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From The Editor
A New Year's Resolution Revolution
At the end of each
December, as the pages close on yet another calendar year, I
find myself trying to elicit a defining theme from the
events of the previous twelve months. This year I have heard
many stories from caregivers reminding me there is still one
issue of great importance to the relationship between family
caregivers and health care professionals— communication.
Recently, Fred, a close
family friend who has been living with Parkinson’s disease
for the past five years was rushed to the hospital
complaining of extreme dizziness and nausea. An eighty-four
year old former Navy commander, Fred is used to being if not
in charge, at least in the know. He and his wife, Anita,
have been involved in all aspects of his care, learning all
they can about his diagnoses and even discussing new
treatment options with his physicians.
So it became worrisome
when after a night in the emergency room hallway, as he was
being admitted to the hospital, Fred was told that a spot
was discovered on his lung. From Wednesday night to Monday
morning, they were not told another thing until an attending
physician appeared in Fred’s room to announce to the couple
that Fred’s condition was terminal and due to his advanced
age, there would be no medical options available for his
treatment. He then turned and left the room. Fred and Anita
have gone from too little information to information
overload within the course of a few short days. The truth
is that the medical care this couple received was exemplary,
but above and beyond that, all they needed was to be “kept
in the loop”, to be given information in a considerate
manner and to be treated as partners in care.
professionals who care for our loved ones do a remarkable
job under unimaginable circumstances, a good additional new
year’s resolution must be made to take an extra moment and
consider the effects that little, no or inappropriate
communications have on both patients and caregivers.
After all, we need all
the partners we can get.
Happy New Year.
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Embarrassed About Incontinence? Don’t Be
By Michael Plontz, Staff Writer
One thing that most caregivers have in common is dealing with
incontinence in their loved ones or themselves.....Continued
The Gift of Now
by: Ann Fowler
A hedge row stitches suede sky to prairie
I brake for a weathered, red truck and read the “eat beef” bumper
Enjoy a Guilt-free Time-out
By Kate Murphy, RN
Why is it that the words
“respite” and “guilt” seems to go hand in hand?....Continued
Caregivers New Year's Resolution
by Kristine Dwyer, LSW
In this new year, I will..
Learn to take one hour out of
each day just for myself to read, enjoy a hot bath, journal my
thoughts or call a friend.
Top Ten Things For Caregivers To Start Doing
Approaching New Year
1. Keep records of all medications and
reactions: make notes about what works, what doesn’t and when you
informed the physician of any problems. ...Continued
My emotions are so confused
right now. They've been confused
for about 6 months now. On June
9th, 2006, my fiancé was
diagnosed with Acute Myelogenous
Leukemia. He was admitted to the
hospital the day he was
diagnosed and stayed there for 4
weeks. 3 months ago, he went
into another hospital for a stem
cell (Bone Marrow) transplant
and was in there for 6 weeks. He
came home on the 2nd of October.
I feel overwhelmed with taking
care of him even though most of
his care is given by his mother.
I take over when I come home
from work at night. I haven't
had a real day off since June,
and I started a new Job two days
before he went into the hospital
the second time. I feel lucky
that I found my new job because
not only is it less stressful,
it pays better, and the hours
are much easier to handle. Also,
with his condition, I wouldn't
have been able to stay at my old
job because I used to work with
animals, and he is now extremely
immunodeficient. I feel guilty
because I'm not home taking care
of him. I feel guilty enjoying
my time at work and feel that I
don't have the right to feel
overwhelmed. I never see any of
my friends, so the only one I
have to talk to about my
feelings is him. I try not to
burden him with how I'm feeling.
My family is 200 miles away.
We are still planning our
wedding for next June. We had
chosen our date only 6 weeks
before he was diagnosed.
Everything happened so fast. I
faced losing him (and still do).
If I lose him, I lose
I focus my extra energy on
planning our wedding, because I
need something to look forward
to. I want to give him a
beautiful wedding. I feel lucky
that I have a good enough job
and he is receiving disability
so that I don't have to rely too
much on my family to help me pay
for the wedding. Things are
going so much better than I ever
could have hoped. But why do I
still feel so crappy? I'm tired
and his mother is driving me
crazy. I wish she would go back
to her home, but if she did, I
wouldn't be able to take care of
him the way he needs. He's
incredibly independent and is
able to do most things on his
own, but the doctors still say
he needs 24-hour care. We are
also incredibly lucky that we
live in the same city as one of
the top-ranked Bone marrow
transplant centers in the world
- we didn't need to relocate. I
know how lucky we are and how
much worked in our favor. But I
can't help feeling like a victim
and I hate feeling that way.
I feel cheated and I feel that
he was cheated because of his
disease. We are both only 23
years old and haven't really
been given a chance to build a
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