Almost one-third of the U.S. population are informal caregivers and collectively provide about 1.2 billion hours of unpaid work weekly, the equivalent of about 30.5 million full-time care aides. Of those, there are over 2.2 million stoke caregivers in the U.S. So you are not alone.
General tips for caregivers:
- Help the individual become involved outside the home and in leisure activities.
- Encourage as much independence as possible.
- Let the survivor make the decisions.
The rewards of caregiving include an improved appreciation of life, feeling needed or appreciated, and the development of a more positive outlook. But caregiving can also be a tremendous burden. It can result in psychological distress, decreased social contact and activity, depression, stress, and an overall decrease in quality of life. If you see any of these things happening to you, try these tips:
- Seek out caregiver support groups.
- Do not try to do caregiving 24 hours a day. Take a break.
- Be sure to take care of you. Eat, take your medications, exercise, rest, go shopping, have some fun.
- Ask for help from family, friends, or community organizations.
- Remember, you are a caregiver, not a slave.
- Try to keep a positive attitude. This is an important coping strategy.
- Maintain a natural conversational manner appropriate for an adult. If needed, you can simplify your speech by using short, uncomplicated sentences; but don't talk "down" to them. Do not use "baby talk."
- Don't raise your voice; they are not hard of hearing.
- Minimize distractions and background noise, such as a blaring radio, whenever possible.
- Be patient. Repeat the content words or write them down as needed.
- Include the person in conversations and encourage any type of communication, whether it is speech, gesture, pointing, or drawing.
- Avoid correcting the individual's speech, unless they ask for help.
- Do not finish the person's sentence or train of thought for them, unless asked.
- Allow the person plenty of time to talk.
- Don't pretend you understood what was said if you did not.
- A good video of "aphasia etiquette" comes from the Stroke Association of Great Britain.
Ten Guidelines for Interacting with a Stroke Survivor:
Publications, handbooks, and newsletters:
- A Caregiver Guide to Stroke is available from the National Stroke Association.
- A 42-page Stroke Caregivers Handbook is downloadable for free in PDF format. You can also download a text-only version of individual chapters, with no pictures or special formatting.
- You can sign up for a free monthly caregiver e-newsletter or order the free pamphlet Resources for Stroke Family Caregivers from the American Heart Association.
- Tips and tools for everyday living: A guide for stroke caregivers by the Heart and Stroke Foundation of Canada.
- Careliving Community is a social network designed exclusively for caregivers and family members of stroke survivors.
- See the Internet Stroke Center page for general info for caregivers.
- An excellent page comes from the American Stroke Association.
- See the Stroke Family Caregiving for African-Americans, which contains useful information for all caregivers.
- CaringBridge provides free websites to caregivers to easily post updates and progress for the loved one. This reduces the time and emotional energy spent on repeated phone calls and emails and keeps everyone informed with the same, accurate information.
- The list of Caregiver Rights might help you re-focus some time and energy on caring for yourself and let you know that it's not unusual to feel under-appreciated, frustrated, left out and even angry.
- AARP has many tools and resources about caregiving .
- Visit Monica Vest Wheeler's page on Facebook or read her blog.
- Care Partners Resource's goal is to help answer your questions and teach you techniques to help maintain your identity and manage your own self care.
- Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home.
- In San Diego, the Southern Caregiver Resource Center helps families and caregivers by providing services for adults with chronic and/or disabling conditions.
- Caregiver Resource Network contains resource materials as well as programs available in Michigan.
- See the Well Spouse website for the many facets in supporting a loved one.