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2012 Issue 3: CAREGIVER'S CORNER

Caring for Your Adult Child after a Stroke: Parents Ask the Expert

Dear Dr. Palmer,

My daughter had a stroke when she was 16. Her moods were up and down, she couldn’t focus and couldn’t read other people’s feelings. After months of rehab, she went back to school. Her mood swings improved and she made decent grades, but she began drinking and hanging out with an older boy who took advantage of her (she was a good kid before her stroke). With counseling, she quit drinking, made new friends and graduated. Now she’s 21, attends a local college and has a nice boyfriend. She lives at home but wants to move to the dormitory. Will she make bad decisions because of her stroke—or has she outgrown that? How can we help her be independent, but safe and healthy?

• Some strokes cause personality changes that persist after physical recovery is complete. These can include impaired ability to recognize others’ emotions, assess risks, control impulses or make rational decisions. Of course, many teenagers experience these problems, even without a stroke! Your daughter seems improved, probably due to recovery from her stroke and normal maturation. But if you—or she—think her stroke is affecting her decision making, an evaluation by a neuropsychologist can help. This would identify any remaining difficulties, and provide guidance on how to manage them. You can help your daughter live safely and successfully on campus—with support. Most colleges have an Office on Disability that helps with academic issues and adjustment to campus life and a health center that provides counseling and substance abuse prevention programs. Your daughter’s primary care doctor can educate her about safe sex and birth control, to help her stay healthy. Most important, when she moves to the dorms, stay in touch and be ready to back her up when needed. Your support will give her security to gradually take on more adult responsibilities.

Dear Dr. Palmer,

My son is 40 years old and had a massive stroke three years ago. He was paralyzed on his right side, severely aphasic and unable to swallow. After a short time in rehab, he went to a nursing home. He was given a bad prognosis and recovery was very slow. His wife couldn’t handle it and she left him. Eventually he could swallow again and now walks with a cane. His aphasia is better but he can’t work and needs help with anything requiring talking or writing. My son moved in with us when he left the nursing home and he’s now divorced. We are in our late 70s and our biggest worry is what will happen when we die? Who will take care of our son?

• Every caregiver needs a back-up plan. First, find someone who can help your son if you become ill. If a family member isn’t available, find a local agency that provides paid caregivers. Next, identify someone who’s able to care for your son if you die or become disabled. Ideally, this should be someone close to your son, familiar with his wishes and needs, and able to make decisions in his best interests—perhaps a sibling or close friend. That person can be legally designated as power of attorney to pay bills and make financial decisions; health care agent to make medical care decisions; or trustee to manage funds you set aside for your son’s care. The documents and procedures for these designations vary from state to state. An elder care lawyer, estate lawyer, and/or certified financial planner can help you make the best possible plan.

Dear Dr. Palmer,

My daughter was 35, single and working when she had a sudden stroke. She is weak on her right side and has aphasia. She’s been with me since discharge from rehab six months ago and I am devoted to her. I drive her everywhere, dress and shower her, manage her bills, get her to bed at a reasonable hour, and screen calls so she doesn’t have to talk if she’s tired. I’m with her 24/7 and help with anything she needs. I don’t want her to struggle. She should concentrate on getting better and not worry about making her bed or fixing meals. Even though I am doing so much for her, she’s been depressed recently and doesn’t seem to be progressing. I don’t understand what went wrong. Is there something else I should do to help?

• You need to do less for your daughter, not more! A common trap for devoted caregivers is helping too much, unintentionally discouraging the stroke survivor from doing things for herself that help her recover. By practicing bed-making or cooking, your daughter can use her brain and muscles to increase strength and coordination. She may struggle with simple tasks, be at a loss for words or walk at a snail’s pace. But only by using her arms, legs and speech can she progress. Due to her stroke your daughter lost her ability to work or live independently. If she’s not given a chance to do anything at home, she may feel pretty useless—and possibly guilty—leading to depression. Screening her calls could also contribute to depression by limiting the control she has over her life and the support she gets from friends (it also reduces her chances to practice talking). You can help most by doing less for her and encouraging her to do whatever she can by herself. Let her decide when to go to bed or talk to friends. She needs some help, but she’s still an adult. If she can’t be left alone, ask one of her friends to take her out or visit with her while you take a break. Socializing with friends may improve her mood, and you may enjoy the change of pace.

Dr. Palmer is the co-author of When Your Spouse Has a Stroke: Caring for Your Partner, Yourself, and Your Relationship (www.hopkinsmedicine.org/rehab/faculty/spalmer.html).

Do you have a question for Dr. Palmer? Please send your questions to amccraken@stroke.org.

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