Caregiver Contest Grand Prize Winner: Lorna C.

Congratulations to Grand Prize Winner Lorna C. from Forestville, California. Lorna is a mother of a medically fragile 26 year-old with severe developmental and physical disabilities.  

To enter this year’s 20th Annual Caregiver Story contest, click here!

For the last 26 and a half years, my husband and I have been taking care of our beautiful daughter, Naomi, who requires 24/7 total medical care and 100 percent assistance with daily activities. And guess what? Life as a caregiver can be overly hectic, with not a lot of time to take care of ourselves.

I have met the demons of exhaustion, lethargy, depression, anxiety and loneliness.  Sometimes dropping into bed almost feels like too much effort.

However, withdrawing or collapsing from overwork while caring for your loved one won’t help anyone.  You have to take care of yourself in order to take care of others.  Even when it feels impossible, you just have to find some balance in your life.

My solution is to remember the following seven ways to find balance.  If I act on just one of them, it energizes me and gives me strength to keep on going, and, hey, even have a semblance of a “normal” life sometimes.  I hope you find them useful, too.

Believe that balance is possible.

In my previous life BC (Before Caregiving), I encouraged my university students to live by the maxim, “Do what you love; love what you do.”  As a caregiver, if you love to take long walks on the beach, treat yourself to bonbons at a movie, or travel to Mexico, it may not exactly be possible.

So, while I can’t always do what I love, I find creative ways to love what I do. Breathe in the green of nature as I drive on an errand; savor some coffee for a quiet 5 minutes in the morning; people-watch at the grocery store; celebrate a success when finally a difficult appointment is made or the correct meds finally arrive – tiny things that take virtually no time, but give a little lift.

William James, the philosopher, said, “Believe, and the belief will create the fact.”  That’s why experiencing small balance opens the door to larger balance.

What are six tiny things you can do to bring more balance to your life?

Activity is your friend.

Moving your body can do wonders for depression and exhaustion. If you don’t have time for an exercise class, hike or personal trainer, how about stretching when you get up in the morning?  Jumping jacks when you put the clothes in the washing machine?  Parking on the far side of the parking lot at the store?  Finding a supportive day program for your loved one also gives you a breather, time to do things you might have put off in order to care for her or him.

We often take our daughter for walks in her wheelchair, so we don’t need to take time away from caring for her to take care of ourselves.  When we are out with Naomi, we have conversations with regular people in the real world.  That lends a note of balance to our lives.

What activities might you enjoy and commit to doing at least once a week?

Let people help.

While no one can love your special person the way you do, you just can’t do it all by yourself.  I have gone through my days (months?) of control-freak independence and fear of awful consequences of leaving our daughter’s care to others.

And you know what?  They didn’t kill her. I wasn’t “bad” for taking time off. People helped me by lessening my load of obligations.  Or brought meals.  Or were good to talk with while they lent a hand.  So once in a while say, “Why, yes, how thoughtful,” instead of, “No thanks.  I can do it.”

Remember – many people like to help, but don’t know what to do and welcome your requests.  It gives them a sense of worth.  And even if they don’t do a perfect job, if their assistance has allowed you a little time to do other things, then that little bit of balance to your life was worth it.

Whom do you know that might be able to help, and in what ways might they do this?

Allow yourself not to be perfect.

Sometimes it’s OK if her shirt is not clean, or his lunch is late, or your house is a mess, or you snapped at that person.  Sometimes it’s OK if you can’t be Martha Stewart, Mother Teresa and the Energizer Bunny rolled into one.  Sometimes it’s OK not to push yourself to exhaustion to get things “just right.”

It’s not always easy to be OK with not doing the best and most, but there’s a sense of freedom that comes when you let go of some of the time and stress around providing supreme care day and night.

What are some ways in which you can relax your approach to caring for your loved one?

Nourish your soul.

When “stuff” on the outside is attempting to gobble me up, a key ingredient to balancing my life is tapping into my inner or higher self. For me, it could involve meditating, cooking, reading, communicating with nature, collage-making, talking with a friend, or looking at water.  For you, it might be singing, praying, gardening, taking a class if you have time off; whatever gives you pleasure and, if only for a short time, helps you feel part of the larger universe.

We all need a balance between our responsibilities in the nitty-gritty external world, and the inner world of our heart and joy.  Perhaps a five-week safari to Africa isn’t in the cards right now, but maybe smelling the coffee in the silence of the dawn for five minutes is.

When and where and how do you feel the calm of inner peace or a glimmer of happiness?

Connect with others.

With all that’s involved in caregiving, it’s easy to cut oneself off from others. But there’s a mountain of research showing we feel better, happier, more energized when we connect with others, especially those who share similarities with us.

If you can’t get out, invite a friend, relative or colleague over.  Find and join a support group of people coping with similar issues, either on-line or in person through a local agency.  Social workers and medical professionals can be helpful in identifying such groups.

When I am up with a crisis in the wee small hours, feeling alone and sorry for myself, I have found that I feel less out of balance by simply recognizing that I’m part of a secret club of people all over the world whose lives parallel mine in some way.  Many of them are probably also up alone right now, doing pretty much what I’m doing – caring for someone important.  The thing is, our club is so secret that we don’t know who each other are!  Realizing that we’re in this together brings balance to me and I feel less alone with my responsibilities.

Whom might you connect with?  How and when?

Expect the unexpected.

Once upon a time I expected things to go as they should.  When they didn’t, which was often, I would be thrown for a loop: Anger. Upset. Fear. Depression.  The list of responses goes on and on.  The problem was my expectations.  An alternative perspective, call it dark humor if you will, is to NOT expect things to be perfect (including myself), to laugh at the absurdity of life, to take a deep breath, and, as Queen Victoria apparently said, “Keep Calm and Carry On.”

And the things that give me the strength to persevere with an upbeat attitude are the approaches to balance outlined here.

What are some ways you might stay afloat and maybe even laugh when hit with the inevitable unexpected punches?

So, if your life feels overwhelming, I hope that you can use some of these ideas to build a more balanced life for yourself.

And remember, the words of the musician, James Brown, “Get up offa that thing and dance ‘till you feel better!”  If you can do that, even if it’s just for a few seconds in your mind, it’s a start to living with balance.

Winners were selected by a panel of independent judges: Margarita Bermudez, Manager of Professional Training and Healthcare Services at Alzheimer’s Los Angeles; Amanda Hlynosky, RN, BSN, a critical care nurse at Cleveland Clinic; and Leigh Ellen Key, Executive Director for Crohn’s & Colitis Foundation, South Texas and Louisiana/Mississippi Chapters. Click here to learn more.