The Birdfeeder

 Friday, April 14, 2023

I Cried A Little This Morning

 I have not been honest with Sadness.  Pretending she does not exist. Paying her no mind.

It's been a painstakingly long, brick by brick process to build a wall that she cannot penetrate.

Oh, I've had conflicts with Frustration and Anger.  Big battles in which they were the victor.  I would come away bruised and weary, guilty tears of regret readily flowing.   

I foolishly believed those bouts with Frustration and Anger gave me the strength to complete a wall that Sadness could not invade. 

Undaunted, Sadness whispers to me.  She says things like "You know the illness, it's what we call The Long Goodbye.  Surely that must make you sad, doesn't it?" 

With Anger egging me on, I defiantly reply, "He's still here! I take care of him,  I touch him, I kiss him good night. I am not sad.  We have not said good-bye!"

Sadness is relentless.  She follows me on my walks.  "Remember how you and he walked this same path, together?  Isn't it sad that he's not here with you today?"  

I quicken my step to try to out pace her and turn up my music to drown out her taunts. 

The other day, uninvited of course, Sadness came with me to browse around my sweetheart's and my local favorite garden center.   It was a springtime ritual.  He would look at the vegetable and herb plants.  My interest was the flower plants. 

That day, I impulsively purchased a $75 bird feeder.  Guaranteed to keep the squirrels at bay.  

"What would he have had to say about that?"  Sadness asked.  I thought about that for a minute or two as I carried my purchase to the car. 

Today I hung the feeder at the edge of our patio.  The spot is perfect.  I can see it from our kitchen window and also from our bedroom window where my sweetheart lies in his hospital bed. 

A few little finches immediately found their way and began pecking at the seed.  I watched from the bedroom window as empty seed pods floated onto the newly spring-green grass.

As I excitedly turned to tell Ross that the birds had already found the feeder,  I caught a flash of bright red  out of the corner of my eye.  

A cardinal was on the feeder, his mate waiting patiently on the ground for her turn. 

"Sweetheart,"  I said,  Mr. and Mrs.  Cardinal are here."

  I imagined his smile, and knew what he would have said.  

"See I told you buying that feeder would bring you joy.  Anything for my sweetheart, you know that."

It's okay, Sadness lovingly whispered,  it's ok. 

And I cried. 

 

 The Two Beds

The Two Beds

Tuesday, February 7, 2023

 

It’s early, 5:31 a.m. to be exact and still very dark. Shadows of light streaming in from night-lights streak the walls. 

Lying in the middle of the Big Bed, I’m tired but wide awake. 

Ross is peacefully sleeping in the bed next to me. It's a narrow bed with cold chrome metal rails. I can hear his quiet breathing, in and out, in and out. 

I am thinking of the last time we were together in the Big Bed.  It too was early morning, a few weeks ago. twenty-six days to be exact.   

I was snuggled up to him, my arms across his thin bony chest.  

I painfully recall that I was softly crying, murmuring  a lot of “I’m sorries”. 

“I’m sorry I got angry,” I whispered.  

“It’s just that I’m tired, so tired.”  

"I'm so sorry." 

All that week Ross had been particularly restless during the day but even more so at night. 

That night I woke in the middle of the night to find him wandering around the bedroom, pointing and gesturing, lecturing to his long-ago students.

“Ross,” I grumpily and harshly said, “come back to bed!" 

After several more futile attempts to urge him back into the bed, raising my voice louder each time, I impatiently got out of bed, took his arm and and tried to lead him towards the bed. 

He shook my hand away, mumbling something about his students. 

Frustrated, I sat on the edge of the bed, not knowing what to do. 

An hour later, now 5:30 a.m., I could see he was slowing down. 

I stood up and once again took his arm. This time he let me lead him towards the bed. I helped him in and he immediately fell asleep. 

Little did I know, as I held onto him, whispering my apologies, that it would be the last time we would be together in the Big Bed. 

Later that morning, as I tried to get Ross dressed, he was unable to stand and could not lift himself out of the wheelchair. 

I had to call 911. 

He spent 4 days in the hospital with no improvement. 

During those 4 days I made arrangements to have a hospital bed brought into the house and put next to the Big Bed.   

He is now bedridden, confined to the narrow bed with the cold chrome metal rails. 

Each evening, 9:15 to be exact, I stand by the narrow bed. I lean over and stroke his silver hair.

“I’m going to get my PJ’s on now,” I say." 

"Then I’m going to go to sleep right next to you, okay?”

I lean over the chrome barriers to kiss his forehead. 

“I love you. You are my favorite.  You’re my sweetheart.” 

Although he doesn’t respond, I know he understands. 

As I hold tightly onto those icy barriers, with not even the heat from the palms of my hands warming them, I yearn to crawl in next to him one more time. 

 

 

 

 

 

 

 

 

 

 

This Is NOT Us

 I've been watching the TV series "This Is Us" from the time it began.  I feel it is one of the best network shows.  I like the writing style of going from past to present then giving us glimpses of the future which keep us guessing.  

When it was revealed that Rebecca, the mother in the series, would become ill with Alzheimer's, I became hesitant about continuing to watch.  

Ross usually watches the show with me.  I wondered if he understood what was happening with Rebecca. I think he kind of half watches and we don't discuss the goings-on of the show so I'm not sure. 

The episodes airing now are the last of the series.  The Pearsons are saying goodbye.

It's the past two episodes that have had me bothered, just a little.

Going back to my being hesitant about continuing to watch, I was concerned that the episodes depicting Rebecca's decline would be too realistic for me to sit through.  I basically get through my days of caregiving by taking it one day at a time.   I don't think I could manage otherwise.

At this point in the Lynda and Ross story of Alzheimer's, Ross requires 24/7 care.  By that I mean his memory loss affects his cognitive and decision making abilities.  For instance he may try to make sure all of the gas burners are off, but instead turn them on and then leave the room. Yes, he has done that. 

He gets anxious when he doesn't recognize where he is and he doesn't remember that where we live is his home.  Overall he is usually restless.  Sometimes he will spend hours going from room to room, trying to find something familiar. 

Here's where I find the caregiving of Rebecca Pearson unrelatable to my experience of caregiving for Ross.

The Pearson's can apparently easily and comfortably afford to hire 24/7 caregiving for their mother. Her son built an estate on idyllic acreages where Kate and mom can take leisurely walks through the woods listening to the birds.   

Ross likes to take walks with me.  We may walk a couple of blocks and when we get tired we turn around and head back home.  Our walks are usually pleasant. But sometimes when we get to our house, Ross may refuse to go in because "I will not just walk into someone else's home." 

Ross and I cannot afford 24/7 help.  So it's just me.

In these United States of America, Medicare insurance does not cover the cost of help with in-home care nor does it cover the cost of care in a residential care facility.  The average cost of that type of care here in New Jersey amounts to between $8000-$12000 a month.  Most of those facilities are short staffed and residents may not be getting the "Pearson" treatment. 

I know it's just a TV show and the Pearsons are not real.   I literally mean that the Pearsons story of caring for someone with Alzheimer's is not realistic.   Oh, I'm sure there are a percentage of families where they can afford the type of care Rebecca Pearson received, but I wonder if that is not the majority of us. 

Yesterday, Ross and I had a quietly peaceful day.  We spent the day watching "The Gilded Age", (another fantasy series about the ultra wealthy) me in my PJ's on the sofa knitting, Ross dozing in his easy chair.  I feel grateful for those days.   They don't happen often.   

But unlike the Pearsons, "The Ross and Lynda" story is not yet over.  

Watch this space.