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. 

The Two Lynda's

 April 23, 2022

It's a Saturday.

Today begins the start of the annual New Jersey Wool Walk.  

According to the NJWW website:

What is the NJWW?
During this yearly event, participating yarn stores offer special events, discounts, designer appearances, book signings, and trunk shows. 

This year's event starts today and goes until May, 1.  

I believe this is the first in-person event since the pandemic.

In past years I would have been out the door already with Ross, a list of yarn shops and a map in tow. 

Although I am tempted, this year I'm not motivated.  Perhaps that's because instead of being the leisurely passenger and navigator I will be the driver/navigator.

 

Besides I am comfortably ensconced in my cozy knitting knook at the moment.

I am also on a strict yarn diet.  Although, I could use a skein of Mohair for that future project which has yet to be decided. 

I am feeling kind of down today and a little lethargic Maybe I need to go to a yarn store or two.  I'm thinking that yarn sensory therapy just might be the ticket.   

April 24, 2022

It's a Sunday

Well, we didn't go to the woolwalk.  

One of the learning experiences I have had over these past two years is that Ross is much better when we are out and about.

Thinking about how yesterday turned out, we most definitely should have gone.    

I asked Ross several times during the morning if he was interested in visiting our favorite yarn store.  He shook his head.  "No," he said.  "I just don't feel like it."

As I continued about my day, going through the house doing laundry, straightening, thinking about what to prepare for lunch, I suddenly noticed it had been a few minutes since I had seen Ross. 

When we are in the house, Ross is usually not out of my site for more than a few minutes.  

As I started to look in each room calling his name, I noticed the front door was ajar.  I stepped out and looked up and down the street but didn't see him.  

At this point in our Alzheimer's journey Ross doesn't recognize where he lives.   Even though the houses in our development are uniform, they are different, but in Ross' world he cannot disquinish which house is his.  

Although this isn't the first time this has happened,  his behavior is usually an indication that he might want to "wander".  This time I had no warning. 

I must say, the first couple of times Ross has wandered off, I panicked.  I had that stomach drop feeling, like when you lose your child in the mall.  

But yesterday I was rather calm. I guess that's because I knew I would find him safe and sound. 

 I got my car keys with the intention of driving around to look for him.  I knew he couldn't have gone too far.  When I got outside, I again looked down the street and I spotted them, two blocks away.   It was Ross with one of our neighbors.  They were arm in arm and she was walking him towards our house. 

As I said this isn't the first time.  But my feelings were different this time.  

The first few times he wandered I got angry at Ross.  

"Why did you do that?" I would say in my upset parent voice.  And then I would lecture about the dangers of him being out alone. 

But, that was inexperienced caregiver anger.  That was the lack of understanding anger.  

Yesterday, I still felt angry, but my anger is directed at this horrible disease.  

I feel frustrated because I don't know how to stop Ross from wandering.  I fact, 20 minutes later, he did the exact same thing.  I found him standing in front of that same neighbor's house.  Interestingly enough, her name is Linda. My neighbor Linda and I look nothing alike. 

So instead of going to the NJWW we wound up going to the German Butcher shop.  Ross loves to go there.  I'd like to say that the rest of the day was swell, but it wasn't.   

We have nice moments during each day.  Some days those moments add up to hours.  Some days the not so nice moments seem like hours.

 Perhaps today we will go to the New Jersey Wool Walk.  I could really use that sensory yarn therapy.