GOD'S PEP TALK (I'M PROUD OF YOU)

 

You have moved into a new house, in a new county.

You feel like everything familiar has been taken away from you. 

You needed a place to live. 

 You are grateful this agency provides you with one,

There was nothing you could do. 

You are surviving. 

You are pushing through.

I'm proud of you.

Your new house is small. Your chair bumps the walls. Chips of white paint fall like droplets of snow.

All of your things fit in your new room. Two exceptions. Your bookcase and fridge have found new homes in your house.  You know they are not far. It's crowded. You feel safe 

with things surrounding you.

I'm proud of you.

New staff to train.

Such a pain.

But you do it again and again.

Near misses. I am here. Never fear.

Start over.

You're tired

But....

You must.

So, you do.

I'm proud of you.

You write. You teach a class.

It kicks your ass.

You need the money.

It's not funny.

I'm proud of you.

Joining groups is not for you.

There is only one thing you want to do.

Meet with state legislators.

Travel to Jefferson City. 

To see Missouri legislators in action.

On your own. You don't need a rally

I'm proud of you.

You know your interests are not the norm.

People tease and make fun. 

Don't turn and run. They are the losers.

Keep finding things and people that bring you joy.

Keep being you.

Whatever gets you through.

I'm proud of you.

It's hard to be grateful sometimes.

I know that you are doing your best to show your gratitude.

I see your successes.

I see your struggles.

I'm proud of you.

 

I THINK I CAN

 

Tomorrow's the day.

I am moving away.

New house.

New chapter.

I think I can.

New challenges.

New staff.

How 'bout that?

I think I can.

I am afraid.

But...

I have a supportive team.

Who says I'll do great.

I can't wait!

I think I can.

6 plus years in this house.

That's a lot.

Jackie, Kathy, and Joanne.

The Ladies at Jaywood.

I think I can.

Dawn and Lachandria.

Our support coordinators.

The best of the best.

Nothing lasts forever,

Except for my memories.

I think I can.

On to Greenwich

In St. Chuck.

Wish me luck.

I think I can.

Things don't always work out the way I want.

I will put on my big girl panties.

And...

Suck it up.

I think I can.

Think positive.

Say a prayer.

I think I can.

My move has been pushed back another week. September 24. They are still working in the house.

DID YOU KNOW?

 

Did you know that the state of Missouri is being investigated by the Department of Justice for delaying people's applications to go onto Medicaid?  Missouri has been deemed the worst state in the country for this 

Medicaid serves low-income individuals and families living at the poverty level. Delaying someone's application for 45 days denies access to doctors, medications, surgeries, and more. 

Why delay applications?  Does Missouri treat people awaiting Medicaid this way because it can? This is one example of how Missouri has failed people in need.  No one wants to be on Medicaid. It's a necessity. Not a choice. 

Feds to scrutinize Missouri’s worst-in-the-nation Medicaid application delays • Missouri Independent

Did you know there is no set ratio of staff to residents in nursing homes in Missouri? This means one CNA  could be responsible for an entire hall of residents. Let's say the hall they are working on comprises 40 residents. That's a lot of resident ts for one CNA. They cannot possibly provide the best care to each resident. The staff can't get to each resident promptly. (Imagine being left on a bedpan so long that you fall asleep waiting for someone to come.( That happened to me.)

Not having a set staff ratio to residents is unfair to both sides. The residents suffer because they are not given the quality of care they deserve. The nursing staff is overworked. This leads to burnout and to a nursing home being staffed by agency staff who know nothing about the residents they have been assigned to care for. Mistakes (while unintentional) in a resident's care or medications could be made. Residents of nursing homes need caring staff as well as consistency in staffing. Residents need staff they can trust to provide them the best care.

Did you know this? The cruelest and most egregious thing Missouri has done.

Imagine being dumped in a nursing home because you have a mental illness. You are denied the ability to choose, to go out, or to see your friends.  Missouri and your guardian made the choice for you. You are scared and alone. you've lost hope. You have not been aware of supportive housing, and other programs that would allow you to be a part of a community instead of a drain on society.

You are locked away and forgotten. You can't decide what you want to eat or what clothes you wear. Imagine. I can't even.

What about working with the person's court-appointed guardian and Missouri so that an individual feels a part of the process. There are decision-making support programs. Make this and all other support programs available to them.

Missouri what is wrong with you?  I am embarrassed and ashamed to live in this state. This is how my state legislators treat Missouri's most vulnerable citizens? Just because we/they are on Medicaid.

More accessible housing

Set staffing ratios in nursing homes

Offer support services to those who have a mental illness. Institutionalizing them serves no positive purpose, It is dehumanizing and degrading.

There are people in the St. Louis area who are advocating for accessible exam tables in doctor's offices as well as accessible testing equipment such as in radiology. I can personally attest to the fact that accessible medical tests are needed.

I'm still fired up. I am all in I heard a new term on social media. An impacter is a positive source of change. I was meant to do this. I want to open legislator's minds in my little corner of the world.

To the State of Missouri, I ask the same question. Would you want your loved one to be treated this way?

Do better.

 

MARGARITA PARTIES ON MY DECK ('WHO'S IN?)

 I tend to only see the negative. Is my glass half empty or half full?  It's cracked. The liquid is flowing freely going nowhere. Like I am right now at this moment. I'm stuck. I am not moving forward. I have no one to blame but myself.

Ever since I saw the house for the first time I have been scared of all the things that could happen because the hallway and doorways aren't the way I'd like them to be.

Another big thing for me was that my furniture would have to be split between. both bedrooms.

What I should have been thinking was wow this agency went to all of this trouble for me. The director must think a lot of me.

I went to the house with the staff last night.  They were envisioning where all of my furniture would go. I started to see the house in a new light. It could actually work. it is a cool house with cool appliances and yeah, a cool bathroom.

I should have moved today. I hope this agency will allow me to still move to my house. I don't want to stay here. I want to move to the house that was meant for me. 

I got stuck turning to go down the hallway. My staff was there to guide me. My two favorite rooms are the kitchen and the deck, I see many gatherings with friends in my future, with, of course, Margaritas

Fear is my biggest hurdle to overcome. Fear of the unknown is a humongous hurdle for me. I have to trust. Trust the director and trust the administration. 

I screwed up by not moving today. Just tell me when my next opportunity to move is. I can't wait to move into my house.

.

FOLLOW UP (I NEED SPACE)

 

I have the utmost respect for the director of this agency. They gave me a job and have allowed me to remain with this agency as I continue to work on myself.

 A post written in anger serves no purpose/ I attacked the director's reputation. The reputation of this agency. When I go to the office I see firsthand how hard the director works for everyone. 

My previous post was revised to advocate for all of us who live in an ISL I owed that to this agency. I owed the to the director.

I was almost given 30 days again. The difference this time is that I made a phone call. The director and I talked like people.  Two hurt people. I heard the hurt in their voice. The director could hear the hurt and fear in mine. I felt like the unfeeling person I was for writing my previous post. The director is not responsible for the rules of the State of Missouri. The director can only do so much.

The director and I are meeting at the house next week to brainstorm how to make it more accessible. I don't have to move right away. The director told me not to worry or stress. I am not going to. I know everything will work out.

I'm glad I wrote my previous post. It led to a phone call that allowed me to see things in a different light. People do care. Even when I don't see it. They are just doing the best they can.

I NEED SPACE

The State of Missouri.

Are you Listening?

I need space.

Missouri has to do a better job

As far as government housing goes.

Don't penalize me because I am on Medicaid.

I  need space.

Wider doorways.

Wider hallways

Big bathrooms too.

To accommodate lifts, powerchairs, and caregivers

I need space.

Obviously, the State has no idea.

The needs of a powerchair or manual chair user.

I need space.

What if there's a fire?

I need to get out fast.

A narrow hallway,  I can't get past.

I need space.

The State's solution?

Move into the house.

The State needs to see that there is a need. 

Before they agree to make the necessary changes.

Then move out while renovations are being done.

Then move back in.

I need space.

Move three times?

Missouri's out of their minds?

Do they realize how hard that would be?
I don't think they do.

I need space.

I have one question before I am done.

It's for my state representatives.,

Would you want your loved one to move three times?

I need space.

This post is titled  I Need Space.

A more accurate title would have been, "We Need Space."

Because all of us who use mobility aids do.

I urge you to call your representatives of the State of  Missouri,

Tell them...

We Need space.

Contact your state legislators: LWV Of Missouri |

 

THAT'S ME

 Last week was a whirlwind of planning, activities, and emotions. I finally had to say enough! My transition meeting is on the 12th. This agency wanted me to move on the 13th. I co-taught a 3-hour training class on the 8th. On the 9th, I was scheduled to see the new house. By the night of the 8th, I felt sick and exhausted.

On the morning of the 9th, I was still exhausted. It hurt to raise my arm to feed myself. I did not go to see the new house.  

Transition meetings can be long.  It's a lot. A meeting where I meet new people talking about my future. A meeting like this wears me out. I am now moving on the 21st. I can take it slow and chill out by taking walks around the cul-de-sac 

I was told if a house was found in this area I could move back to this area.  I appreciate the offer. When I move again it will be to an LTC community. I lived in the same house for 57 years. When all is said and done I want to live in a facility where I can just "be."

I am an introvert. I don't talk much. I don't like to be pushed. I am most comfortable writing and watching movies. I love the few close friends that I have. I don't like parties. They tend to be loud and crowded. Meeting new people makes me anxious.

I am grateful to still be a client of this agency. For the past year and a half, I have done everything to prove to the administrator that residing my 30-day notice was the right decision. I hope I succeeded in doing so.

Two high points for me in the past week:

I learned that the residents of an exclusive nursing home in this area read my fired-up blog post and wanted to meet me. They were disappointed I was not a resident. I guess I got them "fired up" too.  

My post was deleted by Facebook. I am an introvert who is a rebel. I couldn't be prouder.