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Why You Should Discuss Sensitive Subjects With Your Stroke Survivor

Finding the Right Moment to Raise Sensitive Subjects – and Why You Should

     Just what are these sensitive subjects? Some of the most common ones include finances, sleep, sex/intimacy, hygiene, decision making, diet, exercise, disrespectful behavior, communication, and expectations for family members’ visits and/or caregiving. But the most sensitive ones, the most difficult ones to raise, often involve end-of-life issues – ensuring living wills are current, creating a last will, doing estate planning, determining how and where the stroke patient wishes to spend their final days, deciding if there should be nursing home care or hospice, creating funeral plans (if any), and establishing plans for the widowed spouse’s survival.

Why do caregivers resist raising these subjects?

Since many subjects directly affect the caregiver, raising them not only can seem insensitive, but utterly selfish. It’s no secret that caregivers are expected to be selfless, and therein lies the rub. The lesson from early childhood is that self-less-ness is virtuous, while looking after one’s own needs and concerns is self-ish and unquestionably bad. This presents you, as a caregiver, with an agonizing dilemma when necessary end-of-life discussions threaten to collide with your spouse’s sensitivities. So, in deference to your spouse’s feelings, you stay silent. And even if you want to raise those issues, you don’t know how or when to do it. But selflessness may be the gateway to ultimate woes.

When I think of selflessness, I am reminded of the young couple in O. Henry’s The Gift of the Magi. Jim and Della had tiny budgets but immense love for each other. Each decided to buy the other a secret Christmas present. Della’s long flowing hair was her pride and joy--Jim’s gold pocket watch was his. Impassioned on their missions, Della cut off and sold her hair to buy a watch fob for Jim, while Jim sold his gold watch to buy beautiful combs for Della’s hair. Although frequently offered as a parable on the virtues of selflessness, O. Henry also reveals that when the gifts were made known, there was a mixture of great delight and great disappointment.
Cathy and Craig, two of my clients, are the “Jim“ and “Della” of caregiving. Craig had been battling the ravages of a stroke for many years and his doctors told Cathy that death was imminent. But Cathy and Craig never even discussed the possibility of his death. Nor did they discuss end-of-life plans or what might happen to Cathy after Craig died.

Be mindful of caregiver “gifts”. Cathy didn’t know if she should mention her concerns, let alone how or when to do it, so she said nothing. She knew how much Craig wanted to beat his stroke and she thought if she raised death issues, he would think she didn’t believe in him anymore. That would hurt him deeply. Not wanting to upset Cathy, Craig never mentioned dying to her either. He knew how hard she was trying to support him and keep him alive, and he didn’t want her to think he had given up.

Their heartfelt, selfless and well-intentioned acts were not unlike those in the parable which demonstrated that along with self-less-ness, inadequate communication, can lead to undesirable results. In Cathy’s case, it left her with no knowledge of their finances, no information about legal matters, no understanding of how Craig wanted to spend his final days and no funeral plans. But it did leave her with a great deal of stress—so much that she had a heart attack shortly after Craig died. More than six years after his death Cathy shared, “I wish we had talked about these things, many things--but it’s too late now.” She had selflessly put Craig’s interests and feelings ahead of hers, avoided potentially upsetting discussions and needlessly created a disastrous result.

There is a way to raise any topic. Esther is a real estate agent in her 40s. When she heard Cathy’s story, she knew she didn’t want to miss valuable opportunities with her husband, David, who had suffered a debilitating stroke. It was important to her to have options and choices so she wouldn’t have to live with regret and a tragic outcome like Cathy. She soon learned that even death issues could be raised using compassionate communication tools. Her first step was to bring all of her concerns out into the open—with herself. After writing them down, for her eyes only, she sorted through them to determine which ones she'd like to address with David and which to shelve or share only with a confidant.

Converse effectively and with compassion. Next, Esther learned simple tools to begin difficult conversations--and to keep them going. Here are a few:

  • Begin conversations with "I" statements. Using “we” presumed things for, and about, David that would immediately shut down a conversation. So, Esther avoided that pitfall.
  • Don’t ask "why" questions if you just want to change behavior. Esther didn’t ask David why he wouldn’t want to talk about funeral plans when the “why” didn’t matter. She simply wanted to have the conversation, not analyze him or become tangential.
  • Let David keep his opinion while working on changing his behavior. Esther learned that it doesn’t matter if David opines that she doesn’t need to know about finances, as long as he shares them with her.
  • Speak David’s language. Esther structured her statements in the way he would most easily understand them. Since David is very reason- and logic-oriented, she asked him what he "thought" of her ideas, rather than how he “felt” about them.

Create a framework for a beneficial conversation. Instead of mandating he listen to her on the spot, Esther learned to recommend a time and location to David that would assist their conversation. Now she was ready to approach him to set up their “talking date”. Rather than “David, we need to talk”, she used her new communication tools and said the following: “David, I’d really like to talk about our future plans. I know you like
relaxing under our elm tree, so how about a chat there tomorrow evening. Or would Tuesday after lunch work better for you?” A gentler approach, with closed-ended options, will more effectively take you where you want to go.

Collaborate and make agreements. Prepare for your “big talk” by calming yourself and remembering that you will work together to create agreements to make your life and your marriage work during these difficult times. For instance, Esther and David created an agreement that an advanced-directive would be drawn up so there would be no question about David’s wishes at the end.

Even in end-of-life discussions, you can reclaim the intimacy you lost when you stopped communicating with your loved one. Even if you have to agree to disagree on some issues in order to reestablish peace in your household, you still have options and choices for writing a better ending to your own love story.

By: Dr. Diana Denholm, Author of The Caregiving Wife's Handbook

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"Since many subjects directly affect the caregiver, raising them not only can seem insensitive, but utterly selfish. It’s no secret that caregivers are expected to be selfless, and therein lies the rub. The lesson from early childhood is that self-less-ness is virtuous, while looking after one’s own needs and concerns is selfish and unquestionably bad."

For additional information on caregiving check out these articles:

Better Caregiving Starts With Support

4 Warning Signs that Caregiving Is Damaging You and Your Loved One

How to Say No Successfully

Religion and Spirituality in Caregiving

Reclaiming Intimacy After a Stroke

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