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. I will probably be on food stamps. I am not proud of having to rely on the government, for assistance.

I hope community-based Medicaid will allow me to earn my own money. 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 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 condescendingly talk to me.

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 than 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 miss my friends at NHC. I want to thank the staff who listened to me, who always made time for and never made feel that my concerns were not important.

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

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. 

THE R WORD

I heard a resident call another resident the R-word,  the derogatory term for someone who is mentally challenged, while 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.

 At lunch, it happened again. A younger resident mocked an elderly resident with Alzheimer's. 

When it happened a third time I'd had enough.

The residents 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 had to stick up for them.

I told the residents who were 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. 

 People have assumed that I am mentally challenged throughout my life.  I know what names and labels feel like. 

The school I attended was for physically disabled children. Everyone who attended had some kind of physical limitation.  Disability or not they were kids. They were cruel. They loved making fun of me.

Everyone living here has a reason for being in this nursing home. Every resident deserves respect and empathy. Some of the residents here act just like the kids in my high school class. 

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 when it is just as easy to show compassion, empathy, and understanding. to someone?

I guess I will never get an answer.

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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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.

WELCOME HOME

"Welcome to our family.  We're so happy that you want to live here.." With those words, the staff, as well as my housemates, welcomed me into what will be my new home.  The aides who will be caring for me introduced themselves to me./ They shook my hand.  I was overwhelmed.  It was at that moment that I knew everything was going to be okay.

I will be sharing a ranch-style house with two other women around my age. We each have our own room. My room is big with plenty of closet space. There is a common living room and we will share the kitchen. The bathroom is big. It has a door. No more privacy curtain for me.

I knew I was going to live in this house before I toured it.
The house is in a good location for anyone who may want to visit.  I hope I have lots of visitors. If I want to take Call-a.Ride so that I can be totally independent rather than having one of my house staff drive me to my destination it is in their area of service as well.

My housemates and I are free to do our own thing.  I can have my meals when I choose. We are not required to eat together. It will be like living alone but with the staff there to assist me.  My housemates and I have one very important thing in common. All three of us want our own space, privacy, and independence. We all want to live in a quiet, peaceful environment.

I will be opening a bank account. I am looking forward to learning how to budget my money. I will be responsible for buying whatever I need that insurance does not cover.  ,  It is a goal of mine to publish another book.   When I need assistance, someone will point me in the right direction to finding the resources I need.  Everyone affiliated with the house strives to make sure that those of us living there are happy and leading the kind of life we want to lead.

The Staff who'll be caring for me have two weeks of training.  The staff knows about CP.  I will be able to tell them how best to care for me so that I am comfortable.  I have met two of the house staff so far. They were interested in me. They treated me like a person. I choked up quite a bit the first time I visited the house. Everyone was so kind. I was told I can do anything I want.  This will be my home. When I heard those words I was speechless.

It will be two or three months before I officially move in. My case manager has to get the equipment I will need to live in the house.  A transition meeting will take place and paperwork has to be submitted. I have been assured I am really moving. There is no turning back now.

Three and a half years ago I thought my life was over.  I have been given the opportunity to start a new life. I am patient. I can wait.   Wait for the day when I can finally say, "I'm home."









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My NEXT CHAPTER.....I'M READY

I finally got the call.  It has been over three months since my initial meeting with my case manager.  I had almost given up hope. I thought my profile was in the system. I thought they could not find any agencies that were willing to offer me support. I was wrong.

My case manager had been meeting with her director as well as someone from another department to discuss my case. She had not forgotten about me. My profile is now in the system

In a week or so my case manager and I will begin to be contacted by potential providers  (agencies) who have viewed my profile and are willing to support my needs. I will choose the provider I  am comfortable with.  Then my case manager and I will visit community-based housing. in my chosen locations. I will have the opportunity to spend time in my perspective home before making my final decisions.  I can see a light at the end of the tunnel. I am almost free.

Everyone is happy for me. Both at this facility and on social media. Everyone. has been so supportive. Your messages have been overwhelming. Today the woman from the state, who forced me out of my home over three years ago,  came to this facility. I ran into her by coincidence. She knows the first social worker I'd met with last fall  She was aware of everything.  She asked me if I was happy to be getting out.  I replied that I am. She said that she was happy for me/She wished me well. It felt like she was giving me her seal of approval.  I appreciate her positive response.

You, my, readers, know what is important to me. Having my own room, not having to wait as long as do here to get the care I need, a bathroom with a door on it, and. a peaceful environment. Just being in a house again will mean everything to me.

There are so many things I want to do. My goals are to write my column for The West End Word again and to find a way to publish another book.

I worry about how everything will work out. I have faith that everything will be fine.

My next chapter is about to begin...I'm ready.