People who provide help for stroke survivors are often called caregivers. Everyone involved in helping is a caregiver - spouse, family members and friends. It's important that caregivers and stroke survivors strive to be partners in their recovery efforts. It's often a challenge for both to adjust to their changed roles, and the adjustment may be easier if both parties share in decision-making and share their feelings honestly.
Common responsibilities of caregiving include:
- providing physical help with personal care and transportation
- managing financial, legal and business affairs
- monitoring behavior to ensure safety
- managing housework and meal preparation
- coordinating health care and monitoring medications
- helping the survivor maintain learned rehabilitation skills and work to improve them
- providing emotional support for the patient and family members
- encouraging the patient to be as independent as possible
As a caregiver, you have to communicate with many people including your loved ones, family, friends, co-workers, bosses, health care professionals and insurance companies. Constructive and effective communication is key to your success. Although your time and patience may be stretched thin, it's important to stay organized, separate your emotions from your conversations and keep on the subject for each person you talk to. Here are some simple guidelines to help you stay focused and get the best results:
- When talking to your family, talk openly about your fears, worries and needs and remember that everyone is feeling the pressure and insecurity of the situation so try to be patient.
- When talking to health care professionals, write all your questions down to make sure you get all topics covered and try to separate your anger and frustration about the situation from your feelings about the doctor; remember, you are both on the same side
- When talking to your loved one, give both of you time to accept what has happened and realize that your roles may have changed and understand that stroke can have a big impact on your loved one's ability to communicate, especially if your loved one has aphasia. Be willing to accept any and all forms of communication as equally valid including gestures, writing, drawing, notebook, intonation and speech.
Many people find caring for another person very rewarding. However, there are times when post-stroke needs can be too much for any one person. There are resources available in the community that can help like:
Adult day care - professional supervision of adults in a social setting during the day
Adult foster homes - supervised care in approved and licensed private homes
Meal programs (such as Meals on Wheels) - sponsored nutrition programs
Home health aide service - in-home personal care assistance
Homemaker assistance - supervised, trained personnel to help with household duties
Respite care - people come into the home for a limited time to give caregivers a break
The National Family Caregivers Association offers these tips for family caregivers:
- Choose to take charge of your life and don't let your loved one's illness or disability always take center stage.
- Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job and you deserve some quality time just for you.
- Watch out for signs of depression and don't delay in getting professional help when you need it.
- When people offer to help, accept the offer and suggest specific things they can do.
- Educate yourself about your loved one's condition. Information is empowering.
- There's a difference between caring and doing. Be open to new technologies and ideas that promote your loved one's independence and help you do your job easier.
- Trust your instincts. Most of the time they'll lead you in the right direction.
- Grieve for your losses and then allow yourself to dream new dreams.
- Stand up for your rights as a caregiver and as a citizen.
- Seek support from other caregivers. There is great strength in knowing that you are not alone.
A stroke can change a person's life forever; your loved one may even be disabled or have difficulty communicating. It is important for you to get support, have patience and be prepared to create a different way of life for you and your loved one. Learn everything you can about their condition and help them get back into life.