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6 Ways for Caregivers to Survive Stroke Recovery

Caregiver experiencing burnout

Craig had a stroke more than five years ago. Through hard work, therapy and his wife’s dedicated care, his recovery is going well. Cathy, his wife of 48 years, is still facing some lingering limitations. Money is tight and at times the burden of care becomes overwhelming.

Cathy found that Craig’s long-standing moodiness and meanness intensified after his stroke. He often barks orders at her and expects her to wait on him hand and foot. In addition to caring for her husband, she is also the sole monetary provider for the family. Cathy, like many caregivers, feels unappreciated.

Cathy’s stress and anger spills over into everything she does. It causes problems at work, and it affects her care of Craig. She feels frenetic and scattered in her thinking, is easily startled by loud noises, has difficulty sleeping, and has become forgetful and depressed. Cathy wonders what became of the sweet lady she used to be and is resentful of the angry, guilt-ridden person she has become.

There is hope and help for caregivers who find themselves, like Cathy, dealing with burnout. Caregiving does not have to destroy you, your life, or your relationships. When difficult emotions threaten your mental and physical well-being, use these strategies to ease frightening emotions and create a positive environment for both of you.

1. Understand your emotions

Sometimes you feel guilty because you have bad thoughts, and sometimes you feel guilty because you have happy thoughts. This inner dialogue helps you survive by allowing you to let off small surges of negativity without screaming things out loud or acting on them. Emotions are neither good nor bad, they just are. But too much pent-up anger or too many disturbing thoughts not only create negative outcomes, they also steal your energy. Among many healthy ways to release anger, try simply writing down, for your eyes only, all the things you'd really like to say but won't—just to get them out of your system. 

2. Avoid enabling

A common mistake caregivers make is thinking that everything is your responsibility. This makes you resentful and makes you angry at those who aren't doing things, or aren't doing things your way. It steals your spare time, which keeps you from caring for yourself. To avoid this trap, don't do for the cared ones what they really can and should do for themselves. This enabling, or controlling, creates invalids. Don't micromanage what they are able to do, even though it may be far from perfect. The less you enable, manage, or control, the more likely you are to reclaim that "nice person" you know you are.

3. Establish expectations

First and foremost, get on the same page as the stroke survivor in terms of expectations for everyone involved in their care—including "helpful" friends and relatives. To do this, begin by bringing all of your concerns out into the open—with yourself. Then sort through those concerns to determine which ones you'd like to address. Discuss and agree on what you'll expect of each other and what you are willing to do and not do. Topics can include the type of care and who will perform it, legal and financial matters, household management, visitors, sleep, and sex and intimacy, among others.

4. Try easy tips to make communication more effective

You want a good outcome, and you can create that by collaborating rather than communicating as adversaries. Once these understandings are created, household battles and stress will greatly diminish, leaving a more peaceful and happier environment in its place. Communicating effectively with the stroke survivor is the single most helpful way to improve your mental health and return you to the positive person you used to be. Here are a few specific tips Cathy learned:

  • Don’t Ask Why: You really don’t want to know why a man leaves the toilet seat up, you just want to change his behavior and so he’ll put it down.
  • Let someone keep their opinion, while working on changing their behavior: It’s all right if someone hates their medicine, as long as they take it.
  • Use reflective listening: Repeat back to them what they just said, instead of interpreting. If you interpret what someone says, it will stop a conversation dead in its tracks.
  • Using "I" statements: It’s more effective if you don’t presume something about another person by using the inclusive “we.”
  • Agree to Disagree: As a last resort, if you reach a stalemate, agree to disagree. At the very least, ugly arguments can stop and your home will be more peaceful and loving.

5. Give yourself permission for self-care

Once you've manufactured more time by not enabling, give yourself permission to get away from caregiving. It's okay to have fun, even if your loved one is suffering. Start small. Give yourself permission to enjoy one simple thing, whether it's a short walk in the fresh air, sitting in the bathroom meditating, or spending a little time with a friend. As you become comfortable with small steps, branch out to other self-care activities. 

6. Get help if you're near the edge

While it is your job to keep your loved ones safe, if they aren't able to, it is not your job to make them happy. Only they can do that. But if you sense your emotions are out of control, you need to get help before you become the threat to your loved one's safety.

By: Diana B. Denholm, Ph.D., LMHC, author of The Caregiving Wife’s Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself

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"Caregiving does not have to destroy you, your life, or your relationships. When difficult emotions threaten your mental and physical well-being, use these strategies to ease frightening emotions and create a positive environment for both of you."

About the Author

Diana Denholm, PhD, has been a board certified psychotherapist for more than 30 years. For 11 years, she was the primary caregiver to her husband during a series of grave illnesses.

Her critically-acclaimed book, The Caregiving Wife’s Handbook: Caring for Your Seriously Ill Husband, Caring for Yourself, offers hope, advice and resources for women and men caring for their spouses with long-term illnesses.

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