Caring for people with IBC
Here is a letter from a caregiver on the IBC mailing
Some people find caregiving harder than others, just as some people
find treatment harder than others. I was lucky in not having a lot of
emotional baggage of my own while [my partner] was in treatment; other
caregivers have a much harder time than I did. It depends on the particular
people and how they react to stress.
In many ways, the caregivers do have a harder time. They have
to deal with their own fears of the disease as well as the patient's.
They have to be an encourager, a nurse, a comfort, a shoulder to cry
on, and a strength, as well as taking over all the practical things
like cooking, cleaning, often while still working full time. They have
to be able to put their own problems on hold at a moment's notice, and
be able to deal with the patient taking out feelings of anger and frustration
on them. Oh, and they can never, ever take out their own feelings on
I've never had to face the realistic possibility of dying in the next
few years, and I've never gone through the nastiest effects of chemo,
surgery and radiation, so I don't know what it would be like for me.
But I do think you can put the caregiver in the same category as the
patient. Their situations are different, but both are very, very demanding.
Who cares for the Caregivers?
As a caregiver, you will find yourself under a lot of stress. There is
already information available on
the Net for caregivers, but for IBC, the problems are often harder to
deal with because of the demanding treatment and the depressing statistics.
This page deals mainly with how to deal with your stress so that you can
give the best care you can.
Here are some things you can do to help yourself out.
- Make sure that you have adequate support for yourself. You
have to deal with the fact that you could lose someone you love, and
most people focus on the patient's problems, ignoring yours. Make sure
there are people you can talk things over with in confidence.
- Take time to care for yourself. You have a responsibility
to the patient to keep yourself in a fit state
to look after her. If you don't get enough sleep or relaxation, you
won't be able to give her the care she needs. Sometimes, you may need
to insist on taking time out for yourself, even when she needs help,
to avoid burn-out.
- Let yourself be human. Sometimes you make a bad decision
or do something stupid. That's OK. You're not expected to be perfect,
and you're under a lot of stress. Just let it go.
- Learn to recognise misdirected anger. The IBC patient
is under a lot of stress, and she is probably very scared. A lot of
people respond by taking it out on people close to them. Learn to recognise
when this is happening. Of course, she may be mad at you because you're
under stress and acting like a jerk! Figure out which is which.
- Don't be afraid to ask for help. This is especially
important around surgery time. Nobody expects you to do everything yourself.
Chances are you're working a full-time job, doing household chores and
dealing with two people's emotions. So ask friends to come over and
bring a meal or do some cleaning or look after the kids. Remember everyone
who said "If there's anything I can do,just ask"? Well, ask them. Most
people will be flattered if you ask them to help, but chances are they'll
try and stay out of your hair if you don't.
- Give yourself a pat on the back! In case you need
reminding, you're showing a lot of strength and goodness by being so
supportive. Not everyone does. You're probably going to have some bad
times during her treatment, but keep in mind that the fact that you're
looking after her makes you OK in most people's book.
- Get feedback from the patient. If you haven't already,
ask how well you're doing as a caregiver. What are you doing right?
What are you doing wrong? Ask for a grade!
- Learn active relaxation techniques. You are both
going to be under constant stress for several months, and you need to
find ways to deal with it. One good way is active relaxation, which
involves taking time to sit down and relax your mind and body.
By the way, if you're a partner caregiver (as opposed to family or friend),
congratulations for staying around. Usually, relationships under stress
break up if they were weak in the first place, but grow stronger if they
were strong in the first place.