THE FLIP SIDE

In my previous post, I discussed the positive aspects of living in a group home. I fought to get out of LTC. I went against my family. I would not listen to anyone. A group home was the answer to my prayers  I was sure of it.

I am not discounting anything I wrote in my previous post.  I enjoy living in a group home for all the reasons I discussed. 

Hindsight is 20/20.  If had known in 2018 what I know now I might have chosen to move to another nursing home when the activities and choice of meal options at the one I lived in were streamlined. I might have chosen a group home. I came here to live my life. There is always a stipulation or condition to everything I ask to do. They tell me I am an adult. I am my own person. Most of the time it does not feel that way,

I continue to enjoy writing for this agency's newsletter. I am grateful to have the opportunity.

 

 I am glad the staff can no longer take me to purchase my cocktails  All the rumors, finger-pointing, and blame will stop. If it was such an issue the policy should have remained I effect. Cocktails in a restaurant or with friends are more fun anyway.

I miss Happy Hour, the ice cream social, and pet therapy, (Dogs are not allowed in the house.) Ordering take-out with my tablemates and theme days. What I miss the most is talking to people.

Most of my resident friends have passed away. My staff friends have moved on. My old nursing home is under new management. It's not the same anymore 

I have the same feeling of apprehension and dread now that I did when I was told I was getting a roommate in the nursing home. The difference is all my staff friends stopped by on the day my roommate moved in. My therapist came by too. Everyone knew how upsetting getting a roommate was for me. Here, no one cares. It's not their problem. It's a business decision.

Reading this I am sure you are confused. I know I am. I do not know what would be the best option for me. I better decide quickly. August 1st is fast approaching. The only thing I know for certain is that I am scared.

I am disappointed in my case manager's lack of assistance. He put me on the list for an accessible group home but when it comes to researching and calling nursing homes that task has been left entirely up to me. It's embarrassing when contacts inquire about my case manager and tell me he should be making the inquiries for me. They want to know about my care plan. They want to talk to him not me. 

Today I am leaning toward going to a good Medicaid skilled nursing facility. Tomorrow I might lean the other way again. Waffling is my biggest problem.

When I talk about the things I deserve I am called an Elitist. I am better than no one. I want a good life and good care from staff who care.  I want the same for the ladies I have lived with for the past five years.

And if it's not too much to ask...

A patio, a Margarita, and good conversation. 

 

 

A PATIO, A MARGARITA, AND GOOD CONVERSATION

They are looking for a new place for me to live. There are lots of changes going into effect here. This is to become an all-male house. A man is moving in by August 1st even though my female housemate and I are still living here.  I  am scared because all the current staff appear to be leaving this house when the new housemate moves in. I hope this is not true.

My case manager told me there are no wheelchair-accessible houses available. I am on the list, but I may have to consider a nursing home. That's not what I want. I like getting my own vegan groceries. I like having my own room and toilet. 

I can no longer go to the grocery store with staff to purchase my weekly cocktail. My friends can bring them or I can go out to have one. Cocktails were never a part of the staff's duties. They were just being nice. The agency broke the rule for me. I will always appreciate that. Several months ago DMH said that I could no longer have alone time to go on unaccompanied walks around the neighborhood. Needless to say, I  have been bummed out. 

\ am 66 years old. People my age are enjoying their summer at the lake or by the ocean. People my age are enjoying their retirement.  I am scared. I am tired. I am healthy. We all know life can change in an instant]  At my age I should be able to live my life the way I choose to. It should not matter that I am disabled.

It does not take much to make me happy.  All I want is a pato when I can have a Margarita. I want to have a good conversation too.

I have had great times with my friends on the patio here. We shared Margaritas. We laughed until we could not breathe. I am grateful. I hope I will continue having fun times like these.

 

Birthday on the Patio 2019

 

Celebrating on the Patio in 2022

Celebrating on the Patio in 2023

WE FIGHT

According to the CDC, 27 percent of the US population has some kind of disability. That translates to one in four people.  Most people will experience being disabled at some point, either temporarily or permanently. Disability pride and improving accessibility should matter to everyone. 

Everyday.

 We fight to be seen.

We fight to be heard.

We fight to be accepted.

Not ignored.

We fight.

We fight for better healthcare.

We fight for better educational opportunities 

We fight for more employment opportunities.

Reasonable accommodations.

Attendant care.

We fight.

We fight for accessibility.

Accessible architecture.

No more being denied entrance.

Reliable transportation

We fight.

We fight discrimination.

We fight stereotypes.

We fight to prove we are worthy 

We fight to prove we are good enough.

We fight to prove we are intelligent.

We fight. 

We hold rallies.

We speak to  our legislators 

We beg them not to forget about us.

Open your hearts.

Open your minds.

Change the laws.

We fight.

Do not institutionalize us.

We live with the knowledge that we are one step away.

Do not shut us out.

The Ugly Laws are no more.

We fight.

We have God-given gifts

Let us show how we can contribute.

Make the world a better place.

We fight.

We fight.

And we will continue.

Until the world knows.

That we are equal.

That we belong. 

Be proud of who you are. You can show your disability pride by helping to raise awareness. Remember, however, that your disability is not who you are. It does not define you. It just is. Celebrate not only your disability. Celebrate your gifts and talents as well.

The ADA was passed on July 26, 1990.  We have come far. But not far enough.

I CHOOSE TO BE HAPPY

 

I  can't change the past. 

Mistakes? 

I owned mine.

Apologized. 

I  want to start anew.

I choose to be happy.

Stay or go?
I don't know

Talk is swirling around.

I try not to listen.

Rumors abound.

Like Scarlett...

I will think about that tomorrow. 

Today...

I choose to be happy.

Come on. 

Let's have some fun.  You can rest another day. 

It's gorgeous out.

I don't want to sit in the house

Please take me to the store. on a ride, anywhere.

Please don't rush. 

We might miss something awesome.
I can't change the staff.
Just how I react.
I choose to be happy.


The photo in this post is from community week 2023.
The week ended with a picnic.
Ribs, chicken, and burgers.
Community, clients, togetherness
I did the prize walk.
Imagine that.
I choose to be happy.

I see myself sitting outside on the patio.

Eating sushi and drinking a Margarita.

I am a Golden Girl on Wheels.

I choose to be happy.

.

 

IT'S MY PARTY AND I'LL CRY IF I WANT TO

 

"It would be better for everyone if you weren't here."   

Geez, tell me how you really feel. These sweet, encouraging words were said to me by a staff member. A great start to my Sunday. A great way to kick off my birthday week.

I have been working hard at changing how I respond and react to the staff in behavior therapy.  I keep a gratitude journal. I try to write something in it that's positive even when I don't feel grateful or positive. I hung out at the office working on the agency's newsletter. I was happy. (Can you believe it?) I began to think that I could make it here after all.

B.C. (Before Covid) clients would celebrate their birthdays by inviting other agency houses to celebrate their special day with them. I have lived here for almost five years and while I know some of the SCs, I have met very few of the clients.  I was determined that my party was going to change that. It was going to be awesome. Who doesn't like big cupcakes and mint chocolate chip ice cream?  The email invitation I created was funny and my Bitmoji was the cutest. I hit send.

"You knew nobody was going come to your party," a staff member told me the day before. "You don"t participate. They don't know you. (I"'m trying. I hoped hosting a party would change that.) I received zero replies. I asked my support staff to come. "I ain't coming to your party.  I ain't working that day. I don't care. Don't ask me about your party again." That was one staff member's response.  The good news is I saved a lot of money.  My party would have been epic. It's their loss.

When I was thirteen I had a slumber party for my birthday. We ate junk and stayed up giggling listening to our playlist of 45s. I looked so cool in my blue and yellow lounging pajamas with big flowers on them. We were in sleeping bags on our family room floor.  None of us got any sleep, but we had a lot of fun,

For my sixtieth birthday, my brother bought everyone at my table in the nursing home Chinese food, cupcakes, and saki. It was fun celebrating with friends.  

In other years in the nursing home, my staff friends. Chris and Julie would have a sushi birthday lunch with me.

This year no matter what my birthday will be one to remember. 

I wrote this post because  I was bummed that nobody here gave me a chance. I am trying to be accepted here. I did not write it to beg for a party. If I am begging for anything it is acceptance.

"It would be better for everyone if you weren't here."    

Well, I am here dammit. Deal with it. I rock.

Sing it, Lesley. Sing it loud. Sing it proud.

 

ENDINGS

Endings

.Life...Death.

.Childhood...adulthood

Jobs...We retire

Marriages...Divorce.

Formal education...Graduation.

Our favorite book...Sadness

TV series we love...Tears

A delicious meal...Satiation

A house...Moving

All of us experience endings in our lives. You can probably add more to my list. The most difficult one for me, besides losing someone to death, is the ending of a friendship. When I become friends with someone from the moment we meet I am wondering why this person is interested in talking to me. They're cool. I'm not. They had life experiences that I will never have. So, I tell myself to enjoy it while it lasts. Because as much as we pledge to be BFFs forever, from the moment I meet someone new, I  brace myself for the ending that I know will inevitably come.   I have to.  otherwise, I'd be a mess for the rest of my life.

Whenever I am happy. Whenever feel a sense of acceptance and belonging something is wrong. I sit and silently wait for the other shoe to drop. and ruin my mood and my day. When it does I smile to myself and say, "I told you so."  I get so close. I never truly belong.

Friends move on. I am left wondering what happened.  It has made me a stronger person. I am grateful. I want to thank the friends I have lost touch with.  They let me into their lives for a little while. I learned from each friendship. We had fun and made memories that I cherish.  Lives move in different directions. Forever is a myth.

The good news is that endings mean new beginnings. 

MEDICAL ACCESSIBILITY FOR ALL

Hoyer Lift Manufactured by Drive Medical

Physicians, dentists, ophthalmologists, podiatrists, and any other medical professionals—listen up. Architects, too. My message is for you. 

Medical accessibility for all

Physicians, if you want us up on your exam table, have a Hoyer Lift in your office to make our transfers safe and stable. 

Medical accessibility for all.

Do not expect our caregivers, relatives, or friends to lift us onto the table. It's not their job. Their job is to offer us support. Not lift us. It's your job to have the necessary provisions in place. Hospitals also need to have Hoyer Lifts. One on every patient floor. 

Medical accessibility for all.

Permit me to list what needs to be fixed.

Your exam rooms are small. With narrow doorways.

Our manual/powerchairs are big. 

We need room to move around to get in the right spot.

Make sure all of the machines used for the running of various tests are accessible. 

Medical accessibility for all.

Some of us have lifts that were used when we got them.

Some lifts being used are so old that no one will repair them.

Yet insurance won't approve a new lift.

The same for a hospital bed.

No matter how old, if  it still works,

It's good enough.

Medical accessibility for all.

Good medical care.

Good equipment.

We deserve it.

We demand it.

Do not cut costs at our expense.

Medical accessibility for all.