Caregivers of Stroke Survivors
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Caregivers for stroke survivors play an important role in recovery by providing an average of 20 hours per week of care including tasks like transportation, meals, and medication management. They experience high levels of stress and are twice as likely to suffer from depression without treatment. To cope, caregivers must balance self-care with caring for their loved one by asking for help, finding time for themselves, and maintaining social support through groups.
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Caregivers of Stroke Survivors
- 1. Caregivers: Understanding The Affects of Caring For A Loved One Who Has Survived A Stroke June 18, 2013
- 2. As the primary caregiver for a stroke survivor, You are an important part of the recovery process. Potential Feelings Rewarding Challenging Overwhelming Caregiver Role
- 3. In a survey of 1,480 caregivers, it was reported that: On average, caregivers spend 20 hours per week providing care. 13 % of caregivers spend more than 40 hours a week caring for loved ones. How Caregivers Fit Into The U.S. Healthcare System
- 4. Take care of someone who has a chronic illness Taking part in informed decision making and treatment planning Coordinating appointments with healthcare professionals Helping ensure that medications are refilled and taken properly Helping with everyday tasks such as meal preparation, bathing and toileting What Does It Mean to Be A Caregiver?
- 5. Assisting with walking and transportation Monitoring survivor health Being aware of pain, dietary instructions, depression or risk factors that may lead to a second stroke Managing financial or legal and end-of-life matters Providing encouragement and support for your loved one and family members Supporting survivor independence What Does It Mean to Be A Caregiver?
- 6. Behavior Depression & Anger Emotional Liability One-sided Neglect Memory Loss Communication Problems Lifestyle Changes for Survivors and Caregivers
- 7. A person’s “role” or place in the family helps define who they are. When a stroke happens, roles may no longer fit. Types of Roles Spouse Parent Changes in Relationships
- 8. Find new roles and things that your loved one can do This will boost confidence. Encourage your loved one to do as much as possible Help when you need to. Avoid being too protective. Be patient The stroke can make it hard to do simple tasks. What Is You Loved One’s New Role In The Family?
- 9. Help your loved one relearn skills in small steps Start with easy tasks. Slowly, add new skills. Have a daily routine Allow short, frequent times in the day to practice skills. What Is You Loved One’s New Role In The Family?
- 10. Remember that your loved one is facing a lot of changes Realize that your loved one will always be your parent Let your loved one make as many choices as possible Be direct and firm if your loved one’s health or safety is an issue Tips for Changing Relationships
- 11. Caregivers may feel more stress than the general population Twice as likely to become depressed and frequently experience sleep deprivation. Less likely to seek treatment for these conditions. Keep this in mind: Caring for yourself is just as important as caring for your loved one. Caregiver Stress & Depression
- 12. Sadness or an “empty” mood Feeling guilty, worthless or helpless Problems concentrating, remembering or making decisions Change in eating habits and/or weight changes Feeling hopeless Lack of energy or feeling tired and “slowed down” Signs of Depression
- 13. Problems with sleep, such as trouble getting to sleep, staying asleep or sleeping too much Easily angered or irritable Wanting to be alone or spending much time alone Loss of interest or pleasure in hobbies and activities, including sex, that were once enjoyed Signs of Depression
- 14. If you have thoughts of killing yourself: Get help right away! Call 9-1-1 or your healthcare provider. This is a serious problem. RED FLAG: Suicidal Thoughts
- 15. Medicines, such as anti-depressants are almost always helpful. Psychotherapy (talk therapy) is used along with medicines. Talk therapy gives you a safe place to talk about your feelings. Support groups provide a place to share your feelings with other caregivers. Other caregivers understand what you are going through. They can help you find solutions to your problems. Treatments to Discuss with Healthcare Team
- 16. Taking care of yourself will make you a better caregiver. Put taking care of yourself at the top of your list Ask for help Find time for yourself Laugh and have fun Caregiver Self-Care
- 17. 10 Tips for Caregivers: How to Cope 1. Accept that you cannot do this alone 2. Educate yourself 3. Allow yourself to grieve 4. Learn to relax 5. Eat Well 6. Stay Active 7. Have Fun! 8. Stay Social 9. Get Support from Group 10. Take things one day at a time
- 19. Family Caregiver Alliance. (1999). Work and eldercare. Retrieved October 23, 2008, from http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=413* National Stroke Association (2012). Cregivers and Stroke: Caregivers Guide. Retrieved June 13, 2013 from: http://www.stroke.org/site/PageServer?pagename=careliving_guide#cg Pandya, S.M. (2005). Caregiving in the United States. AARP Public Policy Institute. Retrieved October 23, 2008, from http://www.aarp.org/relationships/caregiving/info- 2004/us_caregiving.html* Uphold, C.R., Hanjian, J.M., Wing, K.L., Findley, K.E., & Knauff, L. (2011). Resources & Education for Stroke Caregivers' Understanding & Empowerment (RESCUE). Web- Based Informational Materials for Caregivers of Veterans Post-Stroke. Retrieved June 13, 2013, from: http://www.rorc.research.va.gov/rescue/index.cfm Wilken, C.S. (2006). Balancing work and caregiving: A guide for employers. University of Florida IFAS Extension. Retrieved October 23, 2008, from http://edis.ifas.ufl.edu/FY873*; References
Editor's Notes
- As the primary caregiver for a stroke survivor, you are a very important part of the recovery process. While this role can be very rewarding, it can also be challenging. As you adjust to these life changes, you will have many questions and concerns. This talk will help you during the recovery journey, with tips on how to improve well-being for both your loved one and you.Once your loved one leaves the hospital, the primary responsibility for his or her everyday care switches from healthcare professionals to you. It is normal to feel unsure or anxious—developing a new routine and adjusting to the changes brought about by stroke may seem overwhelming.
- As a caregiver, you are a crucial extension of the long-term healthcare system. In a survey of 1,480 caregivers, it was reported that: On average, caregivers spend 20 hours per week providing care. 13 % of caregivers spend more than 40 hours a week caring for loved ones.
- An individual, such as a physician, nurse, social worker, or family member who assists in the identification, prevention, or treatment of an illness or disability.While the role of a caregiver varies, you may be doing some of the following throughout the recovery process: Taking part in informed decision making and treatment planning Coordinating appointments with healthcare professionals; helping ensure that medications are refilled and taken properly Helping with everyday tasks such as meal preparation, bathing and toileting
- Assisting with walking and transportation Monitoring survivor health; being aware of pain, dietary instructions, depression or risk factors that may lead to a second stroke Managing financial or legal and end-of-life matters Providing encouragement and support for your loved one and family members Supporting survivor independence
- How Do Roles Change After Stroke?A person’s “role” or place in the family helps define who they are. For example, a person’s role could be that of parent or spouse. When a stroke happens, roles may no longer fit. SpouseBeing the spouse or partner of a stroke survivor brings special hardships. The person who once was an equal partner may now rely heavily on you. You may begin to feel more like a parent than a husband or wife. Feelings of loneliness are common. Problems with sexual intimacy and financial concerns can also strain the relationship. Learn more about sex after stroke and how to manage your loved one's finances.Parent and ChildAn adult child caring for a parent brings its own challenges. It may seem that you are caring for or “parenting” your parent. The role reversal can be hard for both you and your loved one. Helping with personal care needs like bathing can cause anxiety and embarrassment. Another challenge can be learning how to balance caregiving with your own family responsibilities. However, keep in mind that caring for a parent can be one of the best experiences of your life. You’ll have the chance to grow closer and learn about one another. Remember that your loved one is facing a lot of changes – Try to understand how hard it is for him or her to accept your care. Realize that your loved one will always be your parent – It is important to treat your loved one as an adult. Be respectful.Let your loved one make as many choices as possible – Ask for your loved one’s advice. Treat your loved one as an equal. Be direct and firm if your loved one’s health or safety is an issue –Accept that you will make mistakes. Remember that the most important thing is to give love.
- Your loved one may be different physically, mentally and emotionally. A lot may have changed. What has not changed is that your loved one is still part of the family. Even if your loved one cannot fulfill past roles, he or she can still contribute. Find new roles and things that your loved one can do – This will boost confidence.Encourage your loved one to do as much as possible – Help when you need to. But, avoid being too protective.Be patient – The stroke can make it hard to do simple tasks.
- Help your loved one relearn skills in small steps – Start with easy tasks. Slowly, add new skills. Have a daily routine – Allow short, frequent times in the day to practice skills.
- Remember that your loved one is facing a lot of changes – Try to understand how hard it is for him or her to accept your care. Realize that your loved one will always be your parent – It is important to treat your loved one as an adult. Be respectful.Let your loved one make as many choices as possible – Ask for your loved one’s advice. Treat your loved one as an equal. Be direct and firm if your loved one’s health or safety is an issue –Accept that you will make mistakes. Remember that the most important thing is to give love.
- Caregivers may feel more stress than the general population, Stress causes increased blood pressure and heart rate.Excessive stress puts you sleep problems and depression. are twice as likely to become depressed and frequently experience sleep deprivation. Depression and sleep deprivation interfere with overall quality of life.Keep this in mind: Caring for yourself is just as important as caring for your loved one. Feeling exceptionally tired, irritable or down in the dumps is not “just part of” caregiving. Notice how you are feeling, get regular check-ups and seek counseling for feelings that are overwhelming or draining. Making the time to care for yourself will benefit both you and your loved one. However, they are less likely to seek treatment for these conditions
- How Do You Know if You Are Depressed?The signs and symptoms of depression vary from person to person. Without treatment, symptoms of depression can last for weeks, months or years. Here is a list of the signs and symptoms of depression. If you have any of these signs for more than two weeks, talk to your healthcare team.Sadness or an “empty” moodFeeling guilty, worthless or helplessProblems concentrating, remembering or making decisionsChange in eating habits and/or weight changesFeeling hopelessLack of energy or feeling tired and “slowed down”
- Problems with sleep, such as trouble getting to sleep, staying asleep or sleeping too muchEasily angered or irritableWanting to be alone or spending much time aloneLoss of interest or pleasure in hobbies and activities, including sex, that were once enjoyed
- Ignoring the stress of caregiving is the number one cause of “caregiver burn-out”. Be honest with yourself about what you are feeling. Do not pretend that everything is okay. Proper treatment helps most people with depression. Ask your healthcare team about the best treatment for you.Medicines, such as anti-depressants are almost always helpful. Psychotherapy (talk therapy) is used along with medicines. Talk therapy gives you a safe place to talk about your feelings. Support groups provide a place to share your feelings with other caregivers.Other caregivers understand what you are going through. They can help you find solutions to your problems.
- Taking care of yourself will make you a better caregiver.Put taking care of yourself at the top of your list – Have regular medical check-ups. Eat right and exercise. Ask for help – Take on only what you can manage. Don’t try to do everything by yourself. Be prepared with a mental list of ways other people can help.Find time for yourself – You need breaks from caregiving. Do things you enjoy. Go for walks or visit your friends. Take yoga or relaxation classes. Get a massage. Treat yourself to special outings on a regular basis. Laugh and have fun – Joke with your loved one. Laugh out loud. Read a funny book. Watch a funny movie or a comedy on TV.
- 10 Tips for caregivers: How to cope1. Accept that you cannot do this alone. Do not feel guilty enlisting the help of friends and family. Assign them specific tasks if they offer to help.2. Educate yourself. Learn about your loved one’s condition and how to effectively communicate with healthcare professionals. 3. Allow yourself to grieve. It takes time to accept the loss of your former lifestyle/relationship, but remember that time will also bring about new goals and dreams for you and your loved one.4. Learn to relax. There are many techniques that you can use, from walking or writing to enrolling in a yoga class or practicing meditation.5. Eat well. A diet rich in fruits and vegetables will keep you healthy and energized. 6. Stay active. At least 30 minutes of daily exercise can greatly reduce stress, help you maintain a healthy weight and improve your mood.7. Have fun! Take some time to do activities you enjoy. Maintaining your own identity is crucial and will help “recharge” your energy for better care for your loved one.8. Stay social. Make an effort to interact with people. Meet up—and laugh—with your friends.9. Find a caregiver support group. Being around others who are going through similar experiences provides an outlet for sharing ideas, venting frustrations and supporting each other through hardships.10. Take things one day at a time. The future is uncertain—not just for stroke survivors, but for everyone. Focus on the accomplishments of each day, and don’t get carried away with the “what ifs” of the future.