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Stroke Recovery: Tips for the Caregiver - December-08-13
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:
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 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
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