I recently attended a conference on a particular type of chronic illness that I knew little about. The first part of the conference was informative and full of helpful ideas for caregivers. One particular lecture was given by an expert in the field but one who had no personal experience with the disease, other than professionally working with families wherein someone suffered from it.
She made no pretense of having the emotional insight on what it is like to be a caregiver. Instead, she gave facts, statistics and ideas of what she had seen worked well in the situation. Her talk was outstanding and people left with many ideas to put in place and a professional contact that really knew what she was talking about.
Another lecture at the conference dealt with being a caregiver. It was a remarkable success story of an amazing man who cared for his wife in his home until her death. Even to the point of waking every two hours to turn her position to avoid pressure sores. He talked about all the positive and wonderfully creative ways he had developed of dealing with the situation and how his whole family had benefited from the experience.
His wife had passed on several years before. Perhaps the positive experience that he portrayed is how he recalls what he went through, or the parts he thought would be most beneficial to share. But what I saw and heard in the audience were people sitting at the end of their rope feeling guilty for not being able to do what this man had done. I saw caregivers who felt less than perfect, because they could no longer handle the situation in their home; failures, because their children didn’t find care giving an uplifting experience, but a torturous, awful way to live.
It wasn’t until someone asked the speaker, “Then you’re saying we should never consider a care facility placement? That it is wrong?” It was only then, that I think the speaker came down to the level of the group. He explained that that was the choice he had made, but in retrospect, it may have been the wrong choice for him and his family. I was impressed with his honesty and his openness in front of the group. I also felt that it was just that one comment that connected him to his audience.
Success stories are wonderful, but they are not uplifting to those who are in the same situations and are experiencing anything but success. Many caregivers are in the process of sorting through very negative feelings about their situation. These feelings are very real and they have a need for others’ acknowledgment and empathy if they are to rise above them.
I feel caregivers need to hear that other people have felt what they feel now, so they can identify and accept what is going on in their lives. If they are given a “guilt trip” and made to think that what they are feeling is wrong, or that they are not a good person for feeling this way, or that they are the only one in this situation who feels negatively, they will never be able to deal with themselves or the person they are caring for.
That is often where support groups come in. Bound by common feelings and strict rules of confidentiality, people can express their pain and be understood by another who has been there. It is easier to emulate someone who shares your emotions instead of someone you see as perfect. I admit that attending a lecture cannot be equated with participating in a support group, and uplifting stories of brave, self-sacrifice are wonderful to hear. There are parts of them, however, that we may all take away and try to put in place in our own home. They have their time and place. But, if the goal is to support and help those going through what you have been through, it is also important to share the frustrations, failures and negative emotions that are felt.
In that way, people can more easily identify with you and feel that they are capable of doing some of the things you did. If we cannot identify with a person, if we think they are more brave, more resilient, wiser and kinder than we can ever be, we will find little in their story that we feel we can put into effect in our lives. Few of us can emulate perfection. Fewer will even try.
If you find yourself listening to someone (whether at a lecture or in conversation) who seems to have handled the same situation you are in − with a perfection that has you feeling negatively about yourself – simply ask questions like, “did you ever feel lost or angry or have negative feelings when you were care giving?” You may be surprised to discover that everyone has felt, for a time, exactly how you are feeling. The frustrations of care giving are there for us all. Even for the people we initially see as “perfect.”
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