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Caring for people with IBC

Here is a letter from a caregiver on the IBC mailing list.

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 the patient.

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.

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