|
Who
Will Hear You Crying in the Night?
By
John Edward Carter
San
Jose Caregivers group
My
wife, Evelyn “Jinx” Carter, had been diagnosed, or
labeled, as a Parkinson disease patient close to five
years ago, and I was her only caregiver for that long
period of time up to her death on May 5, 2003. We were
both retired senior citizens without close family ties
here in the Santa Clara Valley. So after a few years I was
able to set up a routine where there was not much pressure
on either of us: setting up her bathing, feeding, and
medical routine.
Her
care became more complex as her system gradually began to
close down. There came a time when her balance became a
major concern. She began to fall and break fingers, arms,
and ribs. She started out with a cane, then later a
walker, and just at a point when she was moving towards a
wheelchair (in fact, I had put in the order for one), she
had a stroke, which left her paralyzed on her left side
and blind. She was placed in a skilled nursing facility,
initially for some rehab services.
The
doctors felt that she needed 24-hour nursing care and that
it could not be given in the home setting. Since her
throat was closing down she could not take food through
the mouth and had to be fed through a feeding tube (PEG
Tube). After a bout of pneumonia, she was hospitalized for
a week, and then returned to the nursing facility. She was
removed from the rehab section and placed in the long-term
care section of the skilled nursing facility, which meant
that she was no longer eligible for the rehab services.
The only services given from that time on were bathing and
body functioning services by the nurses and aides. Other
types of care became the responsibility of family members:
Such things as grooming, massaging, exercising the arms
and legs, eye care, brushing the teeth, making sure that
her sleeping gowns were clean and reminding the nurses to
make sure that she got her Parkinson’s medicine. She
needed to take it every 3 hours to keep her from having
muscle spasms. She was at the stage where she could not
talk clearly; she was unable to operate the botton to call
for nursing help, either night or day.
There
was a beauty parlor in the nursing home and the beautician
came only once a week. So with over 150 women patients in
the facility, it was a whole day process getting around to
those patients who signed up a week ahead of time for hair
appointments.
Evelyn
was very much concerned about her grooming and had gone to
the same hairdresser weekly over a period of 35 years. So
we went to the hairdresser in the nursing facility. But
because she had not been able to eat anything over a
period of eight months, and not able to drink any water
(even a teaspoonful), her throat was dry, and she could
not sit under a dryer. She got through the first
appointment, and two weeks later we tried it again, but
she could not complete the process. I would tease her and
let her know that her hair at times looked like that of
the boxing promoter Don King. She would laugh and say “I
hope not.”
Two
months after being in the long term care facility, one of
Evelyn’s nieces from the Northern Virginia City of
Spottsylvania came to visit. As soon as she walked in the
house, I asked if there was anything that she could do
about her aunt’s hair. She asked me to take her to the
closest drug store, which I did. She purchased a tool of
about 6 inches long called Atherma Cell that came with a
round medal comb on one end. Attaching a chemical tube to
the other end will heat up the comb. The niece showed me
how to apply a conditioner every other day, and to give
Evelyn a hair treatment, or set her hair. It worked out
beautifully! Even though she could not see her hair, she
could feel it looking good. When visitors came, they gave
her compliments about how nice her hair looked. So it was
part of my ritual every day for the next 6 months, to come
in each morning and do her hair whether she was asleep or
awake. That included giving her eye drops, brushing her
teeth, putting on lipstick and a little blush, applying
some skin moisturizer and rubbing down her arms and legs.
Employees and residents would stop by the room to observe
the hair grooming ritual.
On
the day that Evelyn died, I had taken care of her hair,
and I felt so pleased with how beautiful she looked, as
she moved on into the next stage of her journey.
Deadline
for the Oct./Nov. support
group newsletter is Tuesday, October 14. Articles
of contribution must be received by PPSG by
the above date. Thank you!
If
you are receiving duplicate mailings, or if your name is
misspelled, please notify PPSG office at 408-734-1593.
Thank you!
If
you have any items
for sale or donation,
such as exercise equipment, wheelchairs, etc., please
write to PPSG, call us at 408-734-1593, or post it at www.ppsg.org.
Hope
and Aging
NiVonne Thompson,
LCSW
The Parkinson’s
Institute
Partially
adapted from Making Hope Happen: A Workbook for Turning
Possibilities into Reality by Diane McDermott, PhD and
C.R. Snyder, PhD, 1999, New Harbringer Publications.
www.newharbringer.com
What
is hope? According
to McDermott and Synder, hope is an active term, beyond
merely maintaining expectations or wishes and is made up
of “involving goals, willpower and waypower.” A goal
is something that a person desires to do or have.
Willpower is the driving force behind hopeful thinking,
including the use of affirmations, such as “I can do
this” or “I’ve got what it takes”.
The third component of hope is waypower, or the
capability one has to reach a goal. Hope is about making,
acting on, and believing in a purposeful plan of action.
Making
Hope Happen: A Workbook for Turning Possibilities into
Reality is a collection of wisdom and exercises that help
one to explore important personal factors that influence
and increase a sense of hope.
The authors make valuable suggestions to feel
better about yourself during the aging process and to
understand the importance of hope on a daily basis (p.
204).
-
Take
some exercise every day
-
Good
posture helps you look better and younger
-
Eat
nutritious foods, eating enough, without overeating
-
Learn
to breathe
-
Get
enough rest
-
Keep
yourself mentally and physically active
-
Make
yourself clean, neat
and attractive
-
Grow
your surroundings comfortable
and attractive
-
Consider
getting a pet
-
Try
not to be unnecessarily frugal
-
If
you can, continue to drive
-
Keep
up with current events
-
Be
of service to others
-
See
your doctor regularly
-
Have
some fun every single day
“Finally,
have courage as you get older.
As my mother said, ‘growing old is not for the
faint of heart.’ You
have many challenges ahead of you, and some of them may be
very trying to your hope.
Always do the best you can do, take each situation
as it comes, and cope with it in small steps.
Stay focused on today, and tomorrow will take care
of itself. It
is possible to have a long and enjoyable old age.”
Each
of the tips above can be translated into goals by choosing
something that is important to you. Pave the pathway to
achievement into small, manageable behavioral steps and
make sure the end goal is both manageable and reasonable.
Write it down. Try it out and turn your goals into reality
by making an effort at least once a day to cultivate hope.
Questions
for the Pharmacist
Some
prescription drugs are not covered by health insurance, so
it is important to shop around for the least expensive
pharmacy-then stay with it. The pharmacist will come to
know the patient’s condition and can advise you about
potential problems.
Do
not try drug cost-cutting measures without first
discussing it with the doctor. The pharmacist can advise:
n If a generic substitute can cause adverse side effects.
n If the multiple drugs prescribed can cause potential toxic drug
interactions.
n The risks of not finishing the prescription.
n If the medicine can be put in an easy-to-open, large-size container
with a label in large print.
n If an overdose of the medicine is dangerous for children or a
confused elderly person.
n If a person can smoke, drink alcohol, or drive with the medication.
n If the medicine must be taken with a meal, with water or milk, etc.
PPSG
Board Meetings
We
welcome anyone to drop by our board meetings and share
ideas with us! We meet on the 3rd Wednesday of the
month between 1:30 and 3:30 PM at the Parkinson’s
Institute in Sunnyvale. Our next three board meetings are
September 17, October 15, and November 19. To confirm
meeting date and time, please call the PPSG office at
408-734-1593.
Thank
you so much for your donations!
Please
use return address labels, to help us acknowledge your
donations properly.
If
you have any items
for sale or donation,
such as exercise equipment, wheelchairs, etc., please
write to PPSG, call us at 408-734-1593, or post it at www.ppsg.org
|
