Briana, I miss you. Nobody prepares you for how much it will hurt. Nobody prepares you to realize that you will even miss the challenges. Nobody prepares you that even now that you don’t have the challenges you had; you wish you had them back because your sibling would be alive. My sister was diagnosed with Asperger’s Syndrome when she was 22. Before that, the things that came with knowing that and learning about Asperger’s made it seem like she was only a spoiled rotten brat and caused a lot of conflict as we grew up and as very young adults.
My parents didn’t do anything to get her diagnosed until a friend of her suggested that she might have Asperger’s to our grandmother (our father’s mother) and then she wrote to Daddy telling him about this. I was the one that brought her to most of her appointments I was the one that went to counseling sessions with her. I wasn’t happy that our parents did not go with her, but it ended up being a good thing that I went. Our parents passed away early. Our Daddy passed away when I was 25 (my sister was 24) and our Mama passed away when I was 30 (my sister was 28). I know that doesn’t seem right, but it has to do with the exact dates of when our parents passed and when our birthdays are.
While our Mama was sick, my sister and I even looked for housing outside of our house that we all bought when our Daddy passed away because our Mama became moody and sometimes suicidal. Briana had said that she had even heard my Mama threaten to kill me. I had never heard this, but I knew that I couldn’t handle her. She would fall on top of me and then not get up and yell at me that I couldn’t lift her and Briana would be there to witness this. Briana was afraid of what she would do to me. Our Mama was finally hospitalized and sent to a nursing home after a lot of struggle, so it became Bridget and Briana, just the two of us. I loved being with Briana, but it was always difficult.
For a long time, it seemed like people thought we were a couple. We never thought there was anything wrong with homosexuals, but we hated that people didn’t seem to realize that we were sisters. People often though when I mentioned Briana that she was my daughter. That always bothered me because Briana was only a year and a half younger than me. It also got irritating when people would refer to us as “the girls.” Sure, our parents did that, but we were their daughter, and thus their girls. We weren’t other people’s girls.
Taking care of Briana was always a challenge, but she was more aware of things. She would also be super helpful at times. She insisted that doing laundry was her job. I never made her do laundry. I never made her do all of the work once we had to start going to the laundromat. She did it on her own and it was time we got to spend together in public where it seemed that people understood we were sisters. She would wash out the tub when it was needed washing. For some reason, we had terrible bathtubs in the house that we bought. They never rinse out like tubs should. At home, I would constantly be on her about picking up after her dogs and training them as she never did those things. I always had to make sure to ask her if she washed her hands when she was supposed to wash them. I had to make sure she washed dishes correctly when she washed them. I would have to let her know when she needed to take a shower. I know it sounds mean, but we had our own way of talking and I could be honest with her. It was just a calm statement with no overacting. I would tell her, “You stink. You need to go take a shower.”
Communicating with her was difficult. Others would get upset when I would post things on her Facebook page publically, but they did not understand the importance of it being there for others to see to be able to try to keep her on task. I was terrible when I was alone after she was the victim of a hit and run in the summer of 2016. I ended up having a gall bladder attack and since she was already in the same hospital where I went, she met me down in the ER when she was notified that I was there. The doctor prescribed oxycodone for my pain and that gave me the worst fears and nightmare and Briana was there for me the entire year that I was experiencing withdrawal symptoms. I had also been prescribed Losartan and that gave me horrible anxiety. I had a buzzing like a mix of bees and an appliance buzzing, but not like hearing it from the outside, but rather it coming from the inside of my head and enveloping it and having it consume my whole body. Briana was there when I would tell her that I needed somebody with me. It was terrible anxiety to where I couldn’t be alone even in the bathroom. Briana understood and would come into the bathroom with me. She would come into my room to keep me company.
I am pretty sure that Briana had other undiagnosed things with her because not everything was explained by Asperger’s, even with the added challenges that she had with having Harrington rods from surgery for scoliosis and kyphosis and her awkward gait and limited range of motion. She would make huge messes and blame others for them and then not see that she made such a huge mess. I finally caught her one time and she was literally in a trance. I couldn’t get her attention away from the mess that she was making. She was convinced that she was looking for something. She got worse quickly.
For about a year, she would have problems with bradycardia, but the hospital would always send her back and her doctor never thought it was an issue because Briana liked to ride her adult trike and walk her dogs along as she rode it, so her doctor thought it was a result of her being active. Briana started loving aspects of theatre as I got my Masters of Arts in theatre and got into participating in all kinds of community and college theatre. She even made an app that played sounds for my production as I had to be everything backstage because everybody else was busy with other productions happening at the time. Briana helped me to find props and design costumes. She even acted in the production because I needed an actor. She fell in love with the part even though she wasn’t really fit for it.
It was at a theatre production that that she fell in a green room bathroom. I think that her sickness caused her fall, but it is uncertain if the fall caused her sickness or the sickness caused her fall. It was from this point on that I really felt like I started to lose my lovely sister, though I tried to keep her and at first, I thought maybe I had her. She was brought to the ER and even though they kept her overnight and had some monitor on her with her heart, they released her and when she was brought to where I was, she was not steady at all. I and many others thought she had a concussion from symptoms that I mentioned and I called her doctor and the office had me bring her immediately. She kept getting worse and saying that she felt upside down when she was on the doctor’s table. Her doctor said to bring her to the hospital, so I immediately brought her to the closest hospital. They didn’t help with the things that she needed like going to the bathroom and helping her to eat.
When I was at home after getting her there, I was called and told that she was sent up to the ICU because she went into respiratory distress. This all happened in March 2019. A doctor treated her for pneumonia, but they could not find exactly what was wrong. She kept having problems with aspiration and had a PEG tube inserted to help her eat.
There was a night that they lost her in the system. I called the hospital she was at twice and they couldn’t find her. I called the other hospitals and they couldn’t find her. I had a friend calling and they wouldn’t give her information. The other hospitals said that she wasn’t there. I finally called the ICU and they told me they sent her to LTAC. That was a horrible place. It was connected to the main hospital, but not owned by them. They barely did anything and never tried to help her get better. They let the PEG tube feeding spill on the floor and they didn’t feed her correctly with it. Instead of giving her timed feedings, they kept it running all day. They did try to get her to eat and the speech therapist worked with her. The doctors got mad at me for asking the speech therapist for information, but they doctors wouldn’t give me information.
The doctors also lied about my service dogs (and one was both of ours) and said they were bringing infections into the hospital. They made me sister feel better, though. At first, I thought problems had been worked out. There were some nurses who knew service dog law, but we would have to be careful so the doctors and the administrator (who didn’t care about the people or patients at all) not see my service dog. The little one that was both of ours couldn’t come at all and that was sad.
She was eventually sent to a local nursing home. At least I could visit her there and the dogs were allowed to visit as dogs are allowed to visit there as long as they have their rabies vaccinations and are friendly. However, the nursing home sent her back home early, too. They insisted that therapy did all they could do with her. Yet, when they brought her out, she was wobbling and couldn’t stand on her own. She was home for a tiny bit, but the home health care workers that were supposed to set up times to come were terrible. They wouldn’t set up times at least a day in advance. Instead, they would call the day of and then they’d not even always come. We had people who would call the day that they were supposed to come and set up a time, and then they would call and say they would be an hour later and call again and say an hour later, and then call again and say they couldn’t come.
Since Briana wanted to eat by mouth and the goal was to get her to eat by mouth, I took her out to Burger King. Adult Protective Services and some people from another organization called Evergreen Life Services convinced Briana to go to a group home. That one was not a medical group home and we thought she was getting better. She was making friends and she loved working at the thrift shop where they had her. They even took the people at the house to church services on Sundays and that made her happy. However, Briana got really sick with the aspiration problem again in October 2019.
While she was in the hospital, it was decided that it would be best if she went to a medical group home. Evergreen did not try to place her in a group home that was decent for her. Instead, they just found any medical group homes decent for a young adult. Instead, they sent her to a group home that was at least a two hour drive away from my house that was only full of old people who couldn’t talk or interact with her. She wouldn’t have minded being with older people as long as she could’ve interacted with them. The people at that group home made her stay in a dark house. All they ever let her do was stay in bed or sit in a chair. They never even took her outside to just enjoy the sun on sunny days.
I was looking for a job, so I did not have money to visit her. They never told me when Briana was sent up to the hospital. The first time she was at the hospital, I found out because Briana had the hospital call me. The next time she was in the hospital, I could never find her and I was worried that she had tried to escape and was out on the streets of Baton Rouge as the city she was in was near Baton Rouge.
Every time I called the group home, if Briana was in the hospital, all they ever said was that she couldn’t come to the phone right then which didn’t help because they would also say that when she was sleeping, in the bathroom, or otherwise occupied or they were just too lazy to get her or to bring her the phone. Briana was never supposed to have any antidepressants as they cause problems with our family, but Evergreen didn’t listen and they were putting Wellbutrin in Briana’s PEG tube feeding. It is what was making her keep asking why she was there and not understand things. She eventually got them to stop giving her the Wellbutrin and her mind cleared up.
Eventually, when she was in the hospital one time, they decided that her medical issues were too much for them and that she would have to go to a nursing home. Of course, I was concerned about COVID. Briana was much happier in the nursing home and they actually communicated with me. They would let me know when Briana went to the hospital. The doctor at the hospital would call me, but him asking how long she had been “like that,” which didn’t help because how could I tell them anything when I hadn’t seen her in months? The nursing home had Briana taking something to break up secretions and had her eating by mouth for a bit of time and she was happy about that. She would eat breakfast all the time. However, she had problems with aspiration and they would have to go back to feeding her through her PEG tube. They never notified me that her legs were impaired, though. Briana told me that in a Facebook chat.
Briana made the decision that she wanted to be on comfort care rather than keeping her alive no matter what. She wanted to eat by mouth. She let a doctor at the hospital know that. I was notified of her death only a day or two after the nursing home was going to start allowing visits and they had to be scheduled and would have only been for 30 minutes. Thankfully, the nursing home was gentle about notifying me. Yet, people didn’t get to know the real Briana in any of those situations. There are so many lovely things that I miss about my sister. She would make up songs while she did chores. They were often funny and I loved hearing them. Sometimes she would be silly with existing songs. Sometimes she would put new words to a familiar tune. She liked hugs and liked to cuddle. She loved dogs. She wrote fun poems. Sometimes she wrote serious poems, but she loved writing fun poems. I had to find my own way to navigate living with her with only guidance to see what worked and what didn’t.
People think it is easier without her and perhaps, in a way, there’s an easier component, but I never wanted my sister to die. I never wanted her to be so sick. I loved having her with me and as moral support even with the troubles that arose with that. Many people refused to see beyond what they considered problems. I wish they could have seen the love and help and support that existed. I wish they would’ve looked at my sister for who she really was and not at the problems. I wish they would have leaned toward education to help her and not criticizing and ostracizing her. It really hurts that they didn’t look past problems. And I know that other people are doing that to other sibs and it hurts to know that it is happening.
Written by Bridget Ilene Delaney | Louisiana Sibling
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