My sister, Stephanie, came to live with me and my two daughters 2 years ago when my mother was hospitalized and passed away.
Stephanie is 56 and she lived with my mother all of her life. They were really joined at the hip. When my mom passed, I sat with Stephanie and my daughters, and I explained to her that her mommy was sick and went to sleep last night and didn’t wake up. She said nothing. Total silence. No one was breathing. I asked if she understood what I said. She said, “Yeah, Mommy died.” Then she cried for a few minutes and said “Ok. I’m finished. Mommy’s in heaven.”
Stephanie has intellectual disabilities and a lot of medical issues. She is legally blind and she’s diabetic. She has a lot of eye drops and medication for her diabetes. She is now totally blind in her left eye. I can never leave her alone in the apartment because she can’t see anything now.
One day Stephanie blacked out because her sugar dropped. She wouldn’t wake up. I didn’t know what to do. My mom had never taught me. I was so scared. I called 911. The ER doctor gave me a crash course on what to do until I was able to get her to her regular doctor.
Weekdays, I get up at 4 AM so that I have enough time to give her her eye drops and check her sugar before her bus comes to take her to her day program. Then I go to work. The home attendant picks her up from the bus. Both of my girls help. They are 22 and 28 years old. If I can’t get off from work on time, one of my daughters will come in and give her her eye drops and check her sugar because the home attendant can’t administer any medication. There have been days when the home attendant couldn’t come or was late and I’ve had to leave my job and come home get my sister. I thank God every day that my boss is so understanding.
We’re all exhausted in here. Everyone is totally exhausted. It’s topsy turvy in here.
If God forbid something happens to me, what’s going to happen to Stephanie? And what happens to my children—because she is not their responsibility. My girls are young ladies. I want them to live their lives. I want them to be free. I feel like I’m holding them hostage.
I’m desperate for Stephanie to be in a residence that can accommodate her. I want her to be happy and comfortable and I want them to be able to take good care of her.
I strongly prefer a Manhattan residence because I plan to take her home every weekend and I want to continue to go to her doctors’ appointments. If she were in another borough, I’d have to take the whole day off to do that.
There’s been very little development of new residences, and hardly any in Manhattan, because there’s not enough money in the budget. Most Manhattan individuals end up in another borough because real estate is too expensive to develop new residences here. It’s not fair to the families. Not fair to the individuals.
It’s not like anyone wishes anything bad for special needs children and adults, but they are not a priority. But they are a priority for somebody: for the folks that have special needs people in their families. Our legislators should fight for more money for residential development for families like mine that are just an accident away from an emergency.
