Learning to speak dementia: Stop the pop quizzes, just let people talk — about the black guy nobody likes or anything else

I found out a couple of months ago that my parents’ annual physical exam now includes a 20-question pop quiz after a weigh-in and blood pressure check.

My 104-pound mom with high blood pressure tackled it first.

Doctor: What year were you born?

Mom: 1932

Doctor: Where are we?

Mom: Medina, I’ve lived here most of my life

Doctor: Who is the President of the United States?

Mom paused. She glared at dad, glanced at me and then rolled her eyes at the doctor and blurted: “I voted for him — you know, that black guy nobody likes.”

Her embarrassment exploded silently, flooding the tiny examination room with a muddle of fear and shame.

The doctor, who has taken care of my parents for decades, tried to paper over the moment with reassurances. But there was no consoling mom, who, against my father’s wishes, had hammered a gaggle of Barack Obama campaign signs into their front yard in 2008.

This doctor’s visit happened in December and I hadn’t thought about it much again until an Iowa-based gerontologist I follow — Elaine Eshbaugh — wrote about something similar in her witty, insightful, in-the-trenches blog “Welcome to Dementialand.”

In it, Eshbaugh described stopping to talk to a nursing home patient after the woman hollered to Eshbaugh that she had become a grandma.

When Eshbaugh asked the woman what her granddaughter’s name was, the woman — like my mother searching for an answer her brain couldn’t come up with — paused and flashed from happy to sad. She couldn’t remember.

Pop quizzes, it turns out, don’t only happen in doctors’ offices.

They happen daily and inadvertently when many of us talk to people with dementia.

When we ask grandpa if he recognizes us, or grandma what she had for breakfast, we’re quizzing them. And if they can’t answer — when they get that sad and shameful look — they know they’ve failed.

I’ve been too thick to realize how often I do this with my own family.

Mom, I ask, where did you put the newspaper? Dad, I prod, don’t you remember you had a stent when you were in the hospital two years ago?

Wouldn’t it be better for everyone if I found the newspaper without asking? Or recognize and embrace that I’m now, and forever more, dad’s medical memory?

Eshbaugh concedes, she, too, has unnecessarily caused angst in dementia patients — including the woman in the nursing home who became a grandmother.

“Instead of asking her to recall specific info about her granddaughter, I should have said, ‘Tell me more about your granddaughter’,” Eshbaugh said.

“She might have told me that she was 8 pounds when she was born, that she had blond hair, that she cries a lot,” Eshbaugh said. “But she would be focusing on what she remembered rather than what she didn’t remember.”

That’s a good lesson for most of us.

My parents’ doctor, of course, doesn’t have that option. She is measuring memory function and a quiz is necessary.

After mom fumbled the president question in the office that day, the doc continued down a list of other queries, swapping out a World War I question for one she thought both mom and dad should know since they lived through it.

Doctor: When was D-Day?

Mom stumbled into an answer involving the 1800s and dad, trying to save her, reminded her that was the Civil War.

“Abraham Lincoln was a wonderful president,” mom said, telling the doctor she was confused now about dates because she doesn’t work any more and has no reason to keep track of time.

A few minutes later, as the doctor was typing into her laptop and the three of us were sitting quietly nearby, mom lit up.

She had found the needle buried in 82 years of memory haystack.

“Obama,” she said triumphantly, pounding her bony, little fist on the arm of her wheelchair. “His name is Obama.”

For anyone interested, here’s a link to Elaine Eshbaugh’s refreshing Welcome to Dementialand blog: https://welcometodementialand.wordpress.com

Caregiver gripe of the day: Doctors who scribble prescriptions for drugs patients need the same day

Today dad received his first of 20 daily radiation treatments.

But before the technologist even wheeled him back to the giant machine, she handed me a prescription an oncologist had written for an anti-nausea medicine dad is supposed to take 30 minutes before each appointment.

Two questions:

A) Why wasn’t this prescription provided earlier so dad could have taken the pill before his first treatment?

B) Why didn’t the doctor phone/fax/email the pharmacy so I wouldn’t have to stop twice — once to drop off the prescription and once to pick it up?

Doctors: Patients who don’t feel well and family caregivers — who often are juggling so many responsibilities that one more seemingly simple task could break them — need your help streamlining every aspect of medical care, including prescriptions.

There is no reason to write a prescription and hand it to a patient. Doctors should make sure their staffs submit prescriptions to the pharmacies of their patients’ choice for easy pick up.

This especially holds true for doctors prescribing medications to hospital patients in the hours before a patient’s  release. Trying to get a hospital patient home comfortably is difficult enough without having to stop at a pharmacy on the way. Or perhaps even worse, a caregiver must abandon the patient at home alone while he runs back to the pharmacy and waits on the medication.

In my case, dad is already weak from his cancer. And after today’s radiation, he is especially wobbly. Yet I left the poor guy in the car — not yet warmed up, when it was 18 degrees outside — while I dropped off the prescription.

Why? I — like so many other caregivers — have few choices.

I’m straddling caring for my mom, who has dementia, and my dad, who has cancer and other health issues. But others are juggling kids and jobs and the needs of others’ too.

So now, as I type this, my dad is sleeping in his recliner and my mom is planted on the couch nearby. I’m running out to pick up the prescription, hoping that nothing goes wrong while I’m gone.

This all could have been avoided if the oncologist would have submitted the prescription to the pharmacy herself — and maybe even done so a few days before it was needed.

Have you checked your parents’ pills? Even if your folks are independent, they may need you to be their daily pharmacist

About a month before I abruptly left The (Cleveland) Plain Dealer to take care of my parents, I was sitting in a cramped public housing apartment reporting on an old man who nearly died after mixing up his medication.

Every time the man re-filled a prescription, he dumped the pills into a tall clay jar on his kitchen counter that was full of all his other medications. A couple of times a day, the man poured out a palm-full of the white, pink and red pills and popped them into his mouth, figuring the random assortment was good enough to keep him alive.

What a moron, I remember thinking smugly at the time.

I dreaded that assignment. It was part of the newspaper’s annual tradition spotlighting nonprofit organizations worthy of readers’ donations at Christmastime. Every reporter had to do a feel-good story and this was mine. A home-care agency ultimately sorted out the man’s medication and he was, not surprisingly, healthier and happier.

Little did I know, however, my own mother was keeping a sort of pill jar of her own.

She and dad were living independently at their home, but it was clear they were having problems. Dad, who never even made his own sandwiches, was now cooking all their meals.

There were cigarette burn marks on the kitchen table and on the floor.

And mom had started to fall — a lot. On the January day I found her tangled in a quilt rack unable to get up, I had enough.

A couple of months earlier, I had forced mom and dad to accept a daily visit from a home-healthcare agency. But clearly, they needed more help. It was time for them to move in with us or into an assisted living/nursing home. They chose us.

I suspected, but hadn’t fully realized how much trouble mom was having with her medications until I started packing them up.

More than a dozen bottles of prescription pills sat on the kitchen counter — including four filled with powerful painkillers that were supposed to dull her chronic back pain. But I also discovered scores more prescriptions. Transparent brown bottles filled two shelves of a kitchen cupboard, a bathroom medicine cabinet and a nightstand.

Most of the bottles were more than half empty. Some were a decade old. There were antibiotics, anti-inflammatories, anti-acids, blood pressure medications and more painkillers.

Dad suspected mom was misusing the pills, but didn’t want to challenge her.

That, as caregiver, was my ugly job.

After consulting her doctors, I started weaning her off all pain medication and other prescriptions that often caused confusion in the elderly — particularly someone my mom’s size (she was less than 90 pounds when she moved in with us).

Then, we added or replaced those drugs when needed. A smart nurse practitioner recommended, for example, using an anti-seizure medicine for pain. It works better for mom than any of her painkillers — with no side effects.

Mom’s daily falls stopped within weeks. And it’s been more than two years since she’s taken any tumble.

Yet it took a year to sort out all the meds.

And she still relies on me every day, several times a day, to give her the medications she needs.

My dad — who only took a daily aspirin when he moved in with us — now takes nearly a dozen medications, too.

That can be confusing for anyone, especially someone who doesn’t feel well.

Sometimes doctors cancel a medication or add one for a limited time. More often, the pills change shape or size when the pharmacy gets a better deal from a different supplier.

To help myself keep it straight, I maintain separate, evolving lists of medications in computer files for mom and for dad (and printouts of those lists to take to each doctor’s appointment, urgent care visit and hospital admission).

I also keep mom and dad’s medications — prescription and over-the-counter — in separate large plastic containers: Blue for him, pink for her.

Finally, I rely on a series of small snap-top food storage containers, disposable drinking cups and standard days-of-the week medication holders to help me help them get their pills right.

Of course, all this has made me look differently at the old man I was reporting on in public housing. Poor guy. I was the moron who didn’t understand.

I don’t know why his family didn’t intervene. Maybe they didn’t care.

Or maybe they — like myself and so many others with their own family members — didn’t realize he needed help.

I loathe the word “caregiver”

I loathe the word “caregiver.”

It’s imprecise — everyone from a heart transplant surgeon to a school teacher wiping the nose of his 3-year-old (or someone else’s 3-year-old) can call themselves a caregiver.

It connotes no emotional gravitas — think generic caregiver vs. mother, son, wife.

And it utterly fails to reflect the relentless crescendo of responsibilities that can only end in grief and mourning when the object of that caregiving dies.

No, caregiver hardly begins to describe the millions of people willfully making sacrifices for ill loved ones now — or the millions more who will be swept into that role, whether they like it or not, in coming years with a wave of aging Baby Boomers.

We need a new word.

I’ve thought about this, off and on, since my parents moved in three years ago.

I’m somewhat embarrassed to say now that I never realized how much of my identity was wrapped up in my career as a newspaper reporter. It’s who I was my entire adult life and newspaper reporter seemed as inextricable from my being as my date of birth.

I could fudge it the first year: I was a newspaper reporter on a generous leave of absence to care for my parents.

Yet when I had to make a choice — newspaper reporter or caregiver — the word “caregiver” started to gnaw on my psyche.

Not because being a caregiver is any way less than being a newspaper reporter (with the clear exception of pay and benefits).

But, because the word “caregiver” is so squishy and nebulous. It hardly describes what I do now or who who I am, let alone the millions of other U.S. family caregivers out there.

We are warriors. We test the boundaries of love and exhaustion. We navigate medical and government systems that seem built to confound. And few beyond the people who need our help notice, even though we save the government — and thus, taxpayers — more than $450 billion each year.

Let the professionals — the home health aides, the nursing home employees, the nurses, the doctors — proudly call themselves caregivers. They are, and their missions mostly end after about 40 hours each week.

We are something else.

I so desire to have a word, a single, easy-to-remember, tongue-tickling, perfectly on-point moniker, but there isn’t one.

I’ve searched thesauruses. I’ve hunted through historical references, religious texts and mythologies. I’ve even looked for words in other languages, hoping perhaps there was a term like “au pair” that we could re-purpose.

Nada.

So I propose we all come up with some options to replace caregiver in the popular lexicon.

Here’s my imperfect suggestion: Sibwarian.

It’s a combination of three Old English words I found in the Online Etymology Dictionary

–Weardian: To keep guard, watch, protect and serve

–Carian: To be anxious, grieve; to feel concern or interest

–Sibb: As part of a word, it shows brotherly love, familial affection

Those words, to me, highlight who I am — a family member who is anxiously serving and guarding people I love.

I know Sibwarian won’t catch on.

But some other word should.

Sibwarians deserve more.

What patients don’t have, but need: A qualified counselor to fill in the blanks of “Here’s what I would do…and here’s why”

My 83-year-old dad this week was diagnosed with squamous cell esophageal cancer, Stage 3.

There are no options to cure it. So now dad must decide whether to do nothing or to seek palliative treatment with radiation, chemotherapy, or a combo of radiation/chemo.

Doing nothing means he will probably die this year. Treating it means he’ll likely live longer, but each option brings its own complications. Radiation, for example, will likely inflame his esophagus so much that dad won’t be able to eat, necessitating a feeding tube.

There’s no good estimate on how much longer dad may live with treatment or how long treatment could stave off some symptoms of the disease, like pain or internal bleeding.

So how do you choose what is best?

Thirty years ago, my dad’s father (my grandfather) faced the same cancer and needed a feeding tube to keep him alive.

Grandpa — in a nursing home at that time — couldn’t make his own decisions, so dad, at the strong urging of a physician, agreed to the feeding tube.

It has been one of the biggest regrets of dad’s life. Dad believes he unnecessarily prolonged my grandfather’s suffering for nothing.

But that was a different time: Physicians often told patients what to do and patients followed their advice without question.

Now, the medical pendulum is stuck on the opposite side.

Physicians often lay out the options and let patients sort it out for themselves — without any guidance at all.

I vastly prefer patients making their own informed decisions, but there are pitfalls.

These are often technical, multi-dimensional choices and patients might not consider everything they should: What will their quality of life be? What will their insurance cover? Are they more likely to die in an emergency room or at home?

Here’s what patients and their families need: An objective, battle-tested medical professional who understands their physical, emotional, financial and spiritual needs and then fill in the blanks — “Here’s what I would do…..and here’s why…..”

I don’t think practicing doctors have time for this holistic approach. And I’m not sure I would trust all of them since the medical system has built-in financial incentives that don’t benefit patients.

So then who? I wish retired doctors and nurses (and even those still working) would volunteer for this duty. And maybe this is a profession all its own, provided insurance would cover this service.

Last night, after dad got home from the hospital, my husband stood in the snow during a freezing rain and cooked dad a steak on the grill.

Tonight, in the comfort of my kitchen, I’m making dad’s other favorite: Pan-fried perch from Lake Erie.

I don’t how dad will choose to handle his cancer.

I’m researching and we’re still talking. We meet with the oncologist again Monday.

But I will stand by his choice, whatever it is.

P.S. Here’s a link to a great essay by a Boston doc…who uses her experience as both doc and, in the end, as family of patient….wrestling with this question: “Doc, what would you do?”

http://tinyurl.com/pngbcr4

I told my dad today he has cancer. Why me? Because the doc who found it apparently didn’t think my father was worth his time

Dad has a tumor on his esophagus that is almost certainly cancer.

Esophageal cancer killed my dad’s father at age 91. It killed my mom’s mother at age 83, which is how old my dad is now.

This cancer, my family knows, is an ugly way to die.

Yet the doctor who discovered the tumor didn’t talk to my dad about it, didn’t look him in the eye and answer his questions.

The doctor instead foisted that burden on me — by phone.

Before I started writing this blog about my outrage, I spoke with four R.N.s — three who work in different departments at the hospital where my dad is, plus an oncology nurse at another facility. I told each how my dad’s diagnosis unfolded today because I wanted to make sure my anger is justified, not just fueled by my fear and grief over the cancer.

Each assured me that my ire was righteous. Three called the doctor’s behavior unprofessional. I call it cold.

Judge for yourself. Here’s what happened:

I wheeled mom into dad’s hospital room just after 2 p.m. He had just returned from having an endoscopy, a procedure in which a doctor inserts a flexible tube with a light and camera attached to scope the digestive track.

This test, we hoped, would reveal the source of dad’s acute blood loss  — which had become so severe the test was pushed back a couple of hours so dad could receive a blood transfusion.

I told the nurse helping my dad I wanted to be there when the doctor came to the room with the results and asked her to get an approximate time because I had to run my mother one-floor up for a scheduled iron infusion at 2:45 p.m. and didn’t want to miss him.

The nurse, who was very helpful, hadn’t been able to reach the doctor by 2:40 p.m., so I scurried upstairs with mom and then rushed back downstairs to wait with dad.

When the nurse saw me, she assured me she was still trying track down the doctor. A few minutes later, the phone in dad’s room rang and the nurse bolted in saying it was the doctor on the line.

The doctor — whom I have never met, but who is part of the gastro practice that both my mother and father use — never asked to speak with my father, nor did he offer an explanation about why he didn’t stop to see us before leaving the hospital.

He instead told me he discovered a tumor that was almost certainly cancerous on my dad’s esophagus. The doctor didn’t have the results of the biopsies yet, but he already called in two oncologists to consult.

I was stunned. I figured a phone call was good news, or at least neutral news — maybe he wanted to run more tests. But not this. A doctor doesn’t drop the cancer bomb by phone.

So I slipped into my most comfortable suit of emotional armor — my newspaper reporter facade — and grabbed a nub of broken pencil from my dad’s bed tray and started asking questions.

The doctor spelled the names of the oncologists for me and told me what would likely happen next — a CAT scan, the assigning a “stage” to the cancer and a treatment plan.

All of this, of course, is happening at the bedside of my dad, who is listening to my side of the conversation and trying to figure out what was going on.

Was this the source of dad’s blood loss, I asked, trying not to say the word cancer until I could talk to dad.

The tumor he found was covered in dried blood, but wasn’t actively bleeding, the doctor said.

Tumors, he told me, bleed intermittently.

The phone call lasted less than three minutes.

When I hung up, I told dad he had cancer.

Dad asked a couple of questions that I had no answers for.

A few minutes later, I picked up mom from her iron infusion on the floor above and told her dad has cancer.

She, too, had questions I had no answers for.

Is this the way medicine is supposed to work?

P.S. I haven’t yet decided whether to post the doctor’s name. I most certainly will write letters to his medical partners and the president of the hospital where this happened. We are not using the oncologists this doctor brought in for consultation.

What happens when someone with dementia and/or Alzheimer’s is admitted to the hospital?

It’s 6:30 a.m. and dad hasn’t called yet demanding to come home.

I’m surprised.

He was admitted to the hospital after midnight following several long, boring hours parked at urgent care waiting for a bed to open. He’s in no immediate medical danger, but he’s weak from unexplained blood loss and that’s left him especially wobbly — both on his feet and with his thoughts.

This if the fourth time he’s been admitted to the same hospital over the past four years and, each time, his mild/moderate dementia ramps up — especially the anxiety.  Unfamiliar surroundings. Strange sounds. And the inability to reach for that red box of Pall Malls, his adult pacifier, adds up to trouble.

When I made the urgent care doc aware of dad’s dementia issues, he pushed me to meet my dad at the hospital, saying  I should “tuck him in.” (Luckily my husband was with my mother at home, who has more severe dementia. What happens to other caregivers who don’t have backup?)

At the hospital, I handed the nurse a printout of dad’s medications. She patiently listened as I ticked off a list of dad’s needs: A walker, a bedside commode, a nicotine patch, lots of water — sans ice — at every meal to help him swallow.

But when I brought up dementia, she looked at me — just a quick sideways glance — and then back at her notes and asked where I was going to be. I told her I would be at home, just a mile or two away, and gave her the numbers of both my husband and myself.

She said nurses would put a bed alarm on dad — a simple device that clips to a hospital gown and alerts nurses should a patient start to get out of bed. And that — and the hospital’s ability to reach me — was the only dementia help provided.

I’m not naive. Any dementia patient must be a pain in the butt for nurses who are often already struggling to take care of a full load of sick, non-dementia patients.

But a demographic shift looms. People with dementia will fill more and more hospital wards — people whose children don’t live nearby or whose caregivers have other obligations that make it impossible for them to be on call 24/7.

What happens then?

Wheelchair lunacy: Even a new medical center and docs can’t get it right

My mom and dad’s doctor moved into a stunning new medical building about three years ago. It sits up on a hill, surrounded by woods. It has its own helicopter pad, a full-service emergency room and a chemotherapy wing, along with offices for dozens of physicians.

Yet — the wheelchairs provided in the lobby of the building don’t fit through the entrance doorways to the doctors’ offices.

How stunningly stupid is that? A medical facility — where almost half the parking places are designated for handicapped, oncology and expectant mothers — that doesn’t match its doorway widths to the wheelchairs it uses.

I should point out that all wheelchairs provided are super-sized, about 40 percent wider than standard.

The easiest fix, of course, is to provide some standard wheelchairs, too. But the proper fix is to widen the doorways for those who do depend on the larger chairs.

As it is, overburdened caregivers like myself (or worse — the elderly trying to care for their more fragile elderly loved ones) must lift their own wheelchairs in and out of their cars to visit a building of healthcare workers who should be attuned to the needs of their patients.

I don’t know what patients do who need the wider chairs. Do doctors examine them in the hallways? Sad.

It could be worse, of course. My parents’ longtime podiatrist put his office in an older home that sits on a slope off of a mostly residential street. No wheelchairs are provided. It’s a small building, so I understand why.

But the challenge here is gravity: Getting mom from inside the car, to a wheelchair and then into the office (and the reverse) is  more of a battle. And if I forget the wheelchair brake or it slips, there could be disaster — a runaway wreck into a manicured flower bed between the small parking lot and the street.

I thought my parents’ gastro doctors got it right in their relatively new three-story complex. At the entry, there’s a large button to push which is supposed to open the doors so someone in a wheelchair can easily roll through.

That button hasn’t worked since my first visit with my parents — three years ago.