Sunday, July 1, 2018

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 comfortable using a Hoyer Lifts temporarily until the Sara Lift that I had been approved for arrived. Hoyer Lifts freak me out, but since it would only be temporary I agreed. I had confidence in the aides at the house. They were kind and caring.  I had faith that 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 that 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 videos 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 in 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 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.













Wednesday, June 6, 2018

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.


  




Thursday, May 31, 2018

THE FINAL COUNTDOWN

It's almost here.  Final preparations are being made. They have painted my room at the house. The put a new floor in. My doctor has to visit me. for the last time. Four weeks from this Sunday is July first. I am counting down. Months have turned into weeks. The weeks will turn into days. The days will turn into hours., The hours will turn into minutes. Then I will be free. I have prayed to be free since October 15, 2014. The day I was admitted. I can't wait. At the same time,, the reality is hitting me.  I am scared. 

I  will be completely on my own.  I will have to learn to manage my life. There will be no one to call if I  screw up. I will probably be on food stamps. That is something that is difficult for to accept. I am not proud of having to rely on government, assistance,  but I will do whatever I have to in order to make this transition successful. I never want to end up in a facility again, unless I am ill, not because I need assistance with activities of daily living.

I need to be able to earn money. I hope community-based Medicaid will allow me to do so. If I earn too much I risk losing my housing. I worry about a lot of things. I guess that's the way life is for an adult. I have to trust, God, trust myself and my new caregivers. I have to believe that I will make it. If I have a positive attitude everything will be fine.

My needs after I transition are simple.

There will be good communication between my aides and me. 

My aides treat me with respect and dignity

My aides won't talk to me in a condescending manner.

My aides won't talk on their cell phones while they are assisting me. They won't make me feel that a phone conversation is more important that I am.

My aides won't make me feel degraded by not coming at night when I need them.

My aides will always remember that I a person, not just a body.

I will treat those who care for me with dignity and respect.  Providing care is a difficult job. I will appreciate the care they give me. I will never take them for granted.

I hope my aides will be in a good mood. I recognize that everyone bad days. I know that I do.  However, it gets old really quickly when I hear my aides talk about how much they do not want to be here. I listen to them and feel that I am somehow to blame for their unhappiness.

I will treat my housemates with dignity and respect.  I look forward to getting to know them.

I will not miss living in a facility. Understaffing makes living here extremely stressful. When I am put into bed I never know who'll get me up in the morning or if they will be on time. Thank you to the staff who listened to me, always made time for and never made feel that my concerns were not important. I will miss you.

Three and a half years have come down to four weeks. I still have to pinch myself. My story is proof that if you work hard enough dreams really do become a reality.













Saturday, May 12, 2018

MAKE HER PROUD

I wanted to write a birthday post because May 2nd marked my mom's 100th birthday. I could not think of anything to say that I had not already said. The day passed. I  spent most of the day in my room thinking about what my mom loved the most about her birthday. Two things. Coffee with Kahlua and free birthday desserts. Her birthday usually lasted until we'd patronized all her favorite restaurants. Unlike me, she did not mind restaurant staff singing Happy Birthday to her. She knew after they sang, she'd be given her dessert.

I started to think about writing a post for Mother's Day. Again, I did not know what to write. This photo was taken in 1976. I was nineteen years old. It depicts how we spent most summer afternoons. Swimming. I remember the hydraulic lift. I remember sitting in the sling. I remember my mom attaching the sling to the lift. Mom would raise the lift and position it over the water., I would dangle there until she got into the pool  "Mom, please hurry up. I could fall in,' I'd tell her. "Oh, you're fine. Give me a minute," she'd tell me. That was my mom.

When this photo was taken I had many hopes for my future. I wanted to be a medical social worker, get married and have a family. I wanted my mom to be proud of me. My life did not work out the way I had planned, but I know she was proud of what I accomplished when she was alive. I hope she is proud of the way I have handled things since her death. I failed a lot, cried a lot and even cursed a lot, but I made it. My mother was a strong person. Whatever strength I. have. I got from her.

Someone told me when I had to leave my house and move to a facility, that  I should say, 'Come on, Mom, it's time for us to go now." I did. I know that she came here with me because I feel her presence all the time.

July. 1st I will finally be moving into my new home. I  know my mom will come with. I hope I will continue making her proud as I begin my new life.

Happy Mother's Day Mom. Happy Mothers Day to all the moms. who read this post/. May your children continue making you proud. 




Thursday, May 3, 2018

STICKS AND STONES

RecentlyI heard a resident call another resident the R-word,, the derogatory term for someone who is mentally challenged. I was eating breakfast. I was shocked and offended. This is 2018. I thought that everyone was aware of how offensive and politically incorrect that word is. I didn't say anything. .I left without eating breakfast. I could not believe it. At lunch, it happened again. A resident mocked an elderly resident with Alzheimer's. When it happened a third time, at dinner, I'd had enough.

Those who were being made fun of were unaware they were targets. I felt sorry for them. A cruel disease had stolen their mind. it was not their fault. I felt I had to stick up for them.

I told the residents who were guilty of doing the mocking and laughing that we were adults. I told them they were acting like children. The response I received was,"Go eat somewhere else." I felt sorry for the residents at my table too. 

I have been laughed at,  mocked and made fun of my entire life. I have been labeled and assumed to be mentally challenged.  I know what names and labels feel like. I could give examples of incidents that happened to me in high school. This post would turn into a Poor Me post. That would serve no purpose. The sad thing is the school I attended was for physically disabled children. Everyone who attended had some kind of physical limitation. They were not tolerant.  Disability or not they were kids. They loved making fun of me. Everyone living here has a reason for being  We are adults. Some residents act just like the kids in my high school class. That's sad.

My former roommate thought that I hated her. The truth is that I didn't know how to deal with her.  She wanted me to help her and get things for her 24/7. She would even wake me up to press my call light for. her. The last two nights, we shared this room we talked. The one night she'd been crying. She asked me how I adjusted to being here. I knew how she was feeling. I had asked that same question when I moved here. I told her I hadn't. Living in a facility is not a normal way to live. I  just had to accept it until I found something better. I think we could have worked out our difference,s  I began to see her in a different light... I began to have compassion for her. The decision had been made. It was too late.

Why do people get such pleasure out of making fun of others?   Does it give them a sense of power? Do they feel superior to the other person?  Why?  I will never understand it  It just as easy to show compassion, empathy, and understanding. to another person.  It's a lot more positive too.

Sticks and stones. They can break bones. Broken bones will heal  The scars from being made fun of last a lifetime.

Sunday, April 29, 2018

THE GIFT OF FRIENDSHIP

I want to tell you about some friends of mine. Each of them is special. Each of them has taught me a lesson that I will take with me.

My first social worker here was Nancy. I knew from the beginning that she cared about me.Nancy always made time to talk with me.  Even after I was assigned a different social worker, Nancy's door was always open to me. She listened,  She offered advice when necessary, She fought for me, She encouraged me.  Nancy believed that I would be approved for residential placement even when I didn't.  She taught me to stay focused and determined. April 27th was Nancy's last day here. There was cake. There were pictures taken. It was difficult for me to say goodbye. I only have a few weeks left here. I am still because Nancy won't be here to ask me if I am okay.  I will always remember what she taught me. Stay determined. Stay focused,. Believe in yourself.

"I eat chicken, fish, and turkey." That's one of the first things I said to Julie, the dietician when she visited me to discuss my food preferences. I don't really remember when I began hanging out in Jule's office to talk. It just sort of happened. I tell Julie my frustrations about living here,  I run ideas for blog posts by her.We talk about life in general. She is busier now, We don't get to talk in person that much anymore., I email her. .Julie taught me not to obsess over my weight.  I try, but I am afraid I am not succeeding. The monthly weigh-ins are extremely stressful for me. She taught me not to worry so much about other people's opinion of me.  She taught me that it's okay to be myself.

I got to know Lydia, the director 0f the activities department when I began attending happy hour on a regular basis. Lydia's goal is that the residents here have fun and are happy. .Every Friday, while she is mixing drinks, Lydia's is dancing, and clapping to the music, encouraging the residents to do the same. I asked Lydia if she would make me a Caipirinha, The National Cocktail of Brazil, for my birthday. When I  googled the recipe I changed my mind because the recipe said the liquor used was difficult to find. I was afraid it would be expensive. Lydia not only got the ingredients needed to make the cocktail, she also watched videos to learn how to make the drink properly. I asked her why she would go to all of that trouble for me. "Because it made you happy. I like making people happy It's what I was meant  to do." Lyda taught me the importance of doing things to make other people happy. In return, I'll make myself-happy.

"Where ya been, Little Lady?' That was how Chris greeted me every afternoon when I returned from volunteering at the library. She no longer calls me Little Lady. She is the only one allowed to call me, Jojo T.  The truth is, even though  I hate nicknames, Jojo. T.  has grown me. Just like I don't remember when I started talking to Julie, I don't remember when I began talking to Chris either.  She walked up and down the hall carrying a laptop. I asked what her job was.  The rest is history. Chris is crazy in a good way. I see her and I smile. I never know what she is going to say. Chris taught me that it's okay to be silly. Age is just a number and that I never have to grow up entirely. Being around Chris has brought out an aspect of my personality that I never knew existed. I can be funny. .Chris and Julie are the reason I  write fairytale journals. Chris and  Julie are the reason my alter-ego, Prudencia exists. And, most importantly,  Chris and Julie are the reason I love sushi.

Thank you, Nancy,, Julie, Lydia and Chris for making my life better here. I am glad I came to this facility. If I had not been a resident here,  I never would have gotten to meet you  I consider each of you my friends. I hope that you'll come visit me. No, Chris, I will not send a limo for you.

Thank you for you for giving the greatest gift. The gift of friendship.



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Wednesday, April 25, 2018

BIRTHDAYS...NOT JUST FOR PRESENTS ANYMORE

I celebrated my sixty-first birthday recently. Last year, on my sixtieth birthday my friends, visited with a cake and gifts. My family gave me gifts as well. Friends stopped by throughout the day with birthday wishes. It was a fun day.

This year was much more low key. .Very few people came by. There were gifts, but not as many as last year. That's the way I wanted it.

This birthday was not about a cake or gifts. This birthday was a time for reflection and giving thought to how I want to be remembered. In 2013, I wrote a blog post titled  My Legacy.  https://confessionsofadisableddiva.blogspot.com/2013/03/my-legacy_18.html  In the post I talked about being remembered for my Bianca Bear stories. I said that 50 years from now I hoped that children would still be reading and learning from Bianca Bear. Bianca Bear as well as my Diva Blog were and are a part of my legacy.

I became an advocate for people living in long-term care facilities. I hope I raised awareness concerning conditions in nursing homes. 100 years from now I hope that no one with a disability is warehoused solely because they require assistance with Activities of Daily Living. I have been given a second chance. In six weeks my new life will begin. Not a day goes by that I don't thank God for giving me this opportunity. I  realize how fortunate I am.

I hope I am remembered for my kindness and generosity. I would do anything that I could to help anyone.  I am always giving things away. It makes me happy to buy something for someone. I do not like to see someone upset. I want to try and fix whatever is making them unhappy.

I hope I will be remembered as someone who tried. I have tried to live the best life I could.  I have made a lot of mistakes. The important thing is I did not give up. If I had given up,  I would not be at the place in my life that I am now, Preparing to leave this facility.

My legacy. Writing. Kindness, Tenacity.  I could not have asked for a better gift.