What to Know at the Beginning of Your Caregiving Journey

As a longtime family caregiver and advocate, I've learned some important lessons

younger person holds an older persons hand

Catherine Falls / Getty Images

Amanda Singleton

En español

Published December 28, 2021

The turn of the calendar year is my time for reflection. I look back on what’s happened in the past 12 months and form dreams for the year ahead. This December my look back has extended much further. I realized it’s been more than a decade since I became a caregiver for my mother, and my life changed forever. I can hardly remember when my days didn’t revolve around caregiving — whether I was tending to a loved one through illness or injury, raising a child or operating a business that serves other caregivers. As I take stock of all these experiences, here’s what I wish I had known when I became a family caregiver and a few of the lessons, big and small, I learned along the way.

You may become a caregiver at any age

Caregiving is not a life event we know will happen in a certain time frame, like wisdom teeth coming in or giving birth. We expect that we may take care of our elders or aging parents, probably when we are in our middle age and have established our careers or had children. But it doesn’t always happen that way. Sometimes an out-of-nowhere diagnosis or injury can upend the lives of a whole family in the span of a day. I’m not sure why our culture doesn’t embrace this truth and prepare for it. It would be so much easier to settle into the experience of caregiving resulting from a diagnosis or injury if we were comfortable in the knowledge that we may be a caregiver at 20, 50 or even 90. If you have friends or family you love, then someday — any given day — you may be called to care for them, regardless of whether you had other plans.

Expect the unexpected

Just when I think I’ve gained some competence in my caregiving routines, something surprising happens. A medication change that increases undesirable symptoms or creates new ones. Paid help doesn’t show up, or a trusted aide leaves and finds another job. A pandemic keeps us from having in-home help at all.

Our brains are wired to crave routine and consistency. It’s totally normal to feel out of sorts and adrift when you have no idea if a loved one will be spending the week at a hospital or at home — or how long they will live with dementia or with a terminal diagnosis. A constantly changing playing field, sometimes with no end goal, can be highly unsettling. Long-term caregivers learn to roll with the punches. The ones I see who are the most at peace in their caregiving role understand that they can’t control everything and that they can only do their best with present circumstances.

Family conflicts may rear their heads

We all hope that our families will pull together in community and close ranks when there’s a family crisis or when stepping up to care for those who raised us. It does happen, but not always. Prior arguments and struggles in relationship dynamics can bubble to the surface for most families.

As an attorney who handles caregiving legal issues, I deal with family squabbles and struggles often. I have also experienced them personally. What I see is that they are all coming from a place of old hurt. People are sometimes estranged from family members because of serious harms, like abuse, yet they still have relations in common who are unaware of the reasons for the estrangement. I learned to keep my focus on the person who needs care. It may be that broken fences won’t be mended for some time, or ever. But exhibiting transparency, neutrality and common courtesy to all is a good first step to healing and is something you will never regret.

It’s not wrong to take care of yourself first

Caregiving with love, grace and generosity does not mean sinking your own ship. Your well-being is just as important as the well-being of your care recipient. Learn and recognize the signs of burnout. Work with professionals who will keep an eye on your emotional state and your financial strength. Eat consistently, sleep when you can, and move your body in a way that gives it strength and flexibility. Talk with other caregivers, in an in-person support group or online. These peers are likely to offer a wealth of knowledge for almost any circumstance you’re going through. Even if they don’t have specific advice, they will be a sounding board. And ask for help, all the time. Self-sufficiency will carry you a long way, but it can hinder your ability to take care of yourself.

There is no substitute for smart planning

The most practical lesson I’ve learned (and would shout as loud as Paul McCartney singing “Get Back” on a rooftop if I could): Get your legal planning completed. If you know you’re going to be caregiving, encourage the recipient to get their legal planning completed, too. It’s heart-wrenching to talk to people who are facing the costly route of guardianship for an incapacitated family member but are of limited means themselves. It’s a roadblock even to get the utilities paid when a family member is hospitalized. You will thank yourself (and me!) if you ever need those legal documents in an emergency.

And while you’re planning, take the long view on life. Remember that caregiving can occur at any time. Think about how you would make it work if you had to adjust your schedule, your job and your household to tend to someone. Is your workplace understanding of caregiver issues? Can you change homes or modify your existing residence to accommodate someone with a disability or to move a loved one in? Have you and your spouse talked about who will be responsible for specific tasks in your parents’ later years? Just as important, have you talked with your children about your wishes and what they would need to successfully care for you?

Advocate like someone’s life depends on it

Gather up all your courage and chutzpah for caregiving; you’re probably going to need it. There may be days you get subpar consideration from a medical provider or just know something is off with the person you’re caring for — your care partner. If your senses are telling you that they need your help, be tenacious about pursuing the help they need. In today’s busy (and often remotely communicating) world, you may have to push more aggressively than you normally would to get attention. You may need to set boundaries with relations who mean well but are not capable of handling medical tasks or administering medication competently. You may even have to educate professionals on your loved one’s care. That’s not to say you should go full Shirley MacLaine in Terms of Endearment in a hospital hallway, but don’t let your concerns be brushed aside when you’ve been the frontline medical provider for someone. It can lead to a better outcome or even save their life.

Caregiving is the highest form of love and an honor

There’s a saying, “Grief is the price we pay for love.” I feel that caregiving is the price we pay for love. Even if you have a complicated or reluctant relationship with your care partner, under all conditions, caregiving gives so much in return.

I don’t count my life or my luck over the past decade based on the illnesses, losses or deaths. More, I see how caregiving has given me the gift of truly loving others and being of service to those in their own caregiving stories.

It is an honor to be present with someone else as their mind, strength and breath leave them. It’s a joy to witness someone recover from a debilitation. It is a reminder of our humanity and our humility to put another’s needs as a priority. And while it’s rarely an easy path, the lessons you learn from caregiving will almost always be heartfelt and worthwhile.

Amanda Singleton is a recipient of CareGiving.com's national Caregiving Visionary Award and serves caregivers across their life span through her law practice. Follow her on Twitter and Facebook.