From Community to Nursing Home

“Can you please wash my hair?” I asked one of my caregivers, Brandi, “I’m going to a meeting tomorrow.”

Brandi always complained about washing my hair because the floor would get all wet. She was one of a series of agency employees who never showered me. Well, I still needed my hair washed. I belonged to a lot of committees and had meetings to attend. And I liked to look presentable. Even though she washed me, it wasn’t the same as having a shower. I felt like my rights were being violated.

After I got home from having hip replacement surgery in 2017, I needed 12 hours of care a day, because I could no longer crawl. I’d previously had staff who would meet my needs, like showering and preparing my meals. But after the surgery I needed help getting in and out of my wheelchair, going to and from the toilet, and getting in and out of bed. Some caregivers were nice; we would go out to lunch, go shopping, watch movies. But some were downright rude and selfish. All they thought about was themselves. And nobody wanted to come in on time.

A new home manager started in February of 2019. I thought Brandi was nice at first, but then she changed. She would come in later and later each day. I was supposed to have somebody there at 3:30 pm, for the afternoon shift. I would have to wear briefs, and I’d be soaked and wet. I was not happy. I wanted to say something, but I didn’t know who would believe me. I had so many problems with this agency. I just wanted to move. I didn’t feel safe in my own home.

I talked to my sister at the beginning of March, and she said she found a nursing home for my mom, and she thought I might like it too. I was nervous to give up my apartment. I thought I’d never have independence again. My mental health was getting worse and worse. Brandi was getting mad more often because my Medicaid was cut off. That meant the agency wasn’t getting paid, so she wasn’t getting paid. I did all the necessary paperwork, called the bank, but Medicaid still denied me. Brandi never offered to help, just blamed me. She was beginning to hibernate in my office. She ignored me and played games and watched movies on her tablet. She made it clear that she didn’t want to be there. I missed my mom more and more. But Brandi didn’t care.

I moved to Alamo Nursing Home in April of 2019. I was scared to make the move to a nursing home because I was afraid that my rights would be stripped away. I was afraid that I would be confined to my bed and be limited by strict rules and schedules. That isn’t true at all: I am able to go out whenever I want to, I get showers twice a week and a whirlpool bath once a week. I am encouraged to wear underwear during the day and tell someone when I have to go to the bathroom. I can go outside and read my book, and I go out with my mom. We sit on the porch together.

People told me that a nursing home would be hard to live in, that I wouldn’t have any rights. I feel like I have more rights than I did in my own apartment. At home, Brandi told me what time she needed to leave and then I would be stuck. She would always bring food for herself and eat it in my den and pretend I wasn’t there. She would be pissed when she had to work extra because somebody pulled out of a shift, but it wasn’t my fault.

Since I moved here in April, I have been going out regularly. I go to Wal-Mart, the library, and Panera Bread. I moved into my own room in the middle of July. The staff are friendly to me and encourage me to make my own decisions. So far, I’ve ridden a motorcycle twice, I get my nails done every week, and we have ice cream socials and happy hours. The nursing home allows people to live how they want to. This is so different from my own apartment. I would tell everyone who discouraged me that moving into a nursing home was the best decision for me. I used to feel like I had no choice at all. And now I have all the choices in the world. This is so much better for my mental health.