Word Origin 1. fatigue, emotional distress, or apathy resulting from the constant demands of caring for others.
Caregivers
of a disabled child can experience compassion fatigue. It results from the
taxing nature of showing compassion and caring for someone whose care
requirements is continuous and unresolvable. One may still care for your child
as required, but the natural human desire to help our child is significantly
diminished because of
compassion fatigue.
This phenomenon also occurs for care givers involved with long term care, and not only parents in full time care of their disabled child. Care givers may develop symptoms of depression, stress, and trauma. Those who are primary care providers (typically a parent), are at a higher risk of developing these symptoms.
In
the medical profession, this is often described as "burnout": the
more specific terms secondary traumatic stress and vicarious trauma are also
used.
Charles
R. Figley, co-author of Compassion Fatigue: Coping With Secondary Traumatic
Stress Disorder in Those Who Treat the Traumatized, states that, “there is a
cost to caring.
What
are some common symptoms of compassion fatigue?
Compassion
fatigue has several symptoms. A person might isolate themselves from others,
excessively voice complaints, appear sad and apathetic, display poor hygiene,
have difficulty concentrating, become preoccupied and bottle up their emotions.
A person suffering from compassion fatigue may also participate in compulsive
behaviors such as overeating and spending, substance abuse, promiscuity and
excessive gambling.
These symptoms of compassion fatigue may lead to more
serious problems such as indebtedness, legal problems, chronic physical
ailments including reoccurring colds and gastrointestinal problems, flashbacks
to traumatic events and reoccurring nightmares.
Other
symptoms could include: •intrusive thoughts • chronic fatigue • sadness • anger
•second guessing •detachment •emotional exhaustion •fearfulness •shame •physical
illness •absenteeism from work
As
a parent caregiver of a disabled child, you may find yourself facing a host of
new responsibilities, many of which are unfamiliar or intimidating. At times,
you may feel overwhelmed and alone. But despite its challenges, caregiving can
also be rewarding. And there are a lot of things you can do to make the
caregiving process easier for both you and your loved one.
A look at caring for a disabled
child
Providing
care for a family member in need (and in our case a disabled child), is an
age-old act of kindness, love, and loyalty. And as life expectancies increase,
medical treatments advance, and increasing numbers of people live with chronic
illness and disabilities, more and more of us will participate in the
caregiving process.
There
are many different types of family caregiver situations. We will today focus on
caring for a disabled child. Regardless of your particular circumstances,
you're facing a challenging new role.
If
you're like most family caregivers, you aren't trained for the responsibilities
you now face. And you probably never anticipated you'd be in this situation. We
love our child and want to provide the best care we can. The good news is that we
don't have to be a nursing expert, a superhero, or a saint in order to be a
good caregiver. With the right attitude and the right help and support, we can
be good caregivers without having to sacrifice ourselves in the process.
It is important to: •Learn as much as
you can about your childs disability and about how to be a caregiver. The more
you know, the less anxiety you’ll feel about your new role and the more
effective you’ll be. •Seek out other caregivers. It helps to know you’re not
alone. It’s comforting to give and receive support from others who understand
what you’re going through. •Trust your instincts.
Remember, you know
your child best. Don’t ignore what doctors and specialists tell you, but listen
to your gut, too. •Encourage your child’s independendance
(as much as possible especially as an early intervention strategy). Caregiving
does not mean doing everything for you child. Be open to technologies and
strategies that allow your child to be as independent as possible. •Know your
limits. Be realistic about how much of your time and yourself you can give. Set
clear limits for yourself, and communicate those limits to doctors, family
members, and other people involved.
Tips
for Making Caregiving Easier
Tip 1: Accept your feelings
Caregiving
can trigger a host of difficult emotions (including anger, fear, resentment,
guilt, helplessness, and grief). It's important to acknowledge and accept what
you're feeling, both good and bad. Don't beat yourself up over your doubts and
misgivings. These feelings don't mean that you don't love your child
member—they simply mean you're human.
What
you may feel about being a caregiver of a disabled child
•Anxiety
and worry – You may worry about how you will handle the additional
responsibilities of caregiving and what will happen to your child if something
happens to you. You may also fear what will happen in the future as the
condition of your child deteriorate?
•Anger
or resentment – You may feel angry or resentful toward the child you’re caring
for, even though you know it’s irrational. Or you might be angry at the world
in general, or resentful of other friends or family members who don’t have your
responsibilities.
•Guilt
– You may feel guilty for not doing more, being a "better" caregiver,
having more patience, accepting your situation with more equanimity.
•Grief
– There are many losses that can come with caregiving (the healthy future you
envisioned with your child; the goals and dreams you’ve had to set aside).
Even
when you understand why you're feeling the way you do, it can still be
upsetting. In order to deal with your feelings, it's important to talk about
them. Don't keep your emotions bottled up, but find at least one person you
trust to confide in.
Where
can we go for support – possibilities include:
•Family
members or friends who will listen without judgment •Your church, temple,
or other place of worship •Caregiver support groups at a local hospital
or online
•A
therapist, social worker, or counsellor •Organizations specific to your child’s
disability
Tip 2: Don't try to do it all
Even
if you’re the primary caregiver of your child, you can’t do everything on your
own. You’ll need help from friends and other family members, as well as health
professionals. If you don’t get the support you need, you'll quickly burn
out—which will compromise your ability to provide care.
But
before you can ask for help, you need to have a clear understanding of your child’s
needs. Take some time to list all the caregiving tasks required, being as
specific as possible. Then determine which activities you are able to meet (be
realistic about your capabilities and time). The remaining tasks on the list
are ones you'll need to ask others to help you with.
Tip
3: Asking family and friends for help
It's not always easy to ask for help, even when you desperately need it. Perhaps you're afraid to impose on others or worried that your request will be resented or rejected. But if you simply make your needs known, you may be pleasantly surprised by the willingness of others to pitch in. Many times, friends and family members want to help, but don't know how. Make it easier for them:
•Set
aside one-on-one time to talk to the person •Go over the list of caregiving
needs you previously drew up •Point out areas in which they might be of
service •Ask the person if they’d like
to help, and if so, in what way •Make sure the person understands what would be
most helpful to both you and your child.
Tip
4: Attend to your own needs
Someone said that “The capacity to care is the thing that gives life its deepest significance and meaning.” It's essential that you receive the support you need, so you don't lose that capacity. While you're caring for your child, don't forget about your own needs. Caregivers need care, too.
Emotional wellbeing of caregivers
•Take
time to relax daily and learn how to regulate yourself and de-stress when you
start to feel overwhelmed.
perspective and serve as a way to release strong feelings.
•Talk with someone you trust to make sense of your situation and your feelings.
•Feed
your spirit. Pray, meditate, or do another activity that makes you feel part of
something greater. Try to find meaning in your life and in your role as a
caregiver.
•Watch
out for signs of depression and anxiety, and get professional help if needed.
Social & recreational needs of family caregivers
•Stay
social. Make it a priority to visit regularly with other people. Nurture your
close relationships. Don't let yourself become
isolated.
•Do
things you enjoy. Laughter and joy can help keep you going when you face
trials, stress,
and pain.
•Maintain
balance in your life. Don’t give up activities that are important to you,
such as your
work or your hobbies.
•Give
yourself a break. Take regular breaks from caregiving, and give yourself an
extended break at least once a week.
•Find
a community. Join or re-establish your connection to a religious group, social
club,
or civic organization. The broader your support network, the better.
Physical needs of family caregivers
•Exercise
regularly. Try to get in at least 30 minutes of exercise, three times per
week. Exercise is one of the best ways to
relieve stress and boost your energy. Soget moving, even if you’re tired.
•Eat
right. Well-nourished bodies are better prepared to cope with stress and get
through
busy days. Keep your energy up and your mind clear by eating nutritiousmeals at regular times throughout the day.
•Avoid
alcohol and drugs. It can be tempting to turn to substances for escape
when life
feels overwhelming, but they can easily compromise the quality of your
caregiving. Instead, try dealing with problems
head on and with a clear mind.
•Get
enough sleep. Aim for an average of eight hours of solid, uninterrupted sleep
every
night. Otherwise, your energy level, productivity, and ability to handle stresswill suffer.
•Keep
up with your own health care. Go to the doctor and dentist on schedule,
and keep up
with your own prescriptions or medical therapy. As a caregiver, you
need to stay as
strong and healthy as possible.
Tip
5: What else can we do as care givers
•
Parents supporting each other here at Aurora? (for instance a parent telephone
support system where we can call a fellow
parent when we need to just talk withsomeone in a similar situation as us?)
•
Telephone check-ins – where we have someone call us (prescheduled calls), to
see if we
are doing okay? Especially after a trying incident with our child.
•
Check with your local religious group, tell people about your challenges and
ask
for specific support.
The Next step
Manage
caregiver stress and avoid burnout.
There's no getting around it. Caregiving is stressful. But you don't have to be
overwhelmed by your responsibilities. Learning to manage stress is part of
being a good caregiver. And it's not as impossible as you may think.
Awareness
is important when dealing with compassion fatigue. Heightened awareness often
leads to better insight into ones situation of specific care.
Oftentimes,
people are not fully aware of the effect their care giver responsibilities has
on them emotionally. Becoming aware of behaviours in a person's care giver conditions
and challenges may lead a person to recognize the signs and symptoms of
compassion fatigue early on and prevent the condition. Awareness is also the
first step to wellness for a person suffering with compassion fatigue.
In conclusion
Healing from compassion fatigue begins by practicing authentic self-care, finding support and obtaining information.
Authentic
self-care is sustainable by putting a few techniques into place. Establish personal
boundaries in what you can and cannot do, learn to express feelings and personal
needs verbally with loved ones, make a positive change to a negative
environment and enhance awareness with education.
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