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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.

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The first week of November is a different time of the year for a 40th Class Reunion, but for whatever the reason, I was really looking forward to having our oldest daughter, Deborah, travel from Utah for the event and spend a few days with us, as well as her children and grandchildren.  She and husband, Mark, moved to Utah when he was downsized from his graphic arts job, located just south of San Francisco, with a package deal for an early retirement.

Wisely, they took their California money, retirement from her school teaching job and settled in Ogden.  The good part for them is they have several children who also live in Ogden; hence, grandchildren.  So wherever they are — Bay Area or Utah — there is family, but we miss them.

Our other four children, three boys and a girl (correctly put, it should read three men and one woman) live no more than an hour away from us, and that’s a good thing.  In the event of an emergency for either Ken or me, someone is only moments away.

Interesting, though, whether they live a mile away or 800 miles away, Ken doesn’t know any of them.  When Debbie arrived she greeted her father with a non-threatening hug and, “Hi Dad.  I’m your daughter, Debbie.”  He viewed her with suspicion and replied, “I don’t know about that,” which is similar to the same response he gives the others, even me.  His very brief moments of knowing me are sandwiched in between his mood swings amounting to not more than 10 to 15 minutes each day.

Even if the visit is lengthy it doesn’t matter; further recognition of his children does not take place as the hours move on.  All of us are just “someone” to him, as I was only “someone” to my mother as she slipped away into the more advanced stages of AD.  It was the same way with Ken’s parents, Rose and Nick; we were nobody, welcome nobodies, a few middle-aged people who kept showing up for a visit.  Their memory of family was and is gone.

I’m not sure if acceptance is an instant thing or if it’s gradual — probably a little of both.  When those first tears stop is that total acceptance?  Or is it when the patients look at the beautiful faces of family and sees them not?  I’m also certain that the timing is different for each family member.  Furthermore, acceptance isn’t just about the disease, there is always something new to accept as the victim spirals down the bottomless staircase.

In a recent response to my Blog, a follower mentioned that when the family fully accepts that Alzheimer’s is terminal, they could better come together in determining what is best for the victim.  That’s true, but, again, each case is very different and must be carefully evaluated.

For Ken’s parents and their particular situation and condition, we found it best to place them, at different times, in full-care facilities.  My mother, however, remained in the family home which included my father (with a live-in caregiver) until she took her last breath.  These decisions even in retrospect, for all of us, were what we believed to be best, not only for the AD patient, but for all concerned.

Never meaning to undermine the wrenching decision of children being called upon to put their parent or parents in a care facility, that relationship doesn’t compare to decades of intimacy and oneness shared by a husband and a wife.  Nor does anything compare to the agonizing decision reached by the well spouse who finally must declare, “Now is the time.”  And then, it is with support of family, all agreeing, that placement is necessary, which includes that which has already been declared and accepted:  Yes!  Alzheimer’s is terminal.

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Growing up in San Francisco, the sidewalk was the gathering place and playground for neighborhood kids on a summer evening.  I would like to say a warm summer evening, but in the City that wasn’t usually the case.  More often than not great rolls of billowing fog tumbled over the tops of Twin Peaks cooling what was left of a pleasant day, but we didn’t mind.  Living four blocks east from the base of those famous hills, my sister and I tossed on a sweater as our mother had instructed, which was quickly removed and discarded into a pile as the out-of-doors games began:  “Kick The Can,” “Hide and Go Seek,” “Tag, You’re It,” naming only a few, and one of my favorites, “Mother May I?”

I have often wondered if its origin came from a frustrated school teacher in an effort to educate the players about the difference between “may” and “can;” permission and ability.   Wherever it began didn’t really matter, “Mother May I?” was fun and if we learned a bit of correct English along the way, it was a bonus.  With the mother in control, and controlling she or he was, everyone else was a child, all standing 20 or 30 feet apart form the mother.   A line, imaginary or real was established as start and finish with all the children equally spaced on that line.  One by one the mother would call each player by name giving an instruction, and then wait for a response to her command:  “Take one giant step forward,” “Take three steps back,” “Jump forward on one foot four times and turn around.”  Any instruction mother dictated, the player was obliged to do.  Before setting forth, though, the player had to remember to always ask, “Mother May I?”  The mother then responded to the polite request with, “Yes, you may.”  However, the mother could be mean and say, “No, you may not,” and proceed to the next player.  If the player stepped forward without asking permission, she/he had to go back to the beginning and start all over. The winner, of course, was the one who remembered the magic phrase, resulting in reaching the mother and then returning to the finish line first.  The winner became the new mother.  Kids’ games; silly but fun, and pleasant to remember.

Alzheimer’s patients can be very territorial, not only with the house, their room, the car, the newspaper, the mail, or a worthless used napkin.  The list, actually, is endless.   Their life is extremely guarded as is their space.   After several years of living with Ken’s AD, I have found the relationship we share is seldom that of husband and wife.   If for a brief time, my husband is present, he can disappear in mid-sentence, or in mid-action.  Early on Ken was sweeping the kitchen floor — and it was Ken who took out the broom.   I called over and asked him if, after he finished, he would do something else for me.  I don’t even recall what it was, but in an instant he stopped sweeping and armed with broom and dustpan, he stormed over to where I was and growled, “Stop telling me what to do!”  When he becomes threatening, I match his threat in no uncertain terms, which usually ends in a standoff.    Had I been more astute at that time I could have, possibly,  averted his outburst.

Over the years I have learned to be more sensitive to his personality changes and his territorial domain, which is so much a part of being respectful to him as a person.  I have also rekindled the phrase of an old childhood game.  While I don’t say, “Mother, May I?” I do approach him slowly and ask, “May I….?”  If I approach too quickly and reach out to straighten his collar or button a button on his shirt, I may get my hand shoved away, and through gritted teeth he will warn, “Get away from me.”  I have long since stopped being hurt by these actions and remarks because I know this person is not the man I married.  More than likely, he feels like a trapped and frightened animal, fearful of me and my actions, no matter how well-meant.   But I have noticed that if I approach with caution and gently ask permission, using the magic phrase, “May I help you close the blinds?” “May I straighten your collar?” “May I button that one button on your shirt?” or “May I sit next to you on the couch?” and then wait for him to respond.  At times he says, “No,” or “No, thank you,” but other times, if he’s comfortable and not threatened,  he will say, “Yes, you may.”

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