Hope Dies Last Revisited

“I forgot to tell him about the melanomas,” Mama says after the hospice social worker leaves.

“He’s not medical staff,” I tell her again, which he told her as well.

“I thought he was a doctor,” she says.

“No, social worker,” I say. I could have left it at that. Should have. But I don’t. “And you don’t have any melanomas,” I say.

“Who told you that!” she demands.

“The derm-a-tologist,” I say, rolling my eyes.

“Well,” she says, “you must have made that up. They biopsied something.”

“That’s right,” I say, ignoring her implication that I am the one with dementia, “and three months later we went back to have it checked, and the sample he took for biopsy turned out to be all there was. He said it was gone.”

“But there are several more,” she insists.

“They are all pre-cancerous,” I say, reminding her that he froze them.

“They don’t know,” she says,”they didn’t send any others in for testing.”

“That’s because they weren’t suspicious,” I say. She shuts down. No acknowledgement that I’m right, that she remembers or forgot the truth, that she’s reaching.

It’s a pointless conversation, and we’ve had it before, but she continues to tell the hospice staff each time she sees someone different that she has several cancerous melanomas. She tells her sister on the phone, talking slowly, her volume increasing with each repetition, trying to make my 93-year-old sister understand an imagined ailment; while her sister simultaneously shouts at her about her own misfortunes. It’s sadly hilarious. She wants something nameable to be wrong. She doesn’t know who she is without health issues. The more serious the concern, the more able she is to justify the condition of her condition, which is nothing more than old age.

Why don’t I just accept it, just say, “Ok,” and let it go? When will I ever learn?

And then it comes to me. Just like she hangs onto hope, going to one doctor after another looking for the miracle, I’m hanging on too. Maybe this time she will understand that what she just said is nuts and she will laugh at herself and say, “Well, that didn’t make any sense!” Maybe, in a miracle-fantasy of my own, even thank me for being here helping her keep her head straight. It will never happen; but just as she refuses to give up on finding a cure for the decline of her body, I refuse to give up on her mind.

The specialists say to go along with her, you can’t argue with dementia. And that is absolutely right. I know that. I observe when I just say, “Okay,” “you’re right,” or “I understand,” when she’s not right and I oh so do not understand, things stay calm. And when I argue with my sword of rationality, the disagreement escalates until she shuts down. On a few occasions she has fallen apart in tears, and I know I am the worst daughter on the planet.

But what if it isn’t about my need to be right (which I wrote about here)? What if it’s that I am not ready to give up on her? Yes, it’s irrational. No, it’s not kind nor helpful. Implying that she is crazy robs her of her dignity. She is not going to get better. Just as continuing to recite her ailments to every doctor is pointless; and, though she doesn’t realize it, she is robbing herself of dignity—I see that others understand when the hospice nurse glances at me and raises her eyebrows in solidarity with my frustration.

May Sarton, as she watched many of her friends become ill and die and coped with her own diminishing health and letting go, said, “Hope dies last.” I wrote about it here—interestingly three years ago this week. In the intervening years, I periodically have been more intentional at not trying to fix her, and accept that this is who she is now. But I can’t stop thinking she surely wants to know the facts, because she is a lover of information. I’m helping her keep a grasp on reality, right? The truth, though, is she believes she has the facts, and my corrections serve only to tell her she is wrong and her brain is full of holes, when she didn’t ask for information.

My friend, Elizabeth—who lives with her own mother’s Alzheimer’s (and blogs here about the part of her life that doesn’t involve being parent to her parent) and for whom I thank God—suggests that I sense when my mother’s mind is gone, it will be like losing her and then having to live with her ghost, as she is with her mother. She also writes: “The reason all our friends’ parents are dying and ours aren’t? Well, it’s us; we keep giving them reason to live.” Our care and feeding  hold them to the earth.

I will keep at my resolve to resist correcting her, because regardless of the reason, it isn’t helpful. I am three days for three successful this week (along with staying off time-suck Facebook and not eating between meals). If I don’t count pointing out on day three (yesterday) that her complaints of her part-time caregiver not doing things without being asked to is in contradiction of her many complaints in the past that M had done something she wasn’t asked to do. I guess I have to count that. So I’m two of three days. And I will forgive myself 70 times 7, because guilt helps no one.

And because, even though it changes nothing, Mama and I are both refusing to let dying have the last word.