Caring for advanced-stage schizophrenia challenging

Editor’s note: Tony Stevens is a nearly 40-year Oregonian, and longtime caregiver. He wrote this for The Chronicle.

I was married for nearly 25 years, until my wife’s passing from early-onset Alzheimer’s, eight years ago. I became my wife’s caregiver, and having no parenting experience, I was surprised to learn I was good at the job, and we negotiated those last year with relative ease. 

To the disappointment of some, I kept Catherine home and under my care, until very near the end. I felt that familiar surroundings were important to a rapidly deteriorating brain.

I returned to construction work after her death, but was badly injured and left the industry shortly after my 62nd birthday.

I needed work that I would be physically able to do, and given the opportunity, I became a caregiver for mentally-ill adults living in a nearby foster home. 

Among several schizophrenics living on site was a 40-year-old woman with an extensive record for discord and occasional violence. The woman was nearly two decades into a lifelong struggle with Schizoaffective disorder. For whatever reason, we got along great and rarely had trouble. 

Schizoaffective disorder might be thought of as “Schizophrenia Lite.” It comes with the voices, paranoia, and dysfunction, but not the complete dual personality traits. 

Still injured, I decided to retire following my 63rd birthday, and I knew that this woman would not fare well in my absence. 

Within 60 days of my departure, the woman, who had been dabbling with drugs, got caught with methamphetamine and was immediately evicted.

She had been on the streets, on drugs and off her meds for three weeks before I was informed. I contacted her father and between the two of us, we tracked her down. She was ordered into a six-week special-needs rehab program, which worked well. Unfortunately, the safety net for special needs resembles a trampoline massed with people and stretched to the breaking point.

With minimal support or money, and family unable to rise to the needs of her illness any longer, she ended up in a motel in a town flowing with meth. I lived 20 miles away and was still injured, but did what I could, which wasn’t enough. Within four days, the cockroaches and the sewer rats of the town had done their work, and she was back on meth!

It was in that condition, in the throes of methamphetamine, that she looked at me with eyes full of tears and said, “Tony, please help me!” I said, “Yes, but it will be on my terms.”

Her father, weary of the struggle, rallied once more and got her back into treatment. Three weeks later, she was released into my custody. Her father said, “Thanks for trying, but you won’t last 30 days. It can’t be done.”

That was nearly three years ago, which means, it can be done, but it wasn’t easy. 

How this story finds its way onto paper was by The Chronicle’s recent well-written article on the importance of early intervention in the treatment of schizophrenia, which, if possible, is excellent advice. 

However, schizophrenia often blooms late in adolescence, between the years of 17-20, and is oftentimes hidden by its victims during these formative years.

Early signs of schizophrenia may include withdrawal from social contacts as well as depression, caused largely by the stigma, fear and shame of suddenly becoming “different,” though it may also be in part due to the arrival of “voices” in the schizophrenic’s head.

These voices are not like the voice we hear in our head when we remind ourselves to buy eggs on the way home. We recognize that as a silent cue from ourselves.

However, for the schizophrenic, the voices they hear are an actual auditory experience that takes place in the brain. They hear an actual voice, and it’s not theirs! These voices are often mean, threatening, demeaning, insulting and constant.

We’ve all seen the person, often ragged and disheveled, “talking to themselves,” when in truth they are likely talking to the voices of “unseen others.” And it may be that engaging them in conversation is the only control they have over the voices.

Medicating schizophrenics late in the game, after the illness has had time to do its damage, is a tricky undertaking. Add to that, the possibility of drug/alcohol abuse, nutrition, housing, insurance and the cooperation of the patient themselves, who very likely has been told by the voices to not take the medication.

These warnings will run the gamut from “they will make you fat!” to “I will kill your children if you take the meds!”

Finding the right medication and dosage takes time and patience as well. All of this is happening while trying to provide a stable environment for the afflicted person, who themselves may be in some form of mania or upheaval.

When the subject of this article arrived in my household, she was largely stable and clean of drugs for three weeks. My rules were clear, strict, yet reasonable. No drugs! (Neither of us drink.) Meet all basic hygiene (oftentimes unimportant to the mentally ill), take all medications as administered by me, attend all appointments and follow doctors’ orders. 

The subject’s case is overseen by a local nonprofit agency with whom we work. I attend the subject’s doctors’ appointments as well as case management and, with the invitation of the subject and her counselor, her counseling sessions as well. This job would be far more difficult without this excellent resource.

Schizophrenia detected, treated, understood and accepted early, is a manageable illness. The same is true of late detection, though I believe it takes time to tame the illness enough to begin treating it. Early treatment can lead to acceptance of the illness. Later detection may mean there has been a previous lifestyle which may have been self-destructive and one the schizophrenic is always in danger of falling back into. Not because they want to, because in a life filled with chaos and fear, a little mind-numbing peace is better than no peace at all, no matter the price.

I will keep the subject for two more years, completing our five-year verbal agreement. 

In lieu of the fact that we have made great strides and the subject is on more stable footing than in many years (I’m regarded by the family as near St. Anthony), I still recognize that my work is temporary, while the subject’s work is life-long.

She will never be able to live alone and will always need access to her support network. She will have to recognize that the voices and the meds will be with her for the rest of her life. If she shuns her meds, her illness will quickly overtake and devour her. 

So, when you see that person unwashed and disheveled, talking silently to themselves, or the person on the sidewalk screaming at “unseen others,” rather than shake your head at “that flippin’ nutcase,” try to take a moment to imagine what it’s like to be that person. And that may lead instead to a bit of compassion.



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