At the end of nurse Lorraine Williams' recent home care visit to Professor Samuel Kaplan, he walked her to the apartment's front door. "I was so surprised," she marvels -- because only a year earlier, the 70-something professor had a stroke and couldn't walk.
But with an attentive home health care team that included home health aides, nurses, physical therapists, speech therapists and social workers, in addition to his wife, Professor Kaplan was reaching his goal of resuming the pleasures of his old life, including regular visits to his country house and walking a female visitor to the front door. "That was something customary for him," says Lorraine. "So he was focused on doing it once again."
Each year, according to the American Heart Association and American Stroke Association, some 795,000 Americans have a stroke, or cerebrovascular accident (CVA), when blood flow to a part of the brain stops. Rehabilitation and follow-up care vary widely, depending on the severity of the stroke's damage. Some people can speak and walk, although with delays or assistance. Paralysis or impairment on one side of the body and face is common. Still others may be bedbound and unable to communicate. Home care, whether from a professional care team, a committed family member, or a combination, is frequently necessary, sometimes around the clock.
Specialized care -- such as for a stroke survivor -- has become central to the story of nurse-led home health care, in which teams similar to Professor Kaplan's help patients implement doctor's orders or a nurse's plan of care as part of day-to-day life at home. Our agency receives and fulfills requests all the time for home health aides with experience or training in caring for patients with special or specific care needs, which includes individuals with multiple sclerosis, HIV/AIDS, Parkinson's, Alzheimer's, diabetes, congestive heart failure, and those in hospice.
No matter the condition, home care involves a combination of physical and emotional attention. Patience, compassion and encouragement are a must. "I always look for something positive and pay a compliment right when I come in," says Lorraine, who is an RN and a field supervisor. "You can always find something to praise -- the skin, the smile, the eyes. It does so much."
Care: From Head to Toe
Caring for a stroke survivor involves being attentive from head to toe, as stroke often affects the ability to speak and swallow as well as stand, balance and walk. Oral care is central to safety and well-being. Make sure food never gets left in the mouth. Doctor's orders or a nurse's plan of care should let you know if food should be pureed or cut in very small pieces. Still, encourage the person toward as much independence as possible. You cut the food but encourage her to feed herself. If a fork is unwieldy, use a spoon. If she can lift a cup but is unsteady, use a sippy cup.
Whether unsteady or paralyzed, those who have had a stroke usually need some degree of assistance when transferring positions -- from bed to standing or to a wheelchair, or into a bath or shower. A patient lift (such as a Hoyer Lift) is a must to safely transfer those who are paralyzed; if you are using home care, make sure the home health aides are trained to use such a lift. To prevent bedsores, change bed position a minimum of every two hours when caring for someone who is unable to move him -- or herself.
Battling Depression and Isolation
Any sudden decline in health and loss of independence can cause a downward spiral of frustration, isolation and depression. Lorraine makes sure to include in the nurse's plan of care specific instructions for home health aides and other caregivers to foster independence and a sense of purpose and counter depression. Even with immobile clients, "encourage them to assist with personal care needs," she suggests. If Mrs. Smith cannot dress herself, have her pick out clothes (even if it means nodding or blinking yes or no). If Mr. Ruiz cannot feed himself, have him help choose the menu.
Make sure to include pleasurable and familiar activities in the day's routine. If he loves the museum, find a way to get there, perhaps in a wheelchair. If she always watched the evening news, keep up that habit. He loved an after-dinner walk? Make that a goal, whether in a wheelchair, or, if appropriate and with the help of a physical therapist, eventually with a walker.
Like 1 in 4 people left with a speech impairment after a stroke, 74-year-old Maybelle Lewis suffered from aphasia, greatly frustrating her and her family members. (We have changed her name, and others' here, to protect privacy.) Because she could write, her home health aides made sure she was never without pencil and paper -- and she communicated her wishes that way. For those who cannot speak or write, fashion communication in yes or no questions and have the client or loved one squeeze your hand, once for yes, twice for no. Would you like eggs? Do you want the restroom?
Family caregivers and attentive home health aides also learn to recognize changes in facial expression, such as a grimace indicating discomfort or disagreement. For those who can write, encourage them to keep a journal, writing thoughts and hopes and fears without the frustration and pressure of communicating in the moment.
Memory Loss and Confusion
For those whose effects of stroke include memory loss or other cognitive issues, orient them in place and time by:
- Writing out the day and date in big letters on an erasable board or piece of paper
- Keeping a clock with big numerals visible from their bed or favorite chair
- Reading a morning newspaper out loud
Nearly 1 in 4 strokes suffered in the U.S. each year are by people who have had a previous stroke. In addition to making sure the patient or loved one follows doctor's orders and a nurse's plan of care to reduce stroke risk, make sure you can recognize signs of a stroke F.A.S.T, as the American Heart Association outlines:
- Face drooping
- Arm weakness
- Speech difficulty
- Time to call 911
Providing care to a stroke survivor can be a highly frustrating, isolating experience -- for him and for you. Connecting with others in a similar situation can be helpful. Find resources or a support group through the National Stroke Association.
There are a number of organizations that disseminate the latest information, educate and support caregivers, and connect you with local resources, both online and in-person. Below are a few good places to start -- especially during February, American Heart Month:
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