Friday, April 29, 2016

BEING A CHER FAN

Photo Courtesy of  Mary Lou Grana 
I debated whether or not I should write another post on Cher. This is a disability awareness blog, not an entertainment blog. I want to be thought of as a serious blogger/journalist. 

I decided to write another post about my effort to get Cher to tweet me, because when it didn't happen, I experienced feelings of being inadequate, The feelings were the same as those I had back in high school..I wondered what was wrong with me. 

Being a Cher fan is like wanting to be part of a club, but no one will give you the password. No matter how hard I try I will always be the one on the outside. Always on the perimeter. Close enough to see in, but nobody will open the door. 

 Fans have tweeted: she’s replied. They’ve met her. They have traveled all around the county. Seen her more times than they can count.. I have seen her six times and treasure every memory. 

I took a risk in tweeting Cher. I failed. I will move on. I have been a fan for as long as I can remember. I still am. My feelings are a little different now. I am not as diehard a fan as I was.  I won't tweet Cher again. I won't set myself up for failure.. 

To those readers who groan every time they see that I have written another post about Cher, I apologize. I hope I didn't sound whiney or pitiful. That was not my intention. 

Cher tweeted about a children's book called The Adventures of Supercaptain Braveman. http://www.supercaptainbraveman.com/ It is about  a boy in a wheelchair named kyle who has an alter ego who is a super hero. He wants to be accepted and included just like everybody else..That's all anyone with a disability wants. .


















Wednesday, April 27, 2016

REFORM NOW!!

Earlier this month, a group of activists, in wheelchairs,from ADAPT, staged a protest in front of the White House. I wish I could have been there to protest with them.

The activists were protesting President Obama's lack of attention to the violation of the rights of people with disabilities, by forcing us to reside in nursing homes rather the providing us with the support and services needed to transition back into the community 


Senator Chuck Schummer has proposed, The Disability Integration Act. ADAPT wants President Obama to support it. Currently, Medicaid and Medicare only pay for five hours of care a day. Medicaid, Medicare and Social Security need to be reformed so that individuals like me aren't forced to live in nursing homes because we need  twenty-for hour care

Programs and services are being cut all the time. I am sure the decision-makers who authorized the cutting of funds to needed services,  have never had someone walk in while they are being given a shower and just start chatting with the aide who is assisting with the shower. That happened to me this week. They were chatting as though I was not even in the room. They showed no respect for my right to privacy at all.  I will never get use to the lack of sensitivity here.

I  do not mean to disrespectful to the social worker who forced me from my home. They did what they thought was best. I think they should have helped me  make my home safer and my care better. They removed me from my home and my life. They have no idea what it did to me, to leave the only home I'd ever known. It was  the worst day of my life.

Paraquad has a program that will assist you in transitioning out of a nursing home back into the community. Until the government  allocates funds for twenty-four hour care, I cannot utilize the program. I need to be safe.

It is my hope that  President Obama will support The Disability Integration Act. People with disabilities have the right to be a part of their communities. We should not be penalized because we need care.

https://nonprofitquarterly.org/2016/04/12/disabled-protesters-in-dc-our-homes-not-nursing-homes/




Monday, April 25, 2016

THE GRILL MASTER

Since becoming a resident here, I have come to realize how truly fortunate I am. I have a supportive family. They know how difficult it can be for me here. My brother, Bob has become my advocate. He does whatever he can to make sure my needs are met.

He also does whatever he can to make me happy. All I have to is tell him I need or want something and he will do his best to get it for me. From Jilly's Cupcakes to yogurt covered raisins, if I want it, he gets it.

Bob made my birthday special, taking my table mate;s orders and bringing us Chines food. He always makes sure that I have wine in my refrigerator to share too.

Bob's interests include sports, birds, animals and he loves to barbecue. When the weather is nice that's where you'll find him outside barbecuing. Chicken brats,pork steaks, hot dogs. you name it, he can grill it.

One of the residents at my table kept saying that they wanted a steak. When Bob heard about it, he offered to grill a stake for them on the grill that's on the facilities patio. Next Sunday, the four of us will be treated to steaks and salmon burgers grilled here by my brother. We are looking forward to it.

I realized again how lucky I am. I saw how happy everyone was when he brought us Chinese. Not everyone has the supportive and generous brother I do. Not only does he want me to be happy, he wants to make other residents happy too.

I am proud of Bob for wanting barbecue for us. He doesn't like to make a big deal of all the good things he has done for other people. But this is special to me. I wanted you all to  know what an amazing brother I have. He has never let me down.

Next Sunday the steaks and salmon burgers will be delicious. I know because my brother is The Grill Master.









Saturday, April 23, 2016

JUST ONE TWEET

Photo Courtesy of Kelly Frey Suellentrop 
I am pathetic. I am needy. I am a nerd. I will write the adjectives for you, because after reading this post, I know you'll be thinking them.

You see, last Tuesday, April 19th, was my birthday. I had a good day. Family and friends visited. One of my favorite actresses,Nia Vardalos, tweeted me a birthday greeting. (I loved My Big Fat Greek Wedding. I cannot wait to see the sequel.)  My table mates and I, had were treated to a meal of Chinese take out and sake.  All of this celebrating should have been enough  But it wasn't. There is still one gift that I didn't receive. 

I'd been on a mission. I wanted a birthday tweet from Cher. I tried last year. Nothing. I was determined that this year would be my year. She's tweeted other fans her special birthday cake emoticon. I was going to.get one too.  Why it mattered at fifty-nine, I cannot explain, but it did.

Cher had tweeted me once, six years ago, after my mom died. It was time for another. I know fans she has tweeted more than once, Why not me?

A week before my birthday, I began tweeting her every night.. Reminder tweets, I was sure she'd want to circle the date in red pencil on her calendar, to make sure she didn't forget. My tweets were funny, stupid and serious. Anything to get her attention.  I even got friends to tweet her on my behalf. Nothing worked. I tried not to be disappointed, but I was. 

I think all of us have interests that we are a little obsessed with. Whether it is sports or following the plot of our favorite TV show. People or things  we feel connected to. You might not want to admit it, but you know you know you have one..

I am still tweeting Cher. I looked forward to doing it  I missed it when I stopped. I like making up tweets every night. I am sure 'I'd have more writing opportunities if I worked as hard on finding those as I do on the tweets/

There so many issues facing the disabled and long term care communities that need to be addressed. I will write about them in future posts. This post is just important to me.

Whether or not Cher tweets me won't change the world. It will just make me happy.

A friend told me to make this a funny post. I don't know if it's funny or not. I just wrote what I felt.

Cher, I'm still waiting. I know you won't let me down.





Friday, April 15, 2016

IF YOU WANN BE HAPPY

Happiness comes from within. Happiness is a choice. No one can make you happy. We've all heard these statements. I received an email outlining the nine things you need to give up if you want to be truly happy.  Nine keys to happiness.

It's about changing your behavior. I am told all the time that I need change my behavior. Stop complaining. Don't be resistant to change. Don't limit your beliefs. Give up the need to be right all the time. Give up the need to impress others. Stop seeking others approval and let go of the past. I don't remember the rest, but you get the idea. 

Let go of all negativity in your life. I  am guilty of almost every statement that was on the list. The sender thought it would a good blog post. I didn't how to write a  post without again admitting how I'd screwed up. I did enough of that in my previous post.It left me emotionally drained. I questioned whether I should continue to blog.

.I have said before that I am glass half empty kind of person. It has been extremely difficult for me to see anything positive in my current situation. I could probably go back further and say since the passing of my mother. At least then, I was in my house with Lucie. Being in familiar surroundings made dealing with her death much easier. 

When I ask two residents I know how they are doing, one replies, "I'm here." The other resident replies, "Another day in paradise." No one who is young wants to be here. We joke about planning our escape all the time. We are just resigned to the reality that we are in a facility. No one is happy about being here.

What makes the day better is when people visit. We know we haven't been forgotten. Going out whenever possible is important. The other day, I had lunch, at the mall, with a friend. After lunch we went to a bookstore. Two simple things that meant the world to me. I felt like my old self. I was happier than I have been in a long time. 

I know when life gives you lemons you need to lemonade out of them. I haven't found a way to do that in this situation. I am trying. The only positive thing is I am not a ward of the state.

I am a very flawed human being. People don't believe me, but I am trying to change. It is one step forward and ten steps back because I fail at it all the time. I am, as we all are, a work in progress.

Being positive may be the key to happiness, but a trip to the mall doesn't hurt either.








Saturday, April 9, 2016

FAKER

"You're a phony" Someone said those words to me last Thursday. They told me that I portray myself as, The Disabled Diva, someone who can do things for herself. when, the realty is I cannot do much of anything for myself. Even making a decision is difficult for me. I worry what others will think of me. Even writing this is risky because I might lose readers. I am willing to take the risk.

When my mom died, I was left to manage my house oversee my dog Lucie's care as well as manage my caregivers. If I was too strict, they didn't like it. They'd quit. If was too lenient with them they'd walk all over me. I didn't have the skills to manage them effectively. I had over seventy caregivers come through my house from 2010-2014. I can hear you gasp as you read this.

My journey to this facility  began after the home care agency I was using hot lined one of my home care workers for mentally abusing me. A state social worker came to my house to talk to me. I thought they were there to talk about the caregiver. They were, but they were also there because I had been hot lined. I did not realize this at the time. When questions were asked about my finances and my relationship with my family, I did not answer them. I was deemed abrupt and evasive.

Lucie was old and sick. The carpets were ruined. I tried to  see that they were cleaned regularly, but the house was a mess. I didn't do a good job with Lucie or my house. The state said I needed twenty-four hour care. My family couldn't prevent my being forced from my home. I was unsafe. That's why I am here.

I have difficulty communicating my needs effectively. I am always being told that I don't know how to talk to people. Some aides here won't work with me. I am happy to say that all the aides today have worked with me. We have gotten along fine.It all comes down to me not having learned the proper skills. I am working on issues with a therapist.

This was a difficult post to write. It is not easy to admit that I failed. I didn't take advice when it was offered. I don't like anyone thinking I am a phony. I didn't intentionally misrepresent myself.

I hope you will want to continue on my life's journey with me.





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ROLL A MILE IN MY SHOES

Ever since I entered this facility I have been saying there is a need for some kind of sensitivity training here. It would be beneficial for all of the staff, but it is especially needed for nurses and CNA's

I am not only talking about knowing what it's like to have to be assisted using a lift. I am talking knowing how other things residents have to endure make us  feel.

When I wake up in the morning, the first thing I need to do is go to the bathroom. Not all nurses will assist with this. They tell me they will let an aide know. If my aide is not available or hasn't arrived yet, I have wait. Sometimes I do not make it. I wet the bed. I may have to wait to be cleaned up. When my aide finally arrives, they act as if it's no big deal. It is not a big deal to them. It is a big deal to me. I am an adult who knows when they need to use the bathroom. Aides need to understand what it's like to need help . And the feeling of degradation you have when you have had an accident. Aides need to know what it feels like to be left in the bathroom or in bed, with no call button in reach. You feel trapped. Having to yell for help because no one has checked on you makes you fell like an animal

The way I am dressed here is very uncomfortable for me. They roll me from side in order to put my pants on. They put my shirt over head when I am laying down. .Because my arms are contracted, it hurts. If I try to tell them this is uncomfortable,  some aides tell me it's easier for them. Aides need to experience what it feels like to be dressed in this way. There are some aides who pull my pants when I am standing on the lift. They wait until I am in my chair to put my shirt on. Dressing me when I am out of bed is easier on me. It doesn't hurt the way being dressed in bed does. Aides need to listen tol the resident they re assisting. Sometimes a resident may know an easier way to do something. What works for some may not work everyone. We are all individuals. Each resident is different..

When I was studying to be a social worker, one of the things that we were taught was to have Empathetic Understanding  with a client. This is the ability to imagine how you would feel if you were in the same situation as the client you are assisting.   If aides had the ability to practice Empathetic Understanding I think they would be more compassionate. For many aides this is just a job. They just do it to get a check,

An aide told me last week,"I am not here to be nice. I am here to do my job." It would be nice if they could do both.

I see how hard the aides work. I know this job is not easy.

We have more aides on my floor now. I am happy to say things are running more smoothly.The new aides have been pleasant and helpful.

I hope this is the beginning of a positive change in this facility. I hope things are looking up.







Thursday, April 7, 2016

ACCENTUATE THE POSITIVE

I have done too much bashing of this facility That is why last night's post about this facility will be my last  negative one. While all of the issues I have written about actually happened to me, blogging about them served no positive purpose.

I thought by writing them I was bringing issues to light so those issues could be rectified. In reality, All I was doing was using this blog as a platform to vent my anger and frustration.  And, what good does that do,  really?

NONE. ALL it did was keep me angry and frustrated.  I don't want to be that way anymore. In the past few days I have noticed a subtle  change . There new aides here. Things are running more smoothly than they have in quite a while. 

Having a new aide scares me because I am afraid they won't listen when tell them what I need, I am use to certain aides because they know how to do things for me. I know I have to give new aides a chance. They might be just as scared as I am.

That doesn't mean I do not have hopes of leaving here one day. I don't want to be here. Whatever happens,  I will try to make the best of it. 

I spoke to a social worker today. We had a productive talk. I know that there are some good people here who care. I am also working with a therapist

I want to take this opportunity to apologize to the administrator and any other staff member who has read my previous posts concerning this facility. I know that it has been a difficult time. I know that you are doing the best you can.

So, moving forward, I will try to informative posts. Posts that accentuate the positive.



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Wednesday, April 6, 2016

A "HOME" IS NOT A HOME

I shouldn't be here. I am not sick. I am not even sixty years old.(My only crime is that I cannot walk) But, the realty is, that I am. No one as young as I am should have to be here. You see things you should not see and hear things you shouldn't hear. 

Death is almost a weekly 
occurrence. There are residents here younger than I am. I guess I shouldn't complain.

I was asked what, if anything, could be done in a facility to make it more like home. An older resident might feel differently. In my opinion, nothing can be done to make a facility feel more like home.. Sure, you can hang pictures on the wall. Bring treasured possessions from home. But you sleep in a hospital bed, there is a nurse's station outside your door, they check your vitals and dispense medications. Being here is as close to being in a hospital as you can get. No matter what euphemism  you choose to use to .make it sound better. It's still an institution.

A younger resident, entering a facility, can expect a major culture Shock. No matter what you may have been told, nothing prepares for the reality and finality of life in a facility. There are days when living here is one hundred times worse than anything I could have imagined. But then there days like today, when everything goes smoothly.

You get used to being forgotten. This occurs because there are so many residents who need care. Many may be sicker than you are. Those people are cared for first. Last Monday, I was left in the bathroom for over an hour. You never get use to it. You just have to accept it.

You'll be ignored. Two aides may come into your room to help you, but they don't acknowledge you because they are too busy talking to each other. You get use to it.

Other residents yell for help. You'll try not to, but if you get left in the bathroom and don't have your call light, you'll find yourself yelling too.You'l be embarrassed,  but it will be the only recourse you have.

In order to survive in here you need a supportive family, A computer.Trust me, you'll go crazy without one. You need to find a staff member or two who listens and lets you talk to them when you need to. I  also enjoy the the company of two residents I eat  my meals with. Like me, they just do their own thing. No Bingo or crafts for them either.

I have not gone out very much this winter. I have been doing a lot of writing. Sometimes the hassle of public transportation and making sure I am up on time is just too tiring. I plan to start going out again. Get out of the facility whenever you can  You will feel better.

I hope this post can help a younger person entering a facility. All of my grammar my not be correct. But I hope my message is clear. I want them to know that I know the fear and uncertainty they may be feeling. I want them to know they are not alone.



























Monday, April 4, 2016

(DON'T) SEND IN THE CLOWNS

Coulrophobia. Ever heard of it? I hadn't. When I was little,  I had it and didn't even know it. Coulrophobia means fear of clowns, or more accurately, according to an online dictionary site,"extreme fear of clowns."


I don't know why, but when clowns would see me, they'd come right over to me. I guess they thought  I would be happy to see them. If there was a group of them it would feel like they were descending upon me. When  you are three or four years old, that's scary enough. Add to that the fact that I was disabled and could not get away from them on my own. That's really scary.

My mom always knew when a clown was nearby because I would tense up  and hide my face. I guess I was trying to hide from them.

When I'd have a high fever I'd have the Clown Dream. I would wake up terrified. And, watching The Joker from Batman, forget it. There was no way.

When I was in nursery school, my mom always made me a birthday cake in the shape of a clown's head What was she thinking?  The clown wore a party hat, had a ruffled collar and had a red  rubber ball for a nose. My mom was very proud of it. I remember seeing pictures of me with my nursery school class, sitting at a table eating the cake. I have to admit that the cake was cute. 

I was asked to appear on a local television children's program called Corky The Clown. They wanted me to help introduce the cartoons. My memory is a little fuzzy, but my mom must have explained my fear because it was arranged for me to watch Cliff St. James, The man behind the make-up, transform himself into Corky.  I was mesmerized as I watched him put his clown makeup on. I remember talking a lot. I told him I saw his wife on TV.  His wife Nancy did some local commercials. By the time he was finished putting his makeup on, I wasn't scared at all. In 2014, at the age of eighty-eight, Cliff St. James was inducted into the  Media Hall of fame. Corky the Clown was the first local program to air in color. Being on the show is a fond memory for me. I even had a clown at my tenth birthday party after appearing on it.

I wrote this because I found the subject fascinating. I thought you would too. I had no idea that my childhood fear of clowns is now considered a real phobia with a name and symptoms. I thought I was just weird. If only I'd known . 















Saturday, April 2, 2016

IT'S CLASSIC

I am a nerd. I say this because I don't watch  much TV.  I find watching the news to be depressing. I do not enjoy waking up to reports of someone being murdered overnight or hearing about bombs exploding around the globe killing innocent people who were just going about their daily lives. And, the presidential hopefuls, well I won't even go there. The nightly network shows don't interest me either.

I like classic television. Watching the television  shows I grew up with makes feel better if I am stressed. Watching classic television is like visiting with old friends.

I have slept with the television on every night since I have been here. If I wake up and hear Barney Miller, Newhart or Johnny Carson, I know I am not alone. Their\familiar voices bring me comfort.

I think many of these shows are still are relevant today. Take my favorite show, One Day at a Time, for example. Ann Romano was divorced raising her two daughters on her own. She had to prove herself in the male dominated world of advertising. .Later in the series, she and another woman opened their own advertising agency.  Pretty impressive for two single women in the seventies

And then, Ann had to come home and deal with all the issues that come with raising teenage girls. Her oldest daughter Julie was constantly rebelling against everything. From running away with her boyfriend to refusing to go to college. Ann and Julie clashed  regularly.. Barbara had her moments too. The girls had a party when Ann was  out-of-town/ Barbara had too much to drink.She suffered the consequences.

My favorite episode involves the building superintendent Dwayne Schneider. He was reluctant to have a young man who was mentally challenged work with him.  Schneider did not think the young would be able to handle the duties of the job.When there is a gas leak in the Romano apartment, Schneider's back is hurt.  He is unable to work. The young man proves that he can do the job. Under Schneider's direction, he is able to shun off the gas valve and save the apartment. The episode showed what a person with a disability can do if they are given a chance. The episode aired long before the passage of the ADA. This show was way ahead of it's time.

The shows may be a little corny, but they depict families talking at the dinner table not texting. From I Love Lucy to The Twilight Zone, Classic TV has something for everyone. Check it out.