CHRISTMAS PAST

Christmas Eve
Eating ravioli with my family. My mom makes Pasta House Salad and garlic bread to go with it.
She is sure she has forgotten something. 

She hasn't.
If I were home. 

Waiting For Santa
Our house is one of Santa's first stops. He finds our home quickly. My brother has done a fantastic job decorating it. Ours is the best-decorated house on the block.
If I were home.

Presents that were painstakingly wrapped are unwrapped in two minutes. Wrapping paper is flying. My favorite gift?  A bottle of Electric Reindeer. It is not really about the wine. The wine is the color of Rudolph's nose. Santa's #1 reindeer is on the bottle. My brother gave it to me.
Santa remembers the dogs, Lucie and Abby.

He has left gourmet doggie bones for them. 

Everyone's happy.
If I were home.

Mom burns the Christmas cookies. 

Doesn't matter. 

We eat them anyway.

A little charcoal adds to the flavor.
If I were home.

 Christmas Morning.
Mom is making waffles from scratch. Her waffle iron looks ancient. It still works. 

That's all that matters. 

Mom adds pieces of bacon to the batter.

She'd put butter on my waffles. 

No syrup.
Delicious.
If I were home.

Sometimes we'd make it to Christmas Day service. 

Sometimes not. 

I hope Jesus understands.
If I  were home.

Christmas Afternoon
My brother picks us up,

Mom, Lucie, and me.
More family time. 

Good food.  

A Christmas. story on TV.

If I were home.

Christmas Night

Christmas lights twinkle on our way home.
Christmas is over. 

Til next year.
Then we'd do it all again. 

If I were home.

Merry Christmas

WE ARE TEACHERS...WE ARE STUDENTS

Everyone has a story to tell.
You just have to be willing to listen
We are teachers.

I have never driven anyone else's power chair but my own.
I don't know the struggles another person may have gone through in life.
We are students.
We never stop learning.

Diversity makes the world go round.
The world would be a boring place without it.

Different thoughts.
Different ways of life.
We teach.
We learn. 

We grow. The cycle of life.

.

Animals teach us the most important lesson.
Love. 
They give love unconditionally. No strings attached. They are forgiving. No matter how many times we screw up. 
They always give us another chance.

People with disabilities have amazing stories.
.Listen

Overcoming adversity.
Compassion.
Patience

Understanding.

Nursing home residents can tell you what life was like when they were young. People don't take the time to listen.
 We should.
Our elder generation has lived through historic events that the rest of us have only read about in books. They are the real deal.

I have a challenge for you this holiday season.

When the wrapping paper is done flying.
When you've eaten more than you ever thought possible.
Talk with someone you have never talked to before, 
A  person with different interests, and abilities from your own. It is fun learning about new people and places  

One of the staff here has told me about her early life growing up in rural Alabama. I have always lived in St. Louis. I enjoyed hearing about her experiences .growing up in a southern rural area

We are teachers. 

We are students.
What's your story?

Happy Holidays!









..

RANDOM

Thoughts swirl around in my head.
Disconnected
Random

Worry about...
What I said.
What I didn't say.
Documented?
The way to survive?
Zip my lips.
Let people say what they choose.
Random

Do people like me?
If not...
Why?
Have to know.
To make things right.
It should not matter,
But it does.
.Random.

Am I heavy?
Diet.
No junk food will pass my lips.
OMG!!!
I just ate some chips.
Random/

Scared at night.
Only one person here.
My room is in the back.
Will they answer my call?
If there's an emergency.
Will anyone come at all?
Random.

Tordano sirens signaled an alert.
"It's just a warning that's all."
I was the only one in the hall.
Random.

I miss the CNA's
Who understood
Life wasn't perfect.
But...
In the end, it was all good.
Random.

Do I have enough money?
Will I have enough food?
Time for Food Stamps.
This is not good.
Random.

Each night when those my daily thoughts finally cease.
Thoughts of palm trees. blue skies and crystal blue water.
Help me drift off to sleep.
Random.




. 

.

.

.

DAWN

She was the first person I met when I visited the house.
Dawn

She picked me up on moving day.
She has been with me every step of the way.
Dawn.

She manages the house with ease.
Making sure we all have what we need.
Dawn.

Her dedication knows no bounds.
Arriving at 6 A.M.
Her day seems to never end.
Dawn.

Caregiver, chauffer, cook and more.
She never knows what her job has in store.
Dawn.

Phone calls appointments,, paperwork.
Check, check, check,
If a caregiver is a no-show she is on deck.
Dawn.

Neither rain snow nor gloom of night.
Would keep her from making sure we are alright.
Dawn.

She likes to sing and dance.
Boy oh boy.
And, would you believe she's from Illinois?
Dawn.

Christmas is her favorite holiday.
She starts decorating right away/
Dawn.

This poem's a thank you for all she does.
Running the house is a labor of love/.
Dawn.

Sadly my poem is nearly done.
Just one more thing before I run.
Dawn.

Care, joy and compassion radiate through.
She wants her ladies to be happy.
There is nothing she won't do.
Dawn

As caregivers go she is one of the best.
Will she ever, go home and get some rest?
Dawn.

ALONE

Anxiety.
Depression.
Loneliness.
Fear
Alone

A new chapter.
A clean slate.
Alone.

People pleaser.
I do what I am told.
Alone.

Liar, liar. Pants on fire.
The truth is the only way.
Alone.

I am a bigger person.
A better person than I was before.
Alone

Documentation.
I roll on eggshells.
Please
Thank you.
I wait for my turn.

I don't want to screw up.
Everyone knows if I do.
News travels faster than in a game of Telephone.
Nothing is private.

The staff knows more about me than I do.
"Joanne had fruit for lunch.."
: Joanne cried."
Alone.

Conversations.
Words people have said.
Go round and round in my head.
Staying with me for days
Powerful.
Alone.

Misconstrued words.
Garbled word.
Alone.

I am trying.
God knows I am..
The staff is too.
We are on the same team.
Alone.

The things that bring me joy are...
Visitors.
NHC.
Writing
Social media
Netflix

Adversity makes me stronger.
I will survive.
I have the love of my family.
My friends.

When sadness and loneliness engulfed me.
I think of them.
I think of all the gifts that they have given.me.
Time, friendship, love, support.
Things money can't buy.

I know.

I'm not alone.
















.

I AM ME

I don't write poetry. My diva blog was not created to be a platform for poetry. The people here don't understand me. I try, believe me, I do, but I don't fit in. These words came to me. I have to write them down. It takes me a long time to type anything, so when I do, I want someone to read what have written. Writing for myself is a waste of energy.

If it is okay with you I'd like to share the words that have running through my mind. it might not even be a poem.  You be the judge. Don't worry This blog won't morph into a poetry blog. I a not that good.

I don't laugh much.

I don't joke much.

I take things seriously.

Maybe to the extreme.

That's how I am.

I am me.

I don't chair dance or sing.

Blogging's my thing.

I am me.

I don't like noise or crowds.

Way too loud.

I am me.

I don't mean to be rude.

I like my solitude.

Sometimes I  like to talk.
confusing?
I am me.

I am told I am bossy.

Not bossy, advocacy.

If I don't stand up for myself who will?
I am me.

I care.

I can't do much.

I  can listen.

if someone needs to talk.

I am me.

I am sensitive.

My feelings are easily hurt.

I am me.

I will love my family and friends.

Until the end.

I am me.

Accept me for who I am. Warts and all.

I  am. a caring, sensitive, loving opinionated, self-advocate.

I am me.

..

YOU WILL BE MISSED

I did not know Lorie, a social worker, at NHC, well,  but I feel like we are friends.

Lorie has not been at NHC for very long, but I know she made a lasting impression. She was kind and caring, always willing to help. I know this is true. Even though she was not my social worker when I was was a resident at NHC, if I needed assistance she would always tell me to let her know if there was anything she could do to help.

Lorie was a server in the dining room on Mondays. She always made sure I got my salad and fruit bowl. Everyone at NHC knows how important a salad and fruit are to me. Lorie made sure every resident was served what they asked for. If they could not get what they ordered. she apologized.

I learned Lorie was a Cher fan when she told me she had been reading my blog. She loved my posts about Cher. She cried at Cher's STL Dressed  To Kill Tour. So Did I.. We bonded. Her Karaoke rendition of Cher's 70's classic Dark Lady was awesome. However, it's her rendition of The Weather Girls hit Its Raining Men that will never be forgotten. It was epic.

Today is Lorie's last day at NHC.

Best wishes, Lorie as you begin the next chapter in your life. I will miss you.

Lorie replaced Nancy. She had big shoes to fill and she did,


.

BE...

This  Thanksgiving  I will put my struggles and worries aside. I will be...

Humbled by those around me. Their needs are greater than mine.

Appreciate the care that I receive.

Positive that my day will be filled with good food and people. that care. Thank you for giving up part of your Thanksgiving to assist me and my roommates.

Prayerful remembering the people who have lost their loved ones and possessions due to violence and natural disasters. I will pray for peace.

Thankful that I am safe. I have a roof over my head. I have food to eat.

Honored to share in the 2018 Thanksgiving Day feast.

Agreeable and allow whatever happens to happen.

Nervous about spending my first Thanksgiving in the group home. 

Kind It is such a simple thing. Why is it so difficult sometimes? Our world needs kindness now more than ever before.

Sentimental remembering our turkey cooking in my grandma's Nesco Cooker, my mom's carrot casserole, my dad being the only one in the family who liked mincemeat pie,, the turkey being carved with my grandpa's electric knife, and the pilgrim salt and pepper shakers on the table. Remembering Thanksgiving we had a turducken.

Grateful for my friends and family All of you continue to be a source of strength for me. Standing by me on my life journey.  I am blessed to have all of you in my life.

Introspective by examining and getting lost in my thoughts. Being introspective is a good quality to have when you are a writer. It helps in the creation of story plots and characters.

Visual I will be watching. and waiting as the meal is prepared.

Informed when I ask my roommates about the Thanksgiving traditions that are important to them. 

Nutritious and eat healthily. You're not buying that, are you?  

Grateful that the nursing home has not turned its back on me. I love happy hour. I look forward to celebrating an early Thanksgiving with everyone.

What will you BE this Thanksgiving?

THE BEST GIFT

The day after Halloween someone asked me what I  wanted for Christmas. it is difficult to think about Christmas when Thanksgiving is still almost a month away. I said e-books and a CD. That's not what I really.want.

They keep telling me here I have to let my pride go. It's okay to let other people pay for things for me. There is no shame in being on food stamps. I was not raised to accept charity, but that's what I have to do now in order to do the things that I enjoy. I had a friend whose attitude was if someone wants to pay for something for you, let them do it. Medicaid has forced me to adopt that attitude. It is a difficult concept for me to grasp. I was told my financial situation would improve when I moved into a group home. That's not the case. It is worse.

I will never be able to repay my family for all that they have done for me. All the financial help and time they have spent assisting me. All I can do is thank them. Tell them I love them. I appreciate everything they have done for me more than I can say. 

Last week the best week. My friends Jenny and Susan took me to see A Star is Born. it's a love story and a concert.  Two of my favorite things. Lady Gaga is sure to win an AcademyAward. I hope the movie is awarded the honor of best picture. Bradley Cooper Rules!! 

I went to the Halloween Party at NHC. The DJ and karaoke were fun. Sondra, I loved your witches hat. Thanks for letting me wear it. Friday, I was back at NHC for happy hour. I enjoy being with my friends.  I will be at more happy hours as well as the Thanksgiving celebration. I am glad they still want me to participate in their activities.

It has been suggested to me that I join groups, make new friends. I thought that I would want to. I don't. I am blessed with family and friends who care. Why would I want new friends? I already have the best. I thought I would want to do a lot. The realities of living here have set in. All I feel is tired.

The only thing I really want is to spend time with my family and family this holiday season. Family and friends are truly a gift. I  hope all of you receive the gift of time spent with friends and family this holiday season.

HALLOWEEN 101

Helle Dear Readers. It's Prudencia. 
You may remember that I was a guest blogger last Christmas.

.https://confessionsofadisableddiva.blogspot.com/2017/12/shes-got-lot-to-say.html 

What do you mean you don't remember? How could you forget me? I was a fabulous guest blogger. I heard from spirit friends all over the universe. They said, "Pru you really have a gift. You should start your own blog."  Being a guest blogger is fun. But having my own blog? I don't know. It's a lot of work. I don't see how Joanne does it. Oh, there I go rambling. Forgive me.

Joanne invited me to be a guest blogger because Halloween is her least favorite holiday. Can you blame her? The poor girl's startle response goes into overdrive. She Hates dressing up. People scaring her. Nope. Halloween is definitely not her favorite holiday. She does enjoy the candy though. Resse's  Peanut Butter Cups. I do not know how the girl keeps her figure. If I even look at one it goes straight to my hips. Yes, spirits have hips. Don't ask. Too complicated. Moving on. 

I'd like to take the opportunity to de-spell some misconceptions about what spirits like me do on Halloween. Take notes.  Why? I can't believe you assked that question. I am a 5,000-year-old spirit. I am imparting wisdom. Enough said.

If you believe that spirits rattle chains and moan you have watched A Christmas Carol one time too many. Ghosts don't even do that. Moaning, rattling chains, scaring people. Ridiculous!  Not only would I scare human beings, but I would also scare myself. I don't have an ounce of meanness in me.  On Halloween night I guide the trick-or-treaters safely through their neighborhoods. if they cross the street I make sure that they are safe. When all the little witches, ghosts, and goblins have been tucked in their beds I get a feeling of satisfaction knowing that  I  helped keep them safe. 

I  have a little hot-buttered rum before I turn it in. It's delicious. What?  I am 5,000 years old. The nights are chilly this time of year. It helps me fall asleep too.

This Halloween...Be scared. (if you must).....Be safe...Be kind.

Don't overindulge in candy. Think of your dental bill!!

IT'S YOUR BIRTHDAY

My brother Bill passed away in 2013. On the day of his memorial service, I wrote the post below. We did not ' always get along, but he was my brother. I loved him. I was proud of him.  I just wanted people to know that. https://confessionsofadisableddiva.blogspot.com/2013/03/a-tribute-to-my-brother.html

Sunday, October twenty-first, would have been Bill's seventy-sixth birthday I have been .thinking about him. We had disagreements, but there were good times too. The good times are what I choose to remember.

I remember watching the movie Elf with Bill. He laughed so hard at Will Ferrell.that that it was more fun watching him than watching the movie.

I remember discussing which one of us was entitled to eat the one anchovy on the antipasto plate at Charlie Gitto's  Restaurant. After discussing it for several minutes we each ate half.

I remember after I had surgery Bill sent me a bouquet of tulips. Tulips are my favorite.flower.
'
I remember how good Bill's frozen margaritas were.

I remember begging Bill to give me his Barbra Streisand Greatest  Hits cassette because it had the song Stoney End on it. He repeatedly refused. On the drive home, I looked inside my cassette case and saw the Barbra Streisand cassette. Bill had given me the tape.

I  remember the book of poetry Bill gave for my high school graduation. I was nineteen. The book didn't mean much to me then. It means so much to me now.

Happy Birthday, Bill. I love you. I miss you. I wish I could talk to you.

This post was not planned... I rolled up to my desk and started typing. This post is disconnected,, random. A jumble of.memories that were written from my heart.






.

WHAT MAKES A HOUSE A HOME?

Today marks four years. October 15, 2014. The day my life changed forever. The day I left my house. The day I left Lucie. The day I left behind everything familiar. The day I became a resident at NHC.

I was a mess. People kept telling me the nursing home was my home now. I had to get used to it. I had to accept it. I knew I never would.

My first night there  I met Alice, the admissions nurse. She became my friend. She talked to me, she listened to me, let me cry when I needed to. She helped me plot ways to escape. Alice put me to work. I ran errands for her. I remember one night looking for bed alarms and batteries for bed alarms. It took all evening, but I found them. It was fun. Alice helped me forget where I was. Thank you, Alice, for helping me get.through those first months at NHC.

I got used to living in a nursing home, Used to the routine, used to the staff, I made some good friends.

Living in a group home is a unique way to live. I live with two other women. We go our own way. I don't see them very much.  Three women who were matched up as housemates.The criteria?  Our shared disability.

What makes a house a home?  In 2012  I wrote a blog post titled Home Is Where My Heart  Is. https://confessionsofadisableddiva.blogspot.com/2012/10/home-is-where-my-heart-is.html  In the post I talked about my memories of the holidays that I shared with my family at my house or theirs. It 's not my memories that made my house my home. It's the connections. It's shared memories, It is my family. 

After I sprained my knee, my brother Bob, sat in my hospital room for an entire day so that I would not be alone. He did it because he cared.  Caring. That's what makes a house a home. I have never forgotten that my brother did that for me. I never even thanked him. I hope he doesn't mind that I included that memory in this post.

Today is a difficult day. I miss my house, my mom and Lucie. My home will always be on Lansdowne Avenue in Southwest St. Louis. My house meant memories and connections. My house meant family 

WHO CARES?

I had an epiphany.  Last night, while trying to fall asleep I  thought to myself, "Who cares?"

Who cares if I am not paid to write for the WEW? I know that my editor will always welcome my posts. When I did not contact her, after moving to NHC, she called my brother to find out where I was. She has always made me feel that I am a part of The Word. For that, I am grateful. I am going to start thinking of topics for columns.

My friends and family have wanted me to publish another book for several years. They have offered to help me. And, you know what?  I am going to find a way to make it happen. If I cannot keep any of the profits, I will donate them to UCP.  I refuse to allow the State of Missouri to rob me of my self-worth or my ability to be productive. I can not just sit and vegetate/. Even if I am simply playing Word Tornado, I am keeping my mind active. I love words.  Words are the building blocks of thoughts. Thoughts turn into ideas. Ideas turn into goals. Goals turn into actions  Actions turn dreams into reality.

I live in a group home. Who cares?  It's lonely. Who cares? I have my phone, laptop, Kindle and social media. My friends and family are just a click away. I was told things that cannot happen. Who cares.  That happens all the time. There is a lot more stress here...A food allowance, meeting my spend-down and registering for food stamps Who cares?.  I made a mistake moving here. Who cares?  I will make the best of it. Nothing is written in stone.

None of it matters. What matters I am still the same person I have always been.  I will achieve my goals no matter what. I will. keep dreaming, writing and creating. I  will continue to think of ways to turn my dreams into reality. It'is my life.  My chance. I  care

KEEP DOING WHAT YOU KNOW TO DO

Writing. It helps me to make sense of the things that happen in my life. Blogging allows me to share my thoughts, ideas, and experience with you. Both positive and negative. 

I know you're thinking," Joanne you have mastered negativity. Try working on positivity now."  

I was writing to promote a positive change at the facility. Trying to bring about change was none of my business. The only thing I had control over was my behavior. The only thing I could control was how I reacted to people and situations. Anything else was out of my control. I could not make changes at the facility because I thought that change was needed. Who did I think I was? 

My degree is in social work. Maybe that explains why when I saw something wrong I wanted to make it right.  A friend told me it was okay to write about the negative aspects as long as there was a balance. I needed to write positive aspects about living in a facility as well. I didn't. I only wrote negative things. 

I am a hypocrite. I could not wait to leave the facility. I guess I should be embarrassed to visit,.i look forward to my visits. The receptionist told me that after being a resident for four years the staff becomes like a second family. 

I wrote post after post about what an awesome life I was going to have when I moved to a group home. It hasn't turned that way. I was boastful. My words are coming back to bite me. Words are powerful. Just like thinking before I speak, I must think before I write too. 

I wanted to prove that I could make it on my own. I didn't listen when people tried to give me advice. . If I had listened I am positive that  I would be in a better position than I am today. 

 I don't understand why I was given a food allowance when I have to apply for EBT. The thought of having to apply for food stamps is keeping me awake at night. I can't wrap my head around it.  

All I wanted was to resume writing my monthly column for The West End Word again.  I moved here so I could be productive. The way I was when I lived in my house.

I miss, my therapist. If she were here right now she'd tell me there is no shame in having to go on Food Stamps. She told me about the men and women who serve our country who had to apply for Food Stamps because they did not earn enough to feed their families. My therapist would also understand why I am upset. She knew how important earning a little money was to me. She knew how much writing for the WEW meant to me. I was finally a journalist.  

At the end of each session, my therapist would say two things, "Keep moving forward. Keep doing what you know to do."

 I hear those words in my head every day,

A SECOND- CLASS CITIZEN

Going on Medicaid was very difficult for me. I don't mean filling out the paperwork involved, (My brother took care of that for me.) |I mean getting used to the idea that I did not have the funds to pay to live at NHC anymore. The government would be responsible for paying my monthly bill, I could not earn anything while I lived at NHC. Any money I earned would have gone to NHC. I stopped writing my column for TheWest End Word.  I wrote a blog post about how having to go on Medicaid made me feel.  http://confessionsofadisableddiva.blogspot.com/2017/03/a-humbling-experience.html 

There were so many things I wanted to accomplish. The major one was publishing another book. I thought moving out of the facility would give me the opportunity to do this. I thought if I resumed writing my column or got a part-time job, I would not have to go on Food Stamps. However, that is not the case.

I have a monthly Spend-down, I have to pay my Medicare premium and my rent and utilities. Even with my food allowance, I will have to apply for Food Stamps in order to meet my monthly expenses. If I get a part-time job my benefits will be cut even more.  

I never understood why people with disabilities who were on Medicaid did, not try to get a job. Now I do. It's not because they are lazy. It is not because they don't take pride in themselves. It is because our government makes it almost impossible for those of us with disabilities to work and still receive the government assistance we need. I know people with disabilities on Medicaid, who work a certain number of hours a week. Perhaps it is because of my having a Spend-down or because I live in a group home. I do not know why I am being penalized. 

I regret moving from NHC. When I was a resident I did not have to be concerned with meeting my Spen-down, a food allowance or having to register for Food Stamps. My family tried to tell me. I did not listen. I wish I had.

Our government has taken my motivation and pride from me. When I have to apply for Food Stamps our government will have taken away my dignity as well. I  feel like a second-class citizen. Volunteering is fine, but like all of you, I would like to get paid for the work that I do. 

Living in a group home allows me to assimilate back into the community. If that's true then I should  be allowed to earn money like everyone else in my community

THE BEST PART OF WAKIN' UP

I was about ten years old when I tasted coffee for the first time. My grandma was drinking it. I looked at the steaming black liquid in her cup. I had to admit that the coffee did not look very good, but if my grandma liked coffee it must taste good. 

"Can I have a cup of coffee?" I asked her. She poured a little coffee in a cup for me. It was hot. I carefully picked up the cup. I took a sip. 'Yuck," I exclaimed. "This tastes like coffee grounds."  My grandma kept a jar of those hard coffee candies on the coffee table in her living room. I liked the candy, I thought that was what coffee tasted like. Boy, was I wrong!

When I started college I'd eat my breakfast in the cafeteria. My breakfast consisted of an omelet and a cup of. hot chocolate. I learned quickly that if I wanted to fit in I had to start drinking coffee. I did, with cream. (I drink it black with sweetener now.) I have enjoyed drinking coffee ever since. I had different coffee mugs. My favorite mug was my 50th anniversary Barbie commemorative mug. I drank my coffee out of that mug from the day I got it until the day I left my house.  That mug was one of the last things my mom gave me.

Starbucks...I have no words. Their Cafe Mocha Latte and Iced Carmel Frappuccino are two of my favorites. During the holidays; I have one of their Peppermint Mochas. Starbucks had a blueberry scone that was delicious. There was nothing better than a coffee and blueberry scone from Starbucks. I used to get that often when I lived in my house. Lucky for me there was a Starbucks close by. I love the Starbucks coffee in the glass bottles too. Whenever I am given a gift card from Target those coffees are the first thing that I purchase.

Almost everyone at the nursing home drank coffee. I was in good company. When I. moved to the group home, however, I was told my housemates did not drink coffee. How was I going to survive?  I went without coffee for two days until a friend came to my rescue. She brought me a large cup of coffee. Those were the hardest two days of my life. Something was definitely missing in my life without coffee. 

I have a coffee maker now.  You can all breathe a sigh of relief. All is right in my world.

Happy National Coffee Day.

SHE'S THE REAL DEAL

One of my social workers when I was a resident at NHC, was Nancy. I have written about Nancy before. I wrote a post titled The Gift of Friendship.http://confessionsofadisableddiva.blogspot.com/2018/04/the-gift-of-friendship.html  It's a post about my four BFF's at NHC. If you have not read it hope you will. If you have, I encourage you to read it again,. It is one of my best.

In my original post, I wrote that Nancy believed in me, she encouraged and she fought for me.  Nancy encouraged, believed in, and fought for all of her residents. If she saw that a resident needed something she did her best to get it for them. She cared. Some would say too much. That may be true, but. many who work in nursing homes don't care enough. Long-Term Care needs more people Nancy.  She knew that being in a nursing home was not fun. No one asked to be there. Nancy went the extra mile. Many times doing things on her time off just to make a resident happy. It was a sad day when Nancy left NHC.

Here's the really cool thing. Even though Nancy no longer works at NHC she visits the facility regularly to see how the residents are doing. And she has not forgotten former residents like me, who have moved to other places/ She visits us too. She visited me today. It was good to see her and talk to her. She is still listening to me and encouraging me. Some things  have not changed. I hope they never do.

Thanks, Nancy. See you again soon.

HAPPY HOUR

"What are you doing here? I thought you left." I am asked that question every Friday. Every Friday I return to NHC. I asked to volunteer at NHC one day a week. The activities director told me that my job is to participate in Happy Hour each week.  My job is to have a good time.

I had no idea that I would miss living at NHC as much as I do. I even miss my physician and my therapist. I didn't know that  I would be missed by the staff. I . fought so hard to get out of the nursing home. Now, I look forward to Friday afternoons all week. I know that some of you reading this are shaking your heads in disbelief. Six months ago I would have been shaking my head too.

I began doing research for the Activities Department. I choose the cocktail that is featured all month during Happy Hour. I may not live there anymore, but I still do the research and email suggestions. My recent suggestion, a Mexican Sea Breeze, was a hit.

Each Friday offers different entertainment. My favorite Fridays are when there is a DJ. I also enjoyed the staff talent show and staff karaoke. Sterling is a frequent entertainer. He plays and sings everything from. Lionel  Richie to Frank Sinatra..Sterling gets everyone moving. The staff and residents have a good time.

When I began exploring the transition process I was told that they try to match housemates on the basis of their interests. The only thing that my housemates and I have in common is that we share the same disability. We each do our own thing. They attend day programs.  I am either writing, on Social Media,. listening to music or practicing Spanish.

There is a difference between enjoying being alone and being lonely. This is a lonely place. The staff here encourages me to go out. I am not going to go out just for the sake of going out. I need a reason. I am paying off my dental bill. I won't have any extra money for a couple of months.

Maybe I won't be happy anywhere. Maybe there is no place that's right for me. In some ways living in a group home is similar to living in a facility. The main difference is that I can go out if the van is not being used by my housemates. It's short-staffed here too.  I have been reprimanded by aides young enough to be my granddaughter. I want to thank Dawn and Ebony. They are awesome aides who get it.  Thank you for the care and compassion you've shown me. This morning my young aide told me that I needed to speak louder and clearer. I have written in previous posts on how thankful I am to be able to speak as well as I do.

I have my own room,/bathroom,  I don't wait long for assistance.and  sitting outside on the patio is nice. I should be happy. Everyone here tells me to make new friends. I am shy.  It is not that easy. Everyone needs .to feel connected. Everyone needs to feel like they belong. Happy Hour is the one time during the week that I do.

Cheers!!






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A LEAP OF FAITH

July has come and gone. I'm still here. August will soon be history. I'm still here. Neither my lift or shower chair have been delivered. The sling for .the lift was /delivered to my new address last week.  I was told the rest of the equipment would be delivered in about a week. My new exit date is August 31st. This Friday. That date, however, is still tentative. If the equipment is not in the house I won't move. I learned on August 1st, that there wasn't a  bed in my room yet. That was another reason that I refused to move.

My family and friends have been great. Most of my things have been moved to my new address. The rest will be moved when I know August 31st is a certainty.

When I began this transition process, a year ago, I was excited. That excitement has turned into apprehension, anxiety, and fear of the unknown.  Don't get me wrong I still want to move,  but I will not deny that, after all the ups and downs, there is a small part of me that wonders if I have made the right decision.

I have been asked what my goals are. I have just one. My goal is to write from home. I need to earn money in order to keep myself from having to apply for Food Stamps. I wrote a blog post about how difficult it was for me to accept being on Medicaid. http://confessionsofadisableddiva.blogspot.com/2017/03/a-humbling-experience.html  I do not want to be totally dependent on the government. I want to contribute some of my own money   No one has to agree with me. It is a personal choice. I have been assured that everything that can be done will be done to allow me to earn money and still keep my Medicaid. Whether I end up having to apply for. Food stamps or not will depend on what my budget and Spend Down are.

Our government makes it impossible for someone like me to earn money without endangering my benefits. I will never be able to support myself financially, but I should be allowed to write and earn whatever I can. I want to pay for the things I need.  If I earn too much I will lose my benefits. If I lose my benefits I  lose my housing. Our government has made me feel like a second-class citizen. A drain on society. That is not the case. I am a good writer. Our government should give me a chance to use my skills. I should not be, penalized for wanting to work.

I am nervous. I do not know what this week will bring. Will I be able to leave this Friday? Will everything that I need be in place? Will I have to stay here a few more days? I don't know. All I can do is take a deep breath and have faith that after my year-long bumpy journey, everything will be okay.

MI FIESTA

I have been obsessed with Mexico ever since I watched Telenovelas on Netflix. I wrote a blog post about my favorite Telenovela. 

http://confessionsofadisableddiva.blogspot.com/2017/05/escape.html 

I am learning Spanish. Don't be too impressed. 

I can recognize words. I know what the words mean, but my pronunciation is horrendous. I won't be conversing in Spanish any time soon.

I wanted to have a party for the staff. I wanted to thank them. I wanted to leave this facility with good memories and positive vibes. I wanted to have a Mexican Fiesta. I thought it was tacky to ask my friends to throw. a party for me. I was talking with a friend here.  She encouraged me to tell my friends. that I wanted a Mexican Fiesta goodbye party. The worst thing that could happen was that my friends would refuse. I could live with that.

Sometimes it is okay to ask for want you want. I learned that real friends don't think it's t tacky when you ask them to throw a Fiesta for you. My friends were as excited about my Fiesta as I was. The invitation was online before I knew it. My dream of having a Mexican Fiesta became a reality.

Surprisingly staff and a few residents came. Everyone had a great evening munching on nachos, and cupcakes. and drinking Margaritas. I will remember my fiesta as an evening filled with laughter and fun. Thank you, Ellie and Laura. The food was delicious. Thank you to all who came. Your presence meant a lot to me.

My fiesta was more than food, friends, and fun  I learned some valuable lessons from it.  Sometimes it is okay to ask for what you want and need if it means a lot to you. go for it. Ask. If you don't you will always wonder what if.  That what-if could be awesome. You'll never know. unless you take a risk and ask. It is okay to, do things that make you happy. Your friends might just want to see you happy too.

I  thought no one liked me here. I always thought I was viewed as a problem. Turns out the staff likes me. I know it's true because of all the hugs and good wishes I have received.  When they say they will miss me, they mean it.

I thought there was nothing good about me. I was wrong. I am funny. I love to laugh. I enjoy doing things to make other people happy. I am a good person. I deserve to be happy. It has taken a long time for me to believe that.

Gracias. mi amigas.  Yo soy muy Feliz.

BREATHE IN, BREATHE OUT

Six days. That's all the time that I had left here. July 1st was just around the corner. 

My social worker was going to begin packing up some of my things and take them to my new address. Friends and family were going to move the rest of my things on the First of July. 

I had been asked if I was temporarily comfortable using a Hoyer Lift until the Sara Lift I had been approved for arrived. Hoyer Lifts freak me out. Since it would only be temporary I agreed. I had confidence in the aides at the house. They were kind and caring.  I believed they would do whatever was necessary to alleviate my fear. I  had been asked. if I wanted to move in a few days earlier. I declined. There were a few events I wanted to be around here for. I  had a lot of goodbyes to say. I'd already started. 

Then I got the email. Due to a computer upgrade my transition file could not be located. Recovering my file was doubtful. If my file was not found my case manager would have to rewrite and resubmit my transition plan. My July 1st exit date probably would not happen.  My case manager could not give me a new exit date. I reread the email several times. I was stunned. How could this be happening? Didn't they back up important documents at my case manager's office?  Wasn't there a hard copy of my plan somewhere>

I am not proud of my behavior the night I received the email.  It was not pretty. With no new exit date I envisioned myself having to spend another holiday season here.  

I spent the following day trying to process the fact that my file was missing and that I no longer had an exit date. Processing meant I treated myself to more than one dessert. I watched movies most of the day.

I decided that waiting was okay. I was informed the longest I would have to stay here was a month. That would give my case manager time to get my Sara Lift into the house and rewrite my plan. 

Two days later my plan was located. I received a copy only to discover that my plan contained incorrect information. I wanted to review the plan with someone. I wanted the errors corrected. I was given a consent form that everyone involved with my plan was required to sign. If I signed the form I could move on  July 1st. Due to the errors in my plan, I refused to sign the form. My new exit date is August 1st. I am comfortable with that date. My case manager and  I are meeting in a week or so to review my plan and make the necessary changes. I have been assured that my lift will be in the house by August 1st.

It has been an emotional roller coaster. I was given earlier dates to move into the house. Then, I wasn't moving because my plan could not be located. When my plan was located. I was moving.on July 1st again. I asked to be sick with the August 1st exit date. The final date.

I want to thank Kristine, my social worker for working so hard on my behalf. Kristine took care of all the phone calls and emails to keep my stress level down. She has been my advocate during this transition process, making sure my needs were going to be met. Her support has been invaluable.  I want to thank the staff at Creative Concepts for understanding my needs and concerns. I want to thank my case manager for agreeing to meet with me so that my plan can be finalized. I want to thank my family and friends for offering to move my things. I know how busy you are. I appreciate your help more than you know.

There was nothing I could do when my file could not be located. All I could do was have faith,  keep calm, and carry on.

IF I WAS AN OMBUDSMAN

What happens here should not bother me. I am leaving. Why should I care?  I don't know. That's just how I am. I witnessed a lack of respect shown by a nurse to a resident. The nurse called the resident a name. The name is not the issue. The fact that they said it, then laughed. is/ It made me wonder what names the staff has called me. I reported the nurse

A few hours later I witnessed a male resident disrespect a med tech. I could not believe it. Without thinking I told him not to talk her that way. I could not stand the way he'd talked to her. He looked at her like she was a bug he needed to squash. I reported the resident. 

I have not always been a model resident. I have gotten angry more times than care to remember since I have been here. I have never called anyone a name, cursed at them or told them to shut up. I have reported staff. Two things that make me angry are, not being listened to by my aides because they are too busy talking each other. Or, having an accident because no one came to answer my light. I get angry when I have to sit in my own waste.  The accidents could have been prevented if my nurse had assisted me. Nurses prioritize here. I am a low priority. 

I advocate for myself. If I didn't I would be forgotten. The people in the incidents I described behaved the way the did just because they could. I guess it gave them a feeling of superiority.

If I were this facility's ombudsman the top three changes  I would advocate for would be the following:

The facility offers sensitivity training classes for both the staff and the residents. I have been advocating for this to happen since I moved here. No one has ever taken me seriously. These classes would benefit everyone.

The lifts used in this facility are in very poor condition. Either the batteries have not been charged or the charger is not working properly. There have been times when just one battery was charged. That one battery had to be used for all of the lifts on my hall. The lift pads may be dirty and torn. The lift pad might be too big. Recently, the lift I was using did not roll straight. It went sideways. It was scary for both me and my aide. Better equipment is desperately needed.

The tables in the dining room are too small for four people, to sit at comfortably. This is especially true if those sitting at the table are in wheelchairs. It is difficult to get close enough to the table.  Bigger tables would make residents more comfortable.

I am not this facility's ombudsman. I am just a resident, The administration of this facility may read this post and have millions of reasons why my suggestions are not feasible. .The administrator does know what it is like to live here. I do.

I am nervous. when I think about leaving, but after what I saw today, I know I made the right decision. I can't handle disrespect like that.  I hope the changes I mentioned will be considered in the future.