"Advice to Family and
by Duane Pierce
by David Schell
"Help For Victims
and Their Caregivers"
by Tracy O'Grady, R.N.
by Sherry Pierce
ADVICE TO FAMILY AND FRIENDS
Chief Warrant Officer
United States Army
Two years ago, my
sister, (Sherry Pierce), suffered a stroke that left her in many
people's eyes disabled.
She is not
disabled, but she does have physical limitations. I would like to
give the following advice to Family and Friends of people who have
suffered an injury or illness that resulted in your "Loved One"
becoming physically or mentally limited:
1. Do not treat
your "Loved One" like a child unless they are a child.
2. Continue to
include your "Loved One" in all the activities you used to.
That said, always remember their physical/mental limitations.
3. When talking
about your "Loved One's" injury/illness to other people in their
presence, remember that in most cases, they have not lost their
hearing, even if they have lost their speech.
4. Let your "Loved
One" be as independent as they can possibly be. They will let you
know when they need help.
5. Be forgiving
when your "Loved One" gets frustrated at you. Sometimes people are
hardest on the one's they love the most.
6. Last but not
least, Communicate with your "Loved one".
PERSPECTIVE FROM A FAMILY MEMBER/CAREGIVER
Any serious or sudden debilitating illness not
only impacts the patient, but it has immeasurable effects on the
immediate family. Especially if they are going to become primary
caregivers, once the patient has recovered enough to be released
from critical care.
Most of us in the general public arenít
medical professionals. But, when a serious medical crisis, such as a
stroke, occurs to our loved one, we are lost. In most cases, we are
guided through the initial stages of this horrifying event by
capable medical professionals. Neurologists, neurosurgeons and
others help us to comprehend what has happened. As in the case of a
stroke, it happens so quickly. But it takes much more time after
this tragedy to determine what the outcome will be. And even then,
our highly talented and most capable medical professionals canít
give us any answers. Especially the ones that we want to hear.
We always want to hear that everything will be
okay. That everything will be just like it used to be. Then reality
hits you. Everything is not going to be the same. But, this doesnít
mean that everything is not going to be okay.
When the realization sets into the caregiver,
that your stroke victim loved one isnít going to be the same old
person they used to be, wellÖthatís a tough time. But, love
prevails. We are ready, able and willing to do whatever it takes.
Our loved one is the most important thing in our life. At this
point. jobs, appointments, material things, all takes a back seat.
Oh, sure there are the sniffling, weak minded, self-centered types
who canít cut it. Those people that shirk off their responsibilities
all through out life. You know, the ones that never come through for
you. And if there is any of those types reading this, you know whom
you are. And I say get lost now! Run away and donít look back,
because you are the worst thing in the world to have around a
recovering stroke patient.
Victims suffering from a brain injury need
positive influences in their every day lives. People that love them
for the "new" person that they have become. Caregivers that can help
them adapt to their physical deficits. Caregivers that can encourage
them. Caregivers that can help them with things like physical
therapy on a daily basis. Caregivers that can applaud them when they
make the slightest improvement. It may only be the wiggle of a toe,
but you cannot imagine the concentration and effort that it took to
accomplish something that most of us take for granted.
Get involved as much as possible with the
therapy process, be it occupational, physical or speech. The more
you know, the better caregiver you will be.
In regards to the issue of therapy, as far as
the recovery process, of the stroke patient goes, just remember the
key wordÖ. TherapyÖTherapyÖTherapy. Itís something that was a whole
new experience for me. I never really considered for instance how
many muscle actions it takes to just take one step. And then how
many brain cells it takes to control those actions. When those brain
cells are gone or damaged to a high degree, it takes intense
therapy, guided by a capable professional, on a regular basis for
quite some time in order for the recovery process to reach maximum
benefit. Donít let your resolve slip into discouragement mode to the
patient. Keep a positive and encouraging attitude.
I think that many of us would be very
surprised when we realize how restrictive our health care insurance
might be. Your benefit plan restricts the amount of time that a
person could get inpatient therapy, and then also sets time limits
on outpatient care. So, try to learn as much as you can because in
time, you may be the "outpatient therapist".
And as the physical deficits arenít enough to
deal with, hang on, because youíre going for a ride! You just got an
all day pass on the "emotional roller coaster"! It makes the
scariest ride at the amusement park at the look like a trolley ride.
My experience with brain injury has been
limited to one person, my stepdaughter, Sherry Pierce. Our
relationship is positive, and I could not be more proud of her
determination, confidence, and genuine desire to leave the world in
better shape through helping others that are affected by stroke. Her
attitude toward life is inspirational. Sheís been through hell, but
"sheís O.K." This didnít just happen over night; it took a lot of
hard work on her part, cooperation on the part of her doctors and
caregivers, and the answers to a lot of prayers.
The medical world can explain and treat the
brain, and give therapy for the physical deficits, but there wasnít
any warning for the emotional changes that she went through. And
that is where the roller coaster starts. Itís just that. Itís a
roller coaster of emotions, going up and down and around that are
uncontrollable. Sometimes there would be angry moods, paranoid
moods, and depression moods. It was the one thing that really
knocked me for a loop. I guess Iím just a reality-based thinker. I
could deal with the physical aspects of the stroke. And even the
day-to-day chores of providing assistance to her were things that I
could do, willingly. But the personality changes were scary to me.
Its like electricityÖyou canít see it, you canít smell it, but man
you can feel it! The medical people hadnít really helped us with
I suppose that no one would really notice the
emotional and personality changes except for the ones that know her
closely. I have heard that there are limitations to the amount of
time that it takes for the brain to heal or at least recover as much
as possible. I have heard some people say six months, or even one
year is the limit. But I whole-heartedly disagree with that theory.
Gradually, over a period if time her mood swings diminished, her
reluctance to be around extended family diminished and her
reluctance to be in public places diminished. But all of this took
time. And it took more than a year. We are all "healing" together.
As she continues to show emotional healing two years post stroke, I
too am showing signs of improvement. I have a much greater knowledge
of what she endured, and a greater appreciation for my blessings.
HELP FOR VICTIMS AND THEIR CAREGIVERS
Tracy OíGrady, R.N.
(on the right)
I appreciate you
thinking of me. I sure hope this helps victims and their caregivers
for your website.
A Stroke? A Brain
Attack? What does it mean? How can this happen? What did I do to
cause this? Could this have been prevented? Am I going to speak
again? Walk again, Be an invalid? Be a burden to my family? Will I
recover? How long will it take to recover? Will I die?
Being a Registered
Nurse of 24 years, these are a few questions I have been asked upon
a stroke victimís admission to the Intensive Care Unit (ICU). The
questions may be from the stroke victim themselves or, more often,
from their families. I see the victim at their most acute and
sometimes weakest phase. Sometimes the deficits are mild. Sometimes
they are more severe. Regardless of the severity of deficits, the
fear and confusion is there and very real.
Strokes occur in
different areas of the brain that control different parts of the
body. Sometimes it affects the speech center, causing slurred
speech. It may affect the area of the brain controlling your
movements, causing weakness of an arm or leg. Sometime there is no
movement of the arm or leg. No two strokes are identical. Treatment
may seem similar. However, each personís needs will be different.
Even though a stroke may occur in the same area of the brain of two
different people, treatment will be individualized for their needs.
I believe recovery
from a stroke begins upon admission to the hospital. It is important
to remember; this may be a lifestyle change/or take a lifetime to
recover. In ICU, the nurses assist the physician in stabilization of
the neurological status, blood pressure and/or any other medical
problems. Information shared between the medical staff and the
family is extremely important to assure the best possible care is
given. Among the medical questions, we may ask questions regarding
the victimís personality, job status, education background and
physical ability. Even though the list is not all inclusive, they
help us understand the personís needs, worries, and fears.
After the acute
phase, the patient is transferred to a less acute area of the
are transferred to the rehabilitation facility directly from ICU.
Here the physical recovery is emphasized. We, the nurses in the ICU
rarely see the patient again and learn their outcomes. I do not want
to sound negative, however it is important to realize that recovery
is a lengthy process. There are going to be setbacks. More
importantly, there are going to be successes. A lot of times the
setbacks may seem more prominent than the success. It can be very
discouraging. I encourage the patient and families, be patient.
Recovery is not in large steps but is built upon the small steps. It
may not be obvious. Be diligent in therapy, whether it is physical
or occupational. Surround yourself with positive people that will
encourage your every step and help you celebrate your successes.
For the patient
and family, please remember: Itís OK to get frustrated. Itís OK to
get angry. Itís OK to cry. Itís part of the recovery phase.
Author of "I'M OK"
Caregiving affects people in different ways. No two people are
alike. However, there are common themes in the way caregiving
affects the family. When caregiving for an elderly patient it will
have a heavy emotional effect because the caregiver must face the
painful, inevitable deterioration of their loved ones, leading
ultimately to greater debilitation or even death, even though it is
willingly undertaken and often a source of great personal
commitment will take an emotional toll by just providing the
responsibilities of providing long-term care to a disabled victim.
It may cause depression, a sense of burden, and cause anger and
anxiety. The levels of these emotions have been known to increase if
the levels of function of impairment have increased and of course if
the recovery is positive and progression improves stress levels
Women are known to
have a higher level of patients when it comes to caregiving (Study
taken by University of Illinois 2001).
Physical toll on
caregiving can be overwhelming, watch heavy lifting and get rest.
Get a fill-in for a couple of hours a day or at least every other
day and take a break. Assist your victim to gain independence this
will help with their self-esteem and take a load off you.
will in one form or another is a burden in most cases, if the victim
is permanently disabled. Make sure you refer to the Social Security
Link and begin applying for it. Contact the Insurance Company and
become educated whatís covered and whatís not, so their will be no
surprises. From a caregiving standpoint, (if the tragedy has just
taken place), consider using the family leave act at your place of
employment. This will give you up to12 weeks to make a plan.
Lastly, every day
is hard and much harder at firstÖ. Patients and love will go a long
Good Luck & God Bless,
Sherry L. Pierce