Caregiving After a Stroke: (Part 1)

It was more than a decade ago when Shawna Lee stepped into the sun room of her parents' house in Champaign, Illinois, and found her 60-year-old mother, Hsiu Lee, looking disoriented. "She told me, 'Your grandfather treated me badly his whole life.' Then she started crying and told me she couldn't button her blouse."

"I thought this was weird and called the doctor, who said to come in right away," Lee recalls. "My mother came home from the hospital three days later, after losing all the mobility on her left side." Her mother, as it turned out, had suffered a stroke.

A stroke works like a hurricane. Both devastate with relentless speed, robbing their victims of what they rely on to navigate through life. In a few moments, a stroke can eliminate its victim's ability to see, talk, think clearly, or walk -- at least temporarily. Some victims, particularly those who have smaller strokes, recover almost all their abilities in a matter of months. In other people, the damage is long-term.

A stroke also hits the people closest to the survivor, particularly those who overnight have to step into the unrehearsed role of caregiver. Confronted with such an upheaval, it's hard to know what to do or whom to turn to. But for people taking care of stroke victims, there's a wealth of resources and help, often close at hand.

How can I take care of my loved one?

It may seem difficult or even impossible at first: Feeling overwhelmed is an entirely normal reaction. Depending on the degree of brain injury caused by the stroke, your loved one could be mildly to severely impaired. In severe cases, it may seem as if the stroke survivor has undergone a total change in personality. The resulting range of emotions in the survivor and those close to him or her can run the gamut from grief, anger, and denial to confusion, impatience, and fear.

Shawna Lee has felt them all. "You get very frustrated looking for the mother you used to have. You continually try to reconcile the difference, and there's no reconciliation," she says. However, at some point, perhaps after talking it out with friends and relatives, you can reach a measure of acceptance. "As a caregiver, you can only lament the loss and charge forward," says Lee.

Sometimes caregivers fall into depression, which leaves them ill-equipped for the task of helping with rehabilitation and recovery. Seek out a mental health professional if, over a period of two weeks, you or the stroke survivor experience any of these symptoms: a sense of hopelessness about the future or feeling "flat," bored, and apathetic; noticeable changes in sleeping or eating; loss of pleasure in social activities; or obsessive feelings of guilt and shame. If you have thoughts of suicide at any time, you should also contact a doctor or therapist immediately. Depression is a serious and even life-threatening illness and shouldn't be tackled on your own, especially with the added responsibilities that come with surviving a stroke or caregiving.

Regardless of whether or not you're depressed, you should enlist the help of relatives and friends who can provide you with a break from caregiving, which you'll need on a regular basis. "The most important tip is to take care of yourself," notes the American Stroke Association. "If caregivers don't take time out for themselves, the family and the stroke survivor will not be getting the care they need."

Plan to take an afternoon off to go for a swim, see a movie with a friend, do errands, take a walk, or do whatever else appeals to you. "You can't be afraid to admit you need help. You have to ask, and [you must] know it's really the best thing you can do for yourself and your survivor," says a caregiver named Karen in Marilynn Larkin's helpful book, When Someone You Love Has a Stroke. Having a support network -- or paid help, if necessary -- will help ease you through the transition of caregiving.

How do I figure out what sort of rehabilitation my loved one needs?

Before the stroke survivor leaves the hospital, find out which doctor is coordinating care and meet with her. Typically, this individual is a physiatrist, a specialist who focuses on rehabilitation, selects the required therapies, and defines goals as well as the estimated time it will take to attain them. Be prepared to ask the physiatrist to explain exactly how the stroke has affected your loved one and how the recovery plan will address the impairments.

Next, make a point of meeting with each person on the recovery team. In each discussion, ask how you can work with the survivor to enhance his or her therapy. For example, a physical therapist may show you some exercises you can do with your loved one, while a rehabilitation nurse at the hospital can show you how to bathe, dress, and transfer your loved one in and out of a wheelchair -- all tasks you'll have to perform at home. It's helpful to bring a tape recorder or a pen and paper to write down information, as it's hard to digest a lot of new material all at once, especially when it carries so much emotional weight and entails an overhaul of your lifestyle.

Chances are that once your loved one comes home, you'll need assistance from a home health care worker to help you through the transition. A hospital social worker can help you decide exactly what sort of help you'll need, discuss financial assistance you may be eligible for, and refer you to agencies in your community for further aid.

As you prepare to move into the new role of caregiver, realize that it probably will feel awkward at first. Knowing that you're not alone and that there's aid available will help ease this difficult transition.

Further Resources

National Stroke Association
800-787-6535
http://www.stroke.org

American Heart Association/Stroke Connection
800-553-6321
http://www.strokeassociation.org

References

Interview with Shawna Lee, San Francisco California.

Larkin, Marilynn. When Someone You Love Has a Stroke, Dell.

Caregiving. American Stroke Association, a division of the American Heart Association. http://www.strokeassociation.org/Consumer/care/caregiver.html.

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