Wednesday, July 12, 2017

MY ROOM IS NOT MY CASTLE

"I may take a while. We don't know when, but it will happen."   That's how my social worker told me I would be getting a roommate.

I tried to explain to her issues that I have issues regarding the bathroom due to my CP and my spastiscity. She didn't want to listen. Her response was, "Having someone in the room with you will not affect you using the bathroom."  There is not even a door on the bathroom. There's just a curtain. .It was clear she didn't understand. She didn't get it. I told her she had to leave. I called my family.  Then I cried. I am embarrassed by my behavior. I wish she would have understood. I wish she would have listened.

People are always coming in and out of my room. The aides come in to talk to each other aides when I am on the toilet. They don't care. Even though I have had more things lost and stolen than I can count, but it was still my room. The place where I wrote. The place where I  blasted my music when I was frustrated.

I was told they tried to do this to me once before. My previous social worker got so upset that she walked out of the meeting. I was not aware of any of this. My brother knew I'd freak out. I was not given a roommate.

My facility has a new administrator.  I have a different social worker. This facility is a business. I it's run by the book. That's fine. Except for the fact inside of this facility are people whose lives are affected by the decisions other people make.  People who go home to their own space. People who have a bathroom with a door on it. People who have rights. No one is going to arbitrarily change their environment.

Being on Medicaid has made me feel like a second class citizen. My family pays for the things I need. People are being moved around in this facility. Every time that I see maintenance on my floor I wonder if they are going to install the divider with the curtain. The divider that will transform my room into a real hospital room. I won't be able to trick myself into believing that I live in an apartment anymore.

When I came here there was a resident on my floor named Bernice.I am almost certain that Bernice was on Medicaid. She was allowed to remain in a private room until she died. The staff here cared about her comfort. They cared about people, not profit.

When I came here, dietary would see that you got you what you asked for if it was a special item.  Everything is generic and cost-effective now.

I am not angry. I am tired. I am scared. I am working on getting out of here. I hope eventually to be back in the community. I will have my own room. If I have to share a bathroom I am sure it will have a door,

This facility specializes in assisting people who have MS. If I had MS and I was on Medicaid, I would not be getting a roommate.I have the wrong disability.

 Privacy will always be important to me. Medicaid has made privacy a privilege. It is a right that should be afforded to everyone. It should not be based on your ability to pay.
















Sunday, July 9, 2017

CELEBRATING A MILESTONE

Five years ago, on July 7, 2012, I wrote my first Confessions of a Disabled Diva blog post. I didn't remember the date until it showed up in my news feed on Facebook.  Five years, 190 posts. This blog began as an experiment. I wanted to see if I could write something other than children's stories. I wanted to see if I could write something that people would want to read.

My first post was about Lucie. I knew writing about her would come easily to me. Everyone knew how much she meant to me. She meant even more after my mom passed away.I wanted people to know just how special Lucie was.  I rolled up to my desk and began typing. When the post was finished, I'd written a post titled "For the Love of Lucie." https://confessionsofadisableddiva.blogspot.com/2012/07/for-love-of-lucie.html The post described in detail what a doggie diva Lucie was. Lucie and I went through some tough times together. her companionship was invaluable. I think of her every day.

I kept writing. I wrote about everything from struggles with caregivers to Cher. I wanted people to know what my life was like. I wanted people to know what it is like to be dependent on other people for almost everything. I always tried to end with a positive message. I always tried to give my readers something to think about.

I  have always been an advocate for people with disabilities. In 2014, when my life changed forever, I became an advocate for people in long-term care communities as well. I began blogging about how conditions were here.  How understaffing effects resident care. People need to know what life is like in a facility on a daily basis.  How will conditions ever improve if people aren't made aware of the issues residents face?Changes are happening at this facility. I hope the changes will be positives ones. I hope the changes improve the quality of life for those of us who live here.

I am trying to find an alternative living situation. Cerebral Palsy is a developmental disability. I must work with the Department od Mental Health. I have reactivated my case with them. I will be getting a case manager to assist me. Whatever happens, I will take my readers on the journey with me.

Writing this blog is therapeutic for me. If I write a post and publish it, I feel better because my voice is being heard.

Five years. 191 posts now. I hope my message of hope and perseverance has made a difference.

Thank you to those of you who have supported this blog for the past five years. Here's to five more.










Wednesday, June 28, 2017

IT'S WHAT GOD CALLED HER TO DO

Sondra Barker is the new assistant activities director here.She believes in doing "whatever God calls her to do."

Besides raising her own threes children, Sondra raised her nephew from the age of six until he was twenty. She is now raising her fourteen-year-old granddaughter as well as her ten-year-old grandson. To ensures that her grandson would not remain a ward of the state, Sondra, and her husband took foster parenting classes.
They learned CPR and their home was inspected to make sure it was safe. Even their pets were scrutinized.  Sondra and husband were required to make sure that their pet's vaccinations were up to date. About a year after they had become his foster parents, they petitioned the court to become his legal guardians.The judge praised Sondra for taking such good care of her grandson. They were granted full custody. Because of his grandmother's love and support, her grandson will never have to worry that he will become a ward of the state again.

Sondra credits two sisters, Effie and Elsie, for inspiring her interest and compassion for the elderly. They were her babysitters when she was eight or nine years old. Effie and Elsie taught Sondra to love Lawrence Welk. I have a feeling that her memories of Lawerence Welk bring back fond memories of Effie and Elsie too.

Sondra tells the elderly, "If you have a story to tell, tell it to a young person."She tells young people, "Listen to an older person. Listen to their stories. You can learn a lot."

Sondra loves to sit and offer comfort to people when they are passing away. She will hold their hand or sing to them if they are afraid. Sondra believes there are two times when we are the closest to heaven. When we are born and when we are dying. Both times Jesus and the angels are in the room with us.  Once, When she was doing nails at a facility, a lady asked to come to her room and do her nails. By the time Sondra got there the lady had died. Sondra still did the lady's nails because that was her last request. She received an award for honoring the women's request.

When Sondra was a nurse's aide, in the sixties, she did what she was told to do. She didn't complain. She had compassion for the people that she cared for.

Sondra has worked at a number of facilities in the activities department. When she was a director she was sent to school. She has her chauffer's license. She is also a deputy. Sondra can register people to vote.

Before taking the position of assistant activities director here, Sondra had been a lunch lady at a school near her home. She liked that job very much. She applied for the position of activities director here She was offered the assistant director position. When she walked into this facility she knew that it was where God wanted her to be.

I wish there were more people like Sondra working at this facility. I wish there more people like Sondra in the world. She the most selfless and compassionate person I have ever met. She makes resident's lives better.by doing what God calls he to do.








Thursday, June 22, 2017

THE PERSON I WANT TO BE

The past few weeks have been extremely difficult. Aides arriving late or not showing up at all.Aides turning off my call light without helping me and aides leaving me without my feet strapped in on my footrests, putting me at risk of sliding out of my chair. This happened most recently, last night. My aide left after discovering the sling for the lift had disappeared.   She'd  removed my footrests before she realized the sling for the lift was gone.

I felt myself begin to slide. I did not want to slide out of my chair. I began to yell for help. The nurse finally came. She asked me why I was screaming. I told her I was falling. The nurse and my aide finally got me back in my chair. I was relieved. I was very embarrassed that I  had to yell for help. It was late. I was disturbing my fellow residents.I didn't know what else to do. I apologized to some of the residents this morning.

I used to yell for help all the time. Then my aides and I developed a routine. I trusted the aides who took care of me. I had the same people caring for me the majority of the time. Now, I never know who will be caring for me or if they will be on time. If I wake up in the morning and need to go the bathroom and no one answers my light for over half an hour, I have no choice, except to call for help. I do not want to wet the bed.

I am trying very hard to change. The lack of staff is making it difficult. There are times when I have to behave the way I did when I got here. I do not want to be that person anymore.

I am going to begin to work with Paraquad with the goal of transitioning out of this facility.  I hope to find a safe living situation in the community. It might not work.I have to explore my options. I will have to prove to the state that I am deserving of another chance. I will have to prove that I  have respect for those who care for me. I will have to demonstrate that I have the skills to communicate my needs effectively. In this facility, I am one of almost thirty people. Sometimes I have to do things I am not proud of to make sure my needs are taken care of.

I do not want to have the reputation of being someone who yells. The person I want to be is confident and respectful. Yelling is degrading. Showing respect is empowering.








Wednesday, June 14, 2017

HOW I'LL SPEND MY SUMMER VACATION

Summer is here. For almost twelve years my mom and I attended the Days of Our Lives and General Hospital fan weekends in California. We also traveled to England, Canada, Alaska, Maine and probably a few other places that I have forgotten, with Flying Wheels a travel agency that specialized in organizing trips for people with disabilities. 

Summer afternoons at home were spent swimming in our pool, going out to lunch, going to the movies or to the mall. I miss those summer days more than I can tell you

Now, I am in a facility. A place where if the temperature gets close to ninety degrees, we are forbidden to go outside unless we are accompanied by someone on staff here or a family member. I have found a way to get around that rule. I go to the patio on the first floor. That door is always open. It is secluded and quiet. I sit outside in the morning or after dinner. Never in the heat of the day.

I will never have another summer like the ones I had when I lived at home. However, I can still enjoy myself. I have decided, at least for the summer, not to worry about whether I am making money or not.  I am going to blog, write stories and do some journaling. I will still write a monthly column for The West End Word as well as a weekly piece for The Mac Wire, but I am going to write for fun too.

Living here is stressful. This summer I am going to try to decrease my stress and relax Writing, like, reading, can take me anywhere because there are no limits to my imagination.













Monday, May 29, 2017

R E S P E C T

Those of you who read my blog on a regular basis are familiar with the fact that the gentleman at my table has yelled, cursed and pointed his finger at me He has also told me how disrespectful I am. The only thing I am guilty of is asking him to move over a little bit so he didn't hit my foot.

This morning, at breakfast, the gentleman yelled at me.  He yelled at a nurse. He told both of us he could yell if he wanted.  He said that he even yelled at his mother. 

It's not about him hitting my foot, It is about the lack of respect he has shown me. He wants me to move. I have always refused. I do not think it is fair to reward an individual's poor behavior. He has made his feelings very clear telling me,"I wish you'd move." "I thought you were eating in your room." I refused. I was trying to teach him a lesson.You don't always get your way. This is especially true when you live in a facility.   I wanted to get the respect  I deserve. It is not my job to teach him anything.  

What is more confusing to me is that he gets along well with the other female resident at the table. They have never exchanged a cross word in my presence. I have tried to show interest in the things that interest him. We are adults I thought the two of us could be civil to each other. I know now that's not going to happen. 

The only thing I have control over is my behavior. I have been in this facility for almost three years. I have learned that yelling does not win you any friends here. It makes people not want to help you. I am trying hard to change my behavior.  I am claustrophobic.  If I am in bed and the door is closed, I feel trapped.  I  will call for help because  I am afraid of being forgotten. If I cannot reach my call light, when I am in bed, I will call for help too.  

I can do one of two things. Change tables or suck it up and stay where I am. I like the other woman at my table. She and I have never had an issue.

I am sad that this issue is still continuing at my table. I am sad because the gentleman doesn't know. how disrespected I felt. I am sad that he thinks his behavior toward me is okay. I am sad that he just has no manners. I feel sorry for him. I am sad because he always makes feel like I am the one who is causing a problem at the table.   I stay in my room and write. I try not to bother anyone. If the room trays were not given out so late, I would eat my lunch and dinner in my room. It would be peaceful and quiet. I am sad that he is the reason I will probably change tables.

We all live in this facility together. We do not have to like each other. However, we should respect each other. Respect means everything.

Sunday, May 28, 2017

WHAT IS FREEDOM?

"I watched the movie Sex and the and the City yesterday. There is nothing like spending a Sunday afternoon with Carrie and Big. I had dinner with my neighbor at the restaurant down the street. Today, my caregiver is bringing KFC boneless chicken/  Then, we're watching  The Guilt Trip. Happy Memorial Day, everyone." My Facebook post from May 27, 2013.

This post came up on my Facebook news feed yesterday morning. What a difference four years make. 

Four years ago my concerns for Memorial Day were if I had enough money to get boneless chicken and the Reese's Chocolate Pie from KFC. This year, I wonder if I will get my shower on Monday because my regular CNA will be off for the holiday. 

Four years ago I was able to get in my van and my caregiver would drive me wherever I wanted to go. Now,  I cannot sit in front of the facility.unless I have someone with me.  It is true, I could take Call-A-Ride, but that is a hassle too. When I have a new aide, they do not know my routine. With all the new residents on my floor, sometimes, my routine cannot be adhered to.  I may not always get the times that I request using Call-A-Ride. Last week, I  canceled an appointment because I was afraid I would miss dinner. I guess the facility could have saved my dinner.  Understaffing has affected the dining room too. I didn't want to risk it. No one will help me to the bathroom in the middle of serving dinner. The aides are all busy. I would need assistance because I would have been gone for several hours.

Four years ago I lived in a house. Now, I have one room. I am thankful for my own space. My privacy means everything to me. I pray that it is never taken away.  My room and my writing are what keep me sane here.

Four years ago I knew approximately how long it would be before someone helped me to the bathroom. Now, if no one is answering my light, and I really need assistance, I call my family. My brother is the one who makes sure I get the help that I need. 

Four years ago, if I needed to see my doctor I made an appointment and went to see him. Now, I tell a nurse, but most of the time the message is not relayed unless I keep nagging. Nagging is exhausting.

Four years ago I didn't have to worry about whether or not a stand-up lift worked. I did not have to wait for my CNA to find a battery.The lifts and batteries do not work a lot of the time.We need new lifts. 

Four years ago I had a life. I was a volunteer. I went out on the weekend. Now, I  exist.  It was not much of a life, but it was mine. I have called Paraquad about some alternative safe living situations. The woman was supposed to email me information several weeks ago. She has not. I guess I will have to keep calling to get results.  Nagging is exhausting.

Freedom to me is things others take for granted. Going to the bathroom when I need to. Having an accident ts embarrassing and degrading.  Freedom is knowing that there will be an aide available to put me to bed each night as well as get me up in the morning using equipment that works, Transportation services that are not costly but will transport me in a timely manner. Having a regular writing job so I would not have to depend on my family so much. 

Tomorrow is a day to thank and remember the men and women who fought for our freedom. Think about the freedom you have. Think about the small things. Remember and be grateful.