At some point in our lives, we will care for a family member or friend who is ill and vulnerable, and some of us will also experience illness and vulnerability at a level that requires care from others. Most of us prefer helping over being helped.
The helper retains more of their sense of control and mastery, has fewer interruptions to self-efficacy, and can often feel virtuous about being helpful. This need to be helpful coupled with pride can diminish accurate perception of the actual needs of the person being helped, particularly if the helper assumes they know what will be helpful without asking. We may do for others what we think they should need, or what we perceive we would need if we were in their shoes. Caregivers may cling to concrete methods of help, like preparing food, when the suffering of a person with a serious illness is about deeper matters.
In family and friend caregiving, the helper may experience massive disruption to daily life by the tasks of caregiving, but still has the option to walk back if caregiving becomes unbearable, even if only at a fantasy level or temporarily through using respite support. The person being helped does not have the luxury of getting away and is continually faced with their own sense of vulnerability.
Many fear “being a burden” and are vigilant trying to discern any resentment the helper may hold. Nothing stirs fear quite like being dependent on another at a basic level. Those accepting help may want to ask for changes in how they are helped yet feel they should be grateful and accept the help without speaking up about any preferences.
Seattle mental health counselor Wendy Lustbader wrote a book entitled Counting on Kindness: The Dilemmas of Dependency in which she describes “the humiliations caused by the loss of autonomy, of the frustrations at not being able to manage on one's own.” When we are dependent on others, we are subject to their timing, their priorities, their attitude about helping. Making a request about a need can be daunting and helping efforts that are not helpful are awkward at best. Lustbader offered valuable training earlier in the WA Rural Palliative Care Initiative. She is also a contributor to Huffpost, contributing columns such as “When You Have No Idea How to Comfort Someone” and “When is Enough, Enough?
Helpers can also feel the pressure of trying to do or say exactly the right thing. The helpless feelings that accompany the witnessing of a loved one’s suffering can be difficult to tolerate. Lustbader reminds us again and again that presence and listening are primary. It can also help to have a direct conversation to negotiate what is helpful and what is not. One skill that helpers may overlook is the need to fade back when the person being helped is capable of doing a task on their own. Overhelping can be frustrating and difficult to address, so prevention by open dialogue helps. The following table offers some questions that might aid such a conversation.
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Things a helper can ask |
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When I am worried about your eating, what is most useful? |
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What signal would you like to use to let me know you prefer some silence and rest? |
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What would you like me to tell family members (co-workers, church friends etc.) when they ask about you? |
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What is the most important thing I can help you with today? (or right now) |
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What things do you prefer to do on your own? |
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I was thinking I could help you with ______. Are there specific wishes you have about how I do ______? |
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Is there a way I am trying to help that you would like me to stop doing? |
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What is the most comforting thing I can do? |
The phrase, “just let me know how I can help” can be a challenge. Unless the person who offers this comes back and overtly checks, or offers some ideas, the person who needs the help will be unlikely to reapproach. There is a story about a family that faced a terrible death; friends and family wanted to help, and many made that “let me know how I can help” offer. But one family friend came over and gathered up all the shoes for the children and adults in the family that they planned to wear to the funeral, and cleaned up and polished all the shoes. At my father’s memorial, a good friend offered to come to my house and get my spouse with dementia ready to attend and then bring her, so that I could get ready on my own. There are tangible offers that can really make a difference.
If the one helping can remember the angst of being helped, and the one being helped can realize the anxiety in helping, both can navigate the “dilemmas of dependency” with greater grace and mercy.
“If I can't find the right words, if everything I might say seems trite or widely off the mark, I remind myself that the situation may be beyond words and that this just might be the right time for listening.”
Wendy Lustbader
Pat Justis, Washington State Department of Health