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old clock

This Alzheimer's caregiver is grateful for the gift of time.

Some of the most quality thoughts and essays seem to be on a continuing ‘round-the-world track through cyberspace.  Year after year they reappear in my email inbox.  There is a lot of junk I could do without, but I am grateful for the good items that show up even though I’ve read them before.

This particular essay is titled “Thank You For Your Time.  No matter how often I read it I not only ponder, but count my blessings – again and again.  Time is something everyone has in equal abundance or want: minutes, seconds and hours.  It can be used wisely, wasted, frittered away, given away, killed, coveted, lost or found.  We can experience good times, bad times, melancholy times, glorious time and children are sent to their room for a time out.  But it’s the gift of time which is actually one of the most precious gifts, and the subject of this day’s thoughts.

The email tells the story of a young boy who had lost his father.  Next door to where Jack and his mother lived was an older man who became the boy’s mentor and friend.  Mr. Belser taught Jack carpentry and tried to fill in some of the blank spots providing the needed male influence in the youngster’s life.

In turn Jack often lingered long after their building project, rejoicing in the camaraderie of the old man who was without children. The ancient house was like a slice of yesteryear and the boy was fascinated with all that was within, especially the gold box on Mr. Belser’s desk.

“What’s in the gold box,” the boy would ask.

“It’s what I value most,” answered Mr. Belser.  Curious though Jack was, he never pressed.

The years drifted by, Jack grew up, went to school, moved away, got married, and established himself as a highly reputable building contractor in great demand.  One afternoon his phone rang.  It was his mother telling him that Mr. Belser had passed on and the funeral would be the following Wednesday.  Jack had to admit he thought the old man had passed long ago, but as they talked a flood of fond memories washed over him.  Suddenly he realized that had it not been for Mr. Belser and all of those hours spent together he probably wouldn’t have entered into the contracting business.  “I’ll be there,” he promised his mother.

Following a small funeral, mother and son wandered for the last time through the old house.  It hadn’t changed one iota since Jack was a boy except the gold box on the desk was gone.  Noticing and believing a relative had taken it, Jack lamented, “Now I’ll never know what the old man valued most.”

Back at work Jack was soon engrossed in his self-driven work schedule.  Arriving home one evening he found a notice for a missed delivery which needed his signature.  The next day on the way to his work, he dropped by the post office and found his package with the return address of Harold Belser.  Quickly he ripped open the carton.  Inside he found an envelope with instructions for delivery to Jack, a small key and the gold box.  His heart fluttered as he inserted the key and opened the secret box where he found a gold watch and a note which read, “Jack, Thanks for your time.”  Bushing a tear from his eye he called the office, “Janet,” he said, “Clear my schedule for a few days or so.  I’m going to spend some time with my son.”

The boy and the man had given one another, without a thought, that which was most valuable:  their time.

I know my life has been blessed, and I am grateful to so many for their kindnesses and time especially during this difficult period of Ken’s illness.  Offers of help are like gift cards to be used now or when needed, and I know there is no expiration date.  I have one friend who even gets a little annoyed with me because I haven’t called on him to use his gift of time.  Don’t worry, Dennis, I will.

Dennis is a wonderful example of what was once referred to as America’s melting pot:  his father was Irish, his mother Jewish, and when he mentions his home state you can hear the “o i” instead of the “e” in Jersey. He is an ordinary man with an extraordinary heart measuring bigger than the state of Montana.  Dennis has seen life in its rawness, and tasted also of its goodness.  I know him because we all go to the same church where his main concern is people.

Going the second mile with his church callings is normal for Dennis and his wife Carol, so it isn’t surprising to find his heart open to the community at large.  I was touched by his willingness to go just about anywhere he is needed.

Driving from the East Bay to San Francisco’s Children’s’ Hospital was becoming routine as Dennis and his wife Carol paid their third visit to a young friend who had been born with a hole in her heart the size of a quarter.  Consequently, the child was in and out for constant checkups and stays, and had asked if Dennis could give her a blessing of comfort and healing, to which he was more than happy to comply.

“She has this attitude that she has no limits on her activity,” recalled Dennis, “which sort of drives the doctors nuts.  Children are pretty special to me and Carol, especially when they are sick.  I want to bear their illnesses instead of them having it, and being in a hospital is pretty depressing so we try to bring in a bit of sunshine.”  Recalling a small gift shop in the lobby, Dennis decided to see what they might have to cheer the little patient.                       

“While I was there, three or four children came in with their medications attached.  They all had cancer and not one of them wore a smile on that sweet face, nor did any of them have a single hair on their heads due to the medications they were taking.  When they came in, the shop got very quiet with an air of discomfort.  People tend to forget that children have this natural sense when people feel uncomfortable around them.

“I could see their beautiful faces and those beautiful eyes taking on a look of rejecton and hurt.  To me it appeared they were ready to cry.

“I had to do something to make them smile,” Dennis explained. “I shave my head every day, so I walked over to them and asked if they went to the same barber as I did.  Smiles flashed across their faces and it was agreed, ‘Yes, they did.’  I told them I thought their hair cuts were pretty cool, and that I had been wearing the style for going on eight years.”

Dennis leaned over so the children could run their soft hands over the slick and shiny head of my friend. “There cannot be a price for the smiles on those faces at that moment,” Dennis continued.  “Holding back tears, I got a hug from each of them, and then we all got what we came for and went back to the floor.”

There were tears on the way home – all the way home.  Recalling scripture, Dennis reminded Carol that the Lord, Jesus Christ, loved the little children.  To his apostles, He said, “Suffer the little children to come unto me for such is the kingdom of Heaven.”

“We know that all children who have cancer won’t make it, but still we pray for them, hoping for a miracle.  Looking at their innocent faces they seemed like angels, especially in their hospital gowns and slippers.  The hugs and smiles — I will never forget because I was blessed by them.” 

Like the young boy and the older man, Dennis, Carol, the children, and even the uncomfortable customers in the gift shop were blessed by the experience: the gift exchange of time.  As for me, I am bursting with Thanksgiving gratitude for family and friends — many  like Dennis — who share with Ken and me their most valuable possession:  time.

 

 

 

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dead tree

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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Throughout our marriage whenever I got the sniffles — or worse — a full-blown cold, Ken was at his worst.  A nurturer he was not.  “Mom — or mom-in-law,” he would plead into the phone, “Could you come out and help for a few days.  She’s sick.”  “She,” of course meaning me.  The mothers were wonderful and at their best as caregivers and baby sitters while he continued wringing his hands with worry all the while whining and wondering when I would get better.  Once I was on the mend and after the chosen mother had gone home, I often felt a little miffed that he was so incapable of  caring for me.  Sometimes I would tell Ken that it was too bad his investment in a marriage license wasn’t paying off:  Heaven forbid — his wife caught colds!  “Does an occasional bout with poor health entitle you to a refund?’  I teased.  It was a good thing I actually had a constitution of iron and was seldom sick.

In retrospect, I do believe he was terrified when I became ill.  He never said so, but I came to that conclusion because when I was in the hospital and “my primary care” was assumed by someone else, someone he didn’t know and a professional, he became a knight to behold.  My husband was the first one to arrive when the clock pointed to the beginning of visitor’s hours and he was the last one to leave when the nurse growled, “Sir!  Visiting hours are over!”

I was envied in the maternity wards as Ken sat by my bed being the best father and most attentive husband in the land.  He would pull his chair as close to my bed as he could get looking starry eyed and smiling while we talked.  Holding my hand in both of his, he periodically kissed my finger tips and told me how much he loved me.  I suppose the hospital knight canceled out the home klutz because when my colds were gone I always forgave him his incapability, and through the many years of our marriage I have concluded that’s exactly what it was:  Ken was emotionally incapable of stepping into that primary caregiving role.  A secondary support system was something altogether different, and in that role Ken shined like a new penny.

Following the automobile accident, and were he not stricken with a diseased mind, he would have been a permanent fixture next to my bed.  I missed not having him close by, and there were times during the twilight hours when I imagined him near.  With that thought in mind I drifted off into a deep sleep and dreamed about us.

We were celebrating; possibly my birthday which was in the first week of March.  Arm in arm, we were jaunty, each of our steps clicking in unison, tapping out a rhythm along the streets of San Francisco.  I suppose we were looking for the perfect restaurant.  He looked wonderful, his gray hair giving him an air of distinction — and to please me he wore a coat and tie.  He looked so handsome.  The weather was balmy, and I was dressed for an evening on the town; the two of us made a perfectly matched pair.  We were “us” in my dream, strong mature adults with grown children, grandchildren and even great grandchildren, enjoying every precious moment of our life together.  I felt good — and happy — even though we didn’t seem to be reaching any destination.

Block after block we walked, peeking around corners and passing many suitable places to eat, yet we kept going.  Suddenly, and without warning, we passed a darkened doorway and there in the corner was Ken.  Not the mature adult whose arm I had just held in my dream, but Ken the way he is — really is:  Ken with Alzheimer’s — confused and alone.  Were we meeting spirit to spirit? Or was my dream reminding  me that in reality Ken would not be my hospital shining knight, nor would he be my devoted secondary caregiver kissing my finger tips and telling me how much he loved me.  Alzheimer’s had taken that Ken from me, and coming out of the twilight where dreams can be momentarily bright and consoling — then gone like a puff of smoke — I was left to remember that my husband would not be part of my recovery.

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I can’t imagine what it must have been like to receive the kind of phone call my children received the night our car was hit by a drunk driver; when life, as we all knew it, suddenly came to a screeching halt leaving dinners uneaten, appointments canceled, meetings unattended, young children bewildered and our adult children and their spouses gathered in disbelief.  In retrospect I realize how naive humanity really is, all of us thinking we are so in control — masters of our very existence — when in reality we are not.  Life pulls the rug from under our feet every so often, perhaps to remind us of how frail and vulnerable we really are, and how dependent we are on one another.

Now what?  I suppose that was the paramount question.  Suddenly, the responsibility of mom and dad fell upon the shoulders of the next generation with absolutely no warning.  Even with Ken’s Alzheimer’s, he and I are the generational buffer zone between them and the great beyond.  You know, the older generation that keeps those of middle age somewhat “young” because their parents are still alive; grandparents to their children and like a rock we have always been there.

Then, unexpectedly things change and major decisions must be made by five adult children.  Five different opinions need to be considered, and five solutions weighed for the dozens of problems which lay ahead.  Could they work together or would they pull in opposite directions?  Could they get past “personalities” and agree even if it was agreeing to disagree, and be able to get on with the tasks at hand which included health-care decisions based on existing Advance Directives.  Who could and would handle the varying components and who would be accountable for mom and dad’s finances?  What about dad?  What would they do with their dependent father once he was released from the hospital:  caregivers at home or a care facility — or what?

I now refer to Keith as my CEO.  It seems that someone in the family steps forward and takes over.  Not that there isn’t that same capability of leadership in all of our children, it’s just that this time it was Keith who took charge — delegating and assigning what needed to be done.  Whether the others grumbled or disagreed I don’t know, nor do I want to know.  What I do know is that my children — with families of their own, business and work schedules to attend — set aside their own priorities to care for our needs.  Together, perhaps prodded and encouraged by the CEO, they worked like a finely-tuned machine; each doing what was assigned in the best way they knew.

As I recovered, I was able to spend a good amount of time with each one of my adult children: three men and two women, and their families.  It was quality time, relaxed time, alone time, intimate time, and stolen time from their busy lives, but I treasured those hours with them, rediscovering who they were, finding them to be the kind of people Ken and I had hoped they would become.  I also realized how very different they are, which I found rather amazing.  Coming from the same parents they are not carbon copies of me and Ken.  They have, however, grown into their own diverse persons while embracing the same values and qualities they had been taught: they are vigilant and hard working; and they are good, kind, loving and giving people.  I understand they don’t always agree with one another, nor do they always agree with us, and that’s all right.  The important thing is they are there for each other, and they are there for us.  Not only do I love them, but I like them; could a parent ask for anything more?

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“Ow!  That hurts my back,” I groaned, not knowing where I was, who was moving me or why.  Aware of bright lights, sirens and men’s voices, I heard someone say, while enclosing my neck in a brace, “Broken neck, possible broken leg.”  I thought, “Are they talking about me?  I don’t want a broken leg, much less a broken neck.”  I had no way of knowing what had happened, but suddenly the thought ran through my mind that I had been in some kind of accident.

Across the inside of my head stretched a blackboard which appeared to be blank.  Slowly, printed in white, as if someone were writing with chalk, there flashed a phone number.  Call my son,” I mumbled, repeating the numbers before me.  Then, as surely as I knew Keith’s phone number, I repeated both Ken’s and my HMO medical numbers.   “I have a pacemaker and my husband has severe Alzheimer’s.  Don’t let him wander away,” I added, somehow knowing they would need all of the important information.  “Can you tell me your name and birth date?” another voice asked.  I answered his question and gave him Ken’s name and birth date as well, then faded into an unconscious place.

Obviously, the driver of the maverick car did not correct as I had assumed.  Instead, his vehicle must have remained in the diagonal line aimed in my direction.  I was like a sitting duck in a shooting gallery, the trajectory of his set course was fixed on me.  He couldn’t miss.  In retrospect, who could have known he had spent the afternoon drinking and was drunk out of his mind?   Authorities could only calculate the speed of his car as it crashed into my SUV just behind the driver’s door.  Out of control, the maverick bounced off before slamming two more times into the rear of my vehicle, spinning it wildly before coming to a stop — facing in a southerly direction.

Inside, I had been unaware of  impact, the first blow no doubt knocking me out cold.  I can only speculate on what followed.  The seat belt, which I had buckled, failed.  I believe it retracted on impact, and in so doing snapped the metal-locking end into my lip, cutting it just under my nose at the same time knocking out one bottom tooth.  The air bag deployed, but without the seat belt holding me in place it was ineffective.  Lacking any restraint, I became air born and was somehow hurled through the window and onto the street where I lay until paramedics arrived. 

By comparison, Ken’s injuries were minor, but still required several days of observation in the hospital.  Restrained, confused, combative and unhappy, our concerned children insisted he be released for better care at home.

While my family waited and worried outside the trauma unit, I was finally stablized by a group of dedicated and extraordinarily skilled doctors following an hour and a half  of intense effort.  Medically, I was a mess.  The team of professionals battled various internal organs which threatened to shut down because of shock; there were cuts, contusions, blood loss, and massive bruising, broken ribs, a broken neck and head fracture.  They worried I could suffer a stroke or be paralyzed as the neck fracture was a top vertebrae pressing on vital areas and nerves which commanded life itself.

During a moment of consciousness I requested a blessing of healing from the clergy of my church.  Their anointing words of comfort, hope and promise fell upon me like a warm blanket on a cold night.  Finding peace among the turmoil I also found rest, allowingy myself to let go and let God further work His  miracles.  When awareness allowed me to ponder, I reviewed my broken and bruised body and while I will never dismiss the seriousness of my many and varied injuries, I am still amazed that I only suffered a broken neck, head fracture and broken ribs.  In actuality, I should be dead.  I can only believe there must be some part of my life’s mission which has not been completed.  Why else would Heavenly guided unseen hands cushion my descent to the pavement?

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