Even Caregivers Need Help


Stephen 115th Road

I don’t like to ask for help. I pride myself on being self-sufficient and when it comes to my personal needs I almost never ask for assistance.  However when it comes to my brother Stephen it is essential that I ask.  As I’ve gotten older there are some things that I can no longer do and driving is one of them.  That saga began with a minor stroke at age 49 in 2008 and retina surgery on my left eye in Jan. 2010. My vision is 20/100 so no driving for me. I can cope with that as New York City for the most part has excellent 24/7/365 transit service except to where my brother Stephen lives.  At one point there was a city bus that went out to his neighborhood but because of MTA budget cuts that bus line was eliminated.  Problem.

At first a solution presented itself in the form of Stephen’s Group Home dropping him off to me in Brooklyn upon my notifying them in advance for vacations, holidays, parties and his birthday.  This solution worked well until last weekend. But you posted pictures of you and Stephen having fun last weekend you say.  Yes but in order for me to get Stephen from his residence to my home sadly required a big fight with the manager/supervisor of his residence.

I am an organized person. Being that it is very difficult for me to get time off from my job I send in my requests well in advance.  Once I get the approval from my workplace manager I then tell my room-mate and mostly importantly the manager/supervisor of Stephen’s Group Home. I send follow-up emails.  I call to confirm.  Thinking everything was in place I called Stephen’s residence on the Saturday that they were supposed to bring him to me to find that none of the direct care workers had any idea that Stephen was coming for a Home Visit.

It was suggested by one of the staff that I choose another weekend!! As you can well imagine I was getting more angry and agitated by the moment. I kept calling. They hung up on me!! Finally I told them that I was coming up there! (Don’t ask how as I don’t drive.) That scared the shit out of them and the manager finally called me. Her first reaction was to yell and scream at me saying that it was my fault, that she was sick with the flu, etc….  By this time I was heated and changed into an angry Ghetto Bitch. Yes I cursed her out. Screamed and yelled back. I don’t like to be ugly but sometimes negotiation is out and force is in. Then I told her that I was going to call her boss the following Monday.  That was at 10:30 am.  Stephen appeared at 11:00 am.

I managed to put away my anger for the duration of Stephen’s visit but our visit was abbreviated by another staffer who kept calling me while Stephen and I were out enjoying the Brooklyn museum. This extremely rude woman continued to call me while Stephen and I worked on an art project. She insisted that their driver pick up Stephen immediately as they were short-staffed. As a result my time with Stephen was cut short.

I called the Director about this farce last Monday and my call again tomorrow to follow up on whether he intends to speak with his staff about their poor, rude and unprofessional behavior.

Here’s where the cry for help comes in.

Finally I told God that I CANNOT do this anymore by myself.  I’m tired mentally, physically and emotionally.  Last year after being hospitalized against my will at Kings County Hospital I was forced into going to therapy. I told the doctors there all the problems I’m having as a caregiver and asked if there was some practical way they could help me. They said No. Well at least she told the truth.  After that I never went back. Why waste my time with therapists when I need to find practical ways to help Stephen.

Stephen’s 55th Birthday Celebration

Stephen’s Birthday is May 3rd and I want to plan a small Birthday Party or outing for him. Bad enough I don’t get support from my job but to be insulted by the staff of his Residence is the straw that has broken the camel’s back.  I know that I’m supposed to remain positive, not say I can’t, be angry or any number of those dumb idiotic positive thinking, love, light, forgiveness bullshit I read about all the time but all those people who say those things are me. They don’t know or care to understand what I’m going through. They have no idea how difficult it is to hold down a full-time job and care for a developmentally disabled sibling with no support from my workplace or anyone else for that matter.

Some of my paternal cousins have rejected both Stephen and I because of his Autism. They even had the nerve to say to me back in 2012 that my mother did something to make Stephen “that way.”  Needless to say I Do Not speak to this branch of cousins and never will. Once you start talking mean about my mother or my brother you are on my shit list for life.

I am his primary caregiver. I have now reached the point in my care-giving attempts when I need help. Real physical Hands on assistance. I need to partner with someone who has a car and can drive me to and from Stephen’s Group Home in Bellerose, Queens.  I Live in Brownsville, Brooklyn.  If anyone out there in the New York City area can help me please email me ASAP. Yes I will pay you for gas.  Thanks.

 

Stephen_DeBorah_Jan1994