Friday, January 19, 2024

LIKE A THIEF IN THE NIGHT


 Alzheimer's disease is like a thief in the night that robs a person of their mind bit by bit until they no longer remember the things and the loved ones that once mattered to them. 

This thief of a disease runs in my family It claimed my two aunts as well as two of my uncles. I often wonder if my father would have been a victim of it had he lived longer. I wonder if I will. I have been tested. I do not have it. Although, in my opinion, I have symptoms. I cannot remember things. I get confused. I forget where I am supposed to go,  I guess I should add the word sometimes to all of my "symptoms."

I blame everything on stress. What if it's not? I begin to worry in the evening who the overnight staff is going to be. A group home is not like a nursing home where I could ask who was coming on shift. In a group home. As long as someone shows up,and my needs are met, why do I have to know ahead of time?

What if my call button is not working? Knowing the staff member's name makes me feel better. To be fair there are times when the evening staff does not know who is working the overnight shift. I try not to ask anymore. When I kept asking, people would sometimes say I was acting like someone with sundowners. I can't explain it but my fears  and anxieties seem to be worse at night

Sundowners is one of the. symptoms of Alzheimer's My mom would sleep all day. She'd wake up at four o'clock in the afternoon and want breakfast. The caregiver and I would do our best to convince her that it was almost time for dinner. Often times we were successful. However, many times we were not. 

When I was a resident in the nursing home one of the other residents with sundowners cornered me so I was unable to pass her, kicked me. and yelled at me. This went on for several minutes with me trying to pass her. I finally had to call for help. She had me trapped. She was not going to let me pass her.

I worry about not being able to talk at all. It is getting more difficult for me to speak loudly and clearly. When I do my chest hurts. I sometimes have to push to get my words out. People tell me I talk too much. People are always asking me to repeat myself. What if the day comes when I am not able to talk at all?  This is by far my number one concern as I get older.'

My hearing is not what it was. Neither is my vision. I hope to put off having cataract surgery for another year. I am scared to death to have it. Come on you already knew I was a wimp. I just confirmed it for you. I guess my question is how routine of a surgery is it for someone with spastic CP? All of my questions will be answered in March.

I make a mess when I eat. (That's it. That's why no one ever asked me out. Came close though. What? A lady never tells.) 

I don't drive my power chair as well as I used to. The truth is I never drove it very well. (I heard you agreeing as I typed that sentence.) I remember going for walks all over the place by myself. I miss those days. I miss the person that I used to be.

I began this post by saying that Alzheimer's robs a  person of their mind. That's true. Aging in general is a thief. We can't stop it. We have no other choice but to accept it.

People lose patience with you as you get older.

Bette Davis was right when she said, "Growing old ain"t for s sissies."  Permit me a little poetic license. "Growing old with a disability ain't for sissies."

Disabled peeps, can I get an amen?


  

















Monday, January 15, 2024

PEACE


Love
Acceptance
Inclusion
Equality
Education
Understanding
Diversity
Justice
Kindness
Helping 
Inclusion
Non-judgemental 
Involvement
Curiosity
Open-mindedness

These words are positive. If we practice them we will be on the road to living in peace. I fail all the time. So will you. What matters is that I keep trying.

Today we remember Dr. Martin Luther King Jr.'s belief in all the words I  have listed. He believed the day would come when we would all live in peace.

Our country is in turmoil. Our world is a scary place. 

Tragedies occur in our world every day.

It's not political. It is humanity

A list of words.

The first steps toward Peace.

"Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it."  Dr. Martin Luther King Jr

 “People fail to get along because they fear each other; they fear each other because they don’t know each other; they don’t know each other because they have not communicated with each other.”   Dr. `Martin Luther King Jr.













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Thursday, January 4, 2024

EVERYTHING'S GONNA BE OKAY



I had a meltdown.
The floodgates opened.
All my worries.
All my fears.
Came tumbling out.
In the form of tears.
It felt good to cry.
Everything's gonna be okay.

Changes big or small are hard for me.
Even moving to the front you see.
I like it back here.
In my luxurious cave.
Yes, you'll have to rearrange.
Everything's gonna be okay.

Guys are moving in soon.
Oh me. Oh my.
I guess I'll give it a try
Everything is gonna be okay.

Someone from the office came to talk to me.
They put my mind at ease.
I realized how nice it might be.
Everything's gonna be okay.

My new housemates might be nervous too.
There is something that I can do.
Make them feel welcome.
This is your home too.
Everything's gonna be okay.

Thank you to my staff.
To the administration too
This is my chance.
I want to make this work.
I  really do.
Everything's gonna be okay.

Trust. 
Have faith.
Let God handle it.
I have to believe.
Everything's gonna be okay.





 

Saturday, December 30, 2023

3... 2... 1... 2023 IS DONE



In a matter of hours.
Let's say forty-eight.
Give or take.
At math, I'm not that great.
3...2...1... 2023 is done.

There were lots of changes in 2023.
My housemates moved. 
They now reside in long-term care
I miss them.
It's so not fair
3...2...1... 2023 is done.

2024 will bring. male housemates.
Oh boy.
Oh, joy.
Moving to a smaller room.
I wanted to stay in this house.
This is what I got.
I hope it works out
3...2...1... 2023 is done

2023 saw a change in me
I hope you can see/.
I try to be chill.
Calm if you will.
What does it matter anyway?
I do my best.
Forget the rest.
3...2...1...  2023 is done.

I saw the lights on Candy Cane Lane.
Saw the house that's not mine anymore.
Memories galore.
It made me sad.
Not mad.
Time marches on.
I've got to march with it.
3...2...1.. 2023 is done.

Some dreams you have to let fade.
No matter how much you want them to be saved.
3...2...1.. 2023 is done.

Cataracts, clean teen, and a physical
Thanks 2024.
I couldn't ask for more.
3...2...1.. 2023 is done.

Spread love.
Not hate.
Be kind.
Don't whine. 
Agree to disagree.
Please do that for me.

Keep Pushin' 
Surviving.
Thriving.
3...2...1... 2023 is done.

Thnks for reading nd suporting.
Let's knock 2024 out of the park,
Don't be a dork.
3...2...1,,, 2023 is done




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Saturday, December 9, 2023

FLY EAGLES FLY INTO CHIEFS KINGDOM










 The title of this post comprises the extent of my knowledge of football.
Wait. That's not entirely true.
I know Travis Kelce's position is a tight end and Jason Kelce is a center.
#87. #62.
Impressed yet?
Fly Eagles fly into Chiefs Kingdom.

The Chiefs brought home a win. 
They ruled in Super Bowl LV II.
]In November, it was the Eagles turn on Monday Night Football.
They swooped in for the win.
Sharing is caring.
Fly Eagles fly into Chiefs Kingdom.
.
Mama Kelce is cool.
I'd go to the NFL Hall of Fame just to take a pic of her shoes.
Win or lose she's there for her sons.
Because in her eyes they'll always be #1.
Fly Eagles fly into Chiefs Kingdom.

New Heights is their podcast.
It's #1 in sports.
Listen every Wednesday.
If you want to get their reports.
Fly Eagles fly into Chiefs Kindom.

From New News to No Dumb Question. Intern Brandon. Taylor Swift.
You'll get the scoop on it all.
They might even give Papa Kelce a call.
Fly Eagles fly into Chiefs Kingdom.

Kylie's podcast episode was the most listened to.
And anytime Jason's girls pop in.
It's a win-win.
Fly Eagles fly into Chiefs Kingdom.

A Fairytale in Philadelphia.
    A Philly Special Christmas Special on YouTube.
Is there nothing Jason and Travis can't do?
Fly Eagles fly into Chiefs Kingdom.

Positivity, laughter.
Supporting each other through wins and losses.
That's what they're about.
When the Eagles fly into Chiefs Kingdom.
It's a family reunion.
So, keep flying Eagles. 
Flying straight into Chiefs Kingdom.


I love my shirt


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Thursday, November 16, 2023

GRATITUDE IS AN ATTITUDE

I am grateful to the administration for allowing me to live in this house. I am grateful to my staff.  Thank you for providing my care. I am grateful to have been given another chance with this agency. I am grateful to those who continue to support and believe in me. I am grateful to be able to share my skill set by writing for the agency's newsletter.
Gratitude is an attitude.

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I am grateful for the freedom that I have. I shop, I bowl. I create. I advocate. I pray for the people who live in countries that are less fortunate than I am. 
Gratitude is an attitude.

I  am grateful for this blog. This blog lets me share my thoughts with all of you. I hope it also helps raise awareness.
Gratitude is an attitude.

I am grateful for all the holidays I got to spend with my family. I have awesome memories. I hope that someday we'll be able to celebrate together again. I am grateful that this  year I will be celebrating Thanksgiving with my agency family
Gratitude is an attitude.

I am grateful for my friends. They listen to me. My friends kick my butt when needed. My friends never fail to make me laugh.
Gratitude is an attitude.

My Maltease, Lucie passed away on November 23, 2014. She was my comfort during my mom's illness as well as after her death. I still miss Lucie. I am so grateful she was in my life.
Gratitude is an attitude. 

I am grateful to all of the countries that take the time to read my blog. When I read the stats I am amazed.
Gratitude is an attitude.

Make it your attitude.

Peace.







Saturday, September 16, 2023

HOW LUCKY AM I?

I am very lucky to still be living in this house by myself. I could very easily be in respite care. I thank God that I am not. 
How lucky am I?

Missouri is an "at-will" state. That means if the administration here chose to they could kick me out. Hello, respite care. I received my notice in the spring. My housemates are gone. I am still here.
How lucky am I?

I toured a house that was totally not power-chair friendly. Wheelchair-accessible houses are hard to find. That day I realized people \like me belong in nursing homes. That statement pushed disability advocacy back one hundred years. It is the way I feel.
How Lucky am I?

I came here with a stick up my buttt. I thought I was better than the other clients, I was too cool for school.  The truth is I am like them. They are like me. They are pretty cool. The stick was removed with the help of behavior therapy and common sense. We went to the movies. We saw Barbie. My new friend, Etta rocked out to the music. The movie was fun. The best part for me was watching Etta have fun  That's what it's all about.
How lucky am I?

I have been going out. doing activities with other clients. Today at the office, I made a stress bottle, hung out, and had some chips.
I have been invited to a client's birthday party next week.
How lucky am I?

There are staff members here who do not want me to leave. One staff member told me she'd start a petition.
How lucky am I?

I failed here. It's my fault. No one else's. I am afraid to try another group home. I am just as afraid of being in a nursing home I don't want to spend the holidays in a new place. I pray I am allowed to stay here for them.
How lucky am I?

If 2024 is predicting an LTC community for me. I want my friends to remember me here, on the patio sipping a Margarita and eating a cupcake.
How lucky am I?