Trying to predict the future when
diagnosed with a debilitating illness leaves
caregiver and loved one with many, sometimes
confusing, alternatives. Advance directives,
such as a living will, can provide families with
some comfort. There are online living wills that
can be printed, estate lawyers who help with end
of life planning through and designating a
medical power of attorney.
In either case,
advance directives are meant to give the loved
one the ability to say what they prefer should
they be in a position where they are unable to
speak for themselves. Each state regulates their
usage differently, and it is important to know
how your state utilizes them.
A medical power of attorney
allows the loved one to designate a surrogate,
or someone to speak on their behalf. It is vital
that caregivers and loved ones discuss the
variations fully. Simply leaving it as “I know
you’ll do what’s best for me” can ultimately
take the caregiver down a path where “what’s
best” and what the loved one would want oppose
Annie’s mother had been a
registered nurse for years. Over time, her
mother would often comment that she wouldn’t
want her daughter to be the surrogate.“You’ll
just tell them to pull the plug.” This was her
mother’s communication style, direct and
uncensored. “I want them to do everything they
can to help me.” As her mother was always lucid
about her medical care, paperwork fell to the
wayside. However, it seemed clear to the family
what was expected: spare no course of action,
and keep her attended.
her mother had to enter a nursing home, her
brother backed away from making any medical
decisions. Because she was in the medical field
also, she knew the protocol and language. What
she didn’t expect were the options and how their
traditional definitions would change.
nursing home, there would be specific orders for
pain and other medication at intervals. There
would be interventions that might solve one
health crisis but create others.“They would have
put her at the end of the nursing floor and
allowed her to scream until they could give her
the next dose of medication.”Faced with a
nursing home and it’s traditional definition of
“round the clock care,” Annie had to consider
A Possible Alternative
Hospice may be one alternative when advance
directives fail. Compassionate end of life
service allows the caregiver to know necessities
are being met without extensive measures.
Caregivers may be taken aback by hospice
employees who clearly state that hospice does
not “correct” or “cure” the illness. Once past
this blunt statement, caregivers can find relief
that there will be continuous care, and the
loved one will not suffer needless pain.
was the option Annie chose for her mother. She
didn’t realize it at the time, but it was
hospice care, not a nursing facility, that would
meet her mother’s wishes. Everything would be
done to keep her attended and free of pain.
Minor problems would be addressed by the hospice
physician. There would be no extensive measures
with possible complications that would require
other extensive measures.
mother preferred her life to be prolonged by any
available means, no one had considered that more
procedures might create problems that would
deteriorate her permanently.
Discussing advance directives can be an
uncomfortable topic, and predicting the various
turns health might take can be unclear. Updating
advance directives yearly can offset the
discomfort of approaching a tough subject. It
also helps with determining which options might
be best for the foreseeable future.
Caregivers must also consider advance directives
for their own needs. While one’s health may be
in top shape at one time, other factors may come
into play where the caregiver needs a healthcare
advocate. The loved one being cared for may be
completely unable to handle such decisions.
Managing one’s own possible needs is another
aspect of caring for the loved one.
Technology has grown exponentially
since the 1960s, and while we still place our
faith in doctors and medicine, it is our family
members who end up making the final decisions.
Unless a medical case has been taken over by the
court system, doctors will provide information
and guide family to a competent decision. Still,
we may not “like” the doctor assigned to a loved
one’s case, or there may be other factors that
interfere with being able to stop extensive
Keeping family abreast of
changes in decisions, understanding different
treatment options, and other needs can be done
via Lotsa Helping Hands, a free online service.
Everyone can follow up as they choose. It is
also a way for the primary caregiver to stay in
touch with any secondary advocates.
caregivers choose to use an online service or
simply notify key individuals, it is important
to keep a copy of the advance directives on hand
and easy to find. Giving a copy to one or two
individuals who can be prepared to show the
directives if caregivers cannot find their copy
is a backup worth considering.
Many Kinds Of
For the loved one with mental
illness, there are psychiatric advance
directives. Between family and physicians, goals
for care can be decided upon for the future. The
National Research Center on Psychiatric Advance
Directives provides state-by-state information
and other useful data for caregivers and loved
ones. There is even a link to testimonials about
Knowing treatment options
for physical and mental health will help
caregivers and loved ones maintain a sense of
control over their situations.