If you are caring for a stroke survivor, you may have a lot of questions about whether your loved one will recover and what his or her needs will be in the months and years ahead. You may also worry about how you will manage in your new role.
"Caregiving can be a big load to shoulder," says Maggie Fermental, RN, a stroke nurse at the Beth Israel Deaconess Medical Center in Boston. Formerly an OR nurse, Fermental suffered a stroke at the age of 31 from a fall while ice skating. She now counsels stroke survivors and their families. "Not only do caregivers continue to fulfill their role in the family, they also have to care for the survivor and take on that person's role as well," Fermental says. "It can be overwhelming."
In the U.S., more than 50 million people provide care for a loved one with a disability or illness. Anywhere from 59% to 75% of caregivers are women, and most are caring for an older parent. Yet despite the challenges of caregiving, many people report that they appreciate life more and feel positive about being able to help.
As a caregiver, it can be all too easy to make your loved one the focus of your life. "Caregivers really need to care for themselves too," Fermental says. "People feel obligated to do it all, but it's vital to ask for help. You can't do it alone." Here are some suggestions that can help you balance the needs of the stroke survivor with your own health and happiness.
First Steps for Caregivers
In the first weeks after a stroke, you'll have a lot to learn and assess as you look to the future.
Educate yourself. "One of the biggest stumbling blocks for caregivers is knowledge," says Richard C. Selenick, MD, medical director for HealthSouth RIOSA in San Antonio, Texas. Selenick is also editor in chief for HealthSouth Press and author of Living with Stroke: A Guide for Families.
There can be a lot to learn, so take advantage of every opportunity to learn about stroke and your loved one's condition and prognosis. Take part in support groups or programs that are offered by the hospital. Talk with the health care team about what the stroke recovery and rehabilitation process will be. "The more you learn," Selenick says, "the better you'll be able to care for your loved one."
Look into insurance coverage and assess your finances. Medicare and/or health insurance will cover most of the hospitalization and rehabilitation expenses. However, there may be restrictions on which facilities and providers are covered. So be sure to find out exactly what is covered and what out-of-pocket payments may be needed. Also remember that as your loved one gains abilities or is no longer progressing, coverage may change or stop. The hospital's social service department or a case manager can help you negotiate the often complex world of insurance and explore other options should you need additional aid.
Participate in stroke rehabilitation. Attend a few therapy sessions so that you can support your loved one during stroke recovery. Encourage the stroke survivor to practice new skills, but don't always jump in to help. "Don't do too much," Fermental says. "Be supportive, and allow survivors to do things for themselves." Even small accomplishments will help your loved one become more self-reliant and confident.
Assess your loved one's needs as well as your ability to meet them. The stroke survivor's health care team can help you determine what kind of help will be needed. Caregivers often need to:
- provide personal care such as bathing and dressing
- coordinate health care needs including medications and doctor and rehab appointments
- manage finances and insurance coverage
- help the survivor maintain and increase his or her ability to function
Remember that you can't do everything. Try to be realistic with yourself about what you can take on and what you may need help with.
Coming Home After a Stroke
Once your loved one leaves the hospital, the reality of the situation may begin to sink in for both of you. Here are some things to consider as you take on your new roles.
Consider safety. Ask the occupational therapist if you need to do anything to make the home safer. You may need to move the bedroom to another floor to avoid stairs, get rid of throw rugs to help prevent falls, or put grab bars and seats in the bathroom and shower.
Be prepared for behavior or mood changes. The losses from stroke, whether temporary or permanent, can be devastating to the survivor. "There are a lot of emotions that crop up after a stroke," Fermental says. "Try not to tell your loved one that you know how they feel, because you really can't know," she says. Instead, offer your love, patience, and support. It can be hard to see a loved one suffer, but feeling grief is a necessary step toward accepting life after stroke.
Be on the lookout for depression. Stroke survivors are at risk for depression -- from 30% to 50% are affected. Depression can interfere with your loved one's recovery. Ask his or her doctor what to look for and seek treatment right away if you see signs of depression.
Know the risk factors for a second stroke. Having a stroke puts survivors at a higher risk for a second stroke, so it's important to help minimize that risk. Prepare healthy, low-fat meals, encourage exercise, make your home a smoke-free zone, and be sure your loved one takes medications as prescribed and keeps doctor appointments.
Seek help from outside sources. Getting outside help can make all the difference in your ability to balance your life with your loved one's needs. Respite care can give you time apart so that you can relax and rejuvenate. Family members or friends may be able to come in for a few hours a week, or you may want to consider hiring a care provider. Other types of assistance may include homemaker services, adult day care, Meals on Wheels, and transportation services.
You can find services in your area by going to the Eldercare Locator web site maintained by the U.S. Administration on Aging. The Family Caregiver Alliance also maintains a web site where you can find information and resources for caregivers. You can also contact Family Caregiver Alliance by phone at (800) 445-8106.
Learn to say "yes." "If friends ask you if they can help, always take them up on it," Selenick says. "If you don't need help right away, see if they are willing to commit to something specific later on." You may want to prepare a list ahead of time with different tasks people can do -- from grocery shopping and housework to helping manage finances and even providing care.
Taking Care of Yourself
The more you care for yourself, the better you can care for your loved one. Exhausting yourself won't allow you to provide the patient, loving help you want to give. It's not selfish to take time for your needs -- it's essential, and beneficial, for both of you.
Be patient with yourself. No one is a perfect caregiver anymore than they are a perfect parent. You've never done this before and will have a lot to learn. Build your skills and boost your confidence by taking caregiver classes or workshops offered in your community.
Don't lose your life. "Adjusting to being a caregiver is in some ways like the shock of becoming a parent," Selenick says. "Suddenly, all of your time is devoted to meeting someone else's needs, and it's hard not to think, 'What about me?'"
Remember that you have a right to your own time and activities. Plan time apart and recharge your batteries by participating in favorite pastimes. It's especially important not to isolate yourself. So make time to talk with and visit friends.
Focus on your physical health. Don't ignore minor health concerns, and be sure to get regularly scheduled checkups and health exams. Learn healthy ways to manage stress and relax. Eating a healthy diet, exercising regularly, and getting enough sleep will help you keep up your strength.
Focus on your emotional health. Allow yourself to feel frustrated, angry, and sad, and share it with someone other than your loved one. These feeling are normal, and in order to not dwell on them, you need to express them. This is where friends and support groups can play an important role.
Studies show that caregivers are also at risk for depression, especially if the survivor has dementia. Depression responds well to treatment, so talk with your doctor if you think you may be depressed.
Get Support. To find a support group near you, call your local hospital or do an online search for "caregiver support." You can find online support groups as well as local meetings in your area. Talking with other caregivers can help you feel less alone and provide an opportunity to share resources and caregiving tips.
Remember to laugh. Humor can be your best defense against difficult situations and feelings. You are carrying a heavy load and deserve to laugh and feel joy, so it's important to remain open to the good things life has to offer.