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

"Disability is a part of the rich tapestry of human diversity and something that nearly all of us will experience at some point in our lives," explains Jackie Dilworth, communications director at The Arc of the United States, a disability rights organization. "It's also a significant identity that defines how we experience the world. Yet people with disabilities have been marginalized and misunderstood for generations."

According to the CDC, 27 percent of the US population has some kind of disability — that's one in four people. And as Dilworth notes, most people will experience being disabled at some point in their lives, whether temporarily or permanently. In other words, disability pride and improving accessibility should matter to everyone. 

Source: https://www.womansday.com/life/a43964487/disability-pride-flag/#When%20Is%20Disability%20Pride%20month?

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. 

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