anger

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.

LETTING IT GO

If we could look back on all of the people who have helped make up our life’s tapestry what would it look like?  Colorful, I’m sure — often brilliant in its scope and varied in texture.   Supposing all of those people were represented by a different color — not a racial thing — colors from the Crayola box and no one can choose the same color.  Now look to see how those colors come and go — in and out of our tapestry —  each entry bringing new vibrancy, contrast and dimension.   At times,  though, our people must pack up their color and move away, but there are times when the color is gone because of a misunderstanding, lack of compromise, anger, grievance or whatever?   The reasons friends and often family members leave our lives isn’t important.  It’s what we do about it that counts.  Do we hang on to the anger/frustration/hurt or do we let it go, and in letting it go is the loom of life left open for more weaving with those colors later on, or it is closed?

On that tapestry there is a major section where there are two dominating colors:  him and her — male and female — husband and wife.  There are times when those colors are bright and other times when they appear dull.  While it is natural to not always agree — and that’s all right — the colors can be dimmed even more over little neglects, hurts, offenses or lack of appreciation just to name a few of the myriad of complaints that are a part of two people living together.   Take note, however, this isn’t about the serious crimes in relationships and marriages which might bring about breaking up or divorce.  It’s about the little irritating (and sometimes not so little) things and about letting them go.  I suppose this is all about forgiveness.

In the beginning of our marriage I was, admittedly, a pouter.  And I was very good at it.  Whenever there was a slight (and believe me I can hardly recall what most of them were) I would pout for a while — perhaps even a day or two.   Ken agonized while I pouted and finally he would apologize.  That’s what I was after:  “I’m sorry.”  Not only did his words say what was important so did his big, sad, hazel eyes.  An apology was always followed by immediate forgiveness on my part.   We never exchanged harsh words or names, nor did we yell at one another.  I pouted and he apologized:  our m.o. for years and years.

One evening at our home after a neighbor secretly spiked our already delicious punch, Ken got a bit tipsy (along with several other unsuspecting guests).  Recognizing his carefree state of being he announced to everyone in the room that I was going to be really angry with him.  Then he added,  “Well, at least this time I’ll know what I did wrong.  I’ve been apologizing for the last 15 years and I never knew for what.”   After that declaration I took note.   When he offended me I told him immediately why I was angry.  Total communication.  I was mad and he knew why.  Furthermore, his apology didn’t come as quickly as they had in the past because he now had to recognize what he had done and make amends.  Pouting — perhaps.  Apology — probably.  Letting it go — forgiving — eventually.

Alzheimer’s has taught me differently — just let it go — now.   When you live on a roller coaster, emotions carry you to highs and lows you never thought possible.  At times I have seethed with frustration and often feel anger to a point where I have to leave the room over things my stricken husband says or does.  Then a few minutes or hours later when he has forgotten he’ll seek me out looking so bewildered and with sadness in his eyes will ask, “Did I do something to make you upset?”    I know he can’t help not remembering, he can’t help being arrogant at times, he can’t help lashing out at me in his own frustration.  Then I hear his words as he recognizes me once again and he says, “If I have upset you, I’m sorry.”  I am swept with a feeling of calm, and to my own surprise I can truthfully answer, “No.  You didn’t do anything wrong.  Everything is okay.”  I have learned to let it go even when there can be no apology.

As I review my life’s tapestry there are a few earlier threads which have clashed with my present color scheme and in retrospect I don’t miss their shades and hues.  My tapestry is beautiful without them.   The past is gone and all is forgiven.  It’s just a matter of letting go and remembering the advice of a dear friend who said, “True forgiveness is remembering without pain.”

Originally posted 2009-05-04 02:09:34.

AFTER CHRISTMAS CHATTER

December 29, 2008 — Right now I’m so busy.  My friend, Madalyn, whose husband died last year from unrelated causes, but was into full Alzheimer’s, gave me her “reference” book:  The 36 Hour Day.  My days often seem to be that long, but even if I had the 36 hours I doubt I could get done all that needs doing.  Often it feels as if I take three steps forward and by the end of the day have dropped back three miles.

Ken and I have been in this battle with AD for the past five years, with each year becoming worse.  For the most part, however, I know that I am basically very fortunate.  I do count my blessings and give thanks daily for the health and strength we have.  I am so glad that he can still perform all of his daily tasks regarding his personal needs.  The accidents have been very few.   I’ve noticed, though, that he is becoming more self-centered.  Every movable item is of extreme value  to him whether it belongs to him or not.  He often takes things from any room, but especially from the bathroom relocating combs, a razor or toothbrush elsewhere claiming, “These are mine.”   The next morning he is very angry when he finds his razor and toothbrush missing from the medicine cabinet where he normally  keeps them.  I realize, though, that his missing items are the least of our problems and nothing compared to what many other people with AD or related diseases are experiencing.

I try to compare where we are on this bumpy Alzheimer’s road by reading articles and blogs from others in an effort to gain more understanding.  Wondering how others cope with hurts both physical and emotional I find it very frustrating when Ken doesn’t remember me and wants me to get out of  “his” house.  He often becomes angry and at times threatening.  When he insists that I leave I lock myself in the room we converted into an “office” which makes him even more angry.  He pounds on the door and yells at me, but soon returns to the family room where the TV has been entertaining an empty room.  After a while he has forgotten the incident, and I join him going about our regular routine.

Ken’s remembering me is an “at times” thing, but not remembering makes up the majority of our days.  I recall how hurt I was the first time he didn’t recognize me and I cried.  Amazing how we do adjust to “what is” even though we don’t like it.  Our marriage had been a close and loving relationship and now it seems more like a child’s see-saw with all of its ups and downs.  I suppose it’s all part of accepting those things we cannot change.

Moving right along, Tim did bring the dogs.  Ken enjoys them and misses having a devoted pet.  He doesn’t remember that our two dogs have been gone for a few years and often goes to the back door and whistles for them to come in.  I am saddened by the action and I’m also sure he would enjoy the loving company of a another dog, but I have as much as I can handle caring for him.  The dogs on loan confirm that decision.

Individually, our hairy coated guests are very nice, but with three they seem to conspire.  Each morning I find that one of them has been naughty — possibly all of them depending on the size of the lake in the middle of the floor.  The three just sit there, all  in a row, looking up at me with such innocent faces as I accusingly gaze at the puddle and then at them.  Following my glance all six eyes seem to say, “It wasn’t me.”

Tonight one of three got behind the Christmas tree and tipped it over.  Oh, well.  Time to take it down anyway.  There were several ornaments on the floor with the three sitting silent — watching — their sweet faces taking on that look of sincere innocence once again.  “I won’t even ask,” I said to the trio.   I quickly picked up the tree, righting it as best I could, and then gathered the tempting objects scattered across the floor as I was certain they would be the chew-toy choice for the night.

As much as I love these adorable canines, and their company, I must admit that I am looking forward to one happy day next week when the triplets go home.

 

Originally posted 2008-12-29 06:21:20.

IGNORANCE IS ALIVE AND WELL

June 29, 2012 – I cried today for Virginia even though we’ve never met.  If she and I were close enough I would

Caregiver crying

No matter what caregivers do, sometimes it’s not enough. It is important to not feel guilt for circumstances beyond one’s control.

have put my arms around her and we would have cried together feeling the despair, the anger and the guilt. I suppose I cried for humanity as well, for its ignorance and for all those who are afflicted with any of the diseases found under the Dementia Umbrella.  I would have cried for the countless numbers of caregivers because it’s the caregivers who feel so responsible living constantly with the “burden” of that insurmountable weight of accountability, and the awful smothering blame we feel when something goes wrong.  What happened to Virginia’s husband James was terribly wrong. Continue reading

Originally posted 2012-06-30 04:37:53.

ALZHEIMER’S, HEALTH AND ANGER

Angry man

Anger is a part of Alzheimer’s, and is present in both caregivers and AD victims.

April 20, 2012 — Do Alzheimer’s patients get angry?  Absolutely!  However, I see Ken’s anger is more of a defense mechanism – a reaction to an immediate situation he can’t control: he growls,  hisses, grumbles, or shouts profanity and can be combative as part of the anger he spews upon me, Ben or Crizaldo when he feels threatened or doesn’t understand what’s happening, and then it’s quickly dismissed – usually.  He doesn’t hold onto it because his anger isn’t the same anger he may have felt when he was well, or even in the mild cognitive stage of his Alzheimer’s. Continue reading

Originally posted 2012-04-21 05:34:14.

THIS LITTLE PIGGIE WOULDN’T DARE GO TO MARKET

Sweet tiny baby toes can turn into a monstruous care job for people with Alzheimer's.

What miracles we all were, slipping into this world soft and cuddly with skin as smooth as a dish of newly churned butter, a patch of hair – or not — and fingers and toes — miniatures of perfection.  And then we begin to grow into the person our genetics will make of us.  A few months later a mother coos, her thumb and forefinger wiggling a small delicate appendage located at the end of a tiny foot, “This little piggy goes to market.”  The gentle movement sends tickles through the rest of the baby’s toes and the whole of this small scrap of humanity bursts forth into a cascade of delightful giggles so contagious that all assembled laugh with him.

A decade or so later the foot has booted a few soccer balls, been on the ground side of sliding over home plate with the winning run at the Little League Park, and got itself (and owner) in trouble for kicking dirt at the umpire.  Before he rents the shiny dress shoes for his senior ball those same feet, grown to measure nearly one “foot” or more will have been stomped and tromped by the opposing football team more times than any young man cares to remember, and if he steps on the toes of his date, or she steps on his it won’t matter, because – with feet and toes — there’s always more abuse to come.  It’s all part of the battering the lower extremities take during a lifetime.

They’ll be bruised and banged, sprained and strained, stubbed and rubbed, tubbed and scrubbed, stepped on, dropped on and possibly run over before getting the pampering they deserve after years of unrelenting service.  “Hon,” Ken called out years ago, “can you cut this one toe nail?”  My first thought was not one of wifely cooperation.  I didn’t want to cut his toe nails.  “Can’t you do it?” I retorted, wondering when he had become incapable of caring for his own feet, and fearing his toe nails were beginning to look like those once belonging to his father.  Reluctantly I ventured in to find him struggling to get the clippers to cooperate.  That’s when I noticed.  Yes!  His toe nails were changing – becoming thick and yellowish — taking on an appearance almost like the talons of an eagle.   

I had cut his father’s toe nails a few times when we couldn’t get him to a podiatrist.  They needed to be soaked and softened making the task manageable.  Looking at Ken’s troublesome toes I told him to soak his feet.  “You’ve got your father’s yucky toe nails,” I concluded, as I began snipping away at the thick mass.

We later found out that it actually is somewhat of a genetic thing.  Not so much guaranteed, but Ken has the gene which causes susceptibility to the fungus causing the nail to thicken and turn brownish-yellow in color – no doubt inherited from his father.  It became my chore as the symptoms became worse to trim his toe nails, which was all right.  Over the years I had trimmed lots of toe nails for our older relations – and all were relatively easy with ordinary clippers when no fungus was present. However, I found the best tool for Ken’s yellowed toe nails was a small pair of pruning shears (which I dowsed with bleach after every use).  Their ability to snip through a tough branch made them ideal for snipping through the thickness of an ailing toe nail.

Apparently, having a predisposition to onychomycosis is quite common and the fungus is very opportunistic latching on to a victim at swimming pools, showers and other public places where one might be barefoot.  Not having the gene, my toe nails are just fine, but some of my children are showing early signs of toe nail fungus.

There is a medication on the market which, supposedly, eliminates the intruder.  The ad on TV was so disgusting I always turned away after I had watched it a few times. This ugly animated creature (the fungus) lifted up the nail of the big toe and with a devilish smile climbed inside making itself right at home and settling in for the long haul.  The thought and the ad gave me the creeps.  Furthermore, in reading the lengthy list of side effects my conclusion was that no one should be taking that particular medication for any reason even for yucky toe nails.  However, I also understand that it works especially if, all of your life, you’ve been kind to your liver which has an awful lot of extra hard work to do while coping with the toenail drug.  I have also read recently that the fungus can be treated with Laser if caught before it becomes too entrenched.  Furthermore, some of the essential oils, such as tea tree oil, do a good job as well.  I’m glad there is something for so many out there troubled with this intrusive nuisance.

Ken’s foot problems, though, are beyond striving for a cure.  Just getting the nails cut is the challenge, and getting him to the podiatrist – any of his doctors — is a pull-out-all-the-plugs effort – gargantuan — but it’s worth it.  Ben came an hour early so we could get everything done: out of bed, into the bathroom, cleaned and shaved, into the shower, out, get dressed, into the kitchen for breakfast.  “Good,” Ken grumbled, “I haven’t had anything to eat all day.”  Up from the table and into the wheel chair, out the door onto the driveway, out of the chair into the car.  “Move over so Ben can sit next to you,” I encouraged.  He growled because he would just as soon drive away leaving Ben at home, but Ben managed to squeeze into his space.  Besides, we need Ben. Off we go and we’re actually going to be there on time.

Once we arrive at the medical offices and no matter how bad Ken’s AD gets, it appears he is still putty in the hands of a doctor.  He sat down in the chair – Ben did hold Ken’s feet to prevent him from punting the good doctor into the hall if he took a mind to be combative.  With firmness, I gently held his hands and Dr. Laura trimmed the toe nails.  Within five minutes it was done.  “There,” she said, patting Ken on the knee, “That will hold you the next three months.” 

I am on top of the world, reeling with success when we have a good day.  A good day is when plans are made and the task is completed.  With a smile and a sigh of relief I said, “Let’s all three of us get into the car, go home and have lunch.”    “Good,” grumbles Ken.  “I haven’t had anything to eat all day.”

Originally posted 2011-08-27 23:34:53.

CAREGIVERS: UNPACK THE ROCKS

pile of rocks

August 3, 2011 — As a Scout Master Ken spent part of many summers as a Boy Scout camp counselor.  For some of the young men it was their first experience in the great out-of-doors where they also earned a portion of their merit badges.  However, Ken always believed the troop could do more. During a planning meeting with the assistant Scout Master and some of the dads, it was decided to put the boys to a greater test:  a 50-miler up and over some of the high terrain of the Sierra-Nevada Mountains.  The idea was received by all with great enthusiasm and after the first year it became an annual event.

Preparation was paramount and the Scouts did their exercises by strapping on a fully loaded pack and hiking into a designated camping spot several weeks in advance to make sure they were physically ready for the challenge that lay ahead.  None was more eager than 12-year-old Mark who had looked forward to beginning his Scouting experience and the summer’s challenge.  Like many typical pre-teen boys Mark had not hit a recent grown spurt still holding on to the knobby knees and colt-like legs of childhood.  Yet he was determined to meet the qualifications of the pre-hike semi-Bivouacs.

In the minds of men working with boys there is a purpose to what they do.  With each 50-miler the adults hoped to instill something more than just a week in the wilderness.  Countless opportunities lay in abundance including self-grown —  the physical and emotional challenge of accomplishment.  As an adult Mark looks back on the entire experience with fond remembrances which he has allowed me to quote.

“I so looked forward to being included in the 50-mile hike the troop took each year.  Everyone prepared for it with mini trips, but there is nothing like the real thing, which took us into the Hetch Hetchy Reservoir area near Yosemite.

“We hiked 10 miles the first two days which was grueling as we made our way up the mountains ascending to heights which none of us were accustomed.  The switchbacks taunted us as we made our way back and forth and up.  It seemed my backpack grew heavier with each turn of the trail.  At the top of the last set, I discovered why it became more weighted every time we rested.

“A few of the older scouts felt it would be amusing to see the expressions on the faces of the two 12-year olds as they discovered they had carried a few stowaway rocks up all of those switchbacks.  I laughed, but was secretly thankful for those rocks from that time forth.  After liberating them from my pack, I found I had no problem carrying the lighter load.”

Mark learned a very profound lesson early in his life, and he continued to apply the importance of eliminating excess baggage – rocks — from his journeys through life.  As caregivers we need to remember to strive on a daily basis to do the same.

After being away from home for three months following a horrific automobile accident, I returned to the familiar, yet the unfamiliar.  My life had been drastically changed. Ben was taking care of Ken, for which I was grateful.  Not being the same as I had been I wasn’t able to get back to status quo, nor was Ken the same.  His battle with Alzheimer’s now included him having to adjust to all of the new changes in his life.  Ben was new, the routine was different, his abilities had been greatly diminished, and my late entry caused him to become more confused.

Even with his AD I wanted life to be as it had been before the crash.  I knew where he was and right where the two of us had been in living and dealing with the disease.  Now I had to start my relationship with Ken all over again while still nursing my own hurts and injuries.  Consequently, my disposition was definitely wanting.  “Are you mad at me?” he asked one day during a lucid moment.  “No,” I answered, “I’m not mad at you.  Why?”  Sadly, he looked at me and said, “Your voice always sounds as if you’re mad at me.”

That caught me off guard, and I thought about our conversations – minimal though they were – I realized he was right.  Whenever I spoke to him, whether he was Ken or Mr. Hyde or Buddy (his various personalities) I could hear the irritation in my voice. So I had to ask me if I was mad at him – angry with him — if so, why?   Thus, I was back to soul searching – which I have had to do every so often. Yes.  I was angry and I was taking it out on Ken, including his lucid moments.  Moments, so few and far between were being wasted with my irritation.

However, I was feeling anger because of all the time lost being badly hurt and having to take more valuable time to heal and to go through physical therapy.  Angry because I couldn’t do all that I had done before.  Angry because I still wasn’t my old self, angry because I had continued discomfort and pain.  I was angry that Ken had Alzheimer’s, and angry that there was nothing I could to about it.  If he noticed the irritation in my voice, did I have the same irritation when I spoke with others?  After a little soul-searching, I knew it was time for me to begin removing the rocks in my mental and spiritual backpack, and in so doing I would also find some peace.

Nothing is instant – except maybe potatoes and coffee – and I knew it would take time for me to bring about my goals.  The first baby step was to stop taking out my anger and frustrations on other people – especially Ken.

As a caregiver, I cannot change anything with anger, neither can I undo yesterday, nor can I cure incurable diseases even with over-the-top anger. Being angry only adds a heavy rock to my already burdened life, and as Mark said, “After liberating the rocks from my pack, it was easier to carry the lighter load.”   Little by little I have managed to remove the rocks of anger.  I also lighten my load by striving every day to find something to laugh about with Ken – maybe not with him – perhaps with Ben or Criz.  We can laugh about something Ken does because at times he and other AD patients are funny and it is okay to laugh. If you haven’t laughed all day then read a funny book or rent a funny movie, but laugh. The more I laugh, the more I can let go of anger and any other negatives which are always nearby and ready to sneak into my backpack.

This past year plus has changed Ken a lot.  He seldom has lucid moments when he can manage any sort of conversation.  Whatever he jabbers it’s without logic.  His other personalities are gone.  There is no Buddy, nor does Mr. Hyde visit, but that’s all right.  They were both rather disagreeable characters.  What’s left is a small portion of Ken who makes little sense. We are where we are in this life, and I know I must strive to be continually accepting.  In doing so, I often remember the serenity prayer, which I’ve always liked.  It’s so applicable for those of us who journey together with our Alzheimer’s loved ones:   “God grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.”  So now, let’s begin by liberating the rocks, including the tiny pebbles of negativity, from those heavy backpacks.

Originally posted 2011-07-03 03:06:39.

CAR KEYS AND GIVING THEM UP

car keys

Giving up the driving privledge can be difficult for some Alzheimers’ patients.

Rose had stopped driving on her own volition relying on Nick’s ability to see that the two of them got to whatever destination was necessary. She made a list of needed groceries and told him he could do the shopping as well.  Forgetting to refer to the list, his selections alone should have tipped us off that he wasn’t thinking sensibly.  More often than not he came home with what he believed to be essentials: peanut butter, bananas, milk, bread and Sweetie Pies.  The pies, consisting of a large 3” cookie covered with a marshmallow of equal size and held together by dipping the treat in chocolate, had become his favorite dessert.  Sealed in individual packets of cellophane, his choice came 12 to a box, and he always bought two boxes.

That all changed when his driver’s license came up for renewal.  He didn’t do well with the written test, but the examiner believed his reading skills might be off, so the test was given orally.  He passed, but for his age he was required to take the mandatory driving test.  He didn’t think it a problem, but asked Ken to go with him.  Alone in the car with the examiner, he made a poor choice resulting in a near accident.  “Stop the car,” bellowed the examiner.  Shaken amidst honking horns and cursing drivers, the examiner drove Nick back to the DMV where Ken was told, “Your father is not capable of driving a car.”  Nick was outraged, insisting he had been tricked.  “The examiner was prejudiced against me,” he lamented, “because I’m old.”  His anger, however, didn’t last more than a week or so when he found that I would drive him and Rose anywhere they needed to go.

It all came together about the same time: their growing list of needs and my availability.  Nick still liked to do the shopping, but with me by his side, we bought a lot more “real” food which Rose continued to cook, but he still was allowed his Sweetie Pies.

Later, at another time and place I found that relieving my mother, Irene, of her driver’s license posed no problem.  Like Rose she just stopped driving, allowing the license to expire.  Dad was the driver and had been for years.  Always a one-car family, he took it to work and she used San Francisco’s public transportation or walked during those mid-life-plus years. She applied for a license only when they moved to Northern California’s Sonoma County.

It wasn’t as if she didn’t know how or had never driven a car.  In the farmlands of eastern Utah Irene had cranked and bounced their old truck over mountainous, rutted roads without hesitation.  It was city traffic which kept her in the passenger seat.  After their move to a more peaceful landscape, and knowing her capabilities Dad insisted she get her license.  He was not happy about being her chauffeur whenever she wanted to go somewhere.  Country living did not provide the same transportation convenience she had enjoyed in the City.  A little study and a little practice and my mother earned her license, driving herself when my father couldn’t – or wouldn’t.  It was as simple as that, but after several years of additional age and recuperation from a broken hip she decided her continuing to drive just wasn’t important.

I’ve always been grateful that family, which included me, didn’t have to be the bad guys when it came to taking away the car and the car keys from any of our parents. Even at 88 my father (who had no sign whatsoever of AD) handed me his car keys because my driving both of them answered all of their needs.  Willingly, he surrendered the keys, but not the car.  We always traveled in his big, roomy Chrysler which, next to Mama, was the love of his life.

Sometime before Ken was diagnosed with AD there was a close-call incident for us and three pedestrians which gave me cause to question his driving responsibility and understanding of the laws – let alone common courtesy.  He needed to make a right turn.  We had a green light and so did the three pedestrians who were midway through the cross walk.  Rather than wait until they were safely on the sidewalk, he right-turned in front of them allowing less than three feet of space between them and our car.  They filled the air with well-deserved profanities. His reply, “Stupid people.”  After I closed my shocked mouth, I reminded him they had the right-of-way.  “I had the green light,” he snapped.  “So did they,” I returned, “and you know the law: The pedestrian ALWAYS has the right-of-way.”  That led to a ridiculous debate about jay walking and all of the other possibilities where the pedestrian was still in the right when it came to an automobile vs. a human being.  We argued until we reached that moment of agreeing to disagree, but his change in attitude was troubling.

The entire episode had surprised me because if anything, Ken was a good, courteous and responsible driver with quick responses.  I suppose in retrospect I should have listed the incident with the other occasional happenings which were proving to be more and more suspicious.  In my heart of hearts I knew that Alzheimer’s disease would be part of our future, and I needed to begin thinking about how he would respond to having his car keys taken away.  Furthermore, how would I manage the dirty deed without making him furious with me?

Actually, the surrender of his keys was very smooth.  Once diagnosis was made, our neurologist said that he must report his findings to the DMV.  He did. Three months later Ken failed the scheduled written test so miserably the driver’s test was disallowed.  Shortly thereafter, we had a follow-through appointment for a personal interview where a final and absolute decision would be made.  Ken was asked many questions; some having to do with driving, others just about the world and life in general.  In conclusion, the DMV examiner stated, “I’m sorry, Sir, but you shouldn’t be driving.  Your license is revoked.”

Ken, the affable person he always was, reached over and shook hands with Mr. Spoiler wishing him a nice day.  Ready to cry, I turned and left the room.  Disappointed and furious at hearing the decision I was angry with everything: the world, the examiner, his biased questioning, the DMV, life and its unfairness, the rainy weather, the negatives that came with getting older and Alzheimer’s – and the list went on.  I suppose much of what I felt was the weight of overwhelming responsibilities which were falling on my shoulders one by one.  Now I had to be the driver in addition to everything else.

Time, they say, is the great healer.  As Ken’s disease became more and more evident, I realized that I was grateful that Mr. Spoiler and the DMV had, once again, been the bad guys in taking away his license and car keys – his privilege to drive — having spared me telling him that he was no longer capable of operating an automobile.  How does one tell their loving husband, or their mother or father who have become victims of these horrible mind diseases that they have become incompetent, useless, bungling, inept, ineffectual, unskilled and are no longer of value?  You don’t.  Of course you don’t.   Instead, you just take possession of the keys and remind these same exemplarily people who were once so amazing, so talented, so wonderful, so needed and so full of life – who had contributed so much to our society — that they are still cherished, respected, and most of all – they are loved.  And you tell them often – even when you believe they no longer understand or hear what you are saying, you keep telling them.

Originally posted 2011-06-26 04:51:05.

LOST, ABANDONED AND OTHER DESPERATE FEELINGS

lost shoe

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.

Originally posted 2011-03-21 23:17:12.

JOHN PHILLIP SOUSA, SMILEY FACE AND ME


Diversion! Change the subject.  Distract them.  Good suggestions to anyone who is the caregiver of victims with Alzheimer’s disease.  In so many ways AD patients are much like children except people with AD are regressing and children are happily moving forward. One experience is filled with joy and the other is filled with sadness as a loved one leaves us one memory loss at a time.  Yet we, as caregivers, continue on – striving to do our best, seeking advice, often relying on our own years of experience — even dipping back into useful techniques from long ago when life was fresh and our children new.

When the little ones were naughty, had tantrums or got into things such as managing to grab Great Grandmother’s bone China tea-cup, you made every effort to change their focus: distract them, divert their attention, or trade a bright, shiny ball for the family heirloom.  At times there was success, and other times there was limited or no success at all.  The same variables are evident when working with AD patients.

There are times when a scrap of memory triggered by some kind of distraction or recollection can change a mood, take their mind away from destroying the TV, or at least turn their interest from stripping the back of all the wires, to something else. Other times you can make them an offer they can’t refuse (which generally doesn’t work because most severe AD patients are beyond reason) or, in desperation, you can pack up every movable object in the home and box it up – for later – whenever that is.  However, just as with toddlers and young children, problems aren’t always solved by “putting things away,” especially when your challenger is tall and strong.

Even more difficult, though, is directing the loved one into going somewhere, or doing something he doesn’t necessarily want to do – especially if it involves keeping him on a halfway-acceptable schedule.

In our house, and unlike our babies and toddlers, shower time (bath time for babies) is not Ken’s favorite thing to do, although it might be if he could remember how he once enjoyed a good hot shower.  Understandably, I believe this particular territory of “personal” hygiene is his last bastion of independence, and I can’t say that I blame him, but it’s also something where he needs a little help and guidance from his caregivers and me.

I have written before about how music does soothe the “savage beast,” and how there have been times when Ken’s mind seemed to relax and clear a little as we listened to sounds of the “Big Bands” on PBS.  Our music and even music into the 60s has filled a few of our evenings with good memories during this time of so much loss.  For me it seems so logical, so reasonable that familiar melodies from the past can work magic through the muck of a diseased mind.  I am convinced music can and does help if only on a temporary basis.  Recently, I thought I would give it a try during shower time.

With my husband a former Navy man during his very young years and WWII (with extended loyalties to the Marines because of his father’s service years) I began humming a few of the marching songs during morning cleanup.  The 4/4 timing, I thought, might be of help as Ben and I guided Ken toward the bathroom and through his routine.  Furthermore, I reminded him of his waiting “dress blues,” the parade grounds, and how important it was that he be ready to join the other men already marching.

All of this military-type music was worked in with my chatty talk about his service years, his father, the Leathernecks, and Dad’s eight years in China.  Possibly, the familiar rhythms struck a chord deep inside his muddled brain because he seemed a little calmer, and while he didn’t speak of his father, he did convey a few unrelated sentences in a pleasant, conversational manner.

He also seemed to respond to Anchors Aweigh – with me singing what I had learned in Mrs. Mahoney’s “Music I” class to show our support for all of our fighting men during the Big War.  Directing his attention to a navy blue sweat suit I asked if those were his dress blues and was he ready to hit the parade grounds as soon as we were finished.  Using no words, his look was one of positive response, and the best part was he was calm.

Encouraged, I continued with my daily melodies often falling back on John Phillip Sousa’s “The Stars and Stripes Forever” whenever there was a lull and Ken’s attention began to wane.  Too difficult to hum, my voice instrument (Mrs. Mahoney said my voice had ranges in the key of flat) entered into the “da – da – da da daaa – da da daaa – da da da – da da da — da da daaaaa — da……”   I even sang the words I had learned as a youth about being kind to our web-footed friends, for the duck may be somebody’s mother…… which seemed to amuse Ben, who, up to that point, hadn’t commented on my latest effort of introducing music into our routine.

I have now branched out — for several reasons.  Monotony can become very irritating.  I doubt that Ken remembers any of yesterday’s happenings, but I need our caregiver, Ben, to also remain calm, cool and collected.  So my morning rendition is more of a medley of many unrelated songs which has become a part of my singing/talk conversation including, “Good morning to you, good morning to you…. using the tune of Happy Birthday.  “Oh What A Beautiful Morning” from the musical Oklahoma came to mind as my memory door opened to dozens of other songs from long ago.  When Ken’s eyes or attitude tell me to stop – to divert – I do — and then I talk for a while – striving to be upbeat and encouraging.

Do I believe the variety of old familiar music (including marches) helps?  Being reminded every morning of something from his past may have pulled up shadows of memory. If nothing else, I do believe it helps him change his focus, even to the point where today he sang a few “Good mornings” back to me.  Does positive reinforcement help?  It all remains to be seen, but what I do know for certain is that the experience is a diversion, and anything that can change unpleasant into at least tolerable, or better, is a good thing.

Diversion worked with our babies.  All the while we splashed them with tepid water we cooed and smiled and whispered sweet words of encouragement and affection, and they responded with equal coos and wonderful toothless smiles.  It wasn’t much different as they grew a little older, and I checked out small ears after a day in the sandbox.  I had my own sing-songy song to tell about their dirty ears:  “Car rots, po ta toes, cu cum bers and squash; A veg’ ta ble gar dens in your ears by gosh. “And they responded with laughter, shiny faces and  smiles filled with baby teeth.

So when our loved ones become old and sick, isn’t it beneficial – and kind — to muster up a bunch more patience, a few silly songs, cheering marches with John Phillips Sousa, and – yes – an extra splash of love to help them through this very difficult time in their life?  I have also found that – sometimes — especially when I smile at him – he may give me a broad, warm and wonderful smile in return — just like the one he gave me the night we met.  That’s a diversion for me as well, and a reward.

Originally posted 2011-02-20 05:00:21.

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