Here's a question clinicians can expect to hear more frequently: “Should I tell my parent with dementia that I have cancer?” As discussed in my most recent column, “Disclosure and Dementia” (9/25/14 issue), just a few quick insights and tips from clinicians can help provide a roadmap for determining the best approach. This handout is designed to supplement—or replace—any discussion. Feel free to edit it or use it as is.
What to Tell a Parent with Cognitive Impairment
If your mother or father has some cognitive impairment (e.g., due to stroke, Alzheimer's, or some other condition), you have to decide whether to share the news of your cancer diagnosis. No single answer fits all patients. This handout will help you determine the best decision for your unique situation. By “best” I mean an approach to the dilemma that fulfills two criteria:
- Keeps you the top priority.
- Addresses the needs of your parent and involved caregivers.
Should I Share the Diagnosis?
If a parent with advanced dementia doesn't recognize you or know what it means to have cancer, your decision is straightforward: Don't say anything.
But, probably, you do need to say something if:
- Your parent knows who you are.
- Your illness will cause any change(s) in your parent's world that he/she might notice.
In most cases, sharing the news ultimately helps him/her live as comfortably and meaningfully as possible.
What Good Comes from Disclosing the Diagnosis?
Naturally you want to protect your parent from the pain of learning about your illness. But keeping your cancer a secret may exact a high price. For one thing, lies necessarily follow. And lying can be taxing at a time you need to minimize stress.
For another, keeping your diagnosis a secret forces others to lie to your parent about your well-being and the reasons behind noticeable changes (such as a decreased frequency of your phone calls or visits).
Here's the problem: Keeping your diagnosis a secret may jeopardize the vital bond of complete trust between your parent and any caregivers. Without trust, your parent may have difficulty accepting help as the ability to act independently declines. So the good that comes from sharing the diagnosis is preserving trust.
Another good relates to the issue of your parent's right to know. Keeping your diagnosis a secret denies your parent the opportunity to help out in some form or fashion—even if only to say “I love you” or to offer a private prayer for your healing. If your parent might respond meaningfully, sharing the diagnosis shows respect and preserves your parent's dignity.
Will the News Upset My Parent Too Much?
Probably not. Cognitive impairment often provides an emotional buffer that makes upsetting news less distressing. Your parent may respond relatively calmly, almost as if your cancer is not a big deal. Even if your parent's initial response reflects anguish, that distress may be remarkably brief thanks to the forgetting disease. Out of sight, out of mind. Your parent may go about daily life with enviable normalcy. And that's good.
Your parent's actual response will depend on your parent's current ability to understand and handle things and, of course, on how you present your news.
What's the Best Way to Break the News?
Exactly how much to say depends on your current role in your parent's world and how your condition might affect your ability to fulfill that role. A focus on your parent's needs right now will help you know what to say. Your parent needs:
- An explanation for changes in his/her world: “I'm...(bald, limping, visiting less, whatever) because I'm being treated for cancer.” “You will have changes...(someone else driving you to appointments, or whatever).”
- Reassurance about his/her care: “You will continue all your regular activities.”
- Reassurance about you: “I'm getting great care.”
Simple rules of thumb are:
- Keep it simple.
- Tell your parent enough—not everything.
- Answer questions directly, without volunteering information.
What Should I Say About the Prognosis?
If your prognosis is good, tell your parent, “My doctors expect my full recovery.” Otherwise, it's usually best to limit the discussion to the here and now.
In the spirit of tending to your parent's best interest, you can explain your situation in most cases with a confident declaration: “I'm receiving excellent treatment and can handle this.” That answer usually provides enough information for a parent to deal with his/her world today. Thereafter, you may use it as your go-to answer for most questions about your situation.
If your parent asks specifically about the outlook, here's a healing response: “We're hopeful of the best outcome.” While things are going well, it helps everyone—not just your parent—to nourish realistic hope for tomorrow, whatever the prognosis.
What If I'm Having Trouble Making a Decision?
Please let us know if:
- You feel ambivalent about whether to tell your parent.
- You want to tell your parent but can't do it, for whatever reason.
- You feel stress from people who disagree with your decision.
Those dilemmas are common because the best path is not always obvious. And because each person in your parent's world has both a unique relationship with your parent and a unique outlook on life.
Who Can Help?
If the decision is not obvious, ask for a referral to a social worker, other counselor, or clergy—professionals who can ease and expedite your decision. Another option is to contact your parent's physician for guidance.
If your treatment will be demanding or your prognosis is not great, professionals can help you with optimizing the care of your parent, including related financial concerns.
Telling a parent you have cancer is no easy task. If your parent has cognitive issues, keeping your diagnosis a secret, while appealing, may not be the best approach in your case. You perform an act of love with your efforts to determine if disclosing your diagnosis would cause harm or would honor your parent.