be a good caregiver.

“The demanding nature of caregiving poses physical and emotional challenges that can result in burnout without sufficient personal downtime for caregivers,” says Sanam Hafeez, PsyD, neuropsychologist and director of Comprehend the Mind.

Burnout is different from simply being stressed or tired: it describes the physical and mental health impacts of chronic stress, something that can occur when you are spending hours and hours each day trying to balance caregiving with your other life responsibilities. Burnout can include emotional exhaustion, serious lack of energy and emotional endurance, depersonalization and numbness, and a decrease in personal fulfillment. Burnout also includes physical symptoms like headaches, insomnia, GI symptoms, and pain.

In particular, research has found that informal caregivers of dementia patients experience high levels of burnout. Trust me, I’ve been there, and burnout doesn’t just make you miserable as a person. It makes it feel impossible to care for your loved one, and it can cause you to live with a significant amount of resentment.

“Finding meaning outside the caregiver role becomes a necessity to be able to nurture your sense of self and recharge your emotional and mental health,” says Suzanne Teare, LCSW, clinical social worker, and founder at Within Therapy Solutions. “Think about it like putting your own oxygen mask on before helping someone else. You can’t help others if you’re struggling to help yourself.”

What Finding Meaning Outside of Caregiving Might Look Like

Finding meaning outside of caregiving may look different for everyone. There isn’t a one-size-fits-all solution. The main thing is that you pick a few things to focus on and make them a priority in your life.

Finding meaning outside of caregiving is personal and unique to each of us, says Teare. “You might find meaning from rediscovering an old passion like painting or playing guitar,” she describes. “But for someone else, meaning might come from being in nature or spending time with loved ones.”

Here are some options that Dr. Hafeez and Teare shared with us:

• Painting
• Gardening
• Playing musical instruments
• Writing
• Journaling
• Drawing
• Knitting or crocheting
• Physical exercise, like hiking, walking, running, yoga, or hitting the gym
• Joining a hobby club
• Joining a sports league
• Spending time with friends
• Taking continuing education classes (online or in person)
• Engaging in spiritual practice or meditation

How I Found Meaning Outside of Caregiving

For me, finding meaning outside of caregiving meant doing a pretty sweeping reevaluation of my life. I had to figure out what could add richness and nourishment to my life. Then, I had to work my butt off to be sure that I had made them a number one priority.

This meant scheduling these things into my life and being very strict with my schedule. It meant being extremely intentional about how I thought about myself, my life, and my personal boundaries.

Here’s what that all ended up looking like for me.

I Made Daily Self-Care Non-Negotiable

I had always exercised several days each week, and there were times in my life that I meditated. But I knew that once I became a caregiver for my loved one, I would need to make those integral parts of my life. I also needed to take them up a notch.

Exercise is one of the best ways I know how to manage my stress and anxiety, and so for the past year, I’ve made sure to exercise for one hour each morning as soon as I wake up. I keep it simple. I either walk around the neighborhood or do a yoga/Pilates class online. It’s my “me” time and it sets my day up with a bit more energy and clarity. Also: thank you, endorphins.

I also make a point to meditate every morning after I exercise. I do it for 10 minutes and usually use an app. I am terrible at meditating. I’m always thinking of five billion things. But I am usually calmer on the days I meditate, so I continue showing up.

I Picked One Meaningful Activity and Made a Weekly Commitment to It

In addition to being a health journalist and writing articles like the one you are reading right now, I’m a published poet. I love poetry and each poem I write feels like a container where I can put all the stuff of life, including the dark, confusing, and hard-to-process stuff.

There have been times in my life when I have made more or less of a commitment to work on my art, but ever since I became a dementia caregiver, I have made probably the deepest commitment to it yet. I work on poems every Sunday morning from 9 a.m. to noon, no matter what. I also find small chunks of time several evenings a week to write. 

The writing has been instrumental in helping me get through this past year-and-a-half of stress, grief, and “the long goodbye” that so often colors the dementia experience.

I Practiced Daily Affirmations and Changed My Mindset About Putting Myself First

I am the oldest daughter in a family of divorce. I was always expected to be the mature one, and to care for others. I was basically the mother of my family, which meant that putting myself first was never an option. I spent a lot of my adult life caring for others, being the one in charge, and putting myself dead last.

Becoming the caregiver for a loved one with dementia has meant doing a whole lot of caregiving, but also prioritizing myself whenever possible. Besides the actual things I’ve done to accomplish this (as I’ve outlined above), it’s also an internal shift in my thinking that I’ve committed to lately.

It sounds corny, but when I see myself falling into the trap of trying to do everything, trying to be perfect, or taking care of others at the expense of my own needs, I say something like, “Hang on, Wendy, you matter too!” I’ve changed the thoughts in my head. I’ve changed my mindset, and it means that I’ve changed the types of decisions I make on a moment-to-moment basis.

When You Just Don’t Have the Time

You might be reading all this and thinking: Well, this all sounds well and good and I definitely need to do this. But, ummm, how on earth do you expect me to have the time as a caregiver?

“This is a valid question for so many caregivers and it’s important to acknowledge how hard it can feel to find time for yourself when dealing with the intensity of caring for someone with dementia or Alzheimer’s,” Teare says. “But it’s also important to find pockets of time to care for yourself in the process.”

Here are some of her suggestions:

• Start small. Just five minutes of deep breathing or a quick walk around the block can decrease your stress and help you recharge.
• Set boundaries. Tiny boundaries, such as turning off your phone for 15 to 30 minutes or making a point to say “no” to extra commitments, can give yourself a moment to breathe.
• Don’t expect to do this on your own. It’s okay to ask for help, especially now. Reach out to friends, other family members, or professional care services for support.

Bottom Line

Being the caregiver for a dementia patient can be a lot. It’s hard to even describe the burden of this type of care to others who haven’t been there. For me, it’s like being in the middle of a five-alarm fire, while still being expected to go to work each day and care for two children… without any clue what you are doing and very little support from the outside world. Yep, that can take a huge toll on your mental health!

But if there is one silver lining for me (and trust me, it can be hard to find when you are living in the world of dementia), it’s that I learned that it was possible to radically prioritize my own needs even in the most impossible circumstances

If I can do it, you can do it too. We’ve got this.