MENTAL ILLNESS: A REALITY

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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LOST, ABANDONED AND OTHER DESPERATE FEELINGS

Like a long lost shoe, Alzheimer's patients often feel lonely, lost and abandoned.

“Good grief,” confessed my neighbor Ruth many years ago,  “I forgot Laurie at Mayfair’s.”  It was a few days after the fact that she mustered up enough courage to tell me she had forgotten her child while shopping at one of those supermarkets where there was a built-in Kiddie Korral, a special fenced-in corner of the store where you could leave your children for a few minutes, withour worry, while picking up groceries.  More often than not Ruth went shopping by herself, leaving the younger children with her oldest daughter, who was more than capable of keeping an eye on her younger siblings.  All of the little ones had enjoyed a few stays in the Korral, and if they caught mom heading out to buy groceries, they pleaded to go along.

“Oh please,” Laurie had begged, “Can I come with you – pleeeeease?”  How could Ruth resist such coaxing?   Laurie climbed into the car with her mother and off they went, the little girl being more excited about her visit to the Kiddie Korral than spending some one-on-one time with her mother.  Absorbed in the picture books and surrounding toys,  Laurie didn’t notice the time passing, nor did she notice her mother push the grocery cart past the fun-filled corner and out through the open glass doors of the supermarket.  Nor did Ruth remember she had brought one of her children.

“Where’s Laurie?” asked Jackie, helping her mother carry in the groceries. “Did you forget her at the store?” she joked.  That was the moment of truth.  Ruth leaped into the car and raced back to Mayfair’s. There was Laurie still looking at pictures from the pile of selected books next to her chair.  “Time to go,” said Ruth, relieved to find the little girl safe and sound just where she had left her.  For Laurie there was no trauma and no feeling she had been forgotten, much less abandoned, nor would she be scarred for life from the experience. However, Ruth wasn’t alone is losing a child.

One year we lost our three-year-old son, Kevin, at the county fair.  He didn’t want to be in the stroller, so I pushed his empty vehicle while he held his father’s hand.  Feeling independent, he soon insisted on walking alone, and when his sisters, Ken and I turned to go into an exhibit, Kevin kept going straight.  Within seconds we realized he was gone, and he was – disappeared from sight – and so quickly.  After minutes of searching and not finding any trace of him in the crowd, terrible visions began entering our minds.  Immediately we found the sheriff’s office and reported our missing son. “Wait here,” the deputy suggested, “We’ll find him.”

It wasn’t like Ruth leaving Laurie, she was pretty certain she knew where to find her little girl. We did not.  Our child was lost in a world filled with strangers – and they could be dangerous strangers.  My little boy was alone and frightened somewhere out there.  We were near panic.  It seemed like forever before another deputy appeared before us holding our crying and frightened child, his precious face streaked with smudged tears, his small arms stretching forward to me as we both sobbed; Kevin’s tears from being lost, my tears because he was found and safe in my arms.  “No need for positive identification,” said the sergeant in charge. “Looks like she’s the mother.”

Ruth, nor I, nor Ken, were bad parents, neither were the number of other friends we knew who had misplaced, lost or forgotten one of their children during those years of transition from toddler to an independent human being, especially in a large family. Fortunately, all of our lost children were found.

One couple we know drove 50 miles before they realized their small son was not in Uncle John’s car, but back at the dam.  The return trip was a little frantic, but Steven was safe  in the capable care of the park rangers even though he probably felt lost, abandoned and fearful.  Another family outing involving multiple cars arrived home, hours away from their excursion site, before they realized one little boy was still at the aquarium in San Francisco’s Golden Gate Park.  A quick phone call and Uncle Gene who lived in the City came to his rescue, once again finding the lost child safe with aquarium staff.

Those desperate emotions are always within us and rise to the surface when we feel threatened; possibly in preparation for our own defense.   I suppose they belong to the “Fear Family,” often made worse when fear itself is mixed with believing you are alone and lost.  However, with a diseased mind, those same fears of emptiness and desperation can be a constant in addition to other instinctive feelings that bring unimagined misery to the mindless.  Is it any wonder they can rage, become angry and combative?  Occasionally, I look into Ken’s eyes and see fear and entrapment.  I understand how frightening life can be for AD victims when there is no reasoning power to comfort their own confused state.  Reassurance, however, can come from someone else or something: a familiar voice, a caring touch, pleasant music, soft words, company and many other soothing actions or words.

A few weeks ago I walked through our living room on my way to do a few quick errands.  Ken was sitting comfortably in a chair with Ben beside him.

“Where are you going,” Ken asked.

“I have to go to the bank, I’ll be back soon.”

“No, you won’t” he retorted.

Once again I pled my case, “I’ll be right back – really I will.”

“You’re just saying that,” he insisted.  “You won’t ever come back.”

I looked into his handsome face.  Written clearly was that look of abandonment.  Incredible sadness filled his eyes and demeanor.   I felt astonished to read him so well.  I could see the disappointment, the sorrow, the acceptance of my leaving forever as I moved toward the door.  He was convinced that I wouldn’t be coming back.  I was leaving him alone – abandoning him – in his immediate need for comfort and assurance.

“I can do this tomorrow,” I said to Ben, removing my coat and putting my purse aside.  Ken said nothing more as I sat down, but his face showed relief.  Did he know me?  Was he having a Ken moment?  I don’t know the answers.  What I do know is that for a brief period of time he wanted me nearby.  He wanted that feeling of security — to be with someone familiar — even vaguely familiar.  In much the same way as my three-year-old son had buried his wet face in my shoulder, his arms desperately clinging to my neck Ken too wanted to feel safe, knowing that he was found.  This I could give him with my presence.  Even if it lasted for only a little while, I wanted him to be comforted in that moment knowing he had not been abandoned.

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