Monday, September 18, 2017

SO, I WROTE A BLOG POST

Some weekends are best spent playing Word Tornado. I thought it was okay to playWord Tornado all weekend because it's like Scrabble. I am still using my brain, but I don't get a headache.  I get a headache, sometimes when I am trying to write blog posts or essays. I thought about blogging this past weekend, but I was like Scarlett O'Hara. I told myself "I'll think about that tomorrow."

I wrote (and deleted) a post titled  What's it like? I asked readers questions such as What's like to be truly independent? What's it to not have to be dependent on other people to assist with your personal care? What's it like to walk?  

I  asked these questions because I wanted my able-bodied readers to stop and think.To focus for a minute on all the things they automatically without giving them a second thought.  I have thought about true independence. I do wonder what it is like to be able to care for yourself.  I am happy and proud of who I am. If I didn't have CP,  I would be a completely different person. I still wonder though.  Especially since moving to a facility. It seems all I do I wait for the staff to help me.

I never want my readers to feel sorry for me. I am in an extremely stressful and difficult living environment. I am handling the best way I can.I  am proud of the personal growth I have achieved. Maybe that's  why this happened to me. I needed to change. I needed to learn how to better interact with my caregivers. If I am given a second chance I want to succeed.

I want my blog posts to make my readers stop and think. I want.to give my readers an idea of what my life is living in a facility. I write about negative issues hoping for a positive change. I am grateful for your interest and support.

 I believe there will be a positive end to this chapter of my life. My new life is just around the corner. It's only a matter of time. 

  

Wednesday, September 13, 2017

WAITING FOR THE OTHER SHOE TO DROP

Maintenance brought a second bed into my room. They moved my things around. When they installed an overhead light,  for a second bed, I was in the lobby having ice cream. I came back to my to find a framed poster had been moved to a different spot on the wall. Both times someone came into my room when I was not there. My things were moved without my knowledge or permission. I got angry. I am not proud of my behavior. I am embarrassed. Put yourself in my place. I bet you would have gotten angry too.

I have been assured by this facility's assistant director, that they have no plans to move anyone in here at the present time. The bed should have moved into my room when the curtain was installed. If and when they do plan to move someone in my room  I will be given notice. She apologized saying that maintenance should not have come into my room without my knowledge. The only people I want to handle my things are my family.

My greatest fear is waking up one morning and finding out someone is moving in here. I sincerely hope that does not happen.

I have tremendous anxiety. I am taking an anti anxiety medication, I hope by the time they want to bring someone in my room that I will be on my way to getting out of here.

Each day something happens to remind me how little control I have here. Anyone can come into my room at any time. If they are an employee of this facility there is nothing I can do about it.Residents who are confused have come into my and sat on my bed. I know they cannot help it but it's still unnerving.

My desk is my personal space. I have asked that the aides not put anything on it. Someone put their cup of coffee on my desk. My desk now has coffee rings on it. Someone's coffees also ruined a framed direct message that an actor from a telenovela sent me for my birthday. I don't know what happened.  The message is now unreadable. The aides talk on the cell phones while they are helping me. I  had an aide ask to watch something on my TV while she was helping me. There is a lack of respect for me and my property by some of the aides here.

When I came here the facility understood my issues. I was told I would never have a roommate. That was two administrators ago. I had a different social too. Now, I never know what might happen.

I am waiting...Waiting for the other shoe to drop.









Tuesday, September 12, 2017

ON MY OWN

In my last post, I told you that I would know by September 5th if I had been approved for placement in community-based housing.. I spoke with my case manager yesterday. She is still working my plan. Hopefully, she will submit it soon.

My case manager has spoken with my social worker regarding a sit and stand lift. I hope that is a sign that things are moving in a positive direction.

My family has helped me since the death of my mother in 2010. I want to take this opportunity to thank them for all they have done and continue to do for me while I live in long-term care. .I could not make it in this facility without them. They have never denied me anything. From grocery shopping to allowing me access to their Netflix account. I appreciate it all. I never take anything they do for me for granted. I love them all very much.

My family deserves to have their lives back. The past seven and a half years have been extremely difficult for them. I ask for their forgiveness.  If I am released from this facility I will be on my own  I will learn to pay my own bills. In order to be truly independent, the only person I can rely on is myself. I know my family wants the best for me. I know that they are hoping a better living situation will be found for me. I know that they just want me to be safe.

The government will not pay for a phone for me until I am released. I can even get a better power chair if I am released.  As long as I live here the government does not think that I deserve anything.

I want to thank the social workers for supporting me on this journey. Your interest, support, encouragement, and belief in me means more than I can say. 

This is a scary and exciting time for me. I won't know the outcome for several weeks. I continue to wait, hope and pray. Thank you, everyone, for your interest, love, and support.









Tuesday, September 5, 2017

STUCK IN THE MIDDLE WITH YOU

I have been stuck in elevators for a few minutes because I was unable to reach the buttons. I have been stranded, unable to get to the first floor of a building, because the elevator broke down.
I never thought I would get stuck in a shower chair,

My shower days are Monday and Thursday. My regular aide was off for Labor Day.I pushed my call button because I needed to go to the bathroom. My aide came into my room to tell me why she could not help me.  She turned off my light. I informed her that it was my shower day.  My aide told me she was busy. She would get to me as soon as she could. I was made to wait forty-five minutes. I wet the bed. Someone from the Activites Department heard me calling for help. She tried to get someone. for me. No one came. I was wet and cold. I smelled. Yes, the streak had ended. I had such hope. It lasted for just two days.

I was given my shower. I was being dried off. I am a small person. All the shower chairs are designed for someone much larger than I am  I have no balance. Because the chairs are so large if my aide does not support me. I will fall over. I informed my aide that I was falling over. She told me that I wasn't. I was sitting on one side of the chair. Part of the hole in the seat was exposed. In a split second my leg went into the hole, I was leaning sideways in the chair. My aide tried to pull me over.  Mythigh was stuck.She couldn't free me. It took three nurses. They used conditioner to make my thigh slippery so that they could free my leg. I was very scared.I kept begging for them not to let me fall.  I didn't know what was going to happen. I was naked. I had visions of the maintenance men coming in and having to cut the chair. in order to free me. The incident would not have happened if my aide had listened to me I know when I am about to lose my balance. I appreciate all of the nurses who worked so hard to free me.  

Several weeks ago I was dropped while using a stand-up lift  A loop, on the sling, that attaches to the lift,  popped off. It was not secure. Thankfully, I was not that far off of the ground. I was not hurt. I was stuck on the floor until a nurse came and checked me out. 

I have been stuck in the bathroom, attached to a lift without my call light, more times than I can count. I ask the aides not to leave me. Many times they will leave anyway. I am trapped until someone comes.I have been stuck on a bedpan for almost an hour. If I report any aides they refuse to help me.I only hurt myself. My family tries to adocate for me. Lately, their calls have gone unanswered.

I pray everday that conditions improve for me. There are a few aides who like and repect me. They know other aides treat me unfairly. I want to thank them for the care and respect they give me. 

I am not a bad person. I am not out to get anyone. It is not my intention to make trouble for this facilityy I want to have my needs met.  I want to be treated with the dignity and repect.I deserve.

.













Saturday, September 2, 2017

3 DAYS AND COUNTING

September 5th, if things stay on schedule,  I will find out whether or not I have been approved for community-based housing.

I am both excited and scared. I am excited because I will be able to roll out of this facility. I never believed I belonged here. If I am approved that means The State of Missouri does not think that I belong here either. That will be extremely gratifying to me.

If I am approved I will have to manage on my own. I hope the state will assist in moving my things. I will also need to learn to live on very little income. That is what scares the most. I have to make this work. If it doesn't, I will end up back in a facility with any chance of getting out lost to me forever.

I know living in community-based housing will be better than living in a facility. Instead of having to share aides with thirty-nine other people the maximum number of people I will have to share an aide with is four. I am sure that I will not have to worry about missing my transportation if I  want to go out. I will not have to worry about wetting the bed.

I will not have to worry that I will have a male aide My case manager has documented my preference.

I am concerned about how everything will come together. The main thing I am concerned about is not having Wi-Fi. If I lost the ability to write and access the internet I would not know what to do with myself.

I hope that I have lots of visitors. I hope that my family has time to come visit me too.

Living in a facility has been the most difficult experience of my life. I have also learned a lot from the experience. I have learned to be more patient. I have learned that arguing will not get me anywhere. It makes people not want to help me. It gave me a negative reputation here. I am grateful for the lessons I have learned

I try not to think about how I will feel If I am not approved for placement.As I said in a previous post, If I am forced to have a roommate I will not survive.

Thank you, family, and friends on Facebook and Twitter. I would also like to thank the staff here who are rooting for me. Your support and/encouragement mean more than I can say.

 Please continue to send good vibes. Please continue to pray for me. 3 days and counting...

Stay tuned.


















Thursday, August 31, 2017

RISE AND SHINE

Yesterday and today I did not have an accident. I woke up. I pushed my call light button. Someone came

I didn't have to begin calling ' Can someone help me, please? I don't want to have an accident. I am about to wet the bed." I didn't hear a nurse getting morning meds ready outside my room. I did not have to wonder why she did not ask someone to help me. Or, why she did not help me herself. I pushed my call light. Someone came to assist me.

I missed breakfast once because an aide left me in bed on my shower day. She returned after half an hour. By the time I got my shower They were cleaning up in the dining room by the time I got there. The staff got me my cereal, yogurt, and raisins. I ate breakfast. They cleaned up around me. Today was my shower day. I pushed my call light button. Two people came. They helped me to the bathroom. My aide got me in the shower. I was up, dressed and ready to begin my day. I had plenty of time before breakfast started.

Being helped the past two mornings so I didn't have an accident is a HUGE deal to me. My aides, the past two mornings, have been kind and understanding. They did not just walk past my door.  They did not come into my room, turn off my call light and tell why they could not help me. They did not make me beg for help.

There are good people here.There are people who care. I want to thank them for helping me. I hope they know what a difference they made in my day.

I am always writing about what's wrong with this facility. .I just thought it was time that  I wrote a post about what's right with this facility







Tuesday, August 29, 2017

I CAN'T LIVE WITHOUT IT

I have tried to stop writing this blog three times. Last week I told you that I was discontinuing writing this blog again.. I meant to keep my word. I really did. I can't because I am a blogger and a writer..That is who I am/Blogging/writing are a part of me.  I can not change the negativity in my posts. My posts are my truth. Another resident may see things in an entirely different way. I can only speak for myself.

I am going to write at least one positive statement in my blog posts beginning with this one. I am allowed to wet my bed every morning except when one aide is here. No aide comes in my room except to turn off my light. They tell me that I have to wait. I have told my social worker, the assistant administrator as well as the director of nursing. All of whom are very concerned. While the issue has not been resolved as yet, I believe in them.They assure me that they are working on it. I take people at their word.  I know the issue will be resolved soon. 

 I stand behind everything I write. I welcome the opportunity to speak with anyone connected with this facility to create an open dialogue. An open dialogue, I believe, will create a positive outcome regarding my life here. again, I welcome discussion. Any blog post I have written was meant to bring issues to light so conditions would improve. I hope the staff and administrators here are reading my blog. I welcome your comments.

I need to blog. I need people to read my posts. I need to speak my truth. It is what I do. You don't have to read my blog, but I am still going to write it.










Wednesday, August 23, 2017

QUIET PLEASE

I don't know if writing this blog is worth it anymore. People connected with this facility do not like my negative posts. If my posts offended anyone I  apologize. That was not my intention.

When I wrote for Voyce the staff there wanted to know what life was like for me here.  I made a video for them. They used my essays and video in training sessions. I was using my voice to try to make things better. I was making a difference. That's what this blog is about. Shedding light on issues.I decided to write the essays as blog posts because I thought my essays would be of interest to my readers. They were.  My aides were not happy. I was retaliated against. Aides refused to come in my room. Some of them asked me not to write about them in my blog posts. I was and still am, thought of as someone who gets people fired. I don't have that much power. Aides get written up or fired because of their behavior. 

Believe it or not, I am I the last person who wants to see anyone lose their job. The aides have families. They need their jobs. I just want to be treated fairly, listened to and have my wishes respected.  I stopped writing for Voyce. The pressure was too much. 

If some all the aides here took the time to get to know me,, instead of listening to rumors and judging me by my past behavior,, they would see the kind of person I am. I am just trying to get my needs met, not have accidents and not be forgotten.

I am learning that if I advocate for myself things just get worse. .No one will help me. It took me almost three years, but I understand now. it is best to keep quiet and get the assistance I need.It's sad, but it is a fact. If I speak out no one wants to listen.

I wanted to make a difference. I wanted my writing to matter. I wanted to help to bring about change. I felt it was important to let people know what it is like to live in a skilled nursing facility.I wanted to write my truth.

I think I will stop blogging for a while. If I cannot speak my truth there is really no point.

I will still be writing.Writing is a part of me.  I just won't be blogging. Maybe I will blog again, maybe I won;t. Only time will tell.








Thursday, August 17, 2017

A WEIGHTY ISSUE

My mother took care of me until she was eighty-seven years old. The reason she was able to do that was that I kept my weight down.  We had sweets and chips in the house. I just watched how often I ate them.

When I arrived at this facility I weighed approximately ninety--seven pounds. Everyone kept telling me to eat. I was underweight. It took a while until I was able to get above one hundred pounds. I was proud of being able to keep my weight down.
I am ashamed to admit that I looked down on other residents here because of the foods they chose.to eat. Didn't they know that all those carbs and sweets they were consuming would cause them to gain weight Didn't they know that if they gained weight it would be more difficult for the aides to assist them?  Didn;t they care about their health? I couldn't understand.

I understand now why residents eat the way they do. I understand because I am eating more too, specifically, desserts. Sweets make me feel better. Eating them helps me cope with stress better. I still try to eat healthily.  I eat mainly salad and fruit. The only difference is that I don't deny myself dessert anymore. If I want something sweet, I eat it. My weight (so far) is still okay.

One of the side effects of the anti-anxiety medication I am taking is weight gain. Now, I am stressing about medication that is supposed to help alleviate stress. It is a vicious cycle!

I know I cannot eat this way forever. I will just enjoy it while I can. I hope someday I will be living somewhere that is less stressful.

Until then...

Does anyone have any cake?





Friday, August 11, 2017

MAYBE SOMEDAY

Ableism is defined as discriminating against a person with a disability in favor of an able-bodied person Inspiration Porn is defined as being inspired by someone just because they have a disability. When I was young these terms did not exist.  The first time I heard them I was confused. I did not understand what the terms meant.

Growing up I never thought about being proud of my disability. I was disabled. I had CP. I wasn't proud of it. I wasn't ashamed of it. It was part of me. It wasn't who I was. I knew that, inside, I was just like everyone else. The difficult part was getting everyone around me to see me that way.

Before I entered The George Warren Brown School of Social Work my mother was told, by The Dean of Admissions, that the school did not want me. .GWB had to accept me because I met the qualifications for admission..My first advisor  told me that he "would rather see me fail than help me."  I didn't make a big deal of it.  I got rid of that advisor. I was determined to prove the school wrong. I did.

I have been told twice, by The Office of Vocational Rehabilitation, that I am unemployable. Again, I am determined to prove that wrong.

I guess I view things differently than the majority of disabled people. The ADA has opened many doors for people with disabilities.   However, a part of me thinks it is sad that people with disabilities won't have the experiences I did in seeking to get an education and find employment. Those experiences  made me a stronger person,

I have been patted on the head, both literally and figuratively, more times than I can count. I have been spoken to condescendingly and ignored. It is not right, but when you are disabled, (sometimes). you have to deal with it.

Ableism and Inspiration Porn have always existed. The only difference today is now they have names and definitions. I don't think that I will ever truly be thought of as equal by society.  There will always be people who will view me as different. In a  perfect world that wouldn't be the case. The world isn't perfect. I am different. I need services and assistance that others don't. That's not a bad thing. That's just how it is.

I try to live the best life I can. I keep pushing forward toward my goals. I continue to advocate and raise awareness through my writing.  

Maybe someday the world will be perfect. Maybe someday we won't need terms like Ableism and Inspiration Porn.  Maybe someday everyone will look at me and not see my wheelchair. Maybe someday everyone will really see me.  Maybe someday.











  












Wednesday, August 9, 2017

KEEPING MY EYE ON THE PRIZE

Being positive is a choice. I can choose to focus on all the things going on around me.that stress me out. Or, I can choose to focus on my goal of transitioning out of here and back into the community. I choose the latter.

I had a care plan meeting with the staff here. My case manager was also present. She asked about my needs.  She asked if the staff thought I would be able to live in community-based housing. All agreed that, with the proper supports in place, I would.

I had to answer eight pages of questions. This was an assessment of my skills and abilities. A few of the  questions were "What is bleach used for?"  "How would I find a job?"  I was asked to calculate the correct change, in my head, after a purchase had been made. (The one thing I could not do.) Except for calculating change, I think I did well.

My case manager returned two days later. She asked more in-depth questions. Gathering information for my plan. My plan must be submitted and approved. She hopes it will be approved before she retires at the end of September. Another case manager will take my case at that time. My profile will be sent out to various agencies/.Hopefully, a spot in community housing will be found for me.

She asked what the one thing was that I would like to do if I am assimilated back into the community. My answer was. ""I know I won't have much money, but  I'd like to go out to dinner,"  I  told her I wanted to have some type of part-time so I would have a little extra money. She asked about my hopes and dreams. My hope is to be released from this facility. My dream is to be a paid freelance writer. All this really means is that I I just want to feel like myself again. I haven't for a very long time.

I have to keep my eye on the prize. I have to stay positive. I have to keep moving forward. I have to believe.




Wednesday, July 26, 2017

CHAOS

I  don't have a roommate. Not yet anyway. My brother saved me, I will be forever grateful. My (almost) roommate's family saved her too.

Monday, when they moved my bed, I could not get to my desk. I got trapped on the opposite side of the room. I had a difficult time getting back to my side.

There were times when I could not catch my breath. I asked them to move my bed back to the place it had always been. They did. They pulled the curtain back all the way too. I could breathe again.

How can it be good to put two people in a room that was meant for just one person? How can it be healthy?  Does anyone care?

I will begin taking Lexapro to minimize my anxiety tomorrow.Roommate or not, this facility has become very stressful. I cannot handle living here without taking something to lessen my anxiety.There is just too much to deal with. People line the hallway. Tonight there is someone yelling. My floor has smelled of urine so strongly that I saw a visitor wearing a surgical mask.

My therapist tells me that I will get through this. That I will get to the other side. That I will be stronger. I am seeing her twice a week now. She tells me to keep working toward my goal of getting out of here. That goal is the one thing that gives me hope. If I have to live here for the rest of my life I will not survive. That statement is not meant to gain your pity. It's a fact.

Two state social workers have told me I am not sick. I do not need to be here. I have a good chance of getting out. I have to be approved. I pray a placement that can meet my needs will be found.

I have asked for help to the bathroom, but no one is coming. I had to call my brother twice before I was helped. It's really not the aide's fault. They have too many people to care for.

It is sad. This facility has put profit before people.  More residents have moved on my floor. Wings have been closed. Every day I am scared. I never know what will happen. I never know who will be caring for me.With so many to care for the care cannot possibly be as good as was before.  I hope living here is not my destiny

I have two meetings next week concerning transitioning out of here. Please send good vibes.

People, not profit.  People, not profit. People, not profit.







Saturday, July 22, 2017

CURTAIN'S UP

The room divider and privacy curtain have been put up. My room looks like the hospital room that my grandma was in when I was young. I  look at the curtain. I wonder how this can be happening.I cannot catch my breath. Anxiety.

Noise, confusion. Furniture being moved.  Residents in wheelchairs on both sides of the hallway. The med cart, the treatment cart are in the hallway too. "Excuse me, excuse me." May I get through, please?" I was just trying to get to the dining room. It took several minutes. I finally made it.

Two staff members have been extremely kind to me. I consider them m my friends. It is because of them that I  love sushi now. They make me laugh. They listen to me. The only way I have to repay them is through my writing. I am writing each of them a fairytale. I have created plots and characters in my head. My friends are characters in their fairy tales too.   I guess I live with my head in the sand. I have been told that I live in Lala.Land. Maybe I do. Living here is extremely stressful. Writing the fairy tales take me away from my reality. Away from this place. Lala Land is a nice place to live. At least for a while.

This facility is a business. They have put that fact ahead of our comfort and needs.It is sad. I get it. I am having issues and the person hasn't moved in yet.No one should have to live this way. Everyone has a right to their own space. We are being warehoused now. I wonder if the people who make decisions affecting this facility would like to live this way? 

I met with a social worker from the Department of Mental Health. I have a good chance of getting out of here. The social worker is checking into some options. She will write a plan. It will be a slow process. It won't be soon. There is a good chance I won't have to die here. That's what I will focus on. Not all the chaos going on around here. 

I am still scared. The only thing that I can count on is that nothing will be the same. I know there is a place for me in the community. I know that my future will be better than my past.   I have to be patient. My time will come. I won't give up.






















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.










Saturday, May 20, 2017

ICON IS SPELLED C H E R

I have written several columns for The Mac Wire regarding Cher receiving Billboard Music's Icon Award this Sunday. www.themacwire.com  I would not be considered a  diehard fan if I didn't write a post on my personal blog as well. 

I could give you stats. I could tell you that she has had a hit in on the charts in every decade since the sixties. I could also tell you that her Farewell Tour ran for three years. It was the highest-grossing tour of all time by a female artist, However, this post is not about stats.

The definition of an icon is someone who is admired and successful. Cher has certainly been successful. She is also admired by millions of people.  That definition is not why I consider her to be an icon.

Today is Cher's birthday. Last year, on her birthday, I received a personally autographed photo from her. The photo was not obtained easily. I drove people nuts to get it. I am forever grateful.

Her inscription on the photo of"Keep Strong" is so appropriate/ Less staff, but more residents on my floor mean a longer wait for assistance. Sometimes, when  I don't think I will make it, her words come into my mind. I  look up at the framed autographed photo on my wall. I know that I have to make it. I have no other choice. 

When she was told she couldn't do something, she did it anyway. When people thought she was finished, she proved them wrong and came back stronger. No matter how many times she has been knocked down, she gets up and keeps going.

"After the nuclear holocaust, they'll be cockroaches and Cher." This quote fits Cher. It means she is strong and she will endure.

Strength and endurance are what make Cher an icon.

Happy Birthday, Cher. Congratulations on the Billboard Icon Award. Billboard could not have chosen a more deserving recipient.
   


Sunday, May 14, 2017

IT'S THE LITTLE THINGS

It has been seven years since I lost my mother. Seven second Sundays in May that were not celebrated. I've spent this weekend lost in thought, remembering my mom. I want to share my memories with you.

My mom would be so embarrassed that I  used this photo. "Oh, for heaven's sake my hair's, in curlers." Every Saturday my mom washed her hair and put it up in curlers at our kitchen table. The pink plastic curlers were in a box that was falling apart. She would prop a mirror up in front of the box and roll her hair around each curler making sure each curl was just right.  This is a great photo. .Mom has finished putting her hair in curlers. Lucie's on her lap. Both of them are ready for a relaxing afternoon. This photo has been the wallpaper on my laptop for the past seven years. It reminds me of a typical Saturday morning at home.

Saturday nights we would go to Pietreo's, a neighborhood restaurant. Mom would order pasta with chicken and vegetables with a pink sauce. "Could you mix them,?" Mom would ask. They were not supposed to mix the red and white sauces, but they did it for her.  She would also order decaf coffee with Kahlua. She would always be sure to add, "And, don't forget the whipped cream" when ordering her drink.

For my mom's ninetieth birthday her great-grandson, Witt, made her a necklace. He had strung colored beads on a string. She loved that necklace. She wore it every day. She would tell anyone who admired it, "My great-grandson made it for me." The beads and pattern were so pretty that people thought that she had bought it at a store. When Mom died, I was given the necklace. I wore it every day. I made me feel closer to her. When the string broke, Witt and his mom fixed it and sent it back to me.  I wore it until it broke again. Then,, I carried some of the beads in my purse for a  long time. I knew how much joy wearing it had given my mom.  I felt the same joy when I wore the necklace. I was not ready to lose what the necklace represented, a connection to my mother.

My mother loved  Everybody Loves Raymond, Wheel of Fortune and the Game Show Network. She never tired of watching them. 

Pink curlers, a necklace made of beads, coffee with Kahlua, pasta with a pink sauce, sitcoms and game shows. These are the things that make the best memories.

Happy Mother's Day.






Wednesday, May 3, 2017

ESCAPE TO AGUA AZUL

Living in a facility is not easy. I have heard it compared to living in a mental institution or a prison. Sometimes, there is so much noise in the dining room I cannot have a conversation with the person sitting across from me.  I've witnessed an adult walking down the hall wearing nothing but a diaper I cannot sit outside in front of this facility without supervision/ I'd say that is an apt analogy

An escape. I had to find one. My answer came via Netflix.   I discovered telenovelas. A telenovela is a Latin American soap opera that is either produced in or televised from, Latin American countries.

Unlike American soap operas, telenovelas usually don't run for more than a year. That's the first thing that attracted me to them. I love American soap operas, but there are times when they seem to drag on forever without moving forward.  I knew the telenovela would reach a conclusion in a specific number of episodes.

I started watching Lo Que La Vida Me Robo.  The English translation is, The Life You Took From Me. Each night I  traveled to Agua Azul where beautiful Monserrat Mendoza is in love with Jose Luis. Montserrat's family is in financial trouble. Her mother forces her to marry Alejandro in order solve their financial problems. Alejandro inherited his father's fortune.  He promises to pay all of the Mendoza family's debts as long as Monserrat becomes his wife.

I got caught up in the story. I didn't even mind reading the subtitles. This telenovela allowed me to travel to another country. I will never physically be able to travel again. I got to travel to Mexico every night.  I saw palm trees, blue skies and a beach where the water was the bluest I'd ever seen. I was inspired to learn about another country and its culture.  I've learned a little Spanish online. I can recognize many words, but my pronunciation needs a lot of practice.  My ability to make typos is not limited to the English language anymore. I make them in Spanish now too.

I'd like to thank the cast and crew of Lo Que La Vida Me Robo, for the gift they gave me. They gave the opportunity to escape this facility.  It doesn't matter that my escape was only in my mind. I got lost in other people's problems and forgot about my own. I forgot I was in this facility.

I can't think of a better gift than that.








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Saturday, April 15, 2017

THE BIG 6-0

When my mom turned fifty. I was twelve. I thought she was really ancient. In a few days, I will be celebrating my sixtieth birthday. I was wrong. Fifty is not that old after all.

I have been thinking about the significance of this birthday// What makes it different from all of my other birthdays?   

Well, for one thing, I am letting myself eat junk food my entire birthday week. All the cookies, cake, chips and ice cream I want. When the week is over, it will be back to salad and fruit. Until then, I am having a great time.

On my fiftieth birthday, I told a friend how much I disliked turning fifty. It seemed so old. She said fifty was a great age to be. She said that I should embrace it and be happy. I didn't appreciate her words then, but I do now.

That's what's different for me about turning sixty. I will embrace it. I will be happy.I want to have fun. I want to laugh.  I have always been afraid of embarrassing myself.  I finally understand that life is too short to worry about what other people think.  As long as I know that I am doing the best I can, that's all that matters.  During her Believe Concert Cher said, "It's really fun to be old and stupid."   She was right. Living in a facility will always suck.  As long as I have people in my life who make me laugh and allow me to be silly sometimes, I think I will be okay.

The best gift anyone can give me is to visit me. I get very lonely here. Having visitors on my birthday would mean a lot to me.

This birthday is about being positive. It's about looking forward. It's about being hopeful.

My sixtieth birthday is going to be awesome. I cannot wait!!