Caregiving Tips and Hints
- Caregivers often do not get adequate personal time. It is
important to take care of yourself both physically and emotionally.
Taking time for yourself is not selfish and will improve your
capacity to care for your loved one. Make your needs known
and create time to do the things that are important to you
personally. Continue relationships and activities that are
important to you. Encourage and help your loved one be as independent
as possible and take an active role in his or her care.
- Caregivers may not ask for the help they need to provide
care for their loved one and to take care of themselves. Have
a "wish list" available when people ask what they
can do to help you. Have friends and relatives help you with
specific caregiving or household tasks. Most people want to
help, but do not know what to do. Accept help when it is offered — this
will help you in being your best for your loved one. Recognize
the limits of your own endurance and strength and help your
loved one accept care from others.
- Depression can strike anyone and caregivers are especially
vulnerable — it is the most common healthcare condition
reported by family caregivers. Be aware of the early signs
of depression and see your healthcare professional if you think
you are becoming depressed. You do not have to live with depression.
- Caregivers do amazing work in caring for their loved ones.
Recognize the important and good job you are doing and realize
how valuable you are. Caregiving is a never-ending job and
perfection is an unrealistic goal. Do not allow the normal
feelings of guilt and anger keep you from seeing the value
of your daily caregiving.
- Caregivers can strengthen their coping and stress management
skills by communicating their feelings and needs, setting limits
and making decisions to do things for themselves. Identify
one or two people with whom you can speak freely about your
needs and feelings. Professional counseling can be very beneficial
for caregivers who are trying to not lose their own sense of
self in the role as caregiver. It is appropriate to set limits
and expectations with your loved one, family and friends. Physical
exercise, creative activities, humor and social/family events
are effective strategies for countering caregiver stress.
- Knowledge is empowering. Get as much information about ALS
and caregiving as you can. The more you know, the better prepared
you will be in providing care and support. Ask friends and
relatives to help gather information and resources. Become
an advocate for your loved one and for yourself.
- In becoming a caregiver, some people experience a loss of
the roles and relationships they had with their loved one before
the illness. It is easy to see yourself as more a caregiver
than wife/husband/parent or child. Identify ways to keep your
personal and family roles and relationships alive. Talk about
family events and news about children and grandchildren. Look
at family photos together. Change the daily routines periodically
like adding candles to the dinner table or putting on your
favorite music. Make the effort to retain the relationship
you have had with your loved one — aside from your role
as caregiver it will help you in coping with the multitude
of changes family caregiving poses.
- Caregivers who share resources and their own personal experiences
report less stress and fewer problems. Establish networks and
support systems with other caregivers to share solutions to
common problems and to talk with people who can understand
first-hand what you are experiencing.
- Take advantage of local, state and federal programs that
support and assist caregivers. Some states and local agencies
provide financial support in the form of vouchers or cash for
services and equipment. Many state and community agencies and
non-profit organizations — such as The ALS Association
and religious groups — offer respite services.
- Some states offer tax credits and deductions for family caregivers.
Employed caregivers may want to apply for unpaid Family and Medical
Leave under the Federal program.
