Lies. Damn Lies and Statistics Editorial Responses
These are just some of the many responses we received
from our
Editorial of 05/02/07
-
Lies. Damn Lies and
Statistics
My sister, brother and I
provide caregiving for both parents. We all work
full time, but since I have no children, I am
currently doing more of the caregiving tasks. My
brother saw that I was becoming stressed out and
made arrangements with his employer to flex his work
schedule so that he could do the dinner prep and
evening medications one weekday evening.
Just having that one day where I could take time for
what I needed (gym workout, hair appt, dinner with
friends etc) has made such a difference. AND Mom and
Dad get to spend additional time with their son!
So if your readers have a family situation involving
caregiving, I hope that they realize the value and
importance of pitching in to help!
K.M.
Three cheers for each and
everyone who works hard in their countries, states,
and communities for funding of respite care! It
provides a necessary and useful pause for
caregivers. Now, what about the person who uses the
service? What about the quality of the service? Is
the person who uses the service - the actual
customer of the service - involved in the evaluation
of the service? Does the representative of the
people (the government official who signs the check
for the service) evaluate the service? Licensing
organizations most often assures everyone who works
there has passed a test, gone to school, or sat
through some in-service. In no way does it assure
the quality of the service, the usefulness of the
service, the enjoyment of the service.
Unfortunately the need for these services far
surpasses the availability of these services. The
marketplace does not work when it comes to respite
service. Most caregivers are happy to find an
opening!
As a person living with the diagnosis of dementia,
probably of the Alzheimer's type I want advocates of
government supported respite services to first
identify what are quality respite services, as
determined jointly by people with dementia and their
caregivers, and then crusade for payment for these
services. Too little attention is paid, in my humble
opinion, to deciding first what is quality respite
service for the people who actually use the service.
There seems to be a rush for respite service to
benefit those who drop us off, and too little
attention paid to what happens to, with, and for us
after we have been dropped off. I'm not suggesting
we are abused, but we need to be more than just
entertained. We need to be challenged to be all we
can be. We need to be treated like we are whole
human beings, not defected ones. We need to be
involved to the extent we can in planning and
evaluating these services.
I have visited and spoken with the users of many,
many respite services. Many of the participants know
what is good and bad for them about the services.
Most of them are not asked for their opinion, and if
they are when their opinion is negative it is
ignored. It's time for the users to speak up and its
time for their caregivers to speak out for standards
of care, for appropriate activities. Don't waste a
day of our lives watching TV, listening to people
speak in whom we aren't interested, participating in
child-like activities - when we can and should be
treated as adults. Enable us to act like adults.
Re-able us to use all our abilities.
Thanks,
Richard
I stay up
very late - way past my husband's bedtime and our
dogs' bedtime. I work on my computer, read, and do
my art. People are always shocked if I tell them,
and my husband is always "squawking" about my
arising time, but that is the way I cope.
I also go up to Tully's (coffee
place) every day (which my husband is supportive
of), drink tea and read mysteries. It provides me
with my friends up there and MY time. I couldn't do
without it!
Advice: don't let anyone take
away your precious time!
J.T.
My wife of
39 years, 8 months was head injured in a car crash
almost 18 years ago. She has been unable to work
ever since. She has short term memory deficits. At
the time, I was working full-time, and she was the
mother of our two teenage daughters, and manager of
a child care school and day care with 25 employees.
Taking over her jobs was daunting.
Within two years, I was suffering burnout. I broke
out in hives on my hands and the bottom of my feet.
The doctor asked if I was under any "stress". A
quick inventory of my duties was a wake up call. I
took early retirement, sold her business, and began
a long process of paring and simplifying my life.
Although I am not an expert, I
find giving my wife three days of adult day care a
week is a great gift to me. She loves her "game
day". I do chores, part-time work as a private
investigator, and photography in this free time. I
am blessed with two daughters who give me the gift
of respite one or two times per year by taking over
as caregivers. I take a trip, visit old friends in
other parts of the country or just rest.
Hives are no longer a part of my life. I am
refreshed and ready to get back to care-giving.
Although I miss my "best friend" more than I can
express, my wife lives in the present and she tells
me daily, "I love you". Life goes on.
J.K.
I am the
56-year-old caregiver of my 72-year-old husband who
is completely disabled by Fragile X Associated
Tremor Ataxia Syndrome (FXTAS). FXTAS is a
progressive, degenerative neurological disorder
caused by a genetic abnormality of the X chromosome.
In 1999, right after we were married, my husband (at
age 64) began to fall occasionally and to have
trouble putting one foot in front of the other while
walking. Within four years, he could no longer walk
on his own, due to loss of balance and coordination;
he was completely incontinent; and his mind was
suffering severe cognitive impairment. Since 2003,
my husband has needed full-time care, as he could no
longer perform any activities of daily living on his
own, nor could he ever be left alone because his
mind was not working well enough to call for help if
he needed it.
So, I became a full-time caregiver - showering and
dressing my husband, helping him walk as much as
possible, doing exercise with him, taking him to
various doctors for his different medical issues,
and becoming solely responsible for keeping up the
house, taking care of finances, and every other
aspect of our lives. I modified the house with stair
lifts, wheelchair ramp, and redid his bathroom to
make it handicap-friendly. I bought walkers,
transport chair, shower chairs, gait belts, and
whatever else I could find to make life livable.
Besides the physical strains of this new caregiving
life, I suffered horrendous grief and anxiety, as my
husband's mind became more and more affected by
illness, and communication between us all but
disappeared.
Enter RESPITE CARE. I started seeking respite care
in 2004, just for a few afternoons a week, so I
could leave my husband to do errands and visit my
new grandchildren. I went through many caregivers
from many agencies, because it was hard to find
aides who would work only a few hours. I was told
home health aides ideally wanted 12-hour shifts. At
16-18 dollars per hour, I tried to hire the minimum
amount of help to get by on. By the summer of 2005,
I was breaking down - crying, screaming, and my
blood pressure was rising. I couldn't take the
constant physical, mental and emotional strain any
longer. I decided I needed help every day to shower
my husband, move him around, and give me more
freedom to get out of the house. I started with six
hours of help every day; this lasted a few months
until the caregiver left. Her agency couldn't find a
replacement...
Totally at my wit's end in the
spring of 2006, I called a geriatric care manager to
recommend a home healthcare agency. This agency has
actually worked out well so far. I presently have
two male aides - one who comes six or seven hours
every day, and one who comes for four hours in the
evening. In the past months, things have finally
settled into a livable routine. My husband can still
walk if the aide and I hold him up, and I coach him
along. Aside from the FXTAS, my husband is still
healthy, and he has actually gotten a little more
alert and talkative, with better coordination - I
ascribe the improvement to Prozac, selected
supplements, and PRAYER. I am feeling much better,
and I get out every day to church, to see friends,
to see my daughters and grandchildren. I have a
support group for well spouses (Well Spouse
Association) and am involved in several church
activities...
Respite care is extremely
necessary for family caregivers - it is not merely a
luxury. People don't realize how impossibly taxing
caregiving is until they've done it. Even while I
was caring for my husband on my own, I didn't
understand why I couldn't keep doing what I had been
doing for him without breaking down; but the strain
just gets worse with time, because in the case of
chronic illness, there will be no end when it gets
better. All you have to look forward to is the
illness getting even worse and life getting even
more complicated (let's not even get into the
healthcare system that we caregivers have to
navigate!!). Add to that the intense grief of seeing
your loved one deteriorate, and it can be
unbearable.
Caregivers are doing the most important work there
is - caring for other people. And aside from
fighting in a war, it could be the most dangerous
work there is. Caregiving can be very harmful to
one's health! It's horribly unfair when a caregiver
cannot work outside the home to earn money and then
must pay out huge sums to get the critical respite
help they need. The government should take some of
the billions of dollars it wastes, and direct it to
stipends for family caregivers - DIRECTLY - not
through complicated so-called respite care programs
that are bureaucratic nightmares.
Please - someone out there - help us caregivers!!
T. C.
