Sneaky Pete can be a real pill!

Oh he’s sneaky, my husband. I know it, our family knows it, his companions know it, the nurses know it. Sneaky Pete. Sometimes it’s funny, other times not so much. Sometimes his sneakiness has the potential to cause real problems.

A couple weeks ago an innocent mistake triggered his wrath. He was really, really angry. Combative. Luckily a nurse was able to intervene and calm him. My husband has so seldom been truly angry that I could count the times on one hand. This was so not him.

I heard about this after the fact.

At the same time I learned he’d been refusing to take his meds again. This had happened now and then for some time, but as far as I knew the problem had been solved long since. Oh, he appears to take the pills but he pockets them, or tucks them under his tongue or inside his cheek, or simply lays them down somewhere. It is likely that not taking his Wellbutrin for several previous days contributed to his rage.

Residents in memory care units often refuse their meds for fear of being “poisoned.” Or because they’re to hard swallow. One common practice is to put crushed pills in applesauce, or ice cream, Reese’s cups, drinks, pudding, peanut butter, Jello.  Those don’t work with Peter, but one nurse who never has a problem with him, puts his evening pills in his doctor-prescribed after dinner Guinness. Works a treat.

Thing is, he likes to tease and he loves the attention he gets when one of the staff realizes he’s tricked them. For all the time I was his caregiver at home, I dealt with his refusal to take pills by donning my “Mother Tough” persona, my left eyebrow on alert. I’d stand beside him and, to make sure he swallowed them, I’d tell him to hold both hands out palms up, then pull his pockets inside out, and finally open his mouth. I wasn’t bound by HIPAA rules that say a patient can’t be forced to take medications if he/she doesn’t want to. Medical personnel cannot force meds on a patient. If the patient says no, that’s it.

That’s just wrong. If refusing a medication were to cause the patient to become markedly worse—or perhaps cause their death—wouldn’t that be a lawsuit waiting to happen?

This morning I popped in for a quick visit between an appointment and several errands. Involved story, but when Peter searched his pockets  he “found” his morning pills. A helper and I noticed at the same time. “Peter,” we yelped in unison, “you’re supposed to take those pills, not carry them around!”

His silly “who me?” face said he’d achieved his goal. He’d been noticed. He protested all the way through the building to his room and, no, I didn’t drag him by the ear, but I wanted to. In no uncertain terms I told him to put the pills in his mouth and drink them down with the cup of water I handed him. He complained and said they tasted awful. “You’re not supposed to chew them!” I said. “Of course they taste awful. Take a big drink and swallow them.”

I know, I know, I should’ve handled it better. But, doggone it, he doesn’t remember why he’s in memory care nor why he must take various medications, but he does remember how to get a rise out of me and anyone else who tries to help him.

It really isn’t a laughing matter.

Header photo: Jersey Urology.com

2016 National Society of Newspaper Columnists’ contest finalist. 

Cure for common cold!

On New Year’s Eve, with no bubbly in sight, my husband started hiccuping, or hiccoughing as he would spell it. Uh oh, I thought, he’s getting a cold.

I dosed him with vitamin C in the form of Clementines, cups of sweet, hot tea, and homemade elderberry cough syrup. He grimaced and muttered at all my attempts, so I gave up and went to bed. Later, I was awakened from a sound sleep by a cacaphonus hiccup accompanied by an echoing, hacking cough. “Arrrrgh-h-h-h!” I groaned.

“Sorry,” he whispered. He always attempts to be very quiet so as not to wake me. He twisted and yanked at the covers and  finally settled onto his side. “HUH-HUHH-CK,” he said. “Sorry.”

He was asleep instantly, but the staccato sounds continued. I pulled my pillow over my head. “Try holding your breath.”

“Why?”

“To stop your hiccups,” I said, though from experience I knew it would not.

He didn’t even try. The bursts continued until I suggested that he might sleep better if he went into the other bedroom.

“Why would I sleep better there?”

“Because I won’t poke you all night!”

He clomped down the hall and I drifted to sleep. I knew I hadn’t handled that well, but, I rationalized, no one dies from hiccups.

Later still, Peter got up to use the bathroom, but forgot he was sleeping in the guest room. He returned to our bed, grabbed for the covers but instead got my arm which I’d flung across to his side. Both of us yelped. “What are you doing?” I said.

“Coming back to bed…I thought you were sleeping in the other room…”

“No, you were!” He plodded back down the hall.

Sunday morning, froggy-voiced, weepy-eyed, drippy-nosed, and still hiccuping, he croaked, “Good morning.” His voice was in the basement.

“How do you feel?” I asked. He patted himself all over and grinned. I rolled my eyes. That’s always his answer to my how-do-you-feel question.

His symptoms continue to this moment. He’s in the next room watching television, hacking and sniffling and still hiccuping endlessly. When I asked how his cold was this morning, he shook his head and said indignantly, “Cold? I don’t have a cold. Sneezing a bit, that’s all.” He coughed hard enough to untie his shoes and knock his socks off.

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And that, Readers, is how I discovered the cure for the common cold, at least at our house. Dementia, dementia,  that’s the cure. Peter insists he is not sick, does not have a cold or a cough or a hiccough. Since he doesn’t have a cold, there’s nothing for me to catch.

Knocks the achoo right out of the Kleenex™ factory, doesn’t it?

Who’s the granddad?

The doctor asked Peter if he had grandchildren. Peter shook his head slightly, but looked at me. “I don’t, do I?” he said. I raised my left eyebrow and nodded. “Sam and Miah?” he asked, obviously still puzzled.

Doctor T is our family’s doctor. He’s taken care of our grandson since he was born twenty-two years ago, and Leslie, Martin and Samantha even longer. “Who’s your grandchildren’s grandfather,” he asked next with a twinkle in his eyes.

Peter thought a long time. “It’s not me, is it?”

“You’re the only grandfather they’ve ever known,” I told him.

“But they’re your grandchildren,” he said, “they’re not really mine are they?” (Their paternal grandfather died before they were born, and they met my ex-husband just once when they were in their teens.)

“You’ve known them and loved them all their lives, haven’t you?” The doctor smiled.

“Yes, oh yes!” Peter, aka Dad-Dad, answered. When Sam was about two we tried to teach her to say “Granddad” but she could only manage “Dad-Dad.” That’s who he’s been for more than twenty-seven years now.

The questioning took place at our semi-annual prescription/follow-up check. I schedule them back-to-back to save time. When Dr. T asked Peter how he was doing, he said, “I’m fine, no problems. The dog walks me twice a day.” That’s one of his standard conversational phrases.

“How do you think he’s doing?” the doctor asked me.

I sighed, I’m sure. “He’s more forgetful…and he’s having nightmares, kicking a lot. He kicked himself out of bed two weeks ago…” I could tell my husband didn’t believe me even though I’d told him it had happened. “And he carries on coherent conversations in his sleep sometimes…”

“Pffft, that’s not me talking,” he said, “I’m not a talker!”

“Not when you’re awake, but you are when you’re asleep.”

Doctor T laughed at us. “Actually the kicking isn’t really caused by nightmares,” he said, telling us the unpronounceable name for the condition. “I can ‘up’ your Aricept prescription slightly and that should take care of it. We don’t want you hurting yourself or your wife with ‘soccer ball’ kicks!” Peter laughed at that.

During my separate follow-up session, the doctor asked if I was doing OK. I waggled my hand and gave my standard, can’t complain too much answer. “There are caregivers who have much worse to contend with,” I said.

“I wish I could prescribe a pill that would help your situation,” he said. And I knew he understood.

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This happy fellow on an Amsterdam windowsill made me laugh. (2007)

Header photo: Daffy-down-dillies in spring.

2016 National Society of Newspaper Columnists’ contest finalist. 

Laughter, always the best medicine.

This caregiving business is a series of lessons on the run. I have an “ah ha” moment almost every day.

Take today.

Every morning, I put our prescription meds into two shot glasses — Peter’s on the left of the coffeemaker, mine on the right. He takes an 81 mg aspirin, Losarten for blood pressure, Wellbutrin for mood, Livolo for cholesterol, and Vitamin D3 because dementia patients are thought to be lacking in the D vitamin. Oh, and Namenda, the well advertised medicScreen Shot 2015-08-09 at 5.49.32 PMation thought to slow the effects of dementia-related diseases. How could I forget that one?

After dinner, I dole out Glucophage, the supposed answer to leveling his blood sugar levels since he won’t leave sweets and carbs alone no matter how often the doctor explains nor how often I nag. Just before bed, he takes Donepezil (Aricept), to treat confusion, possibly improve memory, awareness and the ability to function.

How well do these meds, particularly Nameda and Donepezil, perform? I have no idea. I do know that his taking pills from the wrong shot glass was an important lesson-in-waiting for me this morning.

I discovered the mistake when I poured my second cup of coffee. Peter was already watching West Ham beat Arsenal. “You haven’t taken your pills yet, Peter. No, wait! Mine are gone and I never take them until after my coffee!”

He had no idea what I was talking about. So much for awareness.

“Did you take my pills?” I asked, showing him the little empty glass. “Yes, you took mine.” I answered my own question.

“I don’t know…probably,” he said. “What will happen to me?”

“Hm, well, my super prescription vitamin may give you a boost. Maybe you’ll have the energy to mow the grass…” I laughed at my own joke as he made a face that said, “Not bloody likely…I’m watching soccer.”

I didn’t expect that he’d cut the grass, and he didn’t. But, lesson learned, from now on I’ll keep my medications in a secure container in my pocket.

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Ah ha! A beer-on-a-stick might work.

Header photo: Morning glories keep their eyes on Peter.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Magic pills? Wonder drugs? Snake oil?

She’s his advocate, his ears, his caregiver. She’s an attractive blonde, late forties perhaps, who takes care of her father in a new tv commercial. They look alike and maybe they’re really related. Perhaps it isn’t a made-for-tv reenactment.

The spot promotes Namenda (memantine hydrochloride) XR, a medication long prescribed for people with moderate to severe Alzheimer’s. The new extended release (XR) version, with seven additional milligrams of the active ingredients, offers once-a-day convenience. Used in combination with another commonly prescribed drug, Aricept (acetylcholinesterase inhibitor, AChEl), the two may keep symptoms from worsening, at least for a while.

This is one of those commercials that urges you to ask your doctor about this drug for your loved one. An announcer gives the laundry list of side effects: nausea, Screen shot 2015-01-31 at 5.05.22 PM_2vomiting, diarrhea, constipation, loss of appetite, dizziness, tiredness, weight loss, swelling in hands or feet, fast heart rate, easy bruising or bleeding, unusual weakness, joint pain, anxiety, aggression, skin rash, redness or swelling around eyes, or urinating more than usual. Makes you wonder why you’d want something that might add to your loved one’s misery. Frankly, I think all those “ask your doctor” commercials should be banned, but that’s a post for another day.

Peter has taken both drugs for more than five years with no side effects. His neurologist asked recently if I thought the meds were helping. “How would I know?” I said. She shrugged.

The commercial oozes warm fuzzies. We see the concerned, loving daughter, her young children, and her sweet-faced father who is included in their activities, but who seems vacant, absent. “All my life he’s taken care of me,” she tells us, adding that it’s her turn to take care of him.

All well and good, and we love her for her dedication. But, jeez, am I alone in wondering why we never see the caregiver’s frustration? Neither medication is a cure. The best science can do is slow the disease for a while.

And what can science do for caregivers? Is there a magic pill for us?

If a camera were mounted in a corner at our house, it would record smiles, yes, and silly laughter, but it would also record heated talk, lip-biting, teeth-gnashing, hair-pulling, and tears behind slammed doors. The camera would see me trying to read, uninterrupted, for fifteen minutes. It would see someone else cooking, cleaning, making appointments, counting out pills, and making endless cups of tea to sooth upsets, his and mine.

Oh yes, I know there is help for some of those tasks, but I can’t—won’t, not yet—delegate most of them. Our wedding vows weren’t the traditional ones, but I did, “…promise to honor and tenderly care for you…through all the changes of our lives.”

A camera would also see the occasional enveloping hug, and Peter asking, as he always does, “What would you do without me?” At my eyebrow-raised, tilted-head glance, he would change his question to, “I mean, what would I do without you?”

And, as we always do, we’d laugh at his little joke. Truth is, I often don’t know what to do without him.Screen shot 2014-09-13 at 11.08.38 AM

Header photo: Peter and I at river’s edge, 2014.

2016 National Society of Newspaper Columnists’ contest finalist.