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Practical Insights for Busy Caregivers

Why caregiving is hard and what really helps

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August 29, 2016, by Pat Morden, Caregiver Exchange

caregivingHelp Judith John is a communications professional, teacher, writer, public speaker and powerful patient advocate. She lives with the effects of a benign tumour on her pituitary gland, which causes her chronic pain, vision disturbances and other problems. While she was undergoing treatment for the tumour, her husband was diagnosed with throat cancer. He underwent two months of chemotherapy and radiation, and a further month of radiation. “Being a patient taught me a lot about being a caregiver,” says John. “It helped me put myself in the patient’s position. It’s so important to treat others as you would like to treated – trite maybe, but absolutely vital.”

In a recent conversation with Caregiver Exchange, John shared some of her hard-earned wisdom about caregiving in cancer. As you will see, she is frank, honest about her feelings, and remarkably articulate.

Why caregiving is so hard
 
  • “The caregiver is the one who has to be supporter, monitor and the nag. You have to be watching all the time, have a heightened sense of the other person, because that individual will rarely feel well enough to articulate a problem or even know there’s a problem.”
  • “It’s true that you sometimes feel under-appreciated, under-valued, taken advantage of -- partly because you’re just so tired and so scared.”
  • “You can’t show your resentment, you can’t show your fear, you can’t show your fatigue. You don’t want people to feel worse because they’re relying on you to do all these things for them, and yet they are.”
  • “Some days it’s hard to reach in and find the love you have and show it to the person you’re caring for. And to do it without smothering them.”
  • “You know you need to take time for yourself. But it’s hard to trust others to do a good job the way you do. And of course you don’t want to burden anyone else.”
 
What caregivers need to remember
 
  • “It’s easy to discount a person who is ill as feeble and even feeble-minded. It’s very important to treat him or her with respect.”
  • “When you’re busy as a caregiver, you think you’re listening but sometimes you’re not really paying attention. It’s easy to put the person you’re caring for in the background. Even if you’re having a tough day, it’s really important to humanize the patient encounter, to respect the person inside, and to actively listen.”
  •  “You want to take control, because you know what needs to be done. But sometimes you have to accept the choices of the person you are caring for.  It gives them a measure of self-worth.”
  • “Arguing with the person you’re caring for just isn’t effective. I learned to say ‘okay, that’s what you want to handle now; I’ll come back at a calmer moment.’ Patients struggle to have some control over their lives and their situation. And naturally they take out their frustrations on the nearest person.”
  • Be flexible. Inevitably, there will be roadblocks and detours, things won’t go according to plan.  Accept that, and move on as best possible.
  • Remember that helping someone who is ill affects the entire family. I had to think about my children and what they were experiencing and fearing.
What really helps
 
  • “When my husband was in treatment, I wanted practical help, like drives to the hospital. I didn’t want help with personal issues, and I didn’t really want visitors. My focus was on the needs of ‘my patient.’”
  •  “One thing that helped us was a healthy sense of humour. We saw the black humour in almost everything!”
  • “Don’t be so proud that you can’t ask for help. It doesn’t have to be anything big – often it’s just someone who can hear you say ‘this has been a horrible day.’ Other people can’t change the situation, but they can acknowledge what’s happening, and give you a sympathetic ear. Sometimes that’s what you need.
  • As a caregiver, you’re like a little island in the middle of the ocean. You look around and it seems as if everyone else’s lives are perfect and nobody else has hard issues.  But remember, everybody has something to deal with, and there are people who care about you and want to help you.”
  • “If you look hard, you can find something most days to make you feel a bit better. It is surprisingly restorative and energizing to take time to be grateful.”