Transcending the Sad Circus: Caring for Someone With Bipolar Disorder
WRITTEN BY: DA Blogger, Julie Stoller
My grade school drawing of the two-faced clown.
All my life I've asked myself why. What was the reason, the purpose, the lessons I was meant to learn, being born into the family I found myself in? On the inside of my mother's wedding ring, which she still has but no longer wears due to her frail condition, is the inscription "we three against the world." For a long time, I fought against that worldview, as it seemed to forever place us - and me - in a never-ending adversarial position with all of humanity. It put me at odds with life. As I get older, I see how true this has been from the very beginning and I realize that in this epic battle, the one weapon that has helped us survive is love. That defiant proclamation now stands as a tribute to the strength of our commitment to each other. And that, I now realize, is its purpose.
A Brief Family History
My mother's struggle with bipolar disorder can be traced back to when she was eight. Though she wasn't diagnosed for another 47 years, one needs to go back that far to see the roots that would eventually grow into an extremely complex, gnarled tree.
Born in Brooklyn, New York, she was the baby sister to three older brothers, and it was after her mother died that her tyrannical father (who regularly beat all his children) abused her. Happy childhood memories of her attentive and loving mother playing with her and her siblings abruptly ended. It wasn't until her mother's sister realized what was going on that she was removed from that poisonous environment.
Her earliest therapy was in her teens, when she went to speak to a family friend. By the time she met my dad, after time spent working in the Navy as a pharmacist's mate, she had been in therapy for years. Over time he learned about her past, though mostly from her, as her siblings would be evasive whenever he asked. They didn't want to talk about it. Just as stigma surrounds mental illness, it also surrounds child abuse. Call it a veil of secrecy. It is protected, hidden and mysterious, like a terrible and treasured family jewel.
Psychiatric Treatment: The Dark Ages
Norwich State Hospital, Administration Building, 2011. Source.
Through mom's illness and our family's struggles, one can trace the ominous history of psychiatric treatment like a living Wikipedia page. There were questionable therapies, sinister mental institutions and enough medications to take down a small herd of elephants. She partook of wacky new age treatment fads of the 1960s such as a weekend scream therapy session, courtesy of my well-meaning but easily duped aunt, which set her off on a psychotic episode. There was Norwich State Hospital, one of just a few Connecticut hospitals in the 1970s that treated those with mental illness, which doubled as a facility for the criminally insane. Amenities included padded cells, restraints and electro shock treatments straight from the set of a B-grade horror movie.
Through a steady parade of psychiatrists, she was prescribed, at one point or another and often in cocktails, Trilafon, Lithium, Valium, Depakote, Klonopin, Ambien, Risperidone-and when she was later diagnosed at McLean Hospital with Alzheimer's on top of the bipolar disorder, Aricept and Namenda. Oh, and Effexor for depression and anxiety; I almost forgot that one. It was the dartboard approach to medical treatment.
Navigating the Mania and Meltdowns
Edward Munch, The Scream (1893). Source.
Though her difficulties began long before I was born, mom's first manic episode that I remember was while on a family trip to Europe when I was 9. Traveling unnerved her. She hated to pack and didn't like being uprooted. In the summer of 1970, we went with my aunt, uncle and cousin on a crazy whirlwind 'Europe on Five Dollars a Day' tour. Among several incidents on that trip, such as when my dad had to call in a French-speaking doctor to give her something to calm her down, a more lighthearted moment comes to mind. During a manic swing, she attended an art auction at a hotel where we were staying, and ended up with a pile of European paintings - all of them portraying various rabbis. A few of them still grace the walls of my parents' home, their benevolent faces gazing down wisely, offering solace in acknowledgement of the emotional turmoil that got them there.
Mom's next major meltdown, and by far the most soul-destroying, was in 1974, when I was 13. The bouts of depression and crying jags were awful, but those were manageable at home. The manic attacks, not so much. On one particular occasion, her erratic behavior - trying to eat plastic, running out in a snowstorm in a nightgown with bare feet to catch a small dog for me, hallucinating a giant insect out of a grilled cheese sandwich I had made for her - this became too much for my dad and I to handle, so we called an ambulance to bring her to an area hospital.
Upon evaluation and a call to her psychiatrist, it was decided that she was too difficult to subdue, and the psychiatrist recommended Norwich State Hospital. A comprehensive Google search will reveal that oft-maligned facility's dark past. Closed in 1996, it's on lists of "most haunted sites in Connecticut," and it's no surprise. A lot of awful things happened there, from overmedication of patients to the use of restraints and shock treatment. It was a gruesome place, "a hellhole" according to dad, and the first time I remember seeing him cry was waiting at the elevator after having to leave her there that night. We got her out a few days later and she was transferred to Elmcrest Psychiatric Hospital. Elmcrest was a significant improvement in care, with strenuous rounds of individual, family and group therapy, yet they too closed in 2006, eight years after an 11-year-old patient died while being restrained.
It wasn't until after Elmcrest, with a therapist we met there, that she was properly diagnosed with bipolar disorder (then called manic depression).
Riding the Roller Coaster - We Three Against The World
From the mid-1970s into the 1980s, we rode out mom's mood swings and she continued with therapy and the scary med combinations that would frequently give me pause as a passenger in her car. There was another hospitalization in the 1980s, though I know this from history reports on hospital papers rather than a clear memory. After a while, it all blends into one strange gloomy odyssey.
Fast-forward through twenty years of what passes for "routine" in our family. Entering her 80s, Mom eventually began to show some signs of forgetfulness and disorientation. In 2005, an evaluation at McLean Hospital in Massachusetts added the diagnosis of Alzheimer's to the mix. With that came more medications and more uncertainty.
In 2010, there was what was first thought to be another bad manic attack, with hallucinations and screaming. However, we now think the visions may have been due to Charles Bonnet Syndrome brought on by deteriorating eyesight, and the accompanying mania was no doubt mom's distress over seeing strange things on the walls. Regardless, it was back to the hospital. After stabilizing, she was transferred to a nursing home for short-term rehabilitation. It was there, and not for the first time, that my dad and I became wary of the medical profession and care facilities. In particular, we were dismayed at the general ignorance, lack of communication and poor quality of treatment given to those suffering with various forms of mental illness.
At the nursing home (a swank and highly regarded one, I might add) they dosed her with Ambien and Klonopin, both tranquilizers and yes, on top of the psychiatric meds she was already taking. It was later revealed that this was standard procedure to make patients easier to handle. She became overly sedated (what a surprise) and even landed in the hospital for a day due to their ineptitude. Since then, dad has completely ruled out placing mom in a nursing home facility. Instead, he lovingly cares for her at home with the help of a steady stream of nurses and aides. Some are better than others. For the good ones, we are eternally grateful.
Living with Bipolar Disorder and Dementia - The Best Treatment is Love
"I feel like a one-armed juggler." - Dad
The One-Armed Juggler, by J. Stoller.
Lord knows, it isn't easy. I can't thank my dad enough for taking such good care of mom. He's unbelievably patient - not just with her, but with the battalion of "professionals" who claim to know what's best for her, while not really knowing anything at all. She's 95 now, and he's 89. Along with the psychological issues came physical ones, but she's incredibly tough. I'm proud to say it seems to run in the family, though I don't always feel so resilient.
She can't walk anymore, doesn't say very much and is often confused and groggy. We don't know how much of that is her bipolar disorder, the dementia or side effects from the various drugs. She gets into her moods, but very often I can see in her eyes how much she appreciates us. My dad is completely devoted, overseeing her care and more often than not, caring for her himself. He often finds it is the easiest and least stressful way, since he knows best what she needs. He takes care of her the same way she cared for us - and so many others - over the years. She was a registered nurse and even in retirement, continued to help others. This included adopting a beloved elderly neighbor whose family abandoned her. She became the grandmother I never had, and the love passed itself forward. The need to give care, and to be cared for, isn't easy for either of them. But their commitment to each other goes well beyond the standard marriage vows.
"Most people fear death. I'm afraid of losing my mind."
As for myself, I'm engaged in a constant tug-a-war between heartfelt compassion and visceral fear. Is the bipolar disorder and dementia hereditary? Will I end up like her? Will I become incapacitated, but with no one to care for me? Throughout my life, I've had bouts of sadness and frequently feel on edge. There was one brutal anxiety attack in the middle of the night, alone, though I was able to talk myself through it. I am sometimes forgetful and often feel overwhelmed and fearful of what the future holds. I even went through a bit of mania reviewing the details of mom's illness with dad for this article, but I suppose that's to be expected when dredging up such a disturbing past. Most people fear death. I'm afraid of losing my mind. That fear, the worrying about the unknown, can be crippling. So I speak to dad daily and visit them often, but I live my life at a manageable distance. I indulge myself in what makes me happy, explore my inner world and wrestle with (at times subduing) my inner demons.
It is during my visits that I see what really helps mom and what keeps her alive and fighting. It's the same thing that keeps my dad going during the difficult days. It's love. Whether expressed in prolonged hugs, spending some time together watching a movie on TV or just quietly sitting with her, it's the most powerful medicine of all. This becomes instantly clear in the unspoken words of thanks that appear in her expressive eyes when she sees and recognizes me. Dad suspects that she doesn't have dementia and never did, though it remains a mystery as to what afflicts her. At times, she is perfectly lucid and responsive, even speaking a little, and then at other times she is lost in her own parallel universe.
On a good day, I'll get little kisses and a weary smile. We're all weary. So it's ok if there's no verbal dialogue. Communication can occur on an intuitive level. The language of caring takes us beyond words and nothing needs to be said. With facial expressions, she lets us know when something is not right, when she doesn't want to eat or doesn't like one of the aides or nurses attending to her. She also makes it clear when she's happy and deeply appreciative.
Caring For Mom - 7 Rules of Thumb
- Love, compassion and patience trumps doctors, meds and uninformed diagnoses.
- Trust your gut instinct; don't listen to anyone who doesn't know her nor second-guess what you know is right.
- Take her seriously, even if she thinks there are soldiers in the walls watching over her. For all we understand about the human mind and our universe, there very well may be. Let them know that you've got it covered and that it's ok for them to leave now.
- Hear what isn't spoken.
- Let the various doctors, nurses and aides argue among themselves, enjoy the show and then continue on with what you know is the best course of action.
- Understand that friends and relatives might be skittish and hesitant to visit or offer actual support beyond a yearly phone call. They aren't terrible people. They're scared of their own dark closet and don't want to open that door.
- Allow her to surprise you. Medical specialists said she wasn't going to be around much longer and that was five years ago.
In Closing, Be Strong
"A sane person to an insane society must appear insane"
- Kurt Vonnegut, Welcome to the Monkey House (1968)
It has always been my belief that people who suffer from depression, mania, anxiety, worry and other mental disorders are merely hyper-sensitive to their surroundings. In this model, hypersensitivity is a condition, maybe even a higher level of awareness - not an illness. This is not to say that the symptoms that make it difficult to thrive in today's crazy world can't at times be alleviated with treatment, and possibly the right medication.
But in my opinion, it goes beyond that. I believe that the "mentally ill" are responding in very natural ways to circumstances seemingly beyond their control. They are reacting in the only way possible to an extremely complex and difficult world, with way too much to process at one time. The pressures and hypocrisies of modern life exert a tremendous weight, and only fools (or exceptionally skilled actors) will insist that everything is ok and that they've got it all under control.
To those who are struggling - you understand more than you know.
As soldiers in the Depression Army, we are on a reconnaissance mission into the deepest recesses of the mind and some of the least understood areas of human experience. We continue our campaign to advocate and to educate, through sharing our stories. The key to caring for a loved one with bipolar disorder or any other kind of mental disturbance is also what will bring those who stay away in fear into the realm of understanding. It all comes down to compassion - and love.
Family Heart, by J. Stoller.