“I get all these cards for her,” an older guy in jeans and a Chicago Bears jersey tells me after a community presentation on dementia. “And I don’t know what to do about them.”
At first I think he’s talking about greeting cards, but he’s not. He’s talking about reminder cards from various health care providers that are sent to prompt his wife, who now lives with Alzheimer’s in a nursing home, to make appointments.
“The dentist. The eye doctor. Now she’s due for a mammogram,” he tells me. “I dread taking her. She doesn’t always know what’s going on and then she starts crying.”
I’m not sure exactly what to tell him. I ask some questions about his wife. I ask about her general health. I ask if she is aware of her surroundings. I ask if he has anyone to help him make decisions.
I learn that she is in her early 70’s. She’s been living at the nursing home for a few months. She’s becoming increasingly frail. She’s fallen several times, so she now uses a wheelchair if she has to take more than a dozen or so steps. She knows she is at a nursing home, and she seems to know who her husband is—although she doesn’t remember his name and refers to him as “that nice man” to the nursing staff from time to time. They have two grown daughters who live in another state. The man mentioned to the daughters that he might not take their mother to get a mammogram, and they strongly objected, accusing him of “giving up” on her.
“I still love her, and I don’t want anyone to think I’m quitting on her. Til death do us part,” he says.
A few months before, she injured her shoulder and had an MRI. The doctor seemed to think this was a necessary rather than optional procedure, so her husband went along with it. To say the MRI was anxiety-provoking for the woman would be an understatement. She had a meltdown during the MRI. The doctor then seemed angry that the man had not warned him that the test would be problematic.
“The doctor knew she had Alzheimer’s,” he tells me. “Shouldn’t he have realized she wasn’t a great candidate for an MRI?”
I know it’s a rhetorical question, but I answer anyway.
“Yeah, you’d think it might have crossed his mind,” I say. However, I know this scenario isn’t uncommon. Doctors often need to be reminded that patients with dementia might not tolerate tests well, particularly if those tests involve remaining motionless or any type of confinement.
He tells me that his wife has been religious about getting yearly screenings from a dermatologist after having a few cancerous moles removed over a decade ago. He knows it’s time to schedule that appointment, but he’s not sure how well she will do with taking off her clothes for someone she will likely perceive as a stranger.
“I wouldn’t take her to that,” I blurt out.
I immediately regret saying this because whether or not I would take her is not relevant. It’s his call. She’s not my wife. I don’t know the first thing about this situation. I met him five minutes ago and have never met his wife.
“So it’s okay to not take her?” he asks.
Maybe he’s not looking for someone to tell him whether or not he should take her. Perhaps he’s looking for someone to give him permission to make a decision. Maybe I am that someone.
I tell him he can take her or not take her to whatever appointments he chooses based on what he sees as being in her best interest. As we chat more, I understand that he has a fear of being judged. He worries about being judged by his daughters, by their friends, by the nursing home staff, by doctors.
“You came up to talk to me about this,” I point out. “If you were comfortable taking her to all of these appointments, you wouldn’t have come up to talk to me.”
“I feel like you just need someone to give you permission to make the call, especially if that call is to tear up those reminder cards and throw them in the trash,” I continue. “You know it’s your call, right?”
He nods again.
He prods me a little bit to see if he can get me to tell him which appointments she should keep.
“So no to the dermatologist. What about the mammogram?” he asks.
I bite my lip. I tell him it’s not my call. I tell him I shouldn’t have told him that I wouldn’t take her to the dermatologist. I remind him that I’m not a medical doctor, and I’m not familiar with their situation.
“But if it were your mom? Or your grandma? Or your sister?” he says. “The mammogram?”
Ugh. He’s persistent.
“Probably no mammogram,” I finally say. I say this mostly because I know from this discussion that he thinks the mammogram is a bad idea. He just needs someone else to say it.
At this point, something happens that has never happened in my public speaking and community outreach experiences. He reaches in his wallet and pulls out a $5 bill. He tries to hand it to me. I’m confused about his intention as he puts it in front of my face.
“Take this,” he says. “It’s a tip.”
I tell him that I don’t take tips. (I act like this is a long-standing policy when in fact it’s a brand new policy. I’ve never had a policy on tips before this moment because I’ve never been offered one. To be fair, I have often accepted food after speaking–e.g. chocolates, banana bread, cupcakes, other miscellaneous baked goods.)
My purse is on the floor beside me. He unzips it and stuffs in the $5. I protest, but he walks out the door and doesn’t look back.
I could tell you that I did something noble like donated that $5 to the Alzheimer’s Association or used it to buy a needy child a toy, but I didn’t.
I felt so uncomfortable with that $5 in my purse that I had to spend it right away. On the way home, I stopped to buy a Diet Mountain Dew, a string cheese, and a bag of pretzels.
8 thoughts on “Mole Checks and Mammograms in Dementialand”
and more than a good deed – you were human when humanity was requested. You were present when a companion was important.
I understand your discomfort with the tip – but maybe see it as one piece of humanity acknowledging another — he needed to leave you with something tangible. A snack and beverage for your journey, sojourner. . .
Thanks for your comment. And I see your point–maybe he did need to leave me with something tangible.
Can I just say that trying to get dental work done is the worst. From my husband, the dentist, and the associated staff – drawn out uncomfortable conversations, defensiveness, crying and upset – my nightmare.
Wow. I’d say you did a good deed.
My father had dementia with his Parkinson’s. Mom was his main caregiver, but my sister and her family also lived with them. Because I lived two hours away and knew they were caring for him the best they could, I never questioned the decisions they made. Instead I would backup what ever they decided. Dad passed away last August and mom has stated many times she didn’t regret the decisions she made.
Thank you for giving this man the support he needed. So many times the caregiver needs a sounding board. I hope his daughter’s become that for him. I would hate for anyone to feel they are in this alone.
During my last visit to the doctor, while perusing my chart, she saw that I have not had a colonoscopy since turning 50. Loving that she is very direct and straight forward, I said, “I would rather die of something else before succumbing to what dementia has in store for me.” There was a short-lived look of shock on her face, and a change of eye contact from me to my husband and back to me before a response of, “Okay. I get that. However, we don’t want you to have any pain with other health conditions that may come up either. Let’s focus on dementia meds for quality of life right now, and revisit the option of a colonoscopy later.” I love her for that!
Caregivers need the type of direction you have to offer. I love this post . . . and I love that you spent the $5. Although awkward for you, he valued your input and wanted to thank you in a tangible way.
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I am really proud of you for being so straightforward. And I wish more docs were like yours.
This conversation breaks my heart. Good for you, letting him know this is his decision to make, based on what he believes to be his wife’s best interests. He’s living it everyday,
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