The bleak reality of a dead tree can compare to the desperation of mental illness which can leave patients and caregivers filled with unbearable sadness.
Since the beginning of time there has been evidence of humanity’s battle with mind disorders with very little being done about it other than placement of the ill in insane asylums. Inmates were treated not much better than wild animals with horrible, unspeakable atrocities performed in an effort for institutional control. Ignorance abounded up until well through the last century with the mind still a mystery and most medical people, caregivers and family categorizing the victims as just plain “crazy.” It’s only in the past 50 years that the medical community has made even a scratch on the surface of what ails the brain.
As citizens of the world we have a long way to go in accepting the fact that mental illness is an illness. In my humble opinion, we in the Alzheimer’s community, or I should say we who have loved ones under the Dementia Umbrella are a little more aware of mental illness than many – at least in our little corner of this colossal disorder. Like cancer, there appears to be as many varieties and degrees of severity of being mentally ill as fish in the ocean. What’s unfortunate, if that word is appropriate, mental problems don’t show in the same way as, say, a broken arm, chicken pox, a black eye, a surgical procedure, or poison oak, and when we see that someone is sick or injured, we are immediately concerned and sympathetic, usually asking — sometimes shrieking– “What’s wrong?” or “What happened?”
When I watch my husband as he sleeps, he looks just like the Ken I have known most of my adult life even though he is in the advanced stages of AD. For all outward appearances, he is the same person he has always been until he awakens and you engage him in conversation or touch him without notice. It’s then you recognize something is very wrong.
In the early stages not everyone knew Ken was ill, even in the middle stages his AD often went unnoticed in casual settings. All the while his brain was being covered with slime and abnormal structures known as plaques and tangles which are a buildup of deposits of a protein called beta-amyloids, but no one can see the damage this activity does to the nerve cells. He is ill, but the illness is invisible. There was no bloating, no swelling, no water retention, no pain, no rash, and no sudden weight loss.
Family and some friends have known about Ken’s AD right from the beginning, and we continued with our social life never feeling any rejection or that we didn’t belong. I have been blessed with support from many, but that’s not always the case. AD and other mental illnesses still carry a stigma often manifested with family embarrassment and apology, denial, intolerance and skepticism if not down-right disbelief that a sickness exists. Mental illness is far more extensive than what lies under the Dementia Umbrella. Other troubled victims suffering from any number of mental disorders can be dismissed, even by those who are close, with remarks such as “Grow up.” “You would feel better if you tried.” “Forget it.” “Let it go.” “Get a grip.” “You can remember if you make the effort.” “You’ll be all right.” “Quit whining,” and often the topper, “Get over it!”
The Oprah Show has done a wonderfully informative service in presenting various examples of mental illness, particularly people in depression. Caught on tape by her rescuer’s police car, one woman was saved when the officer grabbed her arm as she went off a bridge, her momentum nearly pulling him over the side with her. Fortunately, another officer, who had just arrived on the scene, was able to hold him while the two pulled the intended victim back to safety.
Months later, as Oprah interviewed the woman and they viewed the tape, the survivor, so engulfed in the blackness of depression at the time, remembered nothing of her attempt to end her own life. She had no idea how she even got to the bridge, although she had been told she drove herself. There was no memory of getting into the car, getting out or climbing up on the rail of the bridge. In therapy and healing she lived to appreciate her husband and family, and to thank the officers who pulled her from the brink of death. Dying was not what she wanted – only help. That’s what most of those suffering from mental illness want. All the while they are grasping and wallowing in despair, they are crying out for help even though they resist. I was able to share that Oprah episode with a friend whose despondent daughter, to all appearances was happily married and the mother of a 7-year-old, was pushed over her edge with unrelenting pain into black depression. She was not rescued.
Years ago I had read that if someone talked about suicide, they wouldn’t do it. It’s my understanding that the thought is different today. If they threaten, it needs to be reported to their doctor because such a threat is very real and possible. As I have mentioned before I am not a medical person, but I do relate to mental illness and the complex mystery of the mind, no doubt because of Ken, his parents, my own mother, and for a short time Auntie Mary. It is out of concern that I offer my thoughts about what I observe and read.
While perusing an article from the “Alzheimer’s Reading Room,” I was troubled (which prompted this post) when I read about an Alzheimer’s patient being arrested and put in jail. He and his wife live in Winnipeg, Canada, our neighbors just north of the United States boarder. Bob’s wife, his full-time caregiver, had been showing him a family photo housed in a metal frame in an effort to stimulate his memory. Not recognizing her as his wife, Bob pushed the supposed intruder away. She fell on the corner of the frame causing a cut on her chest requiring a hospital visit and 8 stitches.
At the hospital, police were summoned. The disoriented and confused husband, was examined, given a medical clearance, arrested, charged with aggravated assault and jailed where he languished for more than a month despite the family’s protests. Eventually, the media exposed the problem and intervention for his release from prison was made by a local politician
Authorities made the stipulation, however, that 69-year-old Bob not be allowed to return to his home under the care of his wife, but must be placed in a government-designated care facility. Reluctantly, the family agreed. Bob was transferred to an inadequate care facility (inadequate in that the personnel was not trained, nor was the facility equipped for combative AD patients). Unsupervised, he attacked another patient. The older patient, an 87-year-old man, struck his head in the fall and was seriously (if not fatally) injured. The family of the older patient was outraged insisting that Bob should be in jail and politicians should mind their own business.
The comments below the “Reading Room” article were a consensus: Tragic.
Mental illness is tragic – no matter what form it takes. AD is tragic. The death of my friend’s daughter is tragic. Suicide is tragic.
I can see the cast on a person’s leg, the rash from poison oak, the fading yellow-purple of a bruise, scabby dots from chicken pox, the stitches of a surgeon following an operation, the weepy, even blood-shot eyes from a common cold are obvious, and I have felt (and seen) the devastating almond-shaped lumps from another friend’s terminal cancer; tangible evidence of physical illnesses we can see and sometimes touch. We show our concern, our love and reach out to comfort and help those who are sick or broken. Yet, we can be so unbelieving and distant when it comes to mental illness.
Right at the beginning of Ken’s AD, our younger friend, who helped us with yard work was, for a time, doubtful about Ken’s illness. I don’t recall what Ken said, but Steve’s puzzled response was, “He’s putting me on. Isn’t he?” So normal was Ken’s appearance – looking robust and healthy — that what he said had seemed to be a joke – faking — unreal. That combination of real and surreal somehow clouded the seriousness of his embryonic illness – making it appear suspicious – an act. A remark from a sick mind coming from a healthy body was beyond comprehension. Yet it was true, and in the same way other forms of mental illness are often viewed with cruel skepticism.
Probably, everyone has felt depressed at one time or other, but with a healthy mind it’s temporary. Caregiver’s, especially the spouse caregiver, also experiences this kind of sadness and depression from time to time. It’s when that depression continues with no relief over a long period of time that it becomes what the medical community terms “clinical depression.” Danger: the victim needs professional help. Numbers of people suffer from depression and countless other forms of mental disease, and it’s all very real even if it can’t be seen.
In any event, we, as part of humanity need to be more aware and more understanding of our fellow human beings as they are pulled into the many illnesses which plague mankind. When we reach for their hand it should be for assistance through whatever misery they might be experiencing. No matter what the illness – physical or mental — the words from our lips should always be, “What can I do to help?”
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