‘Between the sticks.’

I started section one below on February 9, the first day of the 2018 Olympics. Danged if Life didn’t cause an interrupt. I no longer remember where I was going with a soccer reference, but I do know where I’ve been. It’s nowhere I’d recommend.

2/9/18 – The nicest thing I do for my husband is circle the soccer matches on the sports page. I jot the channel numbers next to the listings, too. Peter loves his “football.” I did not do it yesterday when the Olympic events began.  The winter games only come along every four years and soccer took a back seat.

People say I’m such a good caregiver, so patient with my ever more confused husband, always able to laugh at our plight. But really, except for reminding him about football matches, No. I’m. Not.

As his condition worsens my stress heightens. No surprise there. Exhaustion envelopes me like shrink wrap on a carton of mushrooms. While Peter sleeps easily and long — 10-12 hours a night, plus mid-day naps — my sleep is a power nap now and then and seven or eight interrupted, restless hours at night.

As Peter becomes more oblivious to things, I become more aware of every thing that could go wrong with our lives, our health, our house, our country, our world. While he sinks into what could be likened to torpor, I become more frantic about what needs doing, fixing, cooking, washing, repairing, mending, replacing.

Any caregiver who is on duty 24/7 will understand. I’m lucky in comparison to some because I do have help with Peter several times a week, two daughters to advise me, cleaning help, and friends to console me. But still I fret.

4/14/18 – Where I’ve been is in the throes of indecision and upset unlike any I’ve experienced on this caregiving journey. In my most recent posts I’ve written a lot about the problems, the angstYet, as I write, I cringe. Whining doesn’t help.

Since February 11 and all the chaos that followed that event, our lives have changed. For one thing, my formerly cussedly independent husband is now very needy. He can no longer do even the simplest things — make his own tea or a sandwich, walk the dog, or even walk by himself without stumbling or falling. All these are markers for the escalating effects of Alzheimer’s.

He can no longer visit nursing homes with Nobby. Even eating out is problematic because he can’t make up his mind what he wants, yet doesn’t want anyone to choose for him. He’s satisfied watching Netflix at home these days rather than going out to a movie.

I’ve had to take further steps to ensure his safety inside the house — locks on the basement door, for instance, and no locks on bathroom doors. I took rugs up lest he trip, put covers over the stove’s gas burners, and I never leave the house without him, even for a quick dash to pharmacy. “I am OK on my own,” he yells when I insist he come with me.

These days we play endless games of dominoes, occasionally go for coffee or a drive. He even refuses to walk Nobby because he doesn’t want me to go along. “I can walk by myself,” he insists. But he can’t, not any more.

The one thing my husband still can do is pick up sticks in our yard and  little patch of woods. He was thrilled two weeks ago when he could clean up a big branch that broke off our maple in heavy snow. He spent the weekend snipping, breaking, and sawing branches into precise lengths for the town’s after-storm pick-up. Son-in-law Martin arrived with his chain saw to take care of the biggest section.

Other caregivers would understand why such a silly thing as watching my husband’s obsessive twig collecting nearly drove me ’round the bend. When I complained to Martin he said, “He’s having fun, he’s out of your hair, he’s happy.” I laughed. He was absolutely right.

4/15/18 – Where we’re going is a post yet to be written, a post I don’t want to write. In the meantime, on this stormy Sunday afternoon, Peter is in the woods picking up sticks.

 

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He’s still my cup of tea.

The Cambridge English Dictionary definition of kettle reads: kettle, noun, a container for boiling water, that has a lid, handle, and spout and is made from plastic or metal. put the kettle on. to start to boil water in a kettleIt had happened twice before and was only a matter of time before it happened again. Since his life-changing crash last month Peter has seldom made tea without my supervision. Monday evening I watched him, hawk-like, from the family room as he made tea without me hovering. I saw him fill the kettle, put a tea bag into his cup, and set it beneath the heat lamp above our stove. He stood in front of the stove longer…than…I…STOP. DON’T DO THAT!” I yelled. Peter had turned the gas on and set the electric kettle on the flame. By the time I got there, the kettle’s plastic bottom had melted. It resembled a reentry module from a space shuttle. He’d managed to turn the gas off, but didn’t really understand what had happened.
“This is an electric kettle,” I said, more frantically than I should have. “You ‘fried’ it,” I added, attempting a feeble joke.
“It’s fine,” he said, “still works.” I shook my head, showed him the damage and dumped the kettle into the trash.

“No tea tonight,” I said, guiding him back toward his chair.

Ten minutes later he got up and asked if I wanted a cup of tea. I reminded him the kettle was toast but he didn’t understand that little joke either. “Burned up…like burned toast,” I said.

Yesterday I shopped for a another kettle. I thought about an old-fashioned stovetop one, but bought another just like the electric one we’d had.  Then I second- guessed myself and continued shopping, this time for a regular kettle like the one he’d grown up with.

Later, after showing him the new kettle that whistled like his ol’ granny’s did, I urged him make a cuppa. When he held the kettle over the cup to pour, he forgot to pull the whistle cover back. Most of the water went onto the stove and counter top. He tried again, with similar results but with me beside him to prompt.

Then, before bed I went to prepare the coffee maker for this morning. A smell? SMELL…OMG GAS!  I hadn’t supervised his last cup of tea and although he’d turned the knob to the left as he should, he hadn’t turned it all the way to “off.”  Gas hissed, though I couldn’t hear it in the other room, and I didn’t smell it until I was in the kitchen. I think Nobby knew something was wrong. He’d been nudging us for some time as he often does in the evenings. I think he was trying to warn us that we needed to get up and fix it.

When I explained to Peter what had happened, I tried to make light of it. “Good thing we aren’t smokers!” I said. He didn’t get that either, but he was quite pale. Then I remembered what I never would’ve thought my husband  would remember. His granddad Alf, then in his mid-nineties, had started having trouble making his tea. The final shot that forced Peter’s dad, John, into finding a nursing home for Alf was when he found the kettle on the gas hob, flames shooting to the ceiling. A pot holder had caught fire. John, widowed, had Parkinson’s Disease and needed help himself. He could no longer look after his father.

The electric kettle I bought yesterday went into service today, as have cookie sheet barriers across the top of my range.

The English are known for offering calming cups of tea in crises, but last evening, when we really needed a cuppa, I’d already hidden the stovetop kettle and was too shaken up to find the electric one that I’d stashed somewhere. It seeing action today though.

Header photo: the melted bottom of our electric kettle.

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‘I believe that tomorrow is another day & I believe in miracles.

Three weeks ago my husband’s already steep downward trajectory propelled him to a crash-landing in a muddy ditch — “The second worst day of  my life so far” The ten days following were worse, but then darned if a miracle didn’t happen.

Cruel disease that Alzheimer’s is, I know this upward swing won’t last, but I’ll enjoy it while it does. Peter can’t put his feelings into words,  but I see the twinkle in his eyes again.

Several things happened to precipitate the miracle…series of miracles really. First, ten days ago, his feet slipped out from under him while he was trying to get dressed in his closet. That doesn’t sound like a good thing, but it was.

Until that day, he’d been barricading himself in the closet. Not by locking the door, rather by pulling out a drawer in the built-in dresser, thus jamming the door. He did not want me to help him get dressed no matter how long it took him. “What if you had a heart attack or a stroke or something? I wouldn’t be able to help.” I said. He snarled. Later I removed the drawers and hid them.

But that day, with no barricade and him flat on the floor, I was able to shove my way in by using the door to push him out of the way. I couldn’t lift him though, and he couldn’t get up by himself. I grabbed a towel from the laundry basket, Peter shifted his bum onto it, and I pulled him across the floor to a chair. He managed by himself then.

When he fell, I think he jarred something in his brain back into place. After we both rested for a bit, I told him he smelled like road kill on a July day, and he needed to shower. Once clean — I did wait outside the door to help if need be — he came downstairs hungry for the first time in ten days. He ate his usual big lunch and was hungry again two hours later. He was actually quite chipper!

That evening, Carolynn and Bill arrived to help us for a week and, not incidentally, celebrate Peter’s eightieth birthday. He perked up when they arrived, though he grumbled that I hadn’t told him about their visit.

From that day to this, his “Parkinson’s shuffle” ceased and he began to walk almost normally. He goes up and down the stairs easily, still holding the bannister, but not with the two-handed white-knuckle grip like before. Once again, his steely determination prevailed, and his clenched-teeth warnings, Leave-me-alone. I-can-do-it-myself, were validated.

There were a lot of laughs at his new normal, but none more so than his telling Carolynn and Bill over and over about the times he hitchhiked in big trucks to get up and down I-81 or back to college in England. The story varied as often as he told it.

He was surprised by his birthday, didn’t realize he’d reached 80, nor that the pile of presents were for him. He kept us in stitches while he opened them. The family gave him thoughtful things he enjoys and cards he looks at every day. I, ever practical, told him the accessible toilet Bill and Martin installed was a present from me. He was pleased. In addition to a selection of tiny  French pastries in lieu of carrot cake which he no longer likes, I gave him a fake cactus similar to the type he raised years ago. He thinks it’s real and waters it several times a day. If it were real, it would have drowned by now. Makes me a laugh to see the puddle and gives him something to do. I don’t remind him it’s plastic.

Most miraculous of all, he calls me “Luv” again the way he used to do. He gives me hugs and kisses, about 23 so far, and murmurs, “What would I do without you?”

I’ve thought about that, but I don’t dwell on the possible answers. For now, I’ll hang onto an Audrey Hepburn quote for as long as I can: “I believe that tomorrow is another day & I believe in miracles.”

Header: The fake cactus looks as real as the real begonia nearby.

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The second worst day of my life so far.

A policeman stood at the door.”Afternoon, ma’m,” he said. “Does your husband walk a big white dog?” I nodded. “He’s had a fall. An ambulance is on the way.” I grabbed the door to hold myself up and he added quickly, “He’s all right, but they’ll take him to the hospital as a precaution.”

“Come in and lock the door behind you!” I yelled, while I ran to turn the stove off, grab my purse, and dash out the side door. “Your dog is OK, too,” he said as he followed me through the house. “He’s right beside your husband. Another policeman will bring him home.”

Peter had fallen — face-planted — into a shallow ditch less than a block from our house. It had rained all day, the ditch was running. I’d fastened his GPS watch around his wrist before he and Nobby left.  Minutes later, I saw that he’d taken the watch off, defying me as he does, and left it the kitchen. If a passer-by hadn’t seen him and called 911 I would have had no way to find him when he didn’t return. It could have been worse.

But “worse” was yet to come.

A second policeman — the same one, incidentally, who helped find Peter last summer when he got lost — took me to the ambulance. He was already on the gurney when I climbed in behind him. He turned his battered, muddy face toward me and said, “Uh oh, now I’m in trouble.” The EMTs laughed. He kept them entertained all the way to the hospital.

In the ER he kept up his joking to the amusement of the various people attending to him.  When two young female aides left the room, one said, “Oh, he’s so cute!”

Mm.

His right hand suffered the worst physical damage — a wide, deep gash required stitches to hold his tissue-like skin together. Numerous other bumps and abrasions punctuated his upper body and knees, including a goose egg and black eye that bloomed later. As I gathered up his bloodied, muddied clothes he said, “S’OK, those will come clean.” Nuh unh, I thought. Not enough Oxy-Clean in the world to get that out.

Peter’s hands and face had been cleaned up by the time the ER doc returned to stitch his hand. “Oh, you’re quite handsome under all that dirt,” she said.

He grinned. “I’ll have to do it again then.”

Turns out, those few hours in the ER were the easiest of the next two weeks. He was understandably confused that Sunday evening, but the next day he awoke a different person. In the next few days he aged ten years.

From the start he remembered nothing about his fall, not that he would, and his few previous memories were erased too. He insisted all along that he didn’t hurt anywhere, though he must have, but his gait was stiff, and he shuffled as if he’d suddenly developed Parkinson’s. He struggled mightily to get out of his chair, even with a cane. He refused my help angrily, viciously, so unlike the man I married. He became argumentative and unreasonable in ways that he’s never been. He had no appetite, strange for him, and he slept soundly twelve or more hours a night. “I’ve nothing else to do,” he said. The Olympics’ coverage saved us.

Help dressing or undressing? “NO, I don’t need you.” Yet it took him twenty minutes to pull one sock off, and forty minutes, with my unwanted assistance, to get up the stairs to bed.

A physical therapist will assess him soon, there’ll be additional lab work to rule out other issues — the urine-analysis showed no UTI so the “hope” that spurred is gone. I may hire additional help, or may go to a nursing home solution. In the meantime, our sons-in-law have made the downstairs more accessible. Moving a bed down is a possibility.

Peter went from being a whisker shy of his eightieth birthday 18 days ago, to looking and acting as if he were ninety.

Still, not all news is bad news. Between the time of my previous post and now, he turned a corner. His dogged determination and bloody stubbornness, that usually makes me tear my hair, has instead helped him rally. He’s not back to where he was before, and never will be, but he’s so much better. But then, anything would be an improvement from the blood, rain and mud drenched man the ambulance crew hauled out of that ditch on February 11.

Header photo: In the ambulance, Peter regaled the EMTs with his patter . From the back, he looks unscathed.

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Be careful what you wish for.

Faithful readers will know that I’ve carried on for months about my husband’s constant abuse/misuse of his PAL Search & Locate GPS watch. Almost from the first day six months ago he figured out how to get it off.  He used brute strength to force the supposedly secure clasp to release.

“Ooo-o, you are strong,” I might’ve said, batting my eyes to make him laugh at my use of his old joke. But I didn’t say it, nor did I laugh.

I nagged endlessly, trying everything I could think of to get him to leave the darned thing on until I took it off. He wasn’t bothered by how much it cost nor that I’d had to order a new clasp. When I explained I just wanted to keep him safe, to have a way locate him if he got lost again, he tutted and argued that he was safe and he did not get lost.

By chance, the situation resolved itself. One evening, just after the holidays, I noticed that he had not only removed the GPS watch, he’d also removed the watch I’d given him for Christmas several years ago. Both were on the table beside his chair. I picked them up, put the high tech one in the charger on my desk, and lay the trusty Timex nearby.  Then I forgot about them.

The next morning when he was getting ready to take Nobby for his walk, I remembered. Without really thinking about it, I put the GPS one on his left wrist. He didn’t grumble at all, nor did he ask about his “real” watch. He wore his GPS “pal” all day, and in the evening he held his wrist up for me to remove the thing properly.

He’s done that ever since. He doesn’t remember his other watch, and doesn’t seem to mind wearing the chunky one.

A frustrating problem solved serendipitously.

You’d think I’d be happy or at least relieved, but I’m not. He’s forgotten what was such a  monumental grievance for both of us. Another step down the down staircase.

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To bed, perchance to sleep.

The visiting nurse has always asked the same questions of Peter. I have to answer for him and I nearly always say the same things: Yes, his health is good, yes, his appetite is fine, no, no joint aches, no incontinence, and definitely no trouble sleeping. The man lays himself down and is asleep instantly.

In the past year though, I’ve modified my answer to that question because he started having nightmares. Sometimes he yells, sometimes he talks, but the worst times are when he swings his arms as if punching someone, or kicks with with bruising force.

Of course that disturbs his sleep, although it doesn’t seem to affect him the next morning and he certainly doesn’t remember his nighttime carrying on. He goes right back to sleep; me, not so much.

We’ve always been territorial about our pillows. In fact, Peter is so possessive of his that I put an old, colored case underneath the fresh ones each week, so our pillows don’t get mixed up accidentally. There’s not much chance I would do that anyway. His pillows could be bags of cement; mine could be flattened geese, they’re that lifeless.

About a year ago Peter decided he didn’t need two pillows any more. Each night he placed one pillow on the floor on his side of the bed. He did that for months until I decided to take one when I went to bed to use as a bolster against my back and, not incidentally, as a foil for the frequent nightly soccer goals he scores when he kicks viciously in my direction.

That worked for months.

Then one night I was awakened from a sound sleep when Peter came to bed. Usually he’s very quiet, but that time he yanked away  the pillow I’d pilfered months before. I grumbled but drifted off again. In the morning, his reclaimed pillow was on the floor, smoothed and neat, on his side of the bed.

Yesterday morning I slept late for me — 7:15 — but I lay dozing for a few minutes when, suddenly, Peter sat up, threw his arms in the air, yelled, and fell on the floor with a crash. Had he scored a goal for Fulham in his sleep? I ran to his side of the bed, sure he’d broken a bone or gashed his head. No such drama except for his colorful language.

He climbed into bed and went to sleep at once. Later, he didn’t remember falling nor if he’d been playing football in his dreams. I hadn’t noticed the cut above his elbow earlier, but when he complained of blood running down his arm, I showed him proof of his fall. He insisted I’d shoved him out of bed.

Laugh? Might as well.

 

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Lights out.

Over the years since his dementia diagnosis, my husband has invented ways to control anything he can in his increasingly hazy life. I’ve written about his stacks of coins, never-ending twig collecting, his sweeping, folding, smoothing, polishing, wiping.

I. Want. To. Scream! And sometimes I do. Having said that, I’m sure he wants to scream too.

His latest attempt at control is not only baffling, it’s downright dangerous. I discovered it several weeks ago when I went down to the basement, a dungeon I try to avoid. Dark at mid-day, the windows are grimy and any light coming in is grayed.

I flipped the two switches several times. Nothing. I scrabbled around and finally discovered Peter had removed the bulbs from the six overhead fixtures. I don’t know why and I didn’t ask because I’m sure he wouldn’t have known either.

I put new LED bulbs in all the sockets. He took them out. I talked to him about the danger of going down the steps and walking around in the dark.

I put the bulbs in again. He took them out again.

Our basement is not a finished space. Hazards lurk — bicycles, tools, piles of newspapers and magazines, chairs, tables, workbenches. I thought I’d solved the problem with my little chat about dangers in the dark.

Today I realized I hadn’t. The bulbs were gone again. Why did I think he’d remember?

Laughs, I’m looking for laughs, but it’s dark in here. A bigger bulb maybe?

 

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Find Peter!

Nearly two months have passed since Peter took a five-hour walk away from home. That’s eight weeks of frustration for both of us, him because I had to follow along when he walked Nobby, and me because I had to follow along when he walked Nobby. I’d learned the hard way that I couldn’t let him go by himself any longer.

It was mid-July before I decided on and ordered Peter’s PAL (Protect and Locate) device sold under the umbrella of International Project Lifesaver.  Then, several more weeks passed and multiple shipping hiccups occurred before it arrived, just hours before we left for a ten day visit to Carolynn and Bill. Not that I had any warped ideas that I could set it up myself!

Leslie and Martin applied all their considerable technological know-how and stick-to-itiveness to get it working while we were gone. Even for them it was not easy — “You really could not have done it, Mom” Leslie said — but now, at last, Peter is “free” again.

Happily, and completely unexpectedly, he didn’t object to the clunky-looking “watch.” Yes, it is a digital watch, but more importantly, it’s a tracker too.

“With this,” I told him, “you’ll be be able to walk Nobby by yourself. Without it, you’ll be stuck with me going along every time.” With no hesitation he chose his new PAL over me tagging along. No doubt about where I am on the totem pole!

He had a lot of questions, but then he would. Tucked inside his blurring brain there is still DNA with “engineer” written on it. “How far can I walk?” was his first question.

“Not as far as you walked the last time you walked alone,” I said, my left eyebrow on high alert. His slight nod told me he remembers, if foggily, that he walked a long way the wrong way in hot sun. Rightly or wrongly, I continue to force him to remember what he’d like to forget.

His second question was, “Will it tell me when I’ve gone too far?”

The short answer was, No. Later, it occurred to me that I should have said, If you’d ever agreed to using a cell phone, then I could call you when the tracker shows you’ve gone too far, or you could call me for help. But that would’ve been thirty-eight wasted words.

Each time he repeated his two questions, I reminded, “All you have to do is walk. I have to be ‘tuned in’ for a possible alert, check my phone for texts, the computer for a map, and be ready to  jump in the car to pick you up.”

He shook his head. “How does ‘it’ know?”

“Smoke and mirrors and a satellite in the sky,” I said.

He shook his head again. So many technological advances have taken place since the last time he was curious enough show interest.

It took all Leslie’s considerable teaching skills to pound the multiple steps into my head. She already knew I had little capacity to absorb any more high-tech stuff. I wouldn’t be surprised if she had a lesson plan labeled, “Teaching Mom.”

Nobby is little miffed.

Header: Nobby anxiously watches for his master.

 

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Cork, blown!

Individually, the silly, almost daily things we blame on the dog — Nobby did it — aren’t really worth mention: a china tea cup in the butter compartment; tiny potatoes tied up in a green newspaper bag and tucked in with the bread; Peter’s three nights in a row sleeping on the couch because he forgot to come to bed; him not only mowing the grass two days in a row, but three times in one day. All quickly forgotten by him, but I’m buried in what feels like wet sand.

Most Alzheimer’s caregivers know that “going with the flow” is often the best way to handle such things. But sooner or later, even the most patient of them — us — will blow a cork, a lid, a fuse, a gasket.

I am not a patient caregiver.

I’d sorted the edges of the 252-piece puzzle Carolynn brought to me, and put about half the frame together on the kitchen counter. The rest, I’d organized by colors on paper plates. Peter enjoys jigsaws and he’d placed several pieces while waiting for dinner one evening.

Next morning, I came downstairs, turned the coffeemaker on, filled Nobby’s bowls, sorted our daily rations of pills, then noticed — WHAT? — the puzzle had been cleared away, all the pieces were back in the box. The paper plates were stacked neatly, empty.

My lid hit the ceiling. I needed a new fuse. My gasket wanted replacing.

In the previous several weeks I’d warned, if he didn’t stop moving my “stuff,” I would wreck his towers of coins, even knowing that his need to organize helped him control his out-of-control brain. So that morning, sputtering like a kettle on the boil, I stomped down to his desk, took a deep breath, and raked my hands through his stacks of quarters.

I was furious, childish beyond reason. How absolutely infantile of me! If Peter noticed at all, he never said, and I’m sure he was quite content to re-stack the coins and make order out of the chaos I’d caused. That evening, I sorted puzzle pieces once more and started putting it together again. To be safe, I wrote “LEAVE THIS ALONE” on a paper plate.Thursday,  we browsed through a local thrift shop. From a table laden with jigsaw puzzles, Peter picked up a brilliantly colored 1500-piece one that would measure 33″ x 24″ when assembled. He debated buying it — too intricate, he wondered? In the end, he paid the 53 cents and brought it home. In the days since he has done little else but sort. By last evening, he had more than half of the outside in place, the rest of the edge pieces set aside, waiting.

Will I box the pieces up and put them away like he did to me? No.

Will I try to work the puzzle with him like we used to do? No. Togetherness is more than he can handle.

Will I slot a few pieces in when he’s not around? Darn right, I will.

Pretty French scene reminds me of our trip to Nice 12 years ago. Peter doesn’t remember, but I do.

 

Header: Kim McFarland painting of perplexed Westie with a ladybug on his nose.

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Sort and organize, part two.

Several days ago I posted a list of ideas that could help dementia patients feel as if they had some control in their lives. In the post, I used Peter’s adaptations as examples.

Today, I have a new item to add. This one aimed at those for whom reorganizing the silverware drawer or separating buttons by color aren’t challenging enough.

  • Wrangle grocery carts into types—large, small, ‘kiddy cars’—in the cart corral at the grocery store!

After our shopping trip the other day, Peter unloaded our groceries into the back of the car, then walked off to return the cart. I started the engine, adjusted the mirrors, lowered the radio’s volume, checked my hair, and waited and waited and waited. Where was he?  The cart corral was only three spaces away.

I reversed slowly out of my slot and, whoa, there he was, sorting carts and fitting them together as if they were the high school band waiting to parade.

I tapped the horn. He looked up and waved to let me know he knew I was waiting. Really, the only thing I could do was laugh.

This is Peter’s idea of Organization. Photo, Eroha trollies, 26/6/11

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Header photo: Kroger’s on a Sunday morning