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Posts Tagged ‘fear’

Decorated Christmas Tree

Even something as simple as putting up the Christmas tree could be a great help for Alzhiemer's caregivers.

In my last writing, I touched on attitude from those who might not feel the “necessity” of being part of a loved one or a friend’s journey into and through the Alzheimer’s experience because they couldn’t deal with it emotionally.  My response was simple:  “It isn’t about you.”

However, I thought it might be good to share some thoughts from other people.  I did receive a few comments from those who read what I wrote, and I find it amazing that this “attitude” is so common out there, but for various reasons.  Attitude is often what might drive a wedge through a loving family splitting them apart, or a supportive attitude and effort can pull that family closer together.

I also read an article from The Alzheimer’s Reading Room by Bob DeMarco where he asked several questions as to how a caregiver might feel when confronted with someone near and dear having the disease.  His last question, which really wasn’t a question, went something like, “Your life in caring for someone with Alzheimer’s has remained the same and has been unaffected with no complications.”  The first word out of my mouth was, “Ha!”  I wondered if Bob meant it as a joke or it had slipped by him in error.  More than likely it was a tongue-in-cheek attention getter.  Trust me, it got my attention and my dander standing straight up.  How can anyone who even has a remote relationship with an AD victim remain unaffected?  Then I went on to read some of the comments, various blogs, and mused previous conversations I’ve had with people.  I marvel at how different we all can be given similar circumstances.  The following are some excuses heard by not only myself, but by friends and family members:

     1.  Fear:  Friends or even family members may have some kind of distorted, sub-conscious fear that the disease is catching.  They may also fear that the caregiver might ask them to help.

     2Jealousy:  From a long-ago conversation, “Mom and Dad appointed you to be in charge of their health care, so do it.”  With that kind of attitude, it looks as if Mom and Dad were right.

     3.  Distance:  “I wish we could be more helpful, but we live so far away.”  As a retired couple, Mr. and Mrs. Wishwecould take lots of vacations, and always stop by to visit the folks for a few days and make a big fuss over AD Dad and Mom.  At least, that’s a good thing.  Could they do more?  Certainly. The Wishwecoulds need to extend their vacation for several days and suggest that the caregivers plan a respite during that time while they take on the responsibility of the folks for a few days – or more.  And, the caregivers need to assert themselves and make the suggestion if the offer isn’t forthcoming.

     4.  But I work:  Don’t we all, it’s just that many caregivers don’t get paid.  Even people who work have holidays and weekends.  They might even have some personal time coming, and then there is after work time as well.  I’m sure some kind of relief and/or help schedule could be worked out.  Caregiving isn’t an easy time for anyone.

     5.  But I do help: “Didn’t I bring you up to speed with the latest report on AD research?  Have I not become an expert on the disease?  Just ask me anything.  What?  You mean you want me to help clean him up?  Change his diaper?  Stay here with him while you go to the bank and do a few errands?  No. I’ll do my thing and you do yours.  Did I tell you what I just learned about AD on the internet?”

     6.  But I’ll give you my opinion:  “I really think you should put him in a home.  That’s where he belongs.  I don’t believe you know what you’re doing, and he could be a danger to himself and others.  After all, what experience have you had?  The neighbors think so too.”

     7.  Too educated to help:   “The adult children are either in higher education or have graduated, often appearing to be ‘above it all’ when it comes to actual help.  If they do anything at all, they become short-tempered with me and give me eye rolls at how I’m handling things at home.”

     8.  But what can I do?  When AD is diagnosed, there isn’t much to do, but as time goes on there are any number of things people can do to help.  Several years ago I was doing fine, and then my granddaughter, Katie, asked what she could do for me.  I said, truthfully, that there wasn’t much I needed.  Then she asked if she could help me put up the Christmas tree.  “That would be wonderful,” was my response.  And she did.  Several days after the holiday she called to ask if she could help take it down.  She did that too.  For those wondering what you can do, just offering to do some little thing might be the biggest help of all.

     9.  It’s all about me:  Those remarks I made in the last writing also apply, but they’ve been pretty much covered.  “It hurts me too much to see loved ones ill or in the hospital.  It’s too depressing.  I just can’t deal with it.”

    10.  I’m sorry, I just didn’t realize.  Actually, that’s not a cop-out.  Some people really don’t see the whole picture, so it is up to the caregiver to speak out.  Get beyond being hurt because you’re not getting the help you need.  Sometimes we, as caregivers, just have to humble ourselves and ask.  Furthermore, and after all is said and done, it’s important to be forgiving to those who just don’t “get it.”

I received a beautiful and positive comment on The Rusting Years from Chessa who responded by telling me that she was so glad she was there for her grandmother and now, after grandma has passed, she was able to write, “I often thank the Lord for no regrets of ‘should’ve’s’ ‘could’ve’s’….. only peace in knowing ‘we did.’”

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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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For a generation or more we have spent Christmas Eve with our daughter  Julie and her family.   In addition to her brothers and sister, with their families, there has been other in-laws, friends, cousins and anyone else who needed a place to be for the Holiday.   In the past Julie’s house has been noisy, crowded and filled with merriment.  However, as children grow up, get married, move away and are caught up in careers or have other new family obligations, our traditions are in a state of flux.   

Last night there were only five little ones under 10 plus  an adorable baby, Rylie Ann, moving from the crawling stage to the standing stage, and two young adult grandchildren.  Their contemporaries were 800 miles away visiting their parents, brothers, sisters and extended family.  It was that distant house filled with the sounds of Christmas we had been so accustomed to hearing: the very joyful sound of lots of children and young people. 

Ken’s Christmas benchmark was noticable this year.  He has become somewhat frail looking, and moves like an older man with faltering footsteps and waving arms rather than the robust mature person he was before AD.   As we approached the steps to Julie’s house I noticed he was fearful of venturing onto the stone-laid walk.  Even though he was supported by two of his sons, he felt along the stones with his feet wanting to be certain they were solid.  Once inside the house, I noticed he was much more subdued during the evening — almost like a shy, clinging child in new surroundings.   It’s times like this when I say he is like Velco. 

Later on, Ken felt more at ease and decided to get a drink of water in the kitchen.  Carefully, he meandered his way between the glass coffee table and the couch.  He did well, but on his return trip, he took a quick right turn at the middle of the clear table top.  (He has macular degeneration in his right eye and his poor vision is now even worse.)  Blindsided and in the dim lights of Christmas he thought the way was clear.   Suddenly, he was falling right onto the glass and into the sofa on the opposite side.  I could see him grimace as he went down.  Immediately, I worried that he might have injured his artificial hip.  The men who were close by leaped to his assistance, but being the stubborn, independent man he is Ken wouldn’t allow the help.  Instead he struggled to right himself.  Although the glass is about three quarters of an inch in thickness we were all concerned it might be broken.  If it wasn’t, the possibility of more pressure on its tilted position  against the base might be the final insult causing it to break and really do him injury.   Still refusing help, he managed to climb over the glass and pull himself erect.  The men picked up the top placing it back onto the supporting base.  No damage and no harm done except for Ken’s shin bone, which was pretty well skinned.

Within a few minutes he had forgotten the accident and settled down next to me.  All evening long he asked,  “Whose house is this?”  Repeatedly I answered, “Julie’s house.”  Not once, but it seemed like a hundred times.    Comparing benchmarks, I could see considerable change during the past 365 days.

We had dinner, opened gifts, exchanged small talk and everyone went home.  As soon as I entered the house I slipped him two Tylenol PM tablets.  He had been sleepy in the car, but by the time we got inside took the pills and brushed his teeth, I could sense him slipping into one of his other characters.  It could have been 12-year-old Buddy, who guards the house like a stockade with the Indians circling.   It was midnight and I was so ready for sleep, but wanted to wrap a few more packages.  He began pacing, rattling the outside doors to make sure they were locked.  After three or four rounds, I lost my temper and he ordered me to leave.  When he does this lately, I lock myself in the computer room and let him pound on the door while I busy myself with “whatever.”    He finally settled down and I wrapped my gifts.   It was 3:00 a.m.

When I woke on Christmas morning, it was 10:00 a.m.   Feeling somewhat refreshed, I quickly got up, dressed and spread out a small morning buffet to munch on when Keith, Sabina, granddaughter Jessica, and Kenney and Peggy came.   I wondered if I would feel up to driving to Antioch with the gifts for Sean and Lani and family.  That decision would come later.  The late-morning visit with two of our sons, their wives and Jessica was lovely.  I was glad they came.  Jess is such a sweetheart and had made me several gifts. 

Approaching 3:00, my morning family had other places to go and friends to see.  A little late for us to be leaving for Sean’s, but if we left right then, opened the gifts and had a bite to eat, we could be home by 9:00.   In addition, we needed to be home when Tim (Julie’s husband) brought their three dogs for a half week’s stay.  They were off to Atlanta to visit their son Pete, ReNea and their four-year-old son, Mason.

It’s been about three  years since we lost our last dog.  Even though I miss not having an animal in the house, I don’t miss having to clean up the piles of hair that seem to float in the air landing on and under everything.  Nor do I miss the compulsory yard duty clean-up brought about by their presence.   It will be interesting to see how Ken does with three spunky dogs.  Meanwhile, Happy Holidays.

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Last year I put up lights along the roof of our house, but found that Ken would turn them off as quickly as I turned them on.  I couldn’t imagine why he wanted them off, especially when we would drive through the neighborhood where he admired the Christmas scenes on other people’s lawns and beautifully lite homes.  Yet, he insisted that our house remain dark.

Recalling how he felt, yet wanting our house to look a little festive, I strung lights around the posts on the front porch and let it go at that.  Still, we played the off and on game.  Tonight, after standing on the porch surveying the other houses nearby, he came in from the cold extremely annoyed because “those” people had their Christmas lights on and there was nothing he could do about.  I agreed with him saying,  “That’s right.  There is nothing you can do about other people having lights on their roof and Christmas scenes in their front yard.”  Then I asked, “Why does it bother you so much.”  He had a difficult time formulating why he was so annoyed, but finally he was able to express his fear — and it was fear.

Looking very troubled he said, “When all those lights are on along the street there are criminals who will take advantage of it and will rob the houses.”   Surprised at his reasoning, I asked, “What has happened in the past to make you believe that our neighbors, or us, have been robbed during Christmas?”

Glancing at me with a show of contempt and suspicion he continued, “You don’t live here all the time so you wouldn’t know what happens in this neighborhood.”  Then he laughed, a mocking kind of laugh and said, “Just you wait.” 

He had become Mr. Hyde in the blink of an eye and I was no longer his wife.  He followed with, “Ask my wife about it when she comes home.  She can tell you about all that goes on around here because of the lights.”  Then he gave me another look that said, “I know something you don’t know,” which is a match for the “Just-you-wait” laugh.

As I have previously mentioned, Ken’s Alzheimer’s has created three distinct personalities:  Mr. Hyde who can be charming, friendly and is married, can also be mean, ruling and combative.   Buddy, around 12. a good boy devoted to his parents and his sister, Loretta, is obedient to the rules of their home.    When Buddy believes he has been left in charge he too can become combative.  I make every effort to maintain a guest-like attitude,which keeps peace in the house.  Of course, Ken, even in his forgetting, is the remaining third personality.  When he is my husband, it’s  the bright spot of my day.

When Mr. Hyde appears, it’s often with some sort of  paranoid disagreement.  Anger shows on his face and he begins his conversation with an accusation or argument.  That’s when I know it’s time for me to take the low road.  “Our discussion is closed,” I reply.  He doesn’t want to let his mood go attempting to provoke me into a further argument while still embracing his fears and paranoia.  The fear is real and I never try to scoff it away, but coaxing him into the family room is a distraction which often works.   Watching TV, looking at the Christmas tree and hearing me prepare dinner is relaxing and seems to quiet the angry mood.

It’s good to discover why he doesn’t like the lights, and I’m grateful when I hold my tongue.  It’s far better to remember how my husband enjoyed the Holiday and how pleased he was the first time we hung lights along the edge of the roof when his only fear might have been falling off the ladder.    2008

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