Hire This Bitch Advocate!

It is so hard to care and be strong for someone at the same time. As my brother’s advocate I’m a ferocious, tenacious, determined lioness. When his mental and physical health are out of synch I cannot afford to take the time to “feel.” I have to go into overdrive in a proverbial boat with only one paddle. My brother holds the other oar, which is not accessible when he’s in trouble.

It is so important to have both oars in place before you hit the rapids; namely, power of attorney and/or signed consent forms. When my brother is well he insists that he can take care of his own health care; he refuses to sign the necessary forms that allow me to navigate the system when he is not well. While not impossible to row with only one oar, it makes success more difficult and less likely.

For the last three weeks I have been riding the rapids with only one oar. My brother’s health was fairly stable; diabetes, high blood pressure and cholesterol, and mental illness…the waters were calm. Suddenly my brother was having seizures which were incredibly frightening not just for us but for the other tenants in his group home. What had changed?

 My brother told me that week he saw his psych doctor; they took him off Zoloft and put him on Prozac. That was the only change. The emergency medical teams gave him glucose, but he refused to go to the hospital; his blood sugar was around 45.  It had happened the night before but no one knew it; he was alone in his room and was embarrassed, so he didn’t tell anyone. The next day his blood sugars were low again and he walked into the emergency room. They gave him glucose and a sandwich and sent him home, knowing that the EMTs had treated him the day before. The following day he had another seizure and 911 was called; this time he went to the hospital.

As soon as I got a call from one of the group home employees, I called the hospital. My brother had told them not to talk to me about his medical condition. I told them that my brother’s directive did not include prohibiting their listening; I gave them an earful. I ran down the history of the past week along with his medication list, and the phone number of the In Home Supportive Services worker who took care of his meds. I also advised them that my brother should not be released until he was stable without medical intervention (IV glucose) for a long enough period of time. I gave them the names of his primary physician and his psych doctor. I told them that the only change was the Prozac, that I felt there was an interaction causing his blood sugar to crash, and that he had never had the problem when he was on Zoloft.  They listened.

After my brother’s release he was still having low blood sugars. They did not put him back on Zoloft and he was becoming increasingly paranoid and depressed and anxious. He was afraid he was going to die. He was not sleeping. He was disturbing the other residents at 3:00 a.m. because his blood sugar was low. Yet he was making excellent choices for diet. I called his primary physician; they listened. I called his psych nurse; she listened. Then I got a call from the house manager; he was at risk of losing his housing. Then I called the psych nurse again; she listened so well, that she spoke: “You just said the magic words. If he is at risk of losing his housing, we have the ability to intervene.”

Suddenly I had a voice; Donna from a special program at Behavioral Health called everyone to the table and they got together. I got a call from the physician’s nurse: “Your brother said I could talk to you about his meds.” They took him off one of his diabetes meds; his blood sugars are no longer low. They were talking about putting him back on Zoloft and would decide in a week.

That week was loooooooong. My poor brother, going through withdrawals from the antidepressant and worried he was going to die one day and fine the next, was labeled a psychotic and threatened with hospitalization. I intervened and brought forward his history, the full story about what was going on, and the demand that hospitalization was not necessary if he was self-aware and being supported. They listened.  

Today, it all came together; the rapids are calmed…a booster shot of Prolaxin, a prescription for Zoloft, and an observant nurse who will call the physician about the huge amounts of water my brother is drinking which only reduces body salts (increasing pressure on the brain and the thought process.)

Tuolumne County’s hospital was closed quite some years ago but they kept the Behavioral Health Hospital in tact for as long as the budget would allow. Five years ago, the budget ran out, the mental health hospital closed, and all they have is three beds that can only be occupied for 24 hours, and an awesome staff.  Without their listening and understanding, without their appreciation for advocates like me, where would I be?! I’d be up a creek without a single paddle. I shudder to think about what that would mean for my brother.

Now, and only now, can I “feel” as a sister. Now I can cry tears of fear, frustration, anger, hopelessness, and gratitude. I often feel that I am a “bitch” when I am an advocate; it makes me feel guilty and rude but I will be a bitch if that is what my brother, or any other client, needs me to be. Until the water calms, my brother and clients, and their families deserve peace of mind that their loved ones are being properly and accurately cared for.