A man and his dog.

After several years together dog owners and their dogs begin to look alike, so they say. They begin to act alike too, in my opinion. Take Peter, 81, and Nobby, his golden doodle, nearly 12.  Both are mischievous and have the inherent ability to make people laugh at their antics. Both would fetch sticks for hours if their years hadn’t slowed them.

The final week of October was a week I’d like to forget and one Peter forgot as it was happening.

Monday, Nobby had surgery to remove a suspicious lump from his left front leg. While he was anesthetized, the vet cleaned his teeth, too. When I picked him up, he was wobbly, confused and so ashamed of the blue cone around his head. It interfered with his food and water consumption, his ability to walk through doors easily and, worst of all, he couldn’t find the right spot outside, um, to mark his spot.

Tuesday, just as I was leaving for my own teeth-cleaning appointment, the phone rang. Peter had had a bad turn at lunch. He was disoriented, more confused than usual, incontinent and his temperature was 101.2°.  Would I come? Of course I would. Hindsight tells me a trip to the dentist’s office would have been a piece of cake and Peter likely would have chosen a root canal over what followed.

His temperature had spiked by the time I got to his room. His face was so red it was almost incandescent. “Can someone take his temp please?” I called out. Whoa, it was 104°! I put cold washcloths on his forehead while waiting for the doctor to return my call. I requested Tylenol from a nurse. Nunh uh, without doctor’s orders not even Tylenol can be given to a resident.

As is always the case, Peter said he wasn’t sick. He tried to bluff his way past my concern. He was as dazed and unsteady as Nobby was on Monday. I urged him to drink water, then steered him toward the bathroom. Like Nobby the night before, Peter didn’t know why he was in there, but at least he didn’t have to go out into a dark, drizzly night.

We went to the emergency room where he was seen quickly enough, though it was a five-hour ordeal. He was hooked-up, jabbed, poked and questioned. He tugged at his IV, tangled the blood pressure tubing and tried his best to get the pulse oximeter off his finger. He bellowed and cursed during one particularly sensitive probing. Later he erupted like a child when a nurse gave him Tylenol tabs and a cup of water. “Tastes awful,” he yelled, even as I cautioned against chewing. This was not the behavior of the mild mannered man I married. This was dementia talking.

Like Peter, Nobby refuses to swallow pills, even wrapped in Pill Pockets. He spits them out with such force they fly across the room.

With a presumed diagnosis of prostatitis, Peter was finally admitted and in a room by 9:15. A steady procession of nurses, students and doctors paraded in and out. He couldn’t answer any of their questions, still insisted he wasn’t sick, still babbled as if drunk. When one asked his full name, he slurred his words. “Whydoyawannaknow?” he asked. Did he know the date or where he was? I cringed. Hadn’t she read his chart? Didn’t she see that he has dementia and lives in a memory care unit? Finally, gritting my teeth, I said that he hadn’t been able to answer those questions for years.

Meanwhile, Nobby had been home alone for hours. Leslie went to him after work. When I got home, the dog, way peppier than the day before, wanted to play. I went to bed.

Wednesday, the doctor definitely ruled out a UTI, flu, pneumonia and several other possibilities, but had ordered blood and urine cultures. Peter was to stay another night. Leslie and Martin brought dinner to me and afterwards, she went to the hospital. He was his goofy self, she texted. He walked her to the elevator so many times, she finally shut the door to his room and told him firmly to stay there.

Peter the ghost.

Always a trickster.

Thursday, Peter was back to his old tricks. He hid in doorways and yelled boo at passing nurses. He joked and teased and wouldn’t give anyone a straight answer. He’d pulled his IV out and was so energetic that they turned off the “fall alarm” on his bed. When yet another nurse arrived, Peter said he wouldn’t answer any more questions. Still she tried. “What hobbies have you enjoyed, Mr. Clarke?” she asked.

He had an devilish look on his face when he pointed to me and said, “Her.” She blushed, I laughed and Peter turned as red as he’d been two days earlier.

By the time I got home, Nobby had discovered he could lick his sutures through the cone, and later still he figured out how to bend the cone for unobstructed access to those pesky stitches.

Friday, Nobby’s doctor called with good news. “The lump was benign!” she said. “I’ve never heard of it, I can’t pronounce it, but it’s something particular to poodles.”  Good news indeed. That evening, Peter was seen eating popcorn while glued to “The Queen” with Helen Mirren. Such was the week that was.

Header photo: Nobby looks good in blue.

 

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Laughs aside.

My husband is nothing if not inventive. Over the past year he has created multiple, novel ways to corral his belongings. He’s wrapped his shirts and trousers in the plastic wastebasket liners, he’s lodged his toothbrush in its plastic container along with six tightly folded handkerchiefs, he’s used the tie-backs on his curtains to bind books together.

Like many residents, Peter packs his belongings to go home, sometimes several times a week; sometimes his room is tidy. He’s stuffed underwear in his shoes, and recently he crammed all of his clothes into a pair of trousers. It looked like the bottom half of a scarecrow, I’m told. If I’d been there I would have taken a picture.

Small items regularly disappear — nail brush, wooden pencils, socks — only to be fished out of his pockets an hour, a day, a week later. One day I noticed he had no sheets or pillow cases on his bed. He’d slept on the mattress with the mattress pad as a cover the night before. Didn’t stop him from sleeping soundly, I’m sure.

Lately, I’ve noticed he often wears two, long-sleeved dress shirts. He isn’t cold, he’ll say, he just forgot he already had a shirt on when he got dressed. One day he was wearing two belts, the end of one fastened to the buckle of the other. “Something’s wrong here,” he said with a silly look on his face.

The clever ways he keeps from taking his medications are not funny, but he’s such an impish personality that he gets away with his tricks almost as often as not. The doctor just increased one medication significantly to curb his too-high A1C. Full blown diabetes is knocking on dementia’s door. That is not laughable at all.

Header photo: Peter enjoys the laughs he creates.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

I’ve run out of ‘fake.’

I’ve been called a “fake it ’til you make it” type and that’s probably accurate. I do try to look on the bright side, to laugh rather than cry. And I am able to get things done while projecting a measure of confidence—usually. Lately, however, I’ve run out of “fake.” After nearly 16 years grappling with my husband’s journey from a “mild dementia” diagnosis to “can’t rule out Alzheimer’s,” I’ve spun out.

My spin has shocked me because life has actually eased in recent months. Peter is more settled and, in fact, he’s turned into an 81-year-old version of a ten-year-old class clown. He flirts, he lays on his English accent, he entertains residents and staff alike with his antics. He’s in as good a place as he can be physically and mentally. He has his favorites amongst the ladies who he looks out for and helps when he can, although the other day I watched him guide a resident into the wrong room. She knew it wasn’t hers, but he insisted. I ended up directing her across the hall to her door.

So why have I fallen apart? I should be less stressed, but I’m not. Have I spread myself too thin?

For one thing, with Peter more comfortable I’ve turned my attention to other problems. Although he gets good care in the best facility around, I have some gripes. For one thing, his not taking his medications is at the top of my list. It is simply not acceptable that he gets away with his shenanigans to avoid taking them. Again, when I walked in Friday afternoon, his three morning pills were lying on the table in plain few!

I’ve complained about other issues and they’ve been acted upon. That’s good. So now I’m considering ways to get the large raised flower bed dug over so residents—particularly the men who crave more activity—could plant flowers and more vegetables than they are able to grow in the one small raised plot. Then too, the gazebo should be spruced up — Peter decided the other day that the ceiling should be painted a beautiful sky blue — and the outdoor furniture should be replaced. How nice it would be to have a table and chairs in the gazebo where residents could sit, have a snack, play a game. Where we could have a cup of tea without balancing it on our knees. Is that too much to ask for the amount we pay for monthly care?

I don’t think so, but at the moment I’m stalled, burned out, stuck. To aid the burn-out, I’ve been advised to stop visiting him so often, usually four to five days a week. It is wearing and since he never remembers I’ve been there, I should allow myself to take days off. That’s tough. I want to visit because sometimes, sometimes, there’s a glimmer of the man I married, and I always get a hug before I leave. I always hope that somehow—osmosis?—my visits will have made his day better.

How many times over these years have I been told that the caregiver needs to take care of herself? Well, I admit to being stuck between a rock and a hard place lately, but I’ve taken steps. I’m learning to compartmentalize, I’m exploring mindfulness, I’m breathing deeply to meditative music, I continue my every other week massages, and I continue to look for laughs every day. So far I haven’t stilled my spinning brain by much, but I’m a work in progress.

Tiny flowers thrive in crevices in long-abandoned Inishmurray, County Donegal, Ireland, 2009

Header photo: Guillemots cling to tiny ledge on Cliffs of Moher, County Clare, Ireland, 2009.

2016 National Society of Newspaper Columnists’ contest finalist. 

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. 

His sneezes, like his questions, are repetitive.

Hiccups every few minutes for several days predict a bad head cold for my husband. Sure enough, a weekend of hiccups were followed on Monday by a cacophonous, multi-sneeze cold. I started force-feeding orange juice, more cups of tea than are usual for him, and a potion a friend recommended.

Every time I approached, spoon in hand, Peter said, “What’s that for?”

“Your cold,” I answered again and again.

“Do I have a cold?” he croaked between sneezes.

“Yes,” I said, over and over. “Mmm-m.”

Tuesday, when I asked if he felt well enough to go on the usual Nobby-the-therapy-dog visit to the adult day care facility, he asked if he’d been sick. Then he sneezed and sneezed and sneezed. I cancelled.

Same again this morning. A nursing home visit was scheduled for Nobby. “How do you feel?” I asked. Peter patted himself all over and said, as he always does, “I feel fine.” He sounded worse than Louis Armstrong on a good day. I cancelled the visit.

imagesimages-2There are so many horrible diseases humans contend with, but often it’s the common cold that makes us the grumpiest. Dementia is a bit like Kleenex – it wipes away the last sniffle, the dripping nose, the streaming eyes. The cold is still contagious, but dementia in all its guises, is not — and that’s a good thing.

My husband isn’t grumpy when he has a cold, he’s sneezy. But when I catch his colds, lookout, I’m grumpy.

 

Sneezy and Grumpy sketches: “Snow White and the Seven Dwarfs,” ©Walt Disney Studios, 1937

Header photo: A sneeze magnified.

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.