Special Mothers
Most
mothers took care of their children from zero to 18 and often able to
retire from full time parenting when house becomes “empty-nest”
syndrome. The typical ‘empty nest’ syndrome is a double edged sword but
there is a sense of pride
that accompanies the ritual of mothers seeing their children off into
adulthood. This isn’t so when it comes to disabled children into
adulthood. For those mothers, it a very challenging time with mixed
emotions and fears. These mothers have accepted the additional
stress as part of a family with a disabled child. When a mother’s child
is cognitively disabled, be it Downs, Autism, Cerebral Palsy, or any
other mental impairment, a mother’s hopes and dreams take a sharp turn
in another direction unlike mothers with normal
able children. An adult child with disabilities is no different from
any other child who is getting ready to leave home.
Husbands-Fathers
1 Peter 3:7 (New International Version) “Husbands,
in the same way be considerate as you live with your wives, and treat
them with respect as the weaker partner and as heirs with you of the
gracious gift of life, so that nothing
will hinder your prayers.” I have not been a good husband as I
should be. In every marriage, there needs to be verbal, emotional,
social, intellectual, and spiritual togetherness. The word for "live"
means to "dwell together or to be at home with." Peter
is telling husbands that they are responsible for the "close
togetherness" in the relationship. As a husband, I need to be sensitive
to the Carole’s needs, especially when she is a caretaker of her
disabled adult child. Knowing Carole includes those things
that others don't and won't know. Her deep fears and cares. Her
disappointments as well as her expectations. Her scars and secrets and
also her thoughts and dreams. It calls for a sensitive spirit, a
willingness to be involved, to listen, to communicate, to
care. As a husband, I am exhorted to live with my wife "with
understanding."
Mothers with adult disable child
Carole is a mother of a 30-year-old
daughter, Sarah, with significant disabilities. Her challenge at this
stage of her daughter’s life and Carole’s is to allow her daughter the
independence she desires as an adult that will enable her
to continue to grow independently.
Mothers who is a caretaker face the
challenge of feeling that friends and family don’t understand what they
up against. Being the caregiver of a loved one can be difficult for many
reasons. Although stressful at times, it can also be a
fulfilling experience. It is a lonely existence to have a child with a
disability which no-one can see or understand your life long
caretaking. Having a disabled child often demand most of the mother’s
time and she usually have less time to have a normal
social life. It has long been known that mothers of disabled children
experience high levels of stress-related symptoms. Much of this stress
seems to focus on care giving responsibilities and demands that arise on
a daily basis.
Mothers worried about the future
Mothers find themselves, not only in
the role of permanent caregiver, but also of desperate protector as
well. Being a caregiver is a life-term commitment. Being a caregiver
takes a toll. Being a caregiver takes a toll on mothers—physically
and emotionally. Mothers supported her child, cared for her child,
advocated for her child, and love her child into adulthood. She is
exhausted and she is scared of the future. Mothers expect that their
children are going to outlive them however mothers who
have children with developmental disabilities worry about the future.
Carole wakes up around 5:30 in the morning to get Sarah ready for work
at ARC. She makes Sarah’s breakfast. She feeds her breakfast. She remind
Sarah to brushes her teeth. She brushes her
hair. Carole can’t rest until the child goes to bed. Even then, she
can’t rest, often disabled child like Sarah tends to wake up a few times
a night. Which disrupts her quality sleep.
Mothers worry whether any program
(i.e. group home) can provide enough protection or can see to her
child’s complicated medical and emotional quality needs
as she has been providing for years. That kind of care is very,
very expensive to replace mothers. Most non-related caretakers is
unable take care of disabled adult child like their mothers did because
they don’t have the bond as mother-child have.
Mothers who are caregivers often feel isolated
Even when isolated, it’s also common
for mothers to have very little time alone or spend time with her
husband. When dealing with the needs of someone who requires constant
care, a caregiver can feel isolated from the rest of the world.
Caregivers are individuals who often
put the needs of others first. Mother’s care requires constant
attention, which leaves little time for the caregiver to attend to their
own needs. When mothers are a caregiver, finding time to nurture
themselves often seem impossible.
Mothers find themselves giving
round-the-clock care, or spending virtually every free moment attending
to the needs of their adult disabled child. Sarah is independent however
never know if she’ll be needed at one particular moment or the
next, so mothers feel like they need to be constantly available. The
feeling of being "always on duty" can take a heavy toll on a caregiver.
Sometimes, being human, mothers are prone to burnout who devote
themselves to the unpaid care of disabled adult child.
The demands of caregiving can be overwhelming, especially if mothers
feel they have little control over the situation. Fatigue, frustration,
and stress from caregiving can lead to the physical, emotional, and
mental exhaustion that defines burnout. Mothers,
being human also face other stressors like changes in the family
dynamic, household disruption, financial pressure, and the sheer amount
of work involved. This can be called compassion fatigue, a term used to
describe the symptoms of secondary post-traumatic
stress caused by caregiving. Caregiving can trigger a host of difficult
emotions, including anger, fear, resentment, guilt, helplessness, and
grief.
Stress in any amount is still stress
Studies have shown that the stress
experienced by mothers is greater than that for fathers. Mothers who
work outside the home, it is tough on a mother’s health and both her
personal and on-the-job relationships. Often, employers and co-workers
do not understand what these mothers are facing. They don’t put
themselves as a caretaker’s shoes and try to understand. Mothers often
neglect her own needs because her life revolves around working and
caregiving. Mothers often have trouble relaxing, even
when she is relaxing, she feels guilty. Being human, mothers can be
impatient and irritable when she feel overwhelmed, helpless, and
hopeless
"I know God will not give me anything I can't handle. I just wish He didn't trust me so much." (Mother Teresa)
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