Alzheimer’s caregivers

ALZHEIMER’S TIME TRAVEL – SOMEWHERE IN TIME

movie poster Somewhere In Time

A romantic time travel movie has this caregiver reminiscing the similarities with Alzheimer’s.

REMEMBERING AN OLD FAVORITE TIME TRAVEL MOVIE

 January 17, 2014 —  If you saw the movie I doubt you’ll ever forget the intensity of their love.   Christopher Reeves and Jane Seymour together in a time travel romantic story that became a cult film classic.  No, neither of the characters had Alzheimer’s, but their experience is a mind-blowing concept.

There he was, handsome and suave, even without his Superman costume, but instead of being Clark Kent, Reeves’ protrayed a young man named Richard Collins who was celebrating his first writing effort at the college premier of his successful play.   Moving past his friends is an old woman who says simply, “Come back to me,” and at the same time gives him an old pocket watch which she had given him during another time and at another place. Continue reading

Originally posted 2014-01-19 04:31:24.

THE CAREGIVER CALLING AND ALZHEIMER’S

DEFINING A PERSON

 My daughter Debbie has a master’s degree in education and taught children with special needs before taking an early retirement.  One of the most important instructions in teaching her students was to always identify the children as who they are not what they are.  Better said you would refer to Jamie as one of the students who has cerebral palsy; not as my cerebral palsy student, Jamie. 

DEFINING CAREGIVING

She uses the same terminology when speaking about her father:  “My father who has Alzheimer’s disease.”  I like that. It gives her father, my husband Ken, the dignity and respect he deserves; the same dignity and respect that everyone deserves.  Thinking along these lines I can hear Crizaldo telling me that being a caregiver is a calling.  I love the way my husband’s caregivers work with him with such kindness, such gentleness.  No matter how stressful Ken may make the situation, Crizaldo, Ben and David are calm – never losing their temper or becoming irritated.  Calling:  In that declaration I believe he is referring to professional caregivers, but then again it could also apply to a family caregiver who is so dedicated in caregivng for his/her charge that it too might be a calling.

 Nevertheless, I see these men in my life who help with Ken as very special people, and yes, people with caregiving callings. Unfortunately Crizaldo tells me of people he has worked with in care facilities that do their job but without the dedication and gentleness of a calling. Continue reading

Originally posted 2013-09-15 20:10:42.

LOST AND NOT FOUND

man lost in woods
People with Alzheimers may wander away, never to be seen again.

A while back I wrote for the magazine section of our local newspaper’s  Sunday edition, aptly titled “Brightside.”  

The articles were to be just that: bright and happy stories, good-news stories about people; what they were doing, interesting hobbies or talents, about gardens – either beautifully filled with flowers or vegetables, do-it-yourself projects or whatever was out there to make someone smile.  The section was all about people found to be on the “Brightside” of life.

 

It was before conglomerates gobbled up all of the family-owned newspapers pulling them into vast impersonal syndications buying most of their stories from a news service.  It was a less-hurried time when people actually read the bulging paper tossed on their front porch.

One of the very interesting people who appeared in the section was a librarian whose career spanned most of her adult life.  It wasn’t until she was in her later years that she decided to become a writer.  Surrounded by books all day, every day she knew where the “holes” were on the shelves.  Time after time children came up to her desk and asked about bugs.  Search though she did, there were no books about bugs for children. Finding a “hole” she began to fill it.

Doing her own research through adult scientific material, she translated the intricate entomology facts into “kid” stuff.  Successfully, she wrote, while the publisher’s artist illustrated, a series of charming children’s books about bugs.  Someone tagged her The Bug Lady.

Our editor thought her a delightful prospect for a Brightside article.  We writers all wanted the assignment, but it went to someone other than me who happened to be one of her friends.  Several of us got to meet this self-made bug expert who did look like a story-book librarian.  Wrapped in a warm cardigan sweater, a plain skirt, sensible shoes and very thick glasses she made all who met her feel like a child gaining knowledge as she shared her story.  She mentioned that her books didn’t make her very much money, but it was something she loved doing, and better than money her reward came as she watched the wide-eyed children smile and marvel at the informative, colorful books she helped create.

When we met, The Bug Lady was near retirement and ready for the change it would bring to her life.  She and her husband lived locally in a modest home, and soon settled into the comforts of just being themselves without the pressures of going to work each day.  Brightside ran the article and we writers found other people with interesting stories to tell.

Several years later I read about her again in the newspaper.  This time it was sad and shocking.  The Bug Lady had contracted Alzheimer’s.  Understanding the disease as I do now, it must have been a rapid decline for her because she was still very physically active and when she walked, some of her friends stated, she walked very fast.  Somehow, she had left her home and disappeared.   My friend and I went to visit with her grief-stricken husband to see if there was any way we could help.  Teary-eyed he could only relate what he knew.  She was gone.  There was a short blurb about her disappearance on TV news and a few continuing articles in the paper, but there was never a hint to her whereabouts – missing without a trace.  What could possibly be worse than having Alzheimer’s?  Having AD and disappearing never to be seen again.

During the past seven-plus years I have been thankful that Ken didn’t wander, but just because wandering wasn’t part of his habits didn’t mean that he might not scurry off if given the opportunity – not so much an opportunity – but a reason.  One night, a few years ago he had both.  After dinner with our friend Jayne, he and I headed for our car.  It was very dark, but Jayne followed us out to say goodnight.  I opened the car door and climbed into the driver’s seat, and then reached across to unlock the other door so Ken could get in.  Jayne and I talked for a few moments and when I turned to see if Ken was settled in, I was stunned to see he wasn’t there.  Leaping out of the car I looked up and down the driveway.  He was gone.  Apparently, with my quick disappearance into the car in the surrounding darkness, he must have forgotten where he was and, I suppose, began looking for me.  Glancing around I could see him walking quickly down the sidewalk as if he had some place urgent to go.  Already a good 200 feet away he was headed in the direction of a main thoroughfare with bright lights and activity.   I ran after him calling his name.  Still, he didn’t stop.  Instead he seemed to pick up speed hurrying toward the intersection.  Reaching him I grabbed his sleeve commanding loudly, “Ken, stop!”  “What?” he questioned in return, looking at me in surprise.  “Come back and get into the car so we can go home,” I prompted.  He asked where the car was as I turned him around so we could walk in the right direction.  Grumbling and complaining he came with me as I ushered him into the passenger seat making sure the seat belt was buckled.  “Goodnight, Jayne,” I called.  She waved and went into the house.

The experience had been a bit disconcerting, but because I could see him I didn’t panic, and he had a distance to go before he came to the intersection so there was no immediate danger.  The incident, though, taught me a good lesson: make sure he gets into the car, especially realizing how quickly he could have vanished into the dark night.

When Ben came as his caregiver, security at our house became even better than it had been before, and while Ken’s strength is now at a point where I doubt he would get very far before having to sit down and rest we don’t take chances with the outside doors which are double locked with us holding all the keys.

What could be more terrifying or devastating, more heart-wrenching or guilt-ridden to a family than having their loved one who is stricken with any of the Dementia-related illnesses lost in a confusing, often cruel and sometimes evil world?  At times I have wondered if Ben wasn’t being too careful about the doors always being double-locked, but then I tell myself that double locks are a good thing remembering the old saying, “Better safe than sorry.”

Photo courtesy of  http://www.flickr.com/photos/mysza/

Originally posted 2011-07-31 03:41:15.

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.

CAREGIVER’S BREAK DAY VS TECHNOLOGY

phone

Sometimes the friendliness of strangers is better than the greatest of technology.

“We’re meeting for lunch at Emil Villa’s on East 14th  in San Leandro,” said my friend Sandy, “Tuesday at 1:15,” referring to our lunch-bunch, the bulk being made up from women of many ages who choose to get together just for fun at a different restaurant each month.  I was ready for another “Caregiver’s Break Day,” and this time everything fit perfectly into my schedule.  “I’ve never been to that one,” I replied.  “Can you give me a cross street?”  “Not really,” she answered, “but I can give you the number: 1800.”  I told her how much I appreciated her call, and I would meet them there.

East 14th Street is the main thoroughfare stretching all the way into Oakland, which is about six to eight miles north of the south city limits.  By changing its name several times the same meandering roadway will take you many more miles south to San Jose.

The forenamed restaurant should be easy to find I thought to myself as I started my trip.   Driving along I noticed the store and business addresses had five digits, not the four Sandy had given me, which made me wonder if I was going in the right direction especially when the countdown went from 17000 to 16000.  A few more blocks: 15000, 14000 and then 13000.  Perhaps Sandy had meant 18000.  If that were so, I needed to turn around and go back, but that wouldn’t take me to San Leandro.  The second thought was that downtown San Leandro might have its own numbering system.  I could just keep on driving like Ken always did before AD (which could take hours as he would never stop and ask directions) but with time running out and the price of gasoline I didn’t want to waste my day or the pricey investment recently pumped into my gas tank.

Turning onto a side street I pulled to the curb and took out my cell phone.  “I’ll just call information,” I said to me, dialing 411, and then I heard Information’s recording followed by silence.  “Emil Villa’s restaurant in San Leandro,” I told the mechanical person.  The voice came back rather garbled, mumbling something I didn’t understand.  How do you tell a recording, “Excuse me?  I didn’t hear what you said, but I want the phone number of Emil Villa’s restaurant in San Leandro.”  I believe I repeated it three or four times.  Oh, how I longed to hear a real, human voice.

I grew up with those real, live human voices who seemed to live in the sturdy black telephones with a hand piece weighing at least five pounds.  When the instrument was installed in our San Francisco flat my two sisters and I would race to answer the ring being the first to say, “Hello.”  The call was seldom for any of us.  My mother needed a telephone for her customers to check in for either fitting appointments or to ask if their custom-made garment was finished.  The telephone was not a toy, but we were allowed to answer its ring or use it on occasion for appropriate reasons.  Before long, though, it became part of the family.  The novelty eventually wore off and we girls no longer were interested in racing to see who would answer it first.  Often, and before our teen years, it rang and rang forcing our busy mother to call out, “Would someone please pick up that telephone!”

As technology grew and changed so did the phone.  The first one in our home had a dial, and then the telephone man came and exchanged it for one without a dial.  To reach the right party the pleasant voice of a woman asked, “Number please?”  “HEmlock 6307,” you answered into the mouthpiece, or whatever other phone word and number you wanted to reach.  A few rings and you were connected.  That part hasn’t changed much.

If you didn’t know the number you said to the operator, “Information please.” At no charge another voice looked up your party’s number and gave it to you.  If she couldn’t find the number she might say, “Is that the common spelling?  Let me try again.”  She was so accommodating.  “Yes,” she replied, “that was John Smyth on 47th Avenue.  Not the common spelling let me spell it back to you.”  And she did. You could even ask her for the address of your party.  If available, she gladly shared the information.  However, she was bound by the rules, and sometimes said, “I am sorry, but that’s an unlisted number and I’m not allowed to give it out,” and she didn’t no matter how we coaxed.

For efficiency, the phone company eventually settled on the dial phone with the same courteous women answering your 411 requests when you needed information.  Or, having a different kind of telephone problem by dialing “O” you could speak with another helpful operator whose expertise went well beyond the information operator, and if she couldn’t be of help she connected you with someone who could.

Increasing demands for service and expansion changed the HEmlock to HEmlock 3-6307, eventually the HEmlock part was removed becoming 433 and with more demand and more technology dials changed to push buttons, and area codes, three additional numbers preceded by a one, came into being.  But through all of this 411 was still a real person with a friendly voice, either female or male, who looked up a needed number.  We could even dial POPCORN and find the exact time, which I used at least twice a year as Daylight Savings Time came and went.

Technology (plus time and cost savings – for the phone companies – not us) continued and the world became more efficient (supposedly) with recordings, menus and no person at the other end of the line to help when all I wanted was the phone number of Emil Villa’s Hickory Pit in San Leandro.  I considered hanging up and starting over again, when suddenly the friendly voice of a man answered.

“Hello,” I gratefully said into my tiny, almost weightless phone that fit into my pocket, “I really need the number of Emil Villa’s restaurant in San Leandro,” I pleaded.  “This is Big-O Tires and I don’t have their number,” said my new friend.  I apologized, explaining how I had called information so I could call Emil Villa’s restaurant, find their cross street and meet my friends.  Then I took a chance and said, “You don’t happen to know where Emil Villa’s Hickory Pit is located in San Leandro, do you?”

“I eat there all the time,” he answered.  “You do mean the one downtown on East 14th.”

I was ecstatic. “What’s the cross street?” I asked.

“I think it’s Maud – right downtown.  You can’t miss it on the right-hand side of the street if you’re going north.”

“You are by far the best information operator I’ve spoken with in years.  Thank you so much,” I warbled.

“One more thing you need to know,” he added making sure I was traveling into San Leandro and not in the opposite direction. “If you get the big plate pf ribs, don’t order extra potatoes — way too much food.”

“Excellent bit of information,” I laughed – thanking him one more time.

I folded my tiny phone and put it back in my pocket, pulled out of the side street, turned right and headed north on East 14th.  After all that talk I was starved.  Caregiver’s break day came with a very big bonus and a delightful reminder of how life used to be when it was slower and friendlier – without so much technology.  There are times when I believe we are “over the top” with all of this electronic paraphernalia.  Yet, without that annoying technology and without my handy little cell phone I could still be driving up and down East 14th Street looking for Emil Villa’s Hickory Pit.  Is that a dichotomy or what?

Originally posted 2011-05-01 04:15:56.

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.

WHAT AM I? INVISIBLE?

care-giving granddaughter and grandfather with alzheimers

Helping Grandma care for Grandpa who suffered from severe Alzheimer’s was a challenge for Kristina, but one she learned to handle well.

November 28, 2015 — Whether while I’m caregiving or during other times in my life I’ve wondered if I was invisible. Waiting in line, perhaps in the bank and or while shopping during the holidays, when they open registers or windows with someone directing others to step forward in what should be my place, and I just keep waiting,  It’s then that I might ask another person patiently waiting behind me  if he/she can see me because I am certain I must be invisible. Then the stranger assures me that I’m not made of smoke and mirrors. If you are a caregiver, however, you may have that feeling much of the time. In a world filled with busy people who appear to have important things to do, caregivers are often overlooked to the point of feeling invisible.


 

RECOGNITION AND LEGION

In the November 2015 issue of AARP Magazine, a team of photographers and writers have made a presentation titled “A Day In The Life of The American Caregiver.” The article explains how when a catastrophic injury or shocking diagnosis occurs, the person who steps up to help is given a new title. Like it or not, that person becomes a caregiver.  While no one competes for the title and may not even consider themselves in that role they have become a caregiver. To most of us helping is just a part of life, making small contributions in a quiet and simple manner, this silent army is often overlooked.

Stats tell it all. In the United States about 40 million people provide unpaid care to an ill or disabled adult. Furthermore, these angels of mercy have been doing this service for five years or longer, more often than not they are doing it alone.

The AARP team visited caregivers of eight families across the nation, who provide care for a loved one. Stats tell even more: 16.6% of Americans provide unpaid care that would cost $470 billion annually. The amount of dollars not spent is staggering, but these caregiving duties continue day after day for these unpaid angels.  One caregiver from Wisconsin cares for both of her parents who have been divorced for more than 40 years. Under their daughter’s devoted care the two once-sparing partners get along just fine. She tells the world that it has been a period of forgiveness and healing That’s one of the joys derived when one is a caregiver.

In Palm Springs, California one woman cares for her partner following a stroke. “I live with a child some days,” she says. In Florida a woman and her husband rented a room to a former choreographer. The three became close friends, so close that the husband kidded that he wanted to adopt the younger man and write him off on their income tax. When the husband died, the “son” moved in with his “mom” friend. “He keeps me company,” she says, “and I’m here to take care of him and his COPD.”

THEN THERE IS LONG-TERM CAREGIVING

The mother of a young man who suffers from Down Syndrome  says, “It would take more energy to figure out how not to do this. He needs steady supervision to stay safe. He knows there are bad things out there, but he doesn’t know that they can happen to him.” She’s a feisty 80-year-old mother from Wichita, Kansas who recently returned from a vacation to her native India with her son. She says, “I can’t get tired of caregiving. That is not an option.”

Long-term caregiving isn’t always a parent-child situation. Many times a dementia-related illness can go on for years. One of my friends took care of her A.D. husband for more than 10 years. My husband, Ken’s illness was full-blown Alzheimer’s and it was more than 10 years from diagnosis. If I counted back into the 1990s when I first saw signs of his family disease, the total would be closer to 20 years.

A MOTTO FOR CAREGIVERS

I suppose one could be, “Hang in There,” which usually goes without saying. The important thing, though, to keep in mind is: “They can’t help what they do, so it’s our job to help them.”

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