Been There, Done That ... Tips from Caregivers

Excerpted from "Tips from Caregivers Who've Been There", Stroke Connection Magazine November/December 2003 (Science update July 2013)

In a 2002 report in the Journal of Neuroscience Nursing, researchers interviewed family caregivers to identify their needs and concerns, strategies they used to deal with stroke, and advice they would offer other stroke caregivers. Here are their suggestions.

Organize healthcare needs

  • Keep a running list of questions to take with you to doctor’s appointments.
  • Keep a list of daily medication for the stroke survivor. (Include the drug name, purpose of drug, dosage and possible side effects and who prescribed each drug)  If you're concerned about the drugs prescribed, ask that your doctors work together to make sure that all drugs should be taken. Take this list with you to all doctor’s appointments
  • Use a calendar to keep appointments straight.

Provide emotional support

  • Encourage the stroke survivor to talk about his or her feelings. Listen, show love and patience.
  • Read an article or book together about another stroke survivor. This helps stroke survivors know they are not alone.
  • Join a support group for encouragement and ideas from people who've been there. Locate a support group in your area

Promote independence

  • Allow the survivor to take care of himself or herself as much as possible. Although it may be difficult to watch your survivor struggle to do things alone, this promotes greater independence in the long run. But have patience! The survivor may not be able to do a task as quickly as before the stroke.

Provide socialization opportunities for yourself and your survivor

  • Go to the mall or grocery store with your survivor so you both can enjoy some physical activity.
  • Consider adult day care for the survivor during the week to give yourself a break and a social opportunity for your survivor.
  • Continue pre-stroke hobbies and activities as much as possible. Call friends regularly to play tennis or golf or to go walking, and schedule friends, family or professional caregivers to take care of your survivor during that time.

Source: “Needs, Concerns, Strategies and Advice of Caregivers the First 6 Months After Discharge,” Journal of Neuroscience Nursing, October 2002.