Here at Nami Dearest, we’re not really crazy about giving a voice to alternate views. But this guest editorial, by someone who wishes to protect the anonymity of her friends, is by someone who has some blackmail material on me. So in the interest of not having certain dirty secrets go public, I present a serious editorial by Ms. X.
Helping your mentally ill family member
by Ms. X
For the first time, I am truly looking at “mental illness” from the perspective of a caregiver, a concerned friend of a woman I’ve cared about for over 15 years. I can genuinely say I get it now. I understand the fear, the frustration, and that inability to fix my friend with a magic bullet.
I have empathy and perhaps a touch of solidarity with NAMI folks. But in the end, it has absolutely reinforced my belief that NAMI types (NAMI parents, Kendra’s Law soldiers, DJ Jaffe, Torrey, Satel and friends) want the easiest way out, and they want a clear conscience.
Let’s look at my friend’s situation. I’ll call her Sophie. She would be a typical NAMI subject: she was diagnosed with various mental illnesses in the prime of her life. Her family didn’t know what to do with her, so they had her put into a psych ward against her will. They tried drugs, which didn’t work, and then they tried electroshock. That didn’t do much good, either.
But Sophie did eventually get better, despite the drugs and shock and other mistreatments. Her family didn’t like the fact that she refused to take the drugs that didn’t work anyway, and she’d always been a rebel. Over-the-top brilliant, an IQ that was off the charts, and so talented. But she refused to follow the path her family wanted, a tidy corporate job where she dressed in suits and worked 70 hours a week, until she met a man and had babies and tried to have it all.
So they washed their hands of her. And she did just fine, carved herself a pretty good life in spite of some bad cards in her hand. But years later, she was dealt some horrible cards and it was too much to handle. She spiraled down…
A NAMI mommy would say she was floridly psychotic. Psychiatrists would back Mommy up: she’s psychotic and needs heavy medications. Her hygiene suffered, she stopped cleaning her house. Stopped talking to her friends. Isolated herself, and when they reached out, she repeated the same phrases over and over.
There was no reasoning with her. And then she stopped eating. She lost about twenty pounds, maybe more, on a frame that was slim to begin with. She was bony, stopped getting dressed, repeating those same phrases.
I couldn’t have a rational conversation with her, and it was hard to be on this end of it. I see now how hard it is, how it hurts to watch someone you love disintegrate like that. Her behavior affected life around her. Her neighbors now knew she was crazy, and they shunned her, probably even feared her. She has three residences (did I mention she’d done well in life despite the predictions of gloom?), and was losing them all. She was going to be homeless. She was starving herself.
That life she had so meticulously built from ashes was falling down around her, and that added to her depression/psychosis/whatever term you want to use.
And here is the point where we reach that fork in the road: what to do. Her family was long gone. But she had friends who cared, unlike so many. We formed our own “intervention team.”
But with a twist.
Every one of us has a history of maltreatment by psychiatry. We have been forced and abused, traumatized by injections and restraints and being told we’re less than and deserve worse treatment than the average person. Because we’re mentally ill.
And there was no way that Sophie would want to have anything to do with psychiatry. We knew that, although we did ask her point blank just to be clear. Her answers ranged from nonsense, to fuck off and leave me alone.
We, her self-appointed treatment team, made a pact. We would do everything in our power to keep her out of the hands of a system that we knew would simply drug her into oblivion and offer no real help. The only justification for hospitalization that we had (and we did honestly discuss this) was that at least they’d provide food.
But that tiny perk would come with so much baggage that we quickly asserted it was not a real option.
Only one of our team lived in Sophie’s immediate area (I’ll call her Karen), and even then, it was difficult for her to get there. Karen had no car (it’s the city) and had to maneuver subways and buses to get to her. A full hour each way. And of course she already has a full life: she works and cares for an ill relative.
But this was our friend, and we weren’t going to let her die. Without our help, she just might die, either of starvation, or suicide (there were many discussions and threats), or simply an accident. Maybe she would die of neglect.
With the rest of us cheering her on, Karen began showing up at Sophie’s door with food, with cleaning supplies, and whatever Sophie might need. Maybe it was a couple of submarine sandwiches and a soft drink. Maybe a hot bowl of deli soup. As long as it was food, and Sophie would eat it, it was good. And Sophie did eat. She devoured two sandwiches the first day.
Karen cleaned the place up, carrying out bags and bags of trash, cleaning the bathroom, directing Sophie into the shower.
Karen might not have been able to make it every day, but she made it nearly every other day, or at least three times a week. And she continued to bring food. And Sophie ate.
The nonsensical ramblings continued, and sometimes we argue with Sophie, but mostly we try not to. There’s no point in trying to change the reality that she has at this moment. She sees everything in terms of blackness, there’s no way out but suicide. But to complete suicide, she would have had to leave her home, and go somewhere to get something to use: a pharmacy for some pills, a gun shop for a gun. Her isolation and refusal to go outside is in our favor.
We know we take a chance, and all I can say is that along the way we have continued to tell others on the team “I hope she survives this.”
Surprisingly, a family member we all thought was lost to Sophie forever (and she thought it too) returned to her life to help. A Christmas miracle? Perhaps some good karma?
It has helped, and now this family person is involved and helping…in a positive way. Helping Sophie with day-to-day tasks, making sure she eats.
It’s been a tough road, most especially for Karen, who took on the biggest burden of all. Sure, the rest of us would have if we had been nearby. But we weren’t. What if Karen hadn’t been there? Would one of us have stepped it up and flown to her? I’d like to think we would have. There’s still more to go, but Sophie is definitely getting better, and I know now that she’s going to recover. It may take some time, but she WILL get better.
But this is obviously where our paths split, NAMI and friends. You don’t want to take on the burden of a loved one who needs your time and compassion. You want the easiest path. For you, that lies in a bottle of pills, and passing the burden off to the state.
Of course you have excuses. We all do. We live far away, we have lives, families, work, other burdens. We can’t just drop everything to go care for an ill loved one.
Or can we? Would you drop everything if your family member called and said “I have cancer?” If that loved one was going through heart surgery and had no one else to help out?
Maybe you wouldn’t. Maybe your answer would be “That’s what hospice care is for.” “Hire a nurse, I’ll chip in fifty bucks a week.”
Perhaps you were the sibling who first wanted Grandpa to go into a nursing home, when everyone else thought he could continue to live at home for awhile, with assistance. Or in a senior apartment, with the extras they might offer.
Maybe your style is to always put the burden on someone else. Or is it different when it’s a medical illness like cancer? Does your speech about mental illness being a disease just like diabetes fly out the window when it comes down to having to put your own life on hold?
I better understand just how hard it is to watch a loved one deteriorate and want to help them live through it and get better. But I am more determined than ever to put it in your face that you don’t have to be the bully. If you truly care about your family member and want what’s best for them, maybe you’ll ask them. Talk to them about what they might like, what they need.
This has not been an easy road. It would have been so much easier to just pick up the phone and say “Hey, our friend needs to be put in the hospital, go get her and do your thing.” This is what I am now certain that most of you NAMI types are about, because now I’ve lived in your shoes. It’s just easier than the inconvenience.
Make all the excuses you want. It doesn’t change a thing: you aren’t willing to do the work and go to bat for your family member. You want to stick your head in the sand, pretend your calls to the authorities are the right thing to do, and you want to call it help.
It is nothing more than a pathetic string of excuses to feel better about your own abandonment of a loved one. Since you can’t live with the reality of that, you’ve got to dress it up and call it something else: medical help.