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?
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.