The Caregiver's Handbook

Caring for a loved one—and yourself

Caregivers Turned Killers

Avoiding the Caregiver Cliff

Just days into 2013 a woman faced battery charges after beating her cancer-ridden husband. Not including “mercy” killings, there were several parenticides in 2012 along with the infamous Paul Gilkey killings. Paul cared for his wife, Darlene, who was dying of cancer. One day he peeled an orange for her lunch. The visiting sisters-in-law and his son decided she should have tea and toast instead. This was not the first time they butted in, but it became the last straw. That day, after three hours of arguing, Paul shot and killed the two ladies and his son. This case is extreme, but what pushed Paul over the edge was not, and could have been easily prevented.

Caregivers find themselves on the edge of that cliff more frequently than we realize. Since illness occurs in the context of existing relationships, existing problems are amplified, increasing caregiver stress. Added to the stress of caring for a loved one, is stress from outside interference. Often, well-meaning family and friends become a source of conflict and burden, and fleeting fantasies about the demise of the sick person and/or meddling relatives are not uncommon. Fortunately, caregivers can take simple steps to prevent acting on these fantasies. Before frustrations escalate you can anticipate, understand and prevent problems - and create a far different outcome. This is what one couple experienced.

Angela and Carl were both 40-year-old widows with children when they met 25 years ago. They quickly created one happy family. That happiness ended when Carl developed terminal thyroid cancer, resulting in his care being Angela’s new life mission. She picks his doctors and treatment plans, oversees his diet, clothing, exercise and social activities – orchestrating every aspect of his life. And that works wonderfully – when it’s just the two of them.

But the in-laws and the grown children do visit or call frequently, second-guessing everything Angela does. Carl doesn’t like the intrusions, but says or does nothing about them. Angela complains, “Who do they think they are?! They aren’t living this 24/7. When they visit, they just waltz in, spend a little time, then disappear without lifting a finger. And they think they know what it’s really like! Some days I just want to unplug the phone, draw the drapes and lock the door!” Instead Angela learned a better way.

Intrusions are to be expected and respected – but not necessarily acted upon.

Whether family relations are good or bad, when someone is dying, relatives want to have input and they want information. Facing significant loss, they feel powerless and stressed, and act accordingly. They may have the need, and feel they have the right to know everything and participate in everything that is going on. Conversely, they may be so distressed they withdraw. Both behaviors are normal. Rather than interpreting these as a personal affront, caregivers can respond in a productive way and feel more comfortable in the process.

Establish expectations.

Ultimately it’s the sick person’s right to decide the course they and their care will take. Accordingly, relative’s needs do not translate to being Carl’s or Angela’s needs. First and foremost, Angela and Carl need to agree about outside involvement. What information will be given to whom? Who should visit, when and for how long? Should these people have a role in caregiving and what might that be? Once determined, simple tools can be used to communicate these expectations to family.

Begin with simple planning.

Before discussing intrusions with Carl, Angela wrote down her frustrations and concerns – for her eyes only. Next she sorted all of her issues into: A - things she wants to say but doesn't expect a response to; B - things she wants to say but won't, because it won't make a difference; C - things she wants to say but should only share with a friend; and D - things she really needs to discuss with her husband.

Use effective communication tips.

Angela next selected a location conducive to conversation and set up a talking “date” with Carl. Avoiding the dreaded phrase, “We need to talk!”, she used a better approach saying, “Carl, I have some concerns about the calls and visits from your family, and I’d like to talk with you about that. Would this evening be good, or would tomorrow morning at breakfast be better?” She employed an “I” statement because it wasn’t Carl’s need to talk, and gave him two closed-end options, knowing they more likely would produce a specific “date”. Since Carl is more of a thinker than feeler, she will use his language and ask him what he thinks, not what he feels, during their date.

Discuss and make agreements.

Angela encouraged mutual respect and compassion rather than attacking or criticizing anyone in their discussion. Once she and Carl were in agreement, they used the same techniques for discussions with relatives and friends. Having specific agreements about everybody’s roles fosters congenial relations.

Accept irresolvable differences.

You never have to change your point of view to please someone else, nor do they have to change theirs for you. Rather than arguing with no resolution, you can agree to disagree. This will drop stress levels and create a more peaceful household. In such instances, you may also use techniques such as these from my caregiving book:

  • Use memorized responses - "Thank you for sharing that. I appreciate your concern." - Then say no more.
  • Validate the other person’s desire, yet hold to the agreed-upon plan. "Sue, I'm sure it's difficult for you not knowing all the details about Carl, however, Carl and I agreed we would only share certain information. We'll tell you as much as we can, but can't share this right now."
  • Don’t make the other person wrong, instead use “I realize…, however” statements. “I realize you think Dad should be in the hospital now, however, that’s not what he wishes.” “I realize you want to know how Carl is doing, however I’m not comfortable discussing it now.”

Angela and Carl used their effective communication tools to establish expectations and share them with others. Now, instead of unplugging the phone or locking the door, Angela has the skills to anticipate, to understand and to prevent outside interference from upsetting her life and her marriage, or pushing her over the edge.

Diana B. Denholm, Ph.D., L.M.H.C., is a medical psychotherapist and the author of The Caregiving Wife's Handbook.

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