Should I tell someone with advanced dementia about possible cancer?
Dear Carol: My mom, 83, is in a memory unit because she has advanced Lewy body dementia (LBD). While a nurse was bathing Mom, she noticed a breast lump. My logical mind tells me that considering Mom's cognitive state, together with her age, this lump is best ignored since she has no pain. I've talked with her neurologist. He said that I could consult an oncologist but that he'd suggest not telling Mom since she may be stressed by the news when there's a good possibility that this isn't even cancer. This doctor and Mom's care nurses all feel that she couldn't tolerate testing, let alone surgery and treatment. I agree, yet I can't let go of the fact that I'm keeping something from her. Should I tell Mom and explain the options even though her ability to make sound decisions based on fact is basically nonexistent? Maybe a word from you will help me feel better. — HF.
Dear HF: I'm so sorry that you have to carry this burden. Feeling that you are keeping information like this from your mom has to feel emotionally wrenching. Even though it's likely that nothing can be done for her even if this is cancer, this knowledge adds to the stress that you are already under.
In the end, only you can decide what to do, but I will tell you that I agree with the neurologist and your mom's nurses. I don't like the idea of putting someone this frail through more trauma than necessary.
My mother developed what we thought was colon cancer though she, too, had no pain. At the time, she was capable of making her own decisions and she told me that she knew she couldn't tolerate the testing or the treatment so she saw no reason to pursue the issue. I told her that I'd support whatever decision she made. Mom lived another eight years. Colon cancer likely contributed to her death, but so did other health issues, so I feel that she made the right decision.
I feel blessed that my mom could make her own decision. You don't have that luxury. However, I told you the story because my mom had a point. Like your mom, mine was not healthy for her age, possible cancer aside. The decision has to be made around the context of the person as a whole. Your mom's neurologist feels that telling your mom could upset her needlessly since the lump may not even be cancerous. If it is, and she can't tolerate treatment, I think not bringing it up is a kind decision.
You may want to talk to the oncologist for your peace of mind. Additionally, if you have a clergy person or a counselor with whom you could share this story, I'd suggest that you talk it out with them. Life can throw us painful challenges, but support from others can lighten the load. Take care of yourself by taking advantage of all available professionals and friends.
Carol Bradley Bursack is a veteran caregiver and an established columnist. She is also a blogger, and the author of "Minding Our Elders: Caregivers Share Their Personal Stories." Bradley Bursack hosts a website supporting caregivers and elders at www.mindingourelders.com. She can be reached at firstname.lastname@example.org.