| By Dave Balch
I was lucky in that, working at home, it was
relatively easy for me to juggle my schedule in order to go to appointments
and to do as much as I did. Many, if not most, caregivers will not
have that flexibility due to job-related responsibilities. These
caregivers may therefore not be able to be the full-time caregivers
they would like to be.
There are still a number of things that you can do as a part-time
caregiver that will be very helpful to the patient. I have culled
a number of things from my experience that apply equally to full-
and part-time caregivers. (Since my experience was with breast cancer,
some of these ideas may not apply in your situation.)
- Your number one priority
should be to remove or reduce every shred of stress from the patient
so that she can spend all of her energy fighting the disease.
Everything you do should revolve around that basic principle,
but “removing as much stress as possible” does not
mean “do everything for her.” It all depends on your
patient and what is stressful to her; having someone else do certain
things for her may actually increase her stress instead of reduce
it. In our case, I wanted to do all of the driving so she could
sleep, but she wanted to do some of the driving so she could feel
like she had control over something; my insistence on driving
caused her more stress than it saved her, so she did enough of
the driving to satisfy that need, then I took over.
- Take advantage of
the free services at www.ThePatientPartnerProject.org
to post progress reports for your family and friends. You can
even have the system automatically send an e-mail to those whom
you specify whenever you post an update; this way you can keep
everyone informed without having to make tedious, repetitive phone
calls and you can do it when it is most convenient for you. It
is critically important that you keep everyone informed, and using
this free service will allow you to do that while reducing your
stress and the demands on your time.
- Allow the patient
to express herself without comment, recrimination, or criticism—you
don’t have to “fix” everything.
- Try to find humor
wherever you can, especially self-deprecating humor.
- Remember “Don’t
go there ‘til you get there”—there are some
things over which you will have no control, so try not to even
think about how you will deal with these things until you have
to. In many cases, the things you feared will never come to pass
anyway. The perfect example was my fear of danger and difficulty
getting to daily radiation appointments because of winter weather.
By remembering, “Don’t go there ‘til you get
there,” I realized that there was no point in worrying about
it until the time came. As it turned out, the weather never materialized
and had virtually no effect during the radiation treatment period.
Had I worried and fretted about that when I first realized the
potential, I would have been wasting energy: There was nothing
I could do about it anyway, and there was the very real possibility
that it wouldn’t be a problem in the first place. Focus
on the things that you can control, not on things you cannot control.
It’s easy to say, but hard to do.
- Everything seems worse
when you’re tired. The same is true for the patient, who
will be tired a lot of the time. Try to remember this so that
when you are feeling overwhelmed and discouraged, you can chalk
some of it up to being tired. And, by reminding yourself that
everything is worse when you’re tired, you are also giving
yourself hope by realizing that you will feel better after you’ve
gotten some rest.
- Don’t do anything
that will generate additional stress unless it is absolutely necessary.
For example, this is not the time to decide to sell your home
and move, which is a very stressful undertaking.
- Give yourself and
your patient something to look forward to, such as a vacation
when the treatments are over. Spend time planning and talking
about it. The anticipation will give you energy when you need
it the most.
- When your patient
asks for something, not only should you do it, but tell her, “I
would be happy to do that for you.” And mean it.
- Take time to take
care of yourself, including exercise and time away from the situation.
You need your physical and emotional strength, so if you need
to get away and go to a movie, do it. You need it, and you deserve
it. As they say during the airline safety speech, “Put on
your own oxygen mask before helping others with theirs.”
- Be protective, but
not overly protective. Part of the suffering for the patient is
the loss of control over her life, so if she wants to do something
and it won’t be harmful to her medical condition, let her;
it will help her feel better about herself.
- Don’t always
trust how you feel; stress and anxiety can do strange things to
your priorities and confidence, including feelings of overwhelm,
hopelessness, and fear.
- Don’t take things
personally. Her reactions and emotions are based on how your patient
is feeling, which is pretty lousy a lot of the time. If she gets
overly emotional or snaps at you about something, it is probably
due more to the way she feels than to anything else.
- You must be an advocate
for your patient. If you don’t like the care she’s
getting, speak up! If you don’t understand something, ask!
If you don’t like the answers you’re getting or the
way you are being treated, go somewhere else!
- Remember that you
can handle more than you think you can. Things will come up that
you don’t think you can handle, but you will because you
have to. Don’t spend time thinking about how you can’t
handle something, just do whatever it is; you will surprise yourself.
- “Juggling your
life will become your way of life.” A very difficult aspect
of your situation is how disruptive it is. Your usual routine
is out the window, and even your day-to-day schedule will be somewhat
chaotic due to your patient’s ever-changing and often unpredictable
medical condition, doctor appointments, tests, phone calls, errands,
filling prescriptions, finding medications or other products…
the list is endless. You can’t do anything about it, so
do yourself a favor and accept the fact that chaos and unpredictability
are your new lifestyle for the time being.
- People will offer
to help in various ways, some of them will insist. Remember this:
- Well-meaning people
can actually increase your stress rather than reduce it by
insisting that you let them help: don’t accept help
you don’t want or need. Be polite, but firm. I cannot
overemphasize how important this is to your peace of mind
and stress level.
- The other side
of this coin is that if people are offering help that you
do need or want, accept it. We got many offers from friends
who wanted to make food for us. My first inclination was to
say “No,” because I didn’t want to be a
burden to them and I didn’t want to seem like I needed
it. Guess what? I did need it. One couple even went to one
of our favorite restaurants on their way back home from the
city and picked up some great meals, which lasted several
days. God bless ‘em!
To read more about
Cancer for Two, visit www.cancerfortwo.com.
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