Former PCA Coming Back

Back a few months ago the PCA we had coming in was driving us insane. She seemed to be everywhere she didn’t need to be. Well she’s coming back and I was the one that requested her. Go ahead, you can laugh!

Her name is Brenda, she is this petite thing who runs around here like a tornado. She helps mom with her shower, cleans up in the bathroom afterward, makes her breakfast, changes her bed, etc… She doesn’t stop working until everything is done. She also comes at the same time every Mon, Wed, & Fri. Even during the winter when we had tons of snow.

Brenda left when she was offered a client with more hours. Being a single mother, she took it. I was not upset and thought another girl would be fine. NOT

The new one came in and I showed her where everything was. The bathroom closet where all the towels, soap, sheets are kept. I showed her where we keep mom’s oatmeal, the bread, her coffee, and told her anything that is out here mom can eat. If mom wants it, give it to her. Ice cream for breakfast. Yup, if that’s what she wants.

Well, that didn’t work out so well. She was still coming every Mon,Wed, & Fri, but she kept changing her times. One day it was 9:15, one 9:30, and on Weds she can’t come until 9:45. It was really messing my mother up. Time is very confusing to her now, as it is. To have this girl coming at all different times was causing a lot of stress. I explained this to the nurse, I explained it to the coordinator, I explained it to the girl who called last week to tell me the time was going to change another day this week also. To no avail.

Monday was the last straw. I was in my office working so I don’t think she knew I was here. Other then the big yellow bus parked in the driveway. She got here at 9:45, had my mother in the shower, done, dressed, back sitting in chair, coffee, and bed done by 10:15. She then sat and watched tv for the second half hour.

After she left I came out to check on mom. She was totally disgusted. After a walk around the house so was I. The dripping plastic shower curtain was not only hanging on the outside of the tub, it was sitting on the hot baseboard heat. The shower was left on the hand-held setting, pointing out over the shower curtain rod. Two different mornings I have gone in at 4:00 am and thoroughly soaked my bathroom because she won’t shut it off. The kitchen cabinet doors were left open where either the cats could have had themselves a field day or mom could have walked out there and smacked her head. (mom walks bent over and looking down, she only picks her head up if she needs to do something. She wouldn’t have seen the doors open until she picked her head up) Last week she left powder all over the bathroom floor. My husband said it was like a skating rink. He went in and cleaned it up before my mother fell.

I was on the phone with mom’s case worker at Elder Services right away. I told her get another girl here or another agency. I told her Brenda the original girl was free and my mother was more comfortable with her. I was requesting her back, if not I want another agency found. I was given the blah blah blah about no one comes to Barre and I told her fine. If you do not find someone I will and there will be no more money going to Elder Services.

Yesterday she called me back to say Brenda would be starting Monday morning. She will be coming Mon, Wed, and Fri at 8:30. PERFECT!

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Of Course I’m Not Superman

I am posting this with the permission of the author whom I only know as Grumpydawg or Dale.  He is the husband and caregiver for Linda, who suffers from Alzheimer’s Disease.

Of Course I’m Not Superman

But if I was,
I would work hard to change the fate
Of those stuck with this terrible disease
But I am just me..

A human being
One small contributor to one person
Trying to get by this day
Not letting myself worry too much about tomorrow

I can sense
when we have a good day here
When Linda is happy and confident
And no new challenges appear

Mostly though I just go with the flow
Try not to get too much emotion
showing to her
just show confidence and patience and smile

My time for self doubt
must come more when she is sleeping
and I can sit and analyze the day’s events
what did I get done, what did I overlook?

I trained before in football
and in business
so I try to train for this life
Train for what comes with it

Not always knowing what that will be
By coming here and professing my shortcomings
To my peers, I can come off the island
For a few precious hours each day

I can read with appreciation
the many facets of this disease ,
the toll it takes on all of us
the loneliness it brings.

I don’t wish it on a living soul
For it is quite a tough challenge
But we don’t pick our fate in life
but rather fate chooses us

There are many other sicknesses
that bring great suffering
to the human mind and body
So to those caregivers, we all say in unison we are sorry.

I read with interest the suggestions
I am learning from all of you
I am also learning on the job
May God help us all as we live this life challenge.

We must pray for the strength
and the courage to end each day strong
and to know that we did the best we can
To help and love them in their long journey

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The Future

I spend a good deal of time each day thinking about the future. Especially now that my mother has Alzheimer’s Disease.  As much as I didn’t want to know I guess there really wasn’t a choice but to know that there is a good possibility  I am genetically predisposed.  The more you research a subject the more you learn.  Isn’t that amazing? It becomes impossible to filter out what you want to know, versus what you don’t want to know. It’s just all there in black and white.

It is a scary thought that I could forget my life, my husband, my kids, and my friends. It is also beyond my comprehension that I could forget how to dress myself, talk, walk, eat….

I try not to dwell on this because I would drive myself insane now.  It does however cross my mind when I have to think quickly about something I KNOW. When the information I’m trying to retrieve is stored in my brain and I can’t get to it.  Simple things like street names and directions. That is a big part of my life. Something I can honestly say I am good at, and I very rarely say I am good at anything. When I can’t remember the name of a street I traveled four times a day for ten months it stops me in my tracks. Is this a precursor of things to come or is it simply a duh moment?  For now I choose to go with the latter.  It’s much easier to live with.

The future holds no promises for any of us. We must learn from the past and live in the present.  After all “Life’s A Journey Not A Destination”

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Teenagers

Some days, when I am on standby, I sit out back of the high school and watch the kids. It’s dismissal time, I am in my bus, and I have an elevated vantage point.

Teenagers do some of the silliest things. They jump on the hoods of their cars, they run all over the parking lot chasing each other.  They dance, they sing, they some times stand up to each other. They sit behind the wheel revving their engines and wasting gas. Worst of all; they blow their horns and hoot and holler as they leave.

Often I watch the administration and their reaction. They talk to the kids, point their fingers, wave, and give parental type warnings. I have seen them book it across the parking lot of real trouble starts, but mostly they stand watch.

Except this one person who is not admin, but holds some title.  The kids don’t wave or joke around with him. They don’t even notice he is there. Shaking his head in total disgust that these teenagers should act so devil-may-care, he struts around like a prancing peacock, important in his own mind. The poor sap is missing out on so much by not allowing himself to be caught up in the students unjaded outlook on life.

As the years have passed I have become more bitter, frustrated, and depressed with this world.  We are a mess. However; I hope the day never arrives when I look at a kid laughing and goofing off and think it’s a waste.

It is so much more the opposite.

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Sleep or Lack There Of

Sitting here at 4:37 a.m. all dressed and ready for work all I can think about is sleep. I want sleep! I need sleep! I can’t get enough sleep!  Oh So Sorry No Sleep Today.

There is something doing the Rumba in my intestinal tract. It’s cause I believe, the antibiotics I am on for the sinus infection I came down with last week, which made my throat become inflamed, leading me to not be able to swallow or talk. All spurred along, in part, by a lack of sleep.  I was down for the count for almost two days straight. Did it help? I thought so until now.

Now, it feels like sleep is the gold ring I keep reaching for but is but a mere fingertip away. The light at the end of the tunnel, ironically, or the grand prize in the lottery. That’s it! I need to win the sleep lottery!

I believe I have entered the phase in my life comparable to teenage years when extra sleep is needed.  I have passed through the young adult stage of all-nighters and have not yet entered senior-hood, where naps during the day make up for the insomnia at night.  I need sleep to function and there’s not enough hours to fill my quota.

Eight hours of sleep; is it real? I have heard talk of its existence. Somewhere on the other side of working for a living, a mom with Alzheimer’s,  a husband with the tv and light on all night, and a big furry Moose,

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There is a land where sleep awaits.

I will persevere.

I must continue to chase the dream.

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Carl Stevens’ Journal: A Poem For Victims, Survivors, First Responders « CBS Boston

Carl Stevens’ Journal: A Poem For Victims, Survivors, First Responders « CBS Boston.

Hate owned a minute

but we ran for hours

because this shining town is ours.

The hurt was sudden.

The day was long.

But we are Boston.

Boston strong.

We sank in shadows

But a light stayed on

Because the light of life

Is a marathon.

One foot, then the other,

Through the course of our life

We cheer on our children

Our husband

Our wife

A strand of relationship

Winds down the street

United by heart

And soul

And feet.

A will to keep going

The strength to succeed

To plant in the present

Tomorrow’s bright seed.

We’ve run longer

Than anyone else in the nation

The baton has been passed

Through generations

And we won’t stop running

Because of some fear

We know our place

And out place

Is right here.

The race is won

By those who run

Who have the strength

To answer each day’s starting gun.

And next year, in April

In Hopkinton

We’ll gather together

And together we’ll run.

We’ll run through the heat

We’ll run through the rain

We’ll run through the cramps

And we’ll run through the pain.

And we’ll remember together

What happened that day

When a cloud of destruction

Made the sun go away.

We’ll run past madness

Terror and hate

Some of us limping

But all of us great.

It’s a race of freedom

That we’ve always run here

From Frederick Douglass

To Paul Revere.

And we’ll finish triumphant

In a town without fear

Because we know our place

And our place

Is right here.

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Just Another Monday (again)

It’s here, another Monday morning. The beginning of another work week. Wish I could feel happy about returning, but it’s just not there.

Though the healing from last week has begun, the return to my every day routine seems wrong.  Maybe wrong is not the word I am looking for.  It seems inconsequential.  I had to look that up before I used it.  Life is so short and I feel lucky to be here. I want to celebrate, see things, travel, enjoy life with my best friend/husband.  Yet my bus is parked in my driveway and in about forty-five minutes will be fired up to go about its meaningless day.  Make that now, because I am so flippin reliable I just called my boss to see if I should run to the office and pick up stray paychecks and hand them out this morning.  Why must I worry about everyone else? If their paychecks were so important why didn’t they drive to pick them up Friday like the rest of us?

 I can’t answer either question and I can’t change who I am, so it seems.

I could spend the day pondering what exciting things I should do with the rest of my life. Making myself completely miserable knowing the reality is I have my mother to take care of, a husband who is not working outside the house, and a job that almost pays our bills. This is about exciting as it is going to get.

It is what it is and I better learn to enjoy what life I have or it too will pass me by.  It could be much worse.

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