When TJ was discharged from Mayo and a brain injury rehab facility, both times our plan was to take care of him at home. Both places were very concerned about it because of the amount of care he needed. They were concerned his care would be too much for us, and we would get burned out. They were right. It did take an enormous toll on us.
After reading last week’s sneak peek into a three-hour period of time into our lives, many of you may now be thinking, “OK. I get it. The care is overwhelming, but if he’s too much to take care of at home, why don’t you put him in a facility?” That’s the issue I would like to address in this second part of the Respite Care series.
Let me start by saying that in every hospital and care facility we were in, there were absolutely amazing, fantastic people working in every one of them. Several of these people I later had in my own home to take care of TJ from time to time. They worked very hard and were very compassionate to the people they served. Some we developed deep bonds with, and I still stay in touch with them. But as with anything in this life, there were some bad apples as well in these facilities, some workers who shouldn’t even be in health care taking care of helpless, defenseless people. Our experiences with these people are what I want to talk about in this posting.
After TJ’s injury in the spring of 2013 until Thanksgiving of 2014 when TJ came home for good, he was in and out of hospitals and rehab facilities. In the fall of 2013, he was in a facility for rehab, and his body was contracting and twisting severely. It was a terrible thing for a mother to watch. It was involuntary and he couldn’t control it. He was laying on his back, and when the muscle spasms hit, he would arch his back severely. It didn’t even look human. The position he was in was causing the end of his trach to press into the walls of his trachea closing the hole of his trach and cutting off his airway. I could tell he was struggling to breathe. I started panicking and told the RN who was standing by that he couldn’t breathe, and she responded, “Well, maybe that’s a good way for him to learn to quit arching his back like that then.” My mouth fell open at her response. I was shocked that a healthcare worker would say something like that. We weren’t talking about an arm or a leg. We were talking about his airway. At this point I was starting to realize that I would never be able to leave him alone when he was in a care facility.
That same facility would not let me stay overnight with TJ. After he had been there a couple of weeks, the morning of what turned out to be the last day he was there, I was arguing with his nurse over the phone because they weren’t keeping his lungs suctioned out, and he was having trouble breathing and would get upset and agitated. She would not listen to me and hung up on me. I was concerned about his respiratory needs and also frantic about the twisting his body was doing, and nobody seemed to be too concerned about it. When I arrived at the facility that morning, five or six staff members surrounded me. I tried to explain what my concerns were, and I didn’t feel like anybody was listening or was as concerned as I was. I saw one staff member roll her eyes at me. I finally said, “I just want to take him to the hospital. He just needs to go to the hospital.”
A short while later, the supervisor marched into TJ’s room and very irritatedly told me that they would call an ambulance to transport him to the hospital but that I would have to go by myself with TJ. It was protocol at this facility to send a nurse with a patient to the hospital, but I assume that because I made them mad and they didn’t feel like he needed to go to the hospital, she was not going to send a nurse with me. At this point I was crying and bewildered at the condition my son was in and at my inability to get anyone to listen to me, so I said that was fine and was just relieved he was going to the hospital.
When we got to the ER, after seeing the state TJ was in, the ER staff was also very concerned about his condition. I asked if he could be flown back up to Mayo, and they said, “Yes, that’s where he needs to be because they know him best.” Because of his trouble breathing–which no one at the rehab facility seemed to be too concerned about–the ER staff put him on a vent, loaded him up on a helicopter, and flew him back up to Mayo that morning. Although I was relieved to be returning to Mayo where I knew he would get exceptional care, the whole thing was terribly traumatic, and I felt, for the most part, that we were on our own.
After arriving at Mayo, the respiratory therapist suctioned and suctioned and suctioned. She said he was so full that it was like suctioning a bucket. After suctioning he was OK, and they took him off the vent and turned their attention to his twisting symptoms.
Fast forward now to sometime during the year of 2016 when TJ had been home about two years. One afternoon TJ and I were fighting about doing home therapy. We were always fighting about doing home therapy. I desperately wanted him to get better and have a life, and I also was concerned about what would happen to him once my body gave out and I couldn’t take care of him anymore. So I pushed him all the time to do his strengthening exercises at home so that he could hopefully become more independent. He resented it. One day, exasperated, I said to him, “TJ, why will you not do your therapy?! Why do I have to struggle with you all the time about this?!”
After fussing and crying and throwing a little bit of a tantrum, he finger spelled to me, “Because I was attacked and beat, and I feel hopeless, and I just can’t get motivated to do it!” I replied, “What?! What are you talking about?” He then went on to tell me that one of the workers at a rehab facility he had been in had abused him. He told me who the man was, and then I began remembering some earlier encounters we had had with this man.
Toward the end of TJ’s stay at a different rehab facility, we were in the process of transitioning TJ to home on a full-time basis. We were building a room onto our house for him, and it wasn’t quite done yet. He had been there a very long time, and he was miserable and crying all of the time. At this point in time, his hands were too twisty to finger spell, so I thought his crying was because he was sick of being there and wanted to come home so badly. We had no accessible shower for him at that point, and I couldn’t get him up the stairs to shower him, so the solution I came up with was I would be with him every day of the week during the daylight hours, and he would come home after lunch on Friday and stay all weekend until Sunday evening. All he basically had to do was sleep there alone, and then either I would be there or he would be at home. I thought that was reasonable and would help him get through the short remainder of his stay there while we finished building his room. He still cried and didn’t like it and it frustrated me.
One Sunday evening as I was returning him to the care facility, one of the male workers came out to the van to help me carry in all of his equipment. When we got in the room, the man went into the bathroom and turned on TJ’s shower. TJ then made a noise I had never heard him make before. It was like a whimper. I was alerted and my antennas went up. When the man left the room to go back out to the van, I asked TJ, “Has something happened to you, TJ? Is there something wrong?” He stared at the floor, paused for awhile and seemed to be thinking, and then he slowly moved his feet back and forth which was the signal for “no.” I felt relieved and thought everything was OK and went back to getting him settled in.
The conversation below is the conversation I had with TJ two years later when we were fighting about therapy. He finger spelled the entire conversation, and it took us a week to write.
Kelly: How did they find out that you didn’t like Ricky?*
TJ: I think I started to hate both the DON and Ricky after I had asked that the cameras need to be checked.
Kelly: How did you communicate that to them? And who did you tell?
TJ: The first was my speech therapist, Marcy.*
Kelly: Did you use your communication device to tell her?
TJ: Thumbs up.
Kelly: What did you say?
TJ: I asked her if she could check the cameras.
Kelly: What did she say?
TJ: She said, “I will.”
Kelly: Do you know if she ever did?
TJ: No. I don’t know if she ever did.
Kelly: Did Ricky find out you told Marcy to check the cameras?
Kelly: What happened?
TJ: That was the first time I got beat.
Kelly: OK. So you didn’t start getting beat until after that. So why were you telling them to check the cameras? What were you wanting them to see?
TJ: Him taking my iPad.
Kelly: Larry* and David* had been taking it up to that time too. Did Larry and David do anything to you?
Kelly: Can you give me the details of that first beating?
Kelly: Well, what are we going to do then because we have to know what happened? They need this information.
TJ: It’s mainly because I don’t remember.
Kelly: Why don’t you remember?
TJ: Because he hit me.
TJ: On the top of my head.
Kelly: How long after you told Marcy did it happen?
TJ: That I don’t know.
Kelly: Rough estimate?
TJ: I think it was a day or so.
Kelly: OK. Now describe as much as you can remember about that first time.
TJ: Harry Potter was playing on TV. It was after 12 o’clock. All I can remember is a deep voice, dark person coming in my room. I also remember him saying snitch.
Kelly: Anything else you can tell me about that?
TJ: I woke up around 2 o’clock. I thought this couldn’t happen and I fell back to sleep. I woke up at 7 o’clock the next day.
Kelly: Tell me about the next assault and anything that happened in between there.
TJ: I remember this day because it was really cold outside at the time. Ann*, PT, was being really offish with me and I just wanted to scream at her and say what the heck had happened to me but I know I couldn’t.
Kelly: Is this significant to you because you were hurting inside and you couldn’t tell anybody and Ann was probably pushing you and you just wanted to cry?
TJ: Thumbs up. (Crying.)
Kelly: Can you tell me about the second attack?
TJ: This is what happened. It was a lot like the first time, but he said something about my crying BS.
Kelly: So everybody knew you were crying then?
TJ: Thumbs up. Besides that, everything was the same.
Kelly: Did he hit you in the head again?
Kelly: Did it knock you out or daze you again?
TJ: Thumbs up.
Kelly: Same time of day?
TJ: Thumbs up.
Kelly: How soon after the first attack did the second attack happen?
TJ: One month.
Kelly: Did anything trigger it?
TJ: I think it was all the crying I did in front of you (pointing to mom). All of the attacks were pretty much the same. Once I woke up and I remember having trouble breathing. The third, fourth, and fifth attacks were because I was crying in front of you.
Kelly: Each time did he knock you out or were you dazed?
TJ: I remember being dazed four out of the five times.
Kelly: OK. Talk about what else was happening there that you were upset about.
TJ: All I can say is you are going to be mad. One time one of the CNAs came in and pulled the call light out of the room, between 5-10 times. Another time it was the CNA that dropped the F-bomb while I was showering. Then about eight weeks later the same CNA came into my room and literally had laid down on the floor to pull away my call light because I was in the eagle nest.
Kelly: Why did they take your call light away?
TJ: That I don’t know.
Kelly: Do you think you were hitting it too much?
TJ: Thumbs up.
Kelly: Why were you hitting it a lot?
TJ: Because I needed something.
Kelly: What kinds of things were you needing that you kept calling and calling about?
TJ: Being suctioned and bathroom and things. One time I remember having to go to the bathroom so I hit the call button and I peed and pooped my pants and I had to wait for hours to be changed.
Kelly: Why did it take so long?
TJ: I had Liam* and a blonde girl working on my hall and they came in my room, looked at me and left.
Kelly: Did Ricky say mean things to you?
TJ: He was extremely mean to me. If I had an accident he would say something like, “Oh my God! Why do you always have to piss and [expletive] every [expletive] day?” That’s all I can remember.
Kelly: Was he rough with you?
TJ: Thumbs up.
Kelly: Was he just angry and mad?
TJ: Thumbs up.
Kelly: Was that every time you had an accident he would be like that?
TJ: Thumbs up.
Kelly: Were there other people who would get angry too?
TJ: Thumbs down.
Kelly: Was Ricky in your room alone when that was going on?
TJ: Thumbs up.
Before I started recording our conversation, TJ asked, “Mom, do you remember how when you were there, he was always standing outside of my room?” I had forgotten all about that. When I was there visiting TJ in the evenings, the man was always outside of TJ’s room which was unusual. Nobody ever did that. I remember wondering what he was doing out there all the time, but because I was so naive, I thought at the time that it was great. Usually I could never find anybody when I needed something, but he was always right there. I never put it together that it was because he was listening to what TJ was telling me. TJ cried and cried the whole time I was there, and I never knew why, but the man heard it and he knew why. After I left for the night, he would return to TJ’s room and hit him in the head for crying to me. TJ also told me that he threatened him, told him he knew where he lived and would hurt me and his sisters if he ever told anyone.
After learning all of this, it started making sense why he always wanted his iPad in bed with him when I left for the evening. It was a big ordeal every night. I couldn’t figure out why he always wanted his iPad because he couldn’t use it. We only had it there so the nurses could play music on it for him.
Travis and I both felt terribly guilty that we didn’t pick up on the fact that something was wrong and that we didn’t take his crying more seriously. The man terrorized him. We just never dreamed that somebody would do something like this.
There was also a female worker who called him names while he was in the shower. His trach was not covered when he was in the shower. They just left it wide open, and I never realized they weren’t using a guard until right at the very end of his stay there. I just assumed they were being safe. I’m guessing what probably happened during the shower was he was getting water down his trach, couldn’t breathe, and started going crazy. The female worker got sick of it and called him a “[expletive] psycho.” He told on her, and after that incident she was removed from his hallway and was not allowed on his floor again but apparently would later come back and remove his call light if she heard he was using it too much.
I believe the reason why some workers were pulling out his call light was because communication was so difficult and they didn’t want to take the time to figure out what he needed, so they would just walk in the room, turn it off, walk back out, and then he would call them again. I believe it is actually against the law for patients to not have a call light. Also he was trached, and if the trach came out, he wouldn’t have been able to get a hold of anyone.
TJ also reminded me of a time when I had seen his call light unplugged. I had forgotten about that as well. When I asked the nurse why his call light was unplugged, the nurse said, “Oh, I don’t know how that happened,” and plugged it back in. I just thought it was an accident and really didn’t think much more about it. TJ told me a CNA had unplugged it that morning.
There were many good nurses, but TJ was so complicated, and sometimes they didn’t always understand his needs. Other times I assume they just thought I was an over-the-top, crazy mother and didn’t know what I was talking about. But one particular time, I was sick and wasn’t able to go to the facility where TJ was. I was worried about him, so my husband went to check on him. When he walked into the room, TJ was covered in secretions all down the front of him, and he was crying, agitated, and very upset. His nurse came in, and because of his agitation, she was going to give him some medications which would make him drowsy. Travis told her that the problem was he couldn’t breathe and he needed suctioned. He started suctioning then and an enormous amount of stuff came out of his trach and lungs.
After TJ came home, a social worker visited us once a month. The first thing she told me when she took on our case was to keep TJ out of the nursing homes and group homes because they were not good. She said he won’t make it. She went on to tell me that there was a man who was very similar to TJ who was in a nursing home. At night he had a machine that he was connected to because he would stop breathing. One night they forgot to plug his machine in, and he stopped breathing and died. She said he would have laid there knowing what was happening the whole time and wasn’t able to contact anyone.
For these reasons, even though it was very difficult and at times almost too much, we knew we had to do everything we could to take care of our son at home. During his time at home, a black cloud that we tried to ignore hung over us. We knew one day our bodies would give out and we wouldn’t be able to take care of him at home anymore, and then what would happen to him?
As I stated last week, my goal is to raise awareness about the challenges families with special needs or brain injured loved ones are facing. I believe there are people who care but are unaware of what’s really going on in the brain injury and special needs communities.
I no longer need to be in the special needs community…..but I cannot leave it. My eyes were opened when we entered this whole new world that I knew nothing about. I was shocked to see how poorly families and people with special needs are treated, dismayed that there was no help available, and frustrated because it seemed like many did not care. In response to the Holy Spirit’s nudging, I felt I needed to do something, anything to help improve the lives of special needs families, so I’ve begun writing about our experiences.
There are all different levels of severity of special needs and brain injured, and not everyone is in the same dire circumstances that we were in. On one end of the spectrum, some have challenges and frustrations but are able to manage them, for the most part, and maybe just need a few hours of respite every few weeks. But then on the other end of the spectrum, there are families like us with extreme cases who get no respite and are desperate and feel there is no help available and nowhere to turn.
This is an enormous problem, and I am just one person. My hope is that as people become educated about the needs in these communities, more will get on board to help make a difference so that lasting change for the better can occur for these families.
*Names have been changed.