Health Leader, The Way We Were

story by

Karen Krakower

‘Three weeks ago, I was flying around the world. Now I can't go to the bathroom by myself.’

‘I told him a joke, and he burst out crying; I told him my brother died, and he burst out laughing.’

‘She was the love of my life..I can't believe I said that. I'm talking like she's gone. And she's right here.’

Stroke survivors and their spouses are daunted by the task of coming home to the familiar space that marked them as husband and wife. In the time it took to say, "I do," all those many years ago, a tiny blood clot, and changed their entire landscape.

James Grotta, MD,

James Grotta, MD, professor and chair, neurology, UT Medical School at Houston.

UT Houston Stroke Team At Memorial-Hermann – Texas Medical Center

To make an appointment
http://www.utdocs.com/AdultClinic/Neurology/

The man who once checked every door before he went to bed may not know where the doors are anymore. The novelist wife may not remember how to read. Lifetime roles get reversed in a blink. Can you be a caregiver and a couple at the same time?

"For couples, the loss of who they were together, is profound. So the sooner they try to reestablish what they reasonably can do as a couple, the better, with the knowledge that some aspects may change forever," says Sharon Ostwald, PhD, RN, professor and Isla Carroll Turner Chair in Gerontological Nursing at The University of Texas School of Nursing at Houston, Center on Aging.

The way we are

Usually the job of redefining a mutually satisfying future together will fall to the primary caregiver, the spouse, during the most stressful and lonely time ever.

The impending fear of loss of intimacy as a couple can be as paralyzing as the stroke itself. Sex, depending on age and its importance to the relationship pre-stroke, need not be a thing to fear or relinquish. "Generally if you were sexually active before the stroke, you can return to it safely," Ostwald says.

Pay attention to fatigue levels: make love in the morning, not at the end of the day when you are both exhausted, Ostwald suggests. Change positions to accommodate weaker limbs. Realize that society imbues a man with a need to perform, so your husband may feel frightened that he's not up to the task. You might fear that sex will bring on another stroke. Depression, a typical and treatable offshoot of stroke, both for survivor and caregiver, may trample sexual desire altogether.

So, talk about it. "You may each be suffering your own silent agonies, with neither of you wanting to bring it up," Ostwald says. "It may be that you simply need to resume non-sexual intimacy more than anything else."

The way I am becoming

The hard facts are that the largest percentage of improvement post-stroke occurs in the first six months. Profound fatigue, depression and frustration are part of the recovery phase for both of you. Sometimes these will all disappear. Sometimes not.

The key to maintaining a "couple" mentality in the looming shadow of fulltime care giving, is accepting what the new reality is and finding a way to flourish during the process of recovery.

"The problem with stroke though, is that you don't always know how long the recovery will be, or how much will occur, " Ostwald says. Caregivers burn themselves out by trying to be perfect; stroke survivors feel tremendous guilt from becoming a burden. And neither know how to give themselves permission to stop feeling this way.

So, take a fresh look at what is, what will be, what you can change, and what you can accept. In order to be a healthy and loving couple in the face of your "new" relationship with one another, you might first have to form one with yourself.

Home Coming: Guide to stroke survivor home care

Change, acceptance and the wisdom to know the difference

Accept the fact that this is not the same spouse you married. But then again, neither are you. We all change every day.
Accept that both of you are evolving through her stroke.
Accept help. Be specific with offers from friends and family about what you need. People want to help, and you need the help.
Accept social invitations. It’s easy to turn down those invitations. But one day, people will quit asking.
Change your temptation to give all of yourself to your loved one. If you’re lost and burned out, there are no options for your loved one. You can only give what you have.
Accept that you will lose your temper. You will resent the bed pan, resent the bed and resent the person in the bed. And you will feel guilty for the resentment. Accept your new status as Human Being, forgive yourself and move on.
Change your temptation to neglect your own care. Stress and fatigue put you at risk for a whole host of woes. Take a break, take a nap, a shower, a walk. Most important, take your neighbor up on her offer to sit with your loved one for an hour. (Then, take a breath if she doesn’t do it exactly the way you wanted. It was an hour you didn’t have before.) Have the wisdom to know the difference between creating dependence and promoting your loved one’s own independence.
There's a difference between doing for them and caring for them.

Updated: 4-09-2008

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About Dr. Ostwald:

Dr. Sharon Ostwald is a professor and Isla Carroll Turner Chair in Gerontological Nursing at the UT School of Nursing, Center on Aging.

See Dr. Ostwald also at:

Health Tip:

Eating healthy
reverses metabolic syndrome

Dr. Tasnime Akbaraly of University College London and her colleagues were interested if healthy eating could actually turn-the-tide and reverse metabolic syndrome, which is having 3 or more of the following risk factors: excess abdominal fat; high triglycerides, hypertension, low levels of HDL the “good” cholesterol, or type 2 diabetes. Having metabolic syndrome doubles a persons’ risk of heart disease and greatly increases the odds of developing type 2 diabetes.

The researchers studied 339 British civil servants with metabolic syndrome, and how closely the adhered to the Alternative Healthy Eating Index (AHEI) to see if it could help reverse metabolic syndrome. The AHEI is a set of published nutritional guidelines by the Harvard School of Public Health in 2002 that emphasizes whole grains, fruits, vegetables and decreased red meat consumption.

Five years into the study, nearly 50% no longer had metabolic syndrome. People who followed the AHEI guidelines the closest were nearly twice as likely to have reversed their metabolic syndrome. The results of the study were published in Diabetes Care, online July 29, 2010.

Dr. Alice Lichtenstein, an expert on diet and heart health from Tufts University in Boston who was not involved in the study said, "It's not about focusing on individual components of the diet, it's really the whole package, and that becomes important because it means that if one of the components of a healthy diet is to eat more fruits and vegetables, just buying a pill saying that there's a concentrated extract of fruits and vegetables is probably not what's going to help you."

Call and make an appointment with Wellness Coach Sam Hester, CWC, CPT, LWMC, at 713-500-3327. It's confidential and free. For more information on the wellness services provided, visit UT Counseling and WorkLife Services.