eating

THE BEST THING

It was Saturday night and I had hoped to have Ken settled in so I could go to bed early.  I felt unusually tired and he had been beastly all day: very agitated, very angry, very arrogant and argumentative.  He is on medication to cut down on the agitation and it usually works, but not that night.  Suggested dosage is one half pill in the morning and another toward evening.    Nothing seemed to make him happy or subdued, so instead of waiting until evening I gave him the other half in the late afternoon and another half pill (with the doctor’s permission) around 8:00 p.m.  Instead of him becoming calm he became more hyper and more angry.  Even the Tylenol PM at 10:00 o’clock was ineffective as he wandered from room to room ranting and raving and ordering me to leave.

Exasperated beyond description I went into the office and opened the computer thinking I would work for an hour or so.  When he becomes very unreasonable it’s easier to just lock myself in and him out.   I pay no attention to his demands to open the door and eventually he settles down in front of the TV.  Usually, he will sit for a while, get drowsy and I can talk him into getting ready for bed.

After an hour I peeked around the corner and found him ransacking the refrigerator.  “What are you doing?”  I asked.  “I’m hungry,” he replied.   “But we had dinner,” I insisted.  “Maybe you had dinner,” he growled, “but I didn’t.  I’m hungry.”  Perhaps some food would subdue him, I thought, so I made him a peanut butter and jelly sandwich.  He ate half and told me that’s all he wanted.  He went back to sitting in front of the TV.  It was midnight.  “Please go to bed,” I begged.  “No,” he answered.  “I’m going to watch TV all night.” 

Exhausted and sleep deprived I went back into the office.  I couldn’t believe how wired he was — and why?  I returned to the computer.  The letters I typed danced up and down on the monitor and when I tried to proofread I fell asleep at every other line.  How I ached to go to bed and the more sleep deprived I became the more my anger grew.  I raged into the night, cursing that I had ever met him — that we had married — and in my frustration I imagined a simple, uncomplicated life without this deranged man — any man.  Why hadn’t I remained single, opting for a career in New York instead of marriage.  At that moment I saw myself sleeping in the bedroom of a lovely apartment  high above the city.  The room was silent and I was alone — how glorious — then my reverie vanished.  I crossed my arms on the desktop, dropped my head and cried.

It isn’t as though I can’t leave him alone.  At times I do, but only for a while and usually he is sleeping or happily occupied reading junk mail when I run to the bank or do other small errands.  I would be fearful to fall asleep with him in his present frenzied condition.  Even if I pulled the 220 fuse controlling the stove, I would not feel comfortable.   In addition to ransacking the pantry and the refrigerator, he leaves water running and lights on everywhere; and he could hurt himself.   On one of his stubborn nights I found him in the living room on the floor.   Apparently he had fallen getting out of a low chair.   Had I been asleep he would have been there all night. 

Finally, the house seemed quiet as I ventured out to see what he was doing.   Still watching TV, he appeared to be more relaxed.   Softly I asked, “Let’s go to bed.”  He said, “Okay.”  It was 3:00 a.m.

I slept fitfully and awoke at 10:00, staggered into the kitchen/family room and switched on the television.  Through my burning eyes the Palace of Fine Arts in San Francisco appeared on the screen.   I first thought it to be a travelogue, but the scene changed showing two men in a row-boat: one young and the other older.  The younger man spoke briefly; something about not being sure of marriage.  I decided it must be an old movie.  Still recovering from the previous night, I plopped myself  into a chair.  If I watched I didn’t have to do anything else — at least not for a while.  The camera focused to the older man — a Catholic priest — who answered the younger man’s question with reference to marriage, “It’s the best thing I ever did.”  Continuing, he explained that he had been married to a wonderful woman for 26 years.  When she died he entered the priesthood.

I watched this rather silly movie to its end where thousands of young women scurried to the church in response to an ad for marriage to this very wealthy, but reluctant swain.   Following a series of wild chases up and down the hills of San Francisco, he eagerly married his true love with all of the would-be brides as witnesses.   The movie will be easily forgotten, but I’ll remember the most thought-provoking line the writer wrote:  “It’s the best thing I ever did.” 

I remembered the night before; my anger and cursing my own marriage of more than a half century.  It has been a good marriage — not a perfect marriage  — not a perfect man or a perfect woman.  I don’t believe there is that kind of perfection, at least not in this world.   However, I will give my marriage a good solid B — better than average.  Looking back on our youthful beginning I wonder if I thought of “in sickness and in health” as meaning anything more than a cold or the flu.  How naive that would have been, but more likely I don’t believe either of us thought about illness.  After all, isn’t youth invincible?   Healthy young people on the brink of a new life don’t look very far down the road.   And if they did glimpse the ending would it alter their decision to go forward? 

Our life together has brought us our share of adversity and has now thrust upon us this illness of unmeasurable grief and sorrow, but it has also showered us with years of happiness, joy and the blessings of an ever-expanding family.  Our five remarkable children, now showing signs of greying hair and middle-age spread, have bestowed upon us grandchildren and they in turn have given us great-grandchildren, and our posterity will go forth.  Thinking of my imagined single life I had to ask “me” if that’s what I really would have wanted.  Had I chosen not to marry what would that other life be like for me today?  Even without looking down the untaken road I would have to conclude that life without my family, without Ken, would be unbearably lonely and colorless. 

In the bright, warm light of Sunday morning I believe I received something to ponder; perhaps even a Heavenly message through a silly old movie and from an actor portraying a Catholic priest reminding me that, indeed, marriage is the best thing I ever did.

Originally posted 2009-05-15 06:56:12.

A NEEDLE IN THE EYE — AND COOPERATION

Getting a needle in his eye, is a difficult procedure for Alzheimer's patients.

Getting a needle in his eye, is a difficult procedure for Alzheimer's patients.

In the earlier stages of Ken’s Alzheimer’s we paid a visit to the eye doctor.  As we sat down Ken looked around the waiting room and casually said, “Funny, with my right eye I can see the wall and painting on one side and on the other side I see the door, but I can’t see anything in the middle.”  Good grief, I thought to myself, he doesn’t see the chair.   I was surprised to hear his “complaint,” and glad we were having his eyes checked, but I also thought it odd that he had never mentioned anything before about not seeing things in the middle.  It was if he had a hole in the center of one eye, which sounded like macular degeneration.Our eye doctor gave Ken’s eyes a thorough examination and seemed pleased to find his eyesight as good as it was, but sent us to another doctor who specialized in the treatment of macular degeneration.  “Yes,” said Dr. Specialist, “I do see that you are having some difficulty in the right eye.  If the degeneration isn’t too far advanced, we may be able to treat it.”

No matter what Ken’s temperament was when we left the house, his behavior was exceptional when we entered a doctor’s office.  He was like putty in their hands and at the very top in patience doing whatever the doctor asked of him.  I often wonder what would have happened if suddenly one of Ken’s other personalities emerged and socked the good doctor right in the mouth, but so far Ken was Ken with everyone in the medical field.  Dr. Specialist explained about the new treatment for degeneration and possibly Ken could be helped.  Continuing, the doctor said, “The treatment consists of shots directly into the eye…….”  I do believe the only thing I heard was “shot” and “eye.”   “A NEEDLE IN THE EYE?”  I am thinking is the man crazy? Ken’s AD plays mind-tag with his other personalities. Does the good doctor really believe all three will sit still and allow him to stick a needle in their eye?  With the steady hand of a knife thrower, intense concentration, and my husband not moving or blinking, the doctor completed the procedure followed by a bandage over the eye to be worn until the next morning.

In a nut shell, the follow-up examination proved that Ken’s degeneration was too advanced to continue further treatments.  How many times, because of his AD, would he have allowed such an assault to continue is unknown and incidental at this point?  However, the needle-in-the-eye experience brought to mind the importance of advance warning: being told exactly what was going to happen.  Imagine the disaster it would have created if the doctor had not told Ken, or any patient, what he planned on doing, but just said, “Hold very still, don’t move and don’t blink,” then went ahead and stuck a needle in his eye.

Clearly, we all like to know what’s coming next.  “I’m going to give you a few shots to numb the tooth,” says the dentist.  You don’t like it, but you prepare yourself because you know what’s going to happen, and your mind says it’s reasonable: hence – cooperation.

Youngsters like to know what’s coming as well. “See this dangling piece of flesh,” the doctor tells our 12-year-old who had shoved the heel of his hand through a closed window.  “I’m going to sew it back in place, but first I’ll give you a shot so you won’t feel a thing.” Mission accomplished with only a few jaw clenches.

Even for major surgery, someone tells you what’s about to happen.  The first step being,  “Count backwards from ten,” instructs the anesthesiologist, “and you’ll be asleep.”   “Ten, nine, eigh………….”  Cooperation and instant sleep is the reward for advance information.

“Okay Sweetie,” I can remember crooning to my 2-year-old.  “Mommy is going to put your socks on.  Now your shoes – hold still.  Okay, other foot.  Socks and shoes on – thank you.  What a good boy – or girl.”  Even when they were little they soon learned.  Not only did their vocabulary grow, but they began to understand about cooperation – until they tasted independence and learned to say, “Me do it,” but that’s another story.

I find myself thinking of our little ones very often as Ben and I – or Criz – work with Ken during the morning routine.  “Put your jeans on,” I hear myself purring, as the caregiver guides each foot into the pant leg.  “Socks on, very good – other foot (as if he were two) now your shoes – okay.  Good boy, stand up now.”  These are all simple words, simple statements, something for his mind to absorb, wrap around and to ponder (if the thought remains long enough) in his mixed up world.   “Are you ready for breakfast?” I ask.  “Of course,” he grumbles, “I haven’t had anything to eat all day.”

Another morning we begin with, “Today, we’re going to take a shower, Ken.”  “No thanks, I took one already.”  “Good, but we’re going to take another one because you really like showers.”  In addition to the words, it takes a little coaxing, a little direction, another reminder, “We’re going to take a shower,”  leading a bit, encouraging and pushing gently, still guiding and holding, into the stall where Ken sits on the waiting stool.  “Ahhhh,” he exclaims as Ben lets the warm water splash over him, “that feels so good.”  I’m tempted to say, “See.  I told you so,” but I don’t.   Instead I feel grateful for small successes.

Does giving instruction and preparatory information beforehand help and does it always work?  Sometimes, yes – sometimes – no.  There are times when I say, “Okay, we’re going to stand up.  One, two, three — stand uppppp.”  He stiffens like a rigid board and shouts, “No,” and then begins to jabber at the top of his voice, adding yelps and screams.  So we back off until everyone relaxes and calm prevails.  When he is quiet I get close to his ear (holding his head with my hand to avoid a head butt) and repeat what we are about to do in a calm, firm voice, “We’re going to stand up now and you can help because you have good, strong legs.  Okay, one, two, three – stand uppppp.”  Finally – cooperation — and up he comes with hardly any effort from me and Ben.  At times he will remark with a touch of sarcasm, “Why didn’t you just say so?”

Sometimes telling patients exactly what you are planning works, and sometimes it doesn’t.  With AD, there is no pat answer, but I believe the conversation helps and it’s worth a try.  Who knows exactly what goes on in the diseased mind?  I am certain that he finds some inner comfort in being told what we’re doing.  Perhaps it takes away some of the fear.  In any event, his caregivers and I will continue doing what we believe is best and what appears to bring about positive results.  Besides, when it does work it makes life more pleasant for all of us, and in the long run it is comparatively easy — nothing like it would be if we had to stick a needle in his eye.

Originally posted 2011-07-16 18:45:20.

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