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. 

Listen Up Kids…Get That Spare Room Ready!

 Tuesday, June 4, 2013

We are up early.

Today is going to be an unusual day.

Even though I didn’t personally know Susan and Alfred very well, I do know that they were elderly parents being cared for by their daughters.

For the past 10 years Susan lived with Patty and Ray.

Also during the last several years, Marie and Dave, in the home where Marie spent her childhood, cared for Alfred. 

Susan passed away on Thursday May 30.  She was 95 years old.  Patty is my brother’s companion.  They have been together for about 20 years. 

I have memories of Susan and my mother on the several holiday occasions that we spent together.  They were contemporaries.  I remember Susan talking about being a seamstress so many years ago.  

We saw Susan for the last time about a month before she died.  It was quite apparent that she was suffering from advanced dementia. As we were having our dessert, Susan adamantly reminded us that we should be careful because not everyone is trustworthy.  She also serenaded us with a rendition of  “Pasta Va Zool”.  You had to be there.  It was quite charming and very cute.

Alfred is my daughter-in-law Anne’s grandfather and great-grandfather to my grandson Domani.

Alfred passed away on Friday, May 31.  He was 91 years old.  Although I had few personal interactions with Alfred,  through Anne, I learned that he was a WWII soldier, a Normandy Beach survivor and he was an active member of his community.  (Anne talks about her grandfather in a touching post that she wrote here.)

At 10:00 this morning, we attended Susan’s funeral.  Afterwards, Ross and I went to the funeral home to extend our condolences to Alfred’s family.

While it is true that Susan and Alfred lived a very long life, of course there will be a void left behind by their deaths. 

The lives of Marie and Patty, the devoted, loving caregivers for their each of their parents, will be dramatically different now.

I cared for my mother for only a short few months.  At the time, it was the most physically and emotionally draining experience of my life.  It is on that level that I relate to Marie and Patty.  

Whenever I was in the company of Marie and Patty, I observed the special attention that each one gave to their parent.   It was apparent that these daughters were caring for childlike adults as the role of parent/child reversed. 

When I saw Patty and Marie today, I recognized the effects of their care giving.  Signs of sheer exhaustion were obvious as was the sadness in their eyes. 

While it is not always possible for one to be the primary caregiver for an elderly or ill family member, I have to say that I feel it is the best care that will be given.  In fact, I do believe that those who are cared for at home will have a longer and better quality of life. 

After attending both of these tributes today, I can’t help but wonder what my elder years will be like.  Who will care for me?  Where will I wind up?

All I can say is, “Listen up kids, get that spare room ready."