Laugh, Cry, Live

Pondering the emotional side of life, beginning to end.

Monday Morning Dementia: Part Three

In the ER with dementia, how and why relationship-centered care matters.

My mother officially entered the Advanced Stage of Dementia when she drove off in my dad’s car, in search of “home.” (Read the first part of the saga here; second part here.) Her whereabouts were unknown for the eternity of two hours. But as demented luck would have it, she turned onto a highway that after many miles (and opportunities to turn off it) dead-ended at a security checkpoint. She was then taken to a nearby Emergency Room. When I arrived to fetch her, she greeted me as if the only problem was my tardiness.

Here we pick up where Part Two left off….

While a nurse helps my mother get dressed, in walk an earnest young doctor, an officious nursing supervisor, and an imposing social worker. They form a tight semi-circle around me. Insensitive to my mother being within earshot, they inform me that she has crossed the line and officially become A Wanderer. And how, they want to know, could we have been so negligent as to let this happen?

Instantly, I feel attacked by their criticism, judgment, and accusation. I reactively defend the family, saying we supposed she would never wander, as she’s always been extremely cautious by nature and never leaves the premises without accompaniment. If you take her on an errand, she sticks by your side like glue. If you put her somewhere comfortable, she won’t move until you return. And certainly, she hadn’t shown enough executive function in years to make us think she was a flight risk by automobile. And yet, here we are. Turns out, she has the main risk factor: insisting on “going home” in spite of being home. As that urge intensified, so did the risk.

The tight semi-circle tells me that wandering is extremely dangerous, and that people have died from hypothermia and car accidents. They are trying to scare me sober, never mind that it’s a warm spring day and my mother was not ticketed for any offense. I wasn’t even worried about her safety after we confirmed that she’d driven off, as she routinely and accurately tells me when it’s clear to pull out, and presses on imaginary brakes if I zoom up to a red light too quickly. Besides, I pointed out to them, if she killed herself on this escapade, we could live with that. If she’d killed or maimed someone else, we’d find that far more difficult to live with. (My sister, who knows of social services, what with being a schoolteacher, says now for sure there is a file on us, probably with an asterisk. Good, I say!!)

The tight semi-circle tells me they are concerned, very concerned— unlike me, the hapless, clueless family member.

But how would they know how concerned I am? They are brimming with assumptions and judgment, never once asking me what happened, or how I’m feeling about this ordeal, or what I’m thinking about what lies ahead. I don’t get to tell them how we just hired two new caregivers this month, in order to ramp up care. They don’t ask what ideas or resources I might have to make sure this doesn’t happen again. They don’t even try to engage in empathic conversation. Or tell me how awesome it is that our family has found a way to keep my mother at home, especially as she enters the Advanced Stage. They don’t inquire about my dad (who is statistically very likely to die before my mother, due to the stress of caregiving.)They don’t ask me to sit down with them in private, invite conversation, or offer me a glass of water. They are bent on telling me I need to do something about this, because they are concerned, and they mean it. Just the fact that we’re standing makes this encounter feel adversarial.

They tell me my mother needs more supervision. Really? Ya think?

They tell me that we need to “adult proof” the house so that she can’t get out by herself. Clearly I’m dealing with Rocket Scientists.

They can’t tell me how to do this adult-proofing, but direct me instead to “the Alzheimer’s website”. Seriously, you don’t know the address or even the organization’s name? Isn’t there a handout you can give families? Do you assume everyone has internet access? Don’t you have a helpful tidbit you can share? Just one?

I keep my snarky comments to myself, but surrounded and backed into a corner, I start to stand up for myself. I’m not proud of this-- I respond to their assumed superiority by playing the PhD card. I assure them that as a Developmental Psychologist and my mother’s Personal Care Coordinator for the past 5½ years, I can see clearly that we’ve entered new terrain here, and I will indeed figure out how to navigate it. However, I did manage to refrain from telling them that I’m also a published researcher, writer, and speaker on how and why Medical Practitioners Can Provide Relationship-Centered Care to Patients and Their Families, and that I’d come do a Hospital Inservice on the topic, for free. Because clearly, that’s how badly they need it.

I don’t make this offer out loud. Instead, wanting to be rid of them, I convince the tight semi-circle that I’m taking this situation seriously. I tell them we’ll ramp up care and adult-proof the house. They leave, perhaps congratulating themselves for another job well done.

I’m a disheartened, demoralized puddle of goo.  

Newsflash: Just because I told you what you wanted to hear, doesn’t mean it was a job well done.

For me, it was a painful and infuriating interaction, and I am sure we weren’t the first, nor will we be the last demented family to wander into their ER, only to be further stressed by their patronizing, authoritarian, dismissive approach to trying to get us to clean up our acts as caregivers.

I feel for the families, but I also feel for these medical practitioners as they may have had an inkling that they didn’t really connect with me and added to my distress. Our interaction may have satisfied their feelings of superiority, but it couldn’t have satisfied any feeling of caring. Imagine, being unaware that you’re erecting barriers to empathic connection and then wondering why your interactions with families are tense, even combative. Indeed, their type of care is demoralizing for families and staff alike because it’s an ineffective, unsatisfying way of providing medical care. Their approach only adds more trauma to a traumatic situation.

And actually, I forgive this doctor, nurse, and social worker as individuals, because they did the best they could. However, I am disappointed in any hospital administration allows and perhaps unwittingly encourages this patronizing, authoritarian attitude toward patients and families. Any scolding and scowling from medical staff causes a rift, and patients will reflexively resist (as I did) what they have to say. That kind of delivery does not build any bridges. In fact, they burned any bridge I tried to build.

In contrast, Relationship-Centered Care seeks to build bridges first and foremost. The practitioner engages patients and families in a dialogue, which might go something like this:

What brings you in today?

How are you feeling about this situation/ condition/ diagnosis?

I’m so sorry.

That’s sounds really confusing/ complicated/ frustrating/ disappointing/ sad/ scary.

Do you have any questions for me?

What can we do to help?

By listening to the patient’s narrative and addressing feelings first, practitioners build bridges of empathy and understanding. This bedside manner is the caring piece of medical care. Without that caring piece, doctors and nurses are just practicing medicine, rather than providing medical care. Caring happens within the therapeutic relationships that practitioners form with patients and family members, not in the technology, directives, record keeping, or bean counting.

Imagine what a difference it would’ve made if the tight semi-circle had engaged me in a dialogue like this:

Wow, what was that like for you, to find out your mother drove away?

We’d like to invite you into a private space so we can sit and talk about what brings you in today.

Tell us what happened.

That’s so awesome that you have such a responsive circle of care for your parents.

Do you have easy access to the Internet?

Here’s the address to the website that has specific suggestions and support for keeping wanderers safe.

Do you have any questions or concerns?

If this type of exchange had happened, I would’ve emerged from the ER feeling understood, respected, supported, and armed with useful information.  

Instead I was reeling. Whoa! WTF just happened! Now I’m even more traumatized than when I came in here!!

Thankfully, I found an antidote in the nurse who was helping my mother get dressed.

I sense he sees I’m a disheartened puddle of goo and he tries to make up for his boorish colleagues with appropriate kindness, caring, and concern. He even asks me if there’s anything we need before we leave.

*             *             *             *             *

In the next installment, I’ll share more about the support we received from this nurse, a first responder, and a security guard at the satellite facility, plus the hilarious adventure of losing my mother outside the ER. (Really!)

Deborah L. Davis, Ph.D., is a developmental psychologist and author of 6 books, including one about perinatal hospice titled A Gift of Time.

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