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Diana B. Denholm, Ph.D, LMHC
Diana B. Denholm Ph.D, L.M.H.C.

Caregiving--Where Do You Begin?

4 ways to preserve your self, sanity, life and relationships while caregiving

Your love has just received a grave diagnosis, and for both of you, life has suddenly changed. Where do you, as a caregiver, start? What should you be prepared for? And how do you deal with the fears—all those worries and concerns that suddenly come rushing at you?

Colleen and Tom are a special couple. They’re warm, outgoing, and involved in all the important committees and causes in their community. Colleen is a full-time homemaker and a “soccer mom” for their daughter. She has a sweet grin, big sparkling eyes, and curly brown hair. Tom is a striking guy with bright blue eyes, a slightly receding hairline, and one of those forty-something tummies. He works as the manager at one of the big-name athletic stores, and coaches his son’s flag football team.

One slightly grey, rainy day, Tom was out for his usual morning run. He didn’t hear the car that came up behind him—the car that turned him into a paraplegic.

At that moment for Colleen, her marriage and her life as she knew it ended. What would she do? How would she survive? Whether a sudden accident or a medical diagnosis shatters your life, there is a way to stop being frozen in time, and to move forward—forward into living again. Even if you’ve felt "frozen in time" as a caregiver for many years, your life and your marriage do not have to be over.

When you're in the position of caring for a seriously ill spouse, it is important to learn how to interpret and move through the maze of roadblocks that can keep you from having a fulfilling life together. The day-to-day matters of life can get to be a challenge. These include your role as a caregiver, your own self-care, your ongoing life, household management, sleep, sex and intimacy, changes and strains on your marriage that you weren’t prepared for—and let’s not forget current and future finances, to name a few.

Here are some strategies Colleen and others in her situation can use to handle these and other challenges.

Understand your worries and fears.

Like you, Colleen has many worries, fears, and strong emotions. She learned they are not only normal, but to be expected—and that you can do something about them. If you don't, they'll bleed into your care of your loved one, possibly damaging both of you. Emotions are neither good nor bad, they just are. And you've likely got a lot of strong ones now—with good reason. If you're angry, don't be mean or passive-aggressive. There are healthy ways to release the anger through talking, writing, and imagery. If you're afraid, discuss that with your spouse, if appropriate. In confidence, share your strongest emotions with a close friend or support group so those emotions don't eat you up.

Reclaim your special connection with your spouse.

Colleen used to be able to talk to Tom about anything, but suddenly she didn’t know how, and she’d lost that special connection with the man she loves. She was afraid he might be hurt by anything she brought up, or she might spoil a happy moment by raising serious topics. But then she tried some new communication techniques that were immensely helpful. Whether it was mobility issues, their sex life, or what to do about family and friends, she now had a way to do it. First, she sorted out her concerns—what she really needed to talk about with Tom. Then she learned how to approach him to set up a “talking date” and choose a setting that would assist their conversation. She prepared and calmed herself—and began the most important conversations of her life. Because she learned to speak to Tom in a way that was compassionate and effective, now they were able to take the first steps to mutual agreement. By creating understandings and agreements, you as a caregiver can still have your life, and you and your spouse can still have your marriage.

Work together, rather than enabling or controlling.

Colleen learned not to do for Tom what he really can and should do for himself. This enabling will create an invalid. She avoided micromanaging what he's able to do, even if he doesn’t do it well. In their discussions, they agreed on what they’ll expect of each other and what she is willing to do and not do. You’ll actually create precious time for yourself by not taking on jobs that should be done by others—including your loved one. If you do less enabling with everything and everybody, you'll create more energy for yourself and you'll have less anger. And, you’ll create the time to care for yourself—so you will survive these difficult times.

Discover dos and don’ts.

You’ll learn that you can survive and even have fun using specific dos and don’ts that make your life simpler. Here are a few:

• Don’t be afraid to ask for help wherever or however you feel you need it. If you can afford hired help, insist on it. If you can’t, then ask friends, family, and agencies for help

• Don’t feel guilty that you still have a life and still can have fun. Life may not always seem fair, but that doesn’t mean life is wrong.

• Do know that the sick person’s journey and your journey are not one and the same. You’ve got different things for which to prepare, so don’t get lost on their path.

In my book, The Caregiving Wife's Handbook, I offer strategies, tools, and resources that have helped many couples navigate through a long-term serious illness. They can help you too. In future blogs, I will share many of these, so check back often.

About the Author
Diana B. Denholm, Ph.D, LMHC

Diana B. Denholm, Ph.D., L.M.H.C., is a medical psychotherapist and the author of The Caregiving Wife's Handbook.

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