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Although much attention has been given to the treatment of illnesses, the media has placed little attention on the needs of those who take care of very ill patients. In my practice it is not uncommon
for me to see caregiver spouses who had been well have to become sick to protect themselves against burning out. By following some of the directions below, it is possible to stay healthy and happy while taking loving care of somebody who is seriously ill.
FOCUS ON FOUR BASIC RULES:
If you do not take care of yourself, you will experience burnout and there will be nobody to take care of the sick person.
We sometimes think it is better to be sacrificing
and constantly giving of ourselves
even when it feels bad to do so. In fact, we
often feel guilty if we don’t. It is time to let go
of this way of thinking. If you are coming
from a reasonably centered place, your feelings
will take into account the ill person’s
needs as well as your own. If it does not feel
good to do something and you still do it, this
is not called being a saint. It is called being a
fool. It will lead to burnout, resulting in your
getting sick and thus adding to the burden of
the person that you are taking care of.
Listen to your feelings. If something feels
good, do it. If not, don’t. You can’t get sick
enough to make someone else healthy. This
means not giving up your life—which leads
us to rule No. 2.
Go out and have fun—even if the person you’re taking care of can not.
If you do not, they will feel guilty and you
will feel resentful. Remember—you cannot
get unhappy enough to make someone else
happy either. Get outside help for a good
number of hours a week so you can get out of
the house and do things that are fun.
Depending on how sick the person is, s/he
may be able to come out with you for part of
the activity. For example, s/he may be able to
sit by the lake while you go jogging around it.
Be creative and be sure to maintain the activities
that give you joy in your life.
One potentially excellent approach that
helps the situation is to go to support groups
for people with the illness you’re dealing
with. This has several benefits. First, the
people there are familiar with the disease and
how to care for people with the illness. This
lends itself to creating a ”babysitting pool.“
In addition, you can make friends who have
an understanding of what you’re going
through who don’t mind talking about the illness
and problems associated with being a
caregiver.
There’s one important caution, however.
You may often find there are two kinds of
support groups. One is where people get
together to say how horrible things are and
prove that their situation is the worst of all. I
called these ”pity parties.“ For many people
this is quite necessary and may be the only
source of venting, sympathy and being heard
that they have. For other people, sitting
through this can be a horrible experience.
The other kind of support group is made
up of people who are getting together to
figure out how to make everybody’s life better
and to share information that is helpful.
Although my natural preference is towards
the latter, both groups serve different people’s
needs. Be sure that you go to the one that you
need. If you go to the wrong type, you’ll come
out feeling like you were energetically sucked
dry by vampires. If you go to the right one,
you will come out feeling more hopeful, supported
and uplifted. If you feel worse when
you leave the meeting, don’t go back.
Even if there are no support groups that
help you to get ”baby sitting,“ you still need
to get out of the house and have a life. Odds
are that you are not a nurse. Nonetheless, you
are able to take care of the ill person. This
means that other people who care for the
patient usually will not have to be nurses
either. If you were not in the picture, somebody
would be taking care of the patient.
Who would that be?
It is both appropriate and beneficial to call
on friends and family members to pitch in. If
family members say they don’t have the time,
then you can tell them that they need to give
money instead, so babysitting can be hired.
There’s always the threat that you will drop
out of the picture, leaving them to scramble
to supply care for the patient. If this means
that the patient would be in a nursing home
and the family member would have to pay for
it (or have their inheritance depleted), you
may find that even the most selfish ones will
be willing to give either time or money for
the patient’s care. Sometimes you have to be
clear that you’re not willing to be a “door
mat” before other family members will pitch
in. Other times, you simply have to ask.
Having the patient be pain-free is
good. It is also their right.
Some doctors embody the old expression ”all
pain is tolerable—as long as it is somebody
else’s.“ Unfortunately, in medical school the
only real pain management many doctors get
is to give Tylenol, aspirin/Motrin or narcotics.
Many pains do not respond well to
these three treatments, in which case
increasing the dose often will not help—but
may cause a lot of side effects.
There is an extraordinary array of different
treatments available for pain that work
best when they are tailored to the cause of the
patient’s discomfort. Unfortunately, this
sometimes means taking an extended period
of time to evaluate the patient. It is often hard
to find a doctor willing and able to spend the
time needed for proper pain management.
The problem is so severe that people fly into
Annapolis, Maryland from all over the world
to visit my pain clinic which focuses on the
treatment of fibromyalgia and chronic fatigue syndrome. Although I have a broad experience
in treating chronic pain patients, it still usually
takes me a minimum of four hours for a new
patient evaluation.
 You have the right to have yourself and your
family members be pain-free. If you cannot get
complete relief with your current physician,
politely request (and then if needed, demand) a
referral to a pain specialist. I find that psychiatrists
often do the best job. Recognize, however,
that your insurance company may not pay
for time. This means that you may have to pay
out-of-pocket for somebody to spend the time
needed to figure out how to best get rid of your
or your family member’s pain.
Most chronic pain is myofascial or neuropathic.
My book From Fatigued to Fantastic will
give you more information on effective treatment
approaches for pain. It is very unusual, in
my experience, to not be able to either eliminate
the cause of the pain or at the very least
keep the patient quite comfortable with treatment.
Letting your family member know that
you will be sure they will be kept comfortable
will eliminate an incredible amount of fear
(that they may not be sharing with you).
Be honest with each other about the
implications of the illness, including
death.
One of the most devastating parts of having a
chronic or terminal illness is the isolation that
occurs because of people’s fear of death and
dying. This creates a “conspiracy of silence”
around the patient that can be very uncomfortable.
It also makes it impossible for them to
speak about feelings that are very important to
them.
If someone is dying, even if they have a terminal
disease that may not kill them for quite a
while, bring up the issue of death. If the person
is not ready to speak about this, they will let
you know and then you can let the issue rest.
More often than not, what they will experience
is an incredible sense of relief and an outpouring
of feelings that they have wanted to
share for quite a while. Talk about any fears surrounding
death and dying. Also talk about your
spiritual beliefs as they relate to an afterlife. My
own personal belief, which developed from
both my life experiences and having grown up
in a seminary, is that there is no hell, only
heaven. In thinking about it, the patient may be
reassured by the following realization. What
loving parent would judge their child and send
them to eternal damnation? I very much doubt
that God is a worse parent than we are.
For those who do not hold a spiritual belief,
talking about how we live on in our children,
grandchildren and the things we have done and
created can also be very comforting. Simply
having the topic out in the open can be incredibly
healing and helpful.
It is also critical to talk about “end of life”
care. Doctors have sometimes been taught that
death is the enemy and they will literally torture
people to make sure that the patient does
not die “on their shift.” If things normally done
to people in an intensive care unit were to be
done unwillingly to somebody on the street, it
would be a front-page headline all over the
world and seen as a hideous act. Yet we simply
view it as normal medical care. There is a time
for such aggressive measures when they are
used to prolong life. When they are used to
prolong death, however, I believe it is simply
unnecessary torture. When you approach the
issue of death, ask the patient if s/he wants CPR
when the time comes that their body is ready to
pass on and there is nothing more that can be
done to benefit them.
This time will come to us all and can be
approached as if it will be off in the future. It
usually becomes clear when we are prolonging
death vs. prolonging life. The period where this
is a “gray area” is usually fairly short or absent
in most cases. You may ask if the person would
like to sign a living will stating that CPR should
not be given once death is imminent and
unavoidable.
In cases that are clearly terminal it is important
to be aware of another option as well. In
many cases it is not enough simply not to do
CPR. There is a time when it is important to let
go and let the patient die gracefully and not
force the body to find a more painful way to
make its transition. When this time comes, it is
reasonable to ask the patient if s/he would like
what is called “comfort measures only.” This
means that everything will be done to keep the
patient comfortable but nothing will be given
(e.g. antibiotics and, if the patient wants, even IV
fluids) to prolong the dying process. Coma, and
the dehydration that comes with it, has for millennia
allowed the body a graceful and comfortable
way to make its exit. I strongly recommend
that we use our heavy technology to prolong
life—not to prolong death and suffering.
By having this conversation the patient will
be able to make his or her own decision. I
would get it in writing or have the patient let
the doctor and other family members know
their wishes as well so that the patient’s wishes
are respected if they slip into coma. Have the
doctor confirm that they will respect these
wishes and have them put it on a prescription
for the rescue squad or other doctors in case
they are not on call at the time. If the patient
knows that they have his or her permission to
die when the time comes, this will be a great
gift for them. Many times patients have
pleaded with me to talk to their families so the
members would let go and let the loved one die
in peace.
The dying process does not have to be a terrible
thing. Indeed it can be a very sweet time
that helps to deepen your relationship and be a
special part of the person’s life. This occurs when
they are comfortable and have the people they
love around them. For most people this is much
more important to them than being tormented
by high-tech marvels in their final hours.
It is also important to remember one final
thing about the dying process. We routinely see
family members (especially those who deserve
to be sainted for the loving care they gave) torment
themselves when the person dies with
irrational guilt about what more they could
have done. If you find this happening to you,
be gentle and simply allow yourself to let go of
the guilt.
The best advice I can give you throughout
this whole process is that from a centered place,
check in with what feels good to you. When
something feels good, it is my psyche/soul’s
way of guiding me so I can be true to myself.
Only do and keep your attention on what feels
good. You will be amazed at what feels good in
this setting. In this way your experience of
being a caregiver can be a blessing, bringing
you and your loved one into a closer, happier
and more loving place.
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