i like to be told

how to compassionately communicate with a dementia patient on a hospital visit

He has traveled alone in the ambulance. This is standard practice. You can only hope that someone onboard is caring. We have been told a master sheet with his meds and docs is traveling with him. I am 50 minutes away.

Perhaps Mr. Rogers has an easy to understand lesson for staff at Phelps Hospital and beyond, as it relates to patients with dementia. I arrived in their Westchester ER, after receiving a call from my Dad’s Memory Care staff (aka angels!). Dad had been rushed in an ambulance, after he was having trouble keeping dinner down. I will spare the details. Coughing. Choking.

the man, the myth the legend — my ad dad, neil leiner (and quinn, at my wedding 14 years ago this new year’s eve)

I am sent to room six upon arrival. Nobody is there with him, or even blinks when I walk past. It is close to Christmas and midnight. I quickly come to realize, nobody has read his paperwork and everyone asks me what is plainly there.

“He has dementia,” I say when I arrive. “Can you please put it on the wall chart in his room?”

Nobody does. So I take the marker, and do it myself. I also write, “Call me Neil.”

“It’s Barri, Dad. I love you.”

“Hi, Bubbe”, he replies.

I lean in and tell him he is in the hospital. He can let go of anything that comes up, in a towel or tissue — don’t swallow it, Dad. The beeping is disturbing to me, I am certain it is all overload for Dad. There is a curtain at half mast and he can not see out, so I fix that. He has been left staring at a wall. I turn on the tv and we take in The Grinch and hang.

I am told they are going to do a CT scan. They ask if he can walk, stand, lay back, be still. I wonder who they might ask if I had not been there?

Ask him! Tell him, I think. Or, call the staff that regularly care for him and review the paperwork that has been tossed on the counter in his room near the viles of blood they have taken. They have not transported him with his walker, they tell me they often go missing, along with hearing aids. He has those in!

They roll Dad just down the hall to the scan. Through the door I hear shouting. “No, Neil”. “Sit back”. “You have to….” — the yelling does not make things more clear for him (or anyone). It is highly disorienting.

I knock on the door and ask what they are trying to get him to do. “Have you asked him, or told him?” They all look dumbfounded. He has dementia. He is responsive to cues. I offer them, and they proceed.

They lift and prod and poke and touch without letting him know what they are about to do. I see him wince and move away. I translate. I can only imagine the script and confusion running in Dad’s mind.

The scan reveals a food blockage of the esophagus. He will need a procedure to move it so it does not become something worse, like pneumonia. The GI doc is called in with his team. He is warm and kind to Dad. He looks him in the eye and introduces himself. “I’m Peter Stein,” he shares as he presents him his badge. “I am sorry you both are here, but we are going to take good care of you”, he adds.

I meet the nurse and anesthesiologist. I know it is dangerous for a dementia patient to be under - and they discuss this in depth. There is no choice. It results in a two minute procedure to unblock the esophageal cavity and Dad bounces back nicely.

We are moved to a room upstairs for observation and to reintroduce foods. I have to ask and advocate in the same way up here. I spend the night and answer queries every two hours or so.

Who is his primary? Past surgeries? Special diet? Smoker, drinker? Most is on the same paperwork. I ask if there is any training to deal with dementia patients, and they say, “sadly, no”. Unless the hospital is accredited in a particular specialty, there is no required education or continuing education.

When Dr. Stein returns in the morning, we have a full-on exchange (ok, rant) about why docs and nurses are so ill equipped to deal with dementia. He tells me I am sharing more of what he knows is gravely wrong with medicine these days. He said my Dad was so sweet with his team in the OR. He relays his answers to their queries. How easily he complied. As the old Mr. Rogers song goes, “I Like To Be Told”. Doc says his wife is a pediatrician and agrees with me that there is a lot of cross over in how kids and dementia elders can be addressed.

• Presume they require explanation and repetition.

• Hope you do not frighten them.

• Tell them what you are doing and when and if it will it hurt?

• Tell them again.

I tell him Dad is an award winning pharmaceutical ad exec and worked on ground breaking drug campaigns. He tells me he is honored to know him and tells Dad too. My father jokes with Dr. Stein.

If one doc “gets it”, I know it was likely many would and could with a little bit of knowledge. A young nurse said her grandma had dementia, and that is how she knew so well how to work with Dad.

I felt empowered to advocate for my father and know others are not nearly so lucky. Here are the lyrics to the song Mr. Rogers shared long ago, and a video too. I will write a “how to” on this, as I have done for Maria Shriver’s Sunday Paper on how to meet those living with dementia, and try to place it. I always hope my own lessons and learnings can be shared far and wide to others dealing with memory loss as caretakers and family.

There was no transport to be had as we closed in on Christmas, so my sister and I decided to be “it” and spring Dad. We needed to get him home. You can only imagine the comedy that ensued. If you need a job done, just ask two Jersey Girls. Staff was so pleased upon his return. A favorite caretaker rubbed his back and said, “Neil-y, we were worried, that is not like you.” I never thought I would call it “home” for him, but it was more than ever.

I Like to be Told (1984)

I like to be told
When you’re going away,
When you’re going to come back,
And how long you’ll stay,
How long you will stay,
I like to be told.

I like to be told
If it’s going to hurt,
If it’s going to be hard,
If it’s not going to hurt.
I like to be told.
I like to be told.

It helps me to get ready for all those things,
All those things that are new.
I trust you more and more
Each time that I’m
Finding those things to be true.

I like to be told
‘Cause I’m trying to grow,
‘Cause I’m trying to learn

And I’m trying to know.
I like to be told.
I like to be told.

Music and Lyrics by Fred M. Rogers. © McFeely-Rogers Foundation.

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