Thursday, May 12, 2022

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. 

Sunday, April 24, 2022

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. 


Monday, April 4, 2022

Because That's Who Joe Was

 April 4, 2022

It's a Monday

Today would have been my son Joe's 47th birthday.  It's been 10 years since he passed away. 

I started this blog ten years ago to write what I had a hard time saying out loud. 

"They" say grief is a process one goes through after a loss.  

"You may not believe it now, "they" said, but eventually you will be able to think of Joe without the ache."  

"Oh yes, you will be able to remember the happy times you had with Joe and you will find yourself smiling", "they" said.  

I hold so tightly onto the "loss ache", though.  Perhaps my long ago memories are too faded now. 

But, as I sit here quietly today, close my eyes and reflect on that 47 years ago day, I surprisingly find that I can easily bring forth the hidden memories that "loss ache" tries to overshadow. 

It was an easy birth, of course it would be because that's who Joe was.  

When he was placed in my arms, he wasn't wriggly, but lay there quietly looking up at me as if he were trying to figure out where he was and who I was.   Yep, that was Joe.  Quiet and  introspective.   

I remember the day as a  happy and joyous one, yet peaceful at the same time.   A day spent studying each other, checking each other out.   I like to think that Joe, after careful consideration, cause that's who Joe was, made a decision to keep me as his mom.   😍

And so for a little bit of time today I found myself smiling.  Because that's who Joe was.  

Friday, March 18, 2022

"It Made Me Sad," He Said.

 Friday, March 18, 2022

Well, we've made it thru most of the winter.  Cases of Covid-19 have dropped dramatically.  Fingers crossed that we are all headed back to healthy.

March weather here in the south of New Jersey has Winter baring its teeth with stubborn tenacity while Spring hints at its arrival by sprinkling in warmer temperatures now and then. 

Ross' condition has not changed much since I wrote about it in January.  

A neighbor whose husband has dementia participates in a program three days a week. She says he loves it and recommended that we check it out.  

So, last week Ross and I visited The Regency Memory Care Club to explore and find out more information.

The first thing I noticed was that the place was secure.  We had to be buzzed in.  That was reassuring.  

Once inside we were greeted by two women who spoke to us in loud voices.  

"HELLO, ROSS.  MY, YOU ARE HANDSOME", the taller one said.  

Before either of us had a chance to respond, the taller woman hooked her arm thru Ross' and led him towards a room filled with round tables where people were sitting and eating cake.


My sensitive introvert brain was preoccupied with the noise and bustling activity.  And "wait,  where was that woman taking Ross?"  

It took me a moment to realize that the other woman was "shouting" at me to follow her. 

She led me thru a maze of rooms. Each of of the doors of these rooms had security locks. She had to punch a code in order to enter. 

As we were walking she was pointing and talking.  "That's the dining room.  Over here is the salon. There's where we do our activities, here's the kitchen..."

At least I think that's what she was saying.  My mind was still back at the front of the building, wondering "wait, where were they taking Ross?"

We finally made our way into what appeared to be a conference room.  Once we sat down, she began to go through her "presentation" which she had obviously given hundreds of times. 

I have to admit, I listened with half an ear, because I was thinking about how Ross was doing celebrating Rose's 99th birthday. 

After she was done explaining everything to me, we made our way back thru the maze of rooms.

There was a group of people singing in one of the rooms we passed by.  A woman leading the group was, I assumed, one of the activities directors.  She sang very loudly. 

Once we got back to the front of the building, I spotted Ross sitting at a small round table with two other people.   Off to the side, in a section of the room where Ross was sitting, was another group of loudly singing people.  

After we said our good-byes, our tour guide walked us back to the exit. As we went out the door, she waved and shouted, "HOPE TO SEE YOU SOON,ROSS!

When we got outside, and began walking towards our car, I noticed with a sigh of relief, the quiet. 

Once we were settled in the car, I asked Ross how he felt about his experience.  

"It made me sad," he said.

Thursday, January 13, 2022

Come Visit - It's Been Awhile

 January 13, 2022

Well the Bug keeps raging on.  Now it's the omicron variant of the Covid19 virus that is spreading like wildfire. 

Ross and I have had all three shots.  I try to remember to make sure we wear our masks, which I have now switched to the KN95 version of, when we go into a store. 

I try not to go in to many places and have been avoiding eating out.

I woke up this morning thinking how nice it would be to go out for breakfast.  I am getting tired of preparing 3 meals a day.

I try to avoid the news channels because I am tired of all of it.  The so called "breaking news" should be renamed to be "breaking bad news". 

So instead I spent 40+ hours binge watching "Yellowstone".   Was it better than watching "breaking bad news"?  I don't know. 

As time goes on my current care-giving situation is more challenging.

A couple of months ago I tried a caregiving service.  It is expensive.   Three times a week - 3  hours each  day.  The services provided included  help with whatever physical needs Ross had, such as dressing, showering, bathroom, etc.  In addition the person would prepare meals, do Ross' laundry, food shop.  The person would stay with Ross if I had to go out.  "It would give you a break, " They said.   I was very hopeful. 

But it didn't work out for several reasons.  First of all the caregiver was a woman. (I'll call her Tess) It was immediately obvious that Ross was uncomfortable having a woman help with his physical needs. 

Although Tess was a nice person, her personality wasn't compatible with Ross'.   She was quite chatty.  After the first day, I knew her whole life history and we would get a running commentary on her daily life each day.   I think Ross was bored with her.  LOL

Her way of occupying Ross' time was to put the TV on, old movies and TV shows and then sit herself down to play games on her phone,   Needless to say, not very interesting for Ross.   

The biggest problem, though, was Ross was wary of her.  I'm sure the Alzheimers' paranoia contributed to this. 

As a trial, after she had been with us about a week, I had gone out a couple of times   Each time I was gone maybe an hour, which seemed tolerable for Ross.

After about the fourth week, I attempted a longer time away.  I think I was gone for maybe 90 minutes when the caregiver (I'll call her Tess) called me to say that  Ross was very anxious and that he kept asking where I was and when I would be back.  She assured me, though, that I was not to worry and to take my time. I immediately left my shopping cart filled with items, left the store, got into my car and headed home.

I won't go into details, but Tess was unable to handle Ross' anxiety.   

Of course after that incident I cancelled the service.  I received a phone call from the owner of the agency.  and I explained why I was not happy with the service.  To tell you the truth, at this point, after my experience of hiring a caregiver, I realized that having someone in the house with us had caused me and Ross more stress.  

Perhaps as time goes on, I might have to try again.  

As a caregiver I will offer a bit of insight into my needs.  If you want to offer support, and have not been in my position, your advice will probably cause me more stress than appreciation.  What would be appreciated by me is for you to listen.  That's all,  just listen.  

Phone calls and video chats are always welcome, for me and for Ross.   Invite us to lunch or drop by. 

Ross may not be able to communicate as well, the words just don't come very easily, but he still loves social intercourse.  

In a previous post A Caregiver's Dance I wrote "Regarding my caregiver situation, many of the comments I receive from friends, family, and internet buddies are some variation of this one, "I don't know how you do it".  

My answer, said with a wry smile, is usually some form of this one, "I don't think about it, I just do. " 

Now, as I catch myself watching Ross, perhaps trying to memorize him, I realize the answer to the question of "how I do it?" is simple.  I love and am in love with him.