Stroke Smart Magazine

May/June 2009
CAREGIVER'S CORNER

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Building Independence
Provide Support While Re-establishing Routine

By Stephanie Mensh

Relationships are an ongoing balancing act be­tween satisfying your own needs and support­ing your spouse and family’s needs. Strokes turn this balance upside down in almost everything you do, every day. My husband and I had been mar­ried four years when he had his stroke at age 36. Prior to his stroke, Paul supported us financially, was the engine driving our social life, shared the household chores and strongly encouraged my educational and career pursuits. Suddenly, he needed all this support from me . . .  and more.

Although I didn’t realize it at the time, I also needed more support. I was lucky to have family and friends nearby and an understanding employer. Even so, I felt alone, scared and overwhelmed. I felt boxed in: I could no longer work late or take a 6 a.m. exercise class.

Survivors and Caregivers Lose independence

Paul came home from the rehab hospital in a wheelchair, his right hand and leg paralyzed and had severe aphasia. He could only say a few words and often mixed up the meaning of yes and no. He had lost his ability to be independent; so had I. We needed to help each other rebuild self-confidence, re-establish independence and redefine our respective roles our in marriage.

Supporting Independent Communication

Paul’s stroke impaired his ability to communicate (aphasia). Learning to communicate was key to Paul’s independence and our successful marriage.

Here are ways that I support him:

• Taking time to listen.
• Urging him to express the entire thought, and not letting him give up or give into his (and my) frustrations.
• establishing the topic, and having him indicate when he is changing topics.
• repeating, rephrasing, or asking questions to be sure I understand what he is trying to tell me.
• Using a pocket notebook and pen to write words and draw pictures; Paul to express himself; me to confirm.
• Helping him plan ahead: if he needs to take a taxi, or get a ride home, he takes written directions to our house.
• When we are with others, letting him first say as much as he can, and if our friends don’t understand, then rephrasing it and asking Paul if this is what he meant.

Share Decisions and Responsibilities

At first, I tried to make all the decisions. The profes­sionals typically asked me questions, not Paul. It was my job to find a way to carry out the decisions and I thought I knew what was best for us both.

That didn’t last long. Paul wanted to understand his choices and demanded to be treated like an adult and partner. He was willing to take responsibility. This was the first and most important step toward recover­ing independence.

Personal Care

Re-establishing a daily routine is a key step toward independence. We worked with Paul’s occupational and physical therapists on goals for the basic activi­ties that would permit Paul to use the toilet, shave, shower, brush his teeth and dress himself.

I had to overcome my impatience and the urge to do it for him. Instead, I found creative ways to make it easier for Paul to do things himself. As long as he seemed relatively safe, I would leave the room. We monitored how much time he needed and celebrated as he improved. This built Paul’s self-confidence and gave me a block of time to take care of other things.

Home Chores

Being a responsible partner meant that Paul had to take on his share of household duties, including mak­ing a snack, doing dishes, folding laundry, helping to pay bills and making a shopping list.

I supported these activities by rearranging the furniture and dishes to be within reach. I also rearranged my at­titude: Paul doing chores was more important than how perfect he did them. We both learned to say “thank you” and appreciate the other’s efforts. By helping Paul regain his independence, I regained my freedom, too.

Stephanie Mensh, wife of stroke survivor Paul Berger, provides caregiver information at: www.strokesurvivor.com and can be reached by e-mail at: Stephanie@strokesurvivor.com.

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