STORY BY:

Karen Krakower

The unthinkable has happened: your loved one has had a stroke. Luckily he survived. His color is good. His rehabilitation is going well. In fact, there's talk of his coming home any day now. How do you turn surviving into thriving?

Take a breath. Take two. Then start at the front door, get down on your hands and knees, and look around.

Clearing the decks

"The first thing you do as a caregiver is to prepare your house before your loved one comes home," 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. Depending on the part of the brain that's been assaulted, you will need to make your home as user-friendly as possible. If the stroke survivor is using a wheelchair or a walker, do you need ramps? Are there rooms where you need to step up or down to enter? Do the bathrooms have bars, and are the doorways wide enough to let a wheelchair pass? What about the steps up the front porch?

"Make sure your teenagers or grandkids know that shoes can't be left in the middle of the floor anymore," Ostwald says. That goes for the discarded People magazine down there, too. Walk your home as if it is booby-trapped. Do you have throw rugs in traffic areas? Slick floors? Dangling phone cords? Is your carpet so thick that a wheel chair cannot roll?

Different strokes for different folks

Now is the time for customized organization. But you can't customize until you know everything you can about your loved one's particular brand of stroke and its unique set of challenges.

For instance, if the patient has what's known as a field cut (left or right-sided blindness), put your hand over one eye and take note of what you can't sense or see in your own home. You might have to turn her dinner plate around for her to realize there is still half a plateful of food to be eaten.

Think about your layout. What your brain takes for granted architecturally, like sharp corners, low-hanging ceilings or walls that jut out, may be "new" information for a stroke patient. She might be relearning the simplest geography of her own house. But learning it again is also part of rehabilitation. And until she does, purchase safety bumpers for those kitchen counter corners.

If the stroke affected motor skills, as in left-sided paralysis, imagine the simple task of removing the cap and squeezing the toothpaste—with one hand. So, become a drugstore detective. Look for every product that fits our consumer-oriented society: pump toothpaste, pump soap, spray butter. Rediscover the shoe horn. Fall in love with Velcro.

But there is a difference between caring and doing, warns Ostwald. Part of home rehabilitation is fostering your loved one's own independence in his own world. Replace a few buttons with Velcro, but encourage him to negotiate the sticky strips himself.

Organize your chaos: establish a routine

"Stroke disrupts every aspect of a survivor's life and the family's routine, but routine is critical," Ostwald says. "In those first few months especially, not only does it help rehabilitate them mentally, but it also gets them out of bed in the morning."

Do the shower at the same time each day. Plan for the physical therapist to come at specific times. Though your universe will feel as if it revolves around your loved one, it also will free you to count on certain chunks of time that are just for you. And when those chunks come, take them.

Take your walk together at designated times, like dusk, or after a meal, so that this newly reorganizing mind can expect it. Find places that are free of obstacles and other hazards that make it difficult for wheelchairs, walkers or canes.

If possible, take up well-meaning offers from friends or care teams to sit with your loved one at pre-scheduled sessions so that both of you can look forward to the visit.

The game the whole family can play

If you’re lucky enough to have extended family, multiple generations living in the same home or a network of caring friends, then blow the whistle, Coach, and huddle. Plan a family or “team” meeting before your spouse gets home. Divide up daily responsibilities to free you as the primary caregiver. Expect reluctance, disappointment and the oddest of family members to rise to the occasion, including the stroke survivor. Your loved one is still a contributing member, so assign him his “tasks.”

Bring on the little kids. Children are marvelous at chattering away, often more patiently than adults. They can read the newspaper to their loved one, open mail and entice almost anyone to tune fine motor skills with a box of crayons and drawing paper.

And like children, remember to...play. “Game playing is one of the best rehabilitative tools because it not only stimulates the brain but also keeps the patient interactive with the family,” Ostwald suggests. Any game that calls for organizational thought processes, such as checkers, Chinese checkers or dominoes is helpful and fun. If the stroke survivor can’t hold a hand of cards, buy wooden card holders.

If aphasia (speech/language disruption) is present, steer clear of Scrabble for awhile. But dust off the Monopoly box: it engages just about every aspect of the brain—and it’s a game the whole family can play.

Updated: 4-02-2008

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