When Stroke Strikes – Survival Tips for Caregivers
By Lisa M. Petsche
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Strokes are the leading cause of long-term adult disability in the country. Approximately 600,000 Americans experience one each year.
Areas of functioning that may be affected include mobility, personal care, communication, mood, personality, behavior, memory and problem-solving ability. Paralysis or weakness on one side of the body is the most obvious sign.
Like survivors, family members initially experience a wide range of feelings. These can include shock, relief (that their loved one survived), denial, fear, anxiety, anger and sadness.
Once the survivor is medically stable, an inpatient rehabilitation program may be recommended. The goal is to reduce disability and, where permanent disability remains, learn to manage it in the best possible way.
Meanwhile, the survivor and family face an uncertain future - for example, how much functioning the person will recover and if and when he or she will be able to return home.
Coping with Uncertainty
How can family members manage the stress and stay positive during this unsettling time? The following are some survival tips:
- Learn as much as possible about stroke, and share the information with family and friends.
- Encourage your loved one (if able) and close family members to share in decision making. Don’t shoulder all of the responsibility.
- Attend some therapy sessions with your loved one. Focus on progress made and encourage him to do the same.
- Take things one day at a time so you don’t get overwhelmed.
- Find at least one person you can talk to openly, who will listen and empathize.
- Look after yourself. Schedule regular breaks from visiting your loved one. Ask relatives and friends to fill in the gaps.
- Nurture your relationship with your loved one. If he’s unable to converse, share news about family, friends and current events, read aloud, listen to music or watch TV together.
- Keep life as normal as possible. Continue to involve your loved one in family activities and community events. Register him with the local accessible transportation service if necessary.
Planning for the Future
Once your loved one has reached his potential, the focus will shift to discharge planning. If he'll be returning home, the rehab team makes referrals to community resources as appropriate.
The discharge plan addresses issues around medical management, self-care and home management skills, mobility, accessibility (home and community), safety and finances, as well as social and emotional needs (of both survivor and caregiver).
You may have to take over practical tasks such as managing finances, preparing meals and maintaining the home. You may also have to assume the role of hands-on caregiver, assisting with dressing, grooming, bathing and toileting.
Given the demands of caregiving, a certain degree of stress is inevitable. Here are some strategies to keep it manageable and prevent burnout:
- Guard your health: eat nutritious meals, get adequate rest, exercise and see your primary physician regularly.
- Find something relaxing you can do to give yourself a daily break — such as quietly enjoying a cup of tea, reading, writing in a journal or listening to music.
- Stay connected to friends and outside activities.
- Simplify your life. Set priorities and don’t waste time or energy on unimportant things.
- Give yourself permission to feel all the emotions that surface. Accept that there will be difficult moments, but don’t dwell on them.
- Acknowledge that you can’t – and shouldn’t – do it all alone. Ask other family members to share the load.
- Take advantage of respite services in your community.
Talk with other caregivers. Join a community support group or an Internet group if it’s hard to get out.
Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and elder care issues.