Alzheimer's

Does Gladys Have Instant Alzheimer’s

Several years ago my good friend Gladys Blogerbang and her husband Bob retired, moving to the Denver area.  I have missed them immensely.  (All names and places have been changed to protect the innocent – which in this case is me – because I didn’t do anything wrong.)  Through the years Gladys and I have corresponded, telephoned, visited back and forth and emailed one another.  We have kept in touch.

The Blogerbang family and our family overlapped:  they had older children, we had younger children and there were a few in the middle the same age.  Those in the middle were friends.  Together, Gladys, Bob, Ken and I watched them all grow; distancing themselves from us as teens, stumbling through the 60s-70s, screeching into young adulthood, and hopefully finding that which they were seeking as mature adults.  Meanwhile, as parents, we consoled one another when they crashed, and cheered when things went well.  Gladys and I should have been sisters, but close friends is almost as good.

Neither Gladys nor I have ever totally mastered our computers, but we get by with tips and help from friends and family. Call us computer “dummies” if you like, and that’s okay because that’s how Gladys got us into trouble – well — one of us got us into trouble.

Gladys lost Bob a few months ago, and because of Ken’s Alzheimer’s I didn’t feel I could leave him to fly back for the funeral.  When she called to let me know of Bob’s passing we spent a few moments on the phone.  It’s almost impossible to let someone know how your heart aches for them over the phone, and how much I’ll miss Bob.   I thought about sending emails, but somehow that was so impersonal.  Rather I chose to send cards and notes to keep in touch the old-fashioned way:  U. S. Mail.

Time passed and Gladys called me from Arizona.  She was staying with her daughter for a while.  It was wonderful to hear her voice and she sounded as if she was picking up the pieces of her life.

“I have a new computer,” she announced, “with a new carrier and a new email address,” which she gave to me over the phone.  She also sent me a card with some slight variations in the email address.  I chose the one I thought to be correct, which included her full name.  The following week I began to send her notes and a few forwards just to catch up.

Days later I checked my email and there was an email from Gladys Blogerbang.  “Good,” I said aloud, “she’s home and back on line.”  “Do I know you?” the message read.  “I’ve been getting your emails and I’m not sure who you are.”  Terror struck in my heart.  My dear friend, Gladys Blogerbang didn’t know me?  What happened?  Alzheimer’s?  Instant Alzheimer’s?

I know Alzheimer’s hits different people in different ways, but the only case I can recall of instant Alzheimer’s was Miss Daisy in the touching play/movie “Driving Miss Daisy.”  A long-time retired school teacher, Daisy woke one morning to find her class papers missing.  Searching for the non-existent work, she ransacked shelves and drawers finally becoming angry and frantic. End of scene; and then in the next scene she was in a care facility.  Was this happening to my friend Gladys?

Rather than panic, I zapped off a reply.  “Are you the Gladys Blogerbang who once lived in the Bay Area of California?”  “Were you married to Bob?”  “Do you live in Denver?”  The answer arrived that evening.  “I live in Germany.  I am married to Jake, and, yes, I am Gladys Blogerbang.  How did you get my email address?”

My first thought was joyous relief that my Gladys was just fine.  In addition, wasn’t this a fun, serendipity coincidence finding two Gladys Blogerbangs, each on opposite sides of the world.  I mentioned all of this to Germany Gladys explaining how I accidentally ended up with her email address, no doubt making some minor error, and adding a bit about myself and Denver Gladys.  Maybe too chatty; too much information.  I also wrote that I would check with Denver and see where the mistake might be.  If it couldn’t be found I suggested it was probably the fault of the carrier.  I signed off with, “Please keep me posted and nice to meet you.”

Meanwhile I tried one of the other email addresses for Denver Gladys.  Nothing came back, so I sent a few more notes.  Two days later an email arrived, but from Germany Gladys:  “I have blocked your emails, but they are still coming through.  Please call your Denver friend and get this straightened out.  I do not want to hear from you.  Do not ever email me again” Wow!  Rejection – big time.

Admittedly, I was disobedient and replied one more time to Germany Gladys telling her that it wasn’t my problem, and that I was really glad she wasn’t my friend Denver Gladys, because she, Germany Gladys, was no fun at all besides being a considerable grouch.  Not kind of me, I know, but I actually felt, and feel, a little intimidated by her terse email, almost expecting Grumpy Gladys to appear on my screen and yell at me.  Me – the innocent one.

Then the imagination took over:  Is she an agent?  A spy?  A drug dealer?  Does she think I’m dangerous, planning to steal her identity?  A hacker?  (Now that’s a good one — me – the computer dummy.) Perhaps, though, in our crazy, mixed-up world, she has a right to her paranoia.  Sad but true, Denver Gladys and I could be a threat, but we aren’t —  not to anyone.  Furthermore, I am extending to Germany Gladys my utmost apologies just as I do when I get the wrong number on the telephone.

I have written a U. S. Mail letter to Denver Gladys detailing my internet adventure with Germany Gladys, and requesting she look into the mix-up sending me a correction to her email address.  We’ll just have to wait and see how this plays out, and I do hope it’s over.  The one thing I know for sure is I am really glad my dear friend Gladys doesn’t have instant Alzheimer’s.

Originally posted 2010-09-26 04:15:04.

THE CHARMING VOICE (WITH ALZHEIMER’S) INSIDE THE PHONE

Ken was right there with the “second wave” of purchasers when cell phones appeared on the market.  It was the job of the first wave of purchasers to discover the faults and disadvantages of owning a personal phone, for which he was grateful.  “They should have all the kinks worked out of these by now,” he explained, showing me his new purchase.  “It’s for emergencies, and I’m not giving the phone number to anyone.  I don’t want it tied up with non-essential calls, and I’ll keep it with me when we go out.”  “Good idea,” I replied, watching his efforts fail as he tried to find a pocket which would hold his new toy.  “That’s okay,” he finally conceded, realizing the phone size was still a bit cumbersome. “I’ll just carry it,” and he did, the same way a first grader carries his new lunch box – proudly – “Look at me everyone; I have a new lunch box (cell phone).”

As the novelty wore off, the phone spent most of the time on the dresser, charged, ready but silent. Nevertheless, when we went out he carried it to the car where it rested on the console between us.  Every so often I would remember a call I hadn’t made and placed it while riding as a passenger.  “Handy little thing,” I had to admit.  “Do you ever use it?”

  “No one ever calls me,” he lamented.

 “That’s because you won’t give anyone the number,” I reminded him.

  “But it’s for emergencies when we’re away from the house.”

 “You could give out the number and use it when you’re working outside,  and we could still have it in the car for emergencies, or in the house,” I continued.

  “We don’t need any more house phones.”

He was right.  We had a phone in every room.  Years ago, when the phone companies announced they would no longer provide customers with equipment we said, “Okay,” and bought our own phone.   Furthermore, if the customer wanted an extension they could do their own wiring.  We said “Good,” and we did, and phone became phones. 

Telephone stores sprang up overnight. Smiley-Face phones, Pak-Man phones, Mickey Mouse phones – you name it, the telephone stores had it.  We even found a duck phone.  Frivolous purchase, but it did have a special appeal.  The ringer didn’t quack like a duck, but when it did ring the eyes flashed bright red, and it fit well with a grouping of carved ducks Ken had collected.

The part I liked best about telephones, however, was hearing Ken on the other end.  From his first call after our first date I had to admit he had the best telephone voice and the best telephone manners of anyone I had known.  Even years into our marriage I loved to talk with him on the phone.  If he called from work asking, “What’s for dinner,” my heart fluttered a bit at the sound of his voice.  It was almost as good as asking me for a date, and when he was away on business Ken never missed a night that he didn’t call to ask about my day, to tell me he loved and missed me, and to say, “Goodnight.”

Even as his Alzheimer’s progressed he managed to keep the same congenial tone in his voice.  If confused he would simply say to the caller, “Please talk with my wife.” 

The first time he failed to recognize me as me he asked that I leave his house.  He was so adamant in his demand that I left, racing to the car as he bellowed after me, “You’re stealing my car, and I’m calling the police.”  I drove to my friend’s home feeling absolutely devastated.   Jayne had asked me to take in her mail while she was away so I had a key.  Unlocking the door I went inside, choosing to leave the lights off.  Sitting in the dark I was glad to be alone while I cried and wondered what to do next.   Finally, after a half hour or so, I dialed our number and Ken answered.  “Where are you?” he asked with concern.  “You know how I worry when you’re gone at night.  Please come home.”  It was Ken on the phone not that other disagreeable person who had insisted I get out. This was my husband; the Ken I had been married to all of these years.  How good it was to hear his voice, and yet I wondered who would be there once I returned home.

Entering the house I found Ken and explained to him why I left.  He was stunned and promised he would never treat me that way again, even though he found it difficult to believe he could have behaved in such a manner.  “After all,” he assured me, “I love you.  I would never be mean to you – you’re my wife.  Perhaps,” he concluded, “it was all a misunderstanding.”  If only Alzheimer’s could be dismissed so simply.

There were more times when I could reach beyond the disease through the phone; but other times when I called from my cell saying to him, “Hi, Honey, it’s me, your wife,” he didn’t know me.  “I’m sorry,” he would reply, “I’m not married.”  Then he would chat a few minutes as if we were old friends.  The telephone connection between us didn’t always work, didn’t always sweep away the cobwebs allowing Ken to return, but the voice I heard still resonated with charm and good telephone manners.

Through the years, as his Alzheimer’s advanced, I’ve put away most of the house phones.   A few easy plug-ins Ken has pulled from the wall, the phones carried off and hidden as part of his valuables.  With the family grown and gone we no longer need telephones in all of the rooms.  Besides most everyone has their own cell in a pocket.  The duck phone with the flashing eyes has long since gone the way of other non-functioning electronics, including Ken’s first seldom-used cell.

The other day the phone rang.  I was sitting near Ken and before I could answer he reached over to his collection of carved ducks picked up the nearest one, held the bottom side to his ear and said, “Hello.”  It was the sound of my husband’s voice, the Ken I have known so well.  I wondered if a conversation had been possible through that chunk of carved wood what he might have said.  Would there have been the same charm, the same resonating voice using the best telephone manners of anyone I had ever known?  I can only wish.

Originally posted 2010-09-20 07:52:07.

CHOOSING HAPPINESS OVER DESPAIR AND ALZHEIMER’S

For Charlie Brown’s group happiness is a warm puppy.  For many kids it’s Santa Claus in the mall, Christmas morning and a new bike.  For lovers it’s their next meeting; a bride and groom their wedding day; students – graduation; for the unemployed it’s finding a job, and to a billionaire watching his stocks double is cause to gleefully celebrate.  For a young couple happiness comes with a new baby, and baby’s first smile brings immeasurable joy to its mother.   Happiness can be as constant as the surf splashing against the sand, elusive as shadows on a moonless night, and as fragile as a dandelion puff.  Happiness is many things to many people, but for me happiness is a choice.

I used to be a pouter.  Not recently, but when I was a young teen I somehow came to the belief that if I looked sad there would be a vast number of boys and girls who would want to be my friend if only to cheer me.  Illogical conclusion: sad had more appeal than happy. 

Our group of girls often went to local teen dances on Friday and Saturday nights.  The adorable bouncy girls with smiling faces were soon asked to dance while I sat against the wall, arms folded across my chest looking glum, hoping a cute guy, or not so cute, would take pity and ask me to dance.  I was the absolute archetype of a wall flower, and I didn’t know why, nor did any of my friends tell me to put a smile on my face and look happy.  Maybe my girl friends didn’t see me as a sad-looking dance dunce, but I was and I didn’t like it

Eventually I figured it all out.  It was more of a growing process, a maturing process when realization cleared the mystery concerning adorable girls.  It wasn’t about adorable, but more about bouncy and smiling faces.  My friends looked happy and I didn’t.  No one, even the kindest of cute guys, or not so cute, wanted to be stuck for any amount of time with Saddie Sad Sack.  So it was that I began my long journey in choosing to be happy.  Happiness didn’t come from without, it came from within.

Happy is an easy choice when the fates smile, when Mr. Right comes along, when babies arrive in addition to promotions and salary increases, when a new house is acquired and the lawn gets cut.   Just as in the story books:  “And they lived happily ever after.”

Time for a reality check:  Snow White’s babies had colic and threw up all over her favorite dress (actually her only dress), Cinderella’s prince was a lazy oaf who expected her to run the entire kingdom by herself, and Beauty’s beast, after all was said and done, turned out to be a grumbling turkey, but still decked out in the clothing and skin of a handsome fairy-tale prince. 

In spite of it all Snow, Cinder and Beau decided to work through life’s problems with their men, Charming, Charming and Charming, seeking help if needed setting happiness, once again, as their goal.   The babies grew into delightful children; the lazy oaf, threatened by Cinder’s Fairy Godmother who arrived with a pumpkin and a bunch of rats, fully accepted his responsibilities.  Under the prince’s guidance the kingdom flourished even without the touch of Godmother’s magic wand.  The doctor assigned to our snarling, growling beast removed several irritating rose thorns from Charming’s bottomside, which had been hidden under his very tight tights, returning him immediately to the prince of Beauty’s dreams.   

Life does ebb and flow.  While we would all like to remain in the flow, it just doesn’t work that way.  Adversity is a part of everyone’s life no matter what their rank or station.

If we are smart, during the good times when choosing to be happy is easy, we need to recognize our bounty of blessings and place them in a memory bank for future reference.  It’s during the ebb, the tough times, getting caught in the under current of misery when it’s difficult to say, “I’m happy.”  Yes, life can be miserable, and at times we all walk through the Valley of Doom and Gloom.  Interesting place to visit, but we wouldn’t want to live there.  Remaining in misery unless there is a clinical problem is also a choice.

It is not my intention to be a Pollyanna, constantly in denial, never acknowledging that things may go wrong, did go wrong, are wrong, or that life can become an overwhelming challenge, or that life is, at times, the absolute pits.  However, it is my intention to advise all the Snow Whites,  Cinderells,  Beautys, and their Princes Charming to recognize that life does have a mean left hook and when you get whacked it’s best to meet it head on.  Dodging, denying, and hiding under the covers won’t make adversity go away.

When Ken was diagnosed with Alzheimer’s it was a tragic blow even though we were not surprised.  Knowing it was deeply entrenched in the family we had  thought we could somehow sidestep it if he ate right, exercised, and continued to live a clean, wholesome life.  We were wrong.  “Your husband has Alzheimer’s.”  That’s what the doctor said and that’s how he said it.

Did we go home happy, smiling, clicking our heels about his disease?  Of course not!  No matter how well prepared we were, the news was devastating.  We were sad.  We cried and finally we accepted the diagnosis, and then we took a road trip, planning to squeeze everything we could into a limited amount of time before the disease robbed Ken of his ability to be Ken.

I have long understood about the link between acceptance and happy before I listened to Michael J. Fox as he was interviewed for his book, “Adventures Of An Incurable Optimist – Always Looking Up,” but it was good to hear him verbalize what he too had discovered.  It was accepting his disease that finally brought him to happiness after making peace with Parkinson’s and then moving forward with his life.  Fox also emphasized how awful it would be to live in despair, but on the plus side mentioned how this adversity had led to so many amazing people and places.  I couldn’t agree more for I too have rediscovered the goodness, compassion, love and concern which is found in good people everywhere.

So I choose to be happy.  I answer the phone with a cheerful voice and keep the “Woe is me” off limits. Do I have sad times?  Do I cry?  Certainly, but I don’t remain in the negative because I choose to be happy.  There is not room for both.  My new answer to, “How are things going?” is “Smoothly.”  My grandson, Brain, tells me a better word is “Swimmingly,” whatever that means.  But then again “Swimmingly” might be a good response if it means going against the current and making it?  Perhaps I will change “Smoothly” to “Swimmingly.” 

Looking way down from where I perch in the sunlight I see the dark pit of despair, but using my right to choose I choose to not go there.  Being happy while coping with any of the Devil’s diseases is something one must choose to be on a daily basis.  That’s why each and every morning I remind myself, “Today, I choose to be happy.”

Originally posted 2010-09-12 04:16:57.

THE GIFT OF GAB — ALL THROUGH THE NIGHT

Ken was always a talker and so at ease with people.  When we met that was the first thing I liked about him.  Had he been Irish I would have guessed he kissed the Blarney Stone, but he wasn’t and so he didn’t  Ken was just blessed with the gift of gab. During our marriage I sometimes wondered if he really liked people or if he liked them because they listened?  I doubt he ever analyzed himself, and even if he did what would that prove?  Possibly that he liked to talk and he also liked people; making the question and answer come to a full circle.

For years he volunteered his spare time serving as cub master, scout master, Little League coach, manager, League president, Sunday school teacher, and the list goes on.  During that time Ken was the middle-aged man working with youth and loving every minute.  How gratifying it was to see the boys, eagerness filling their young faces asking, “Mr. Romick, did you me catch that ball?”  And to see 8-and-9-year-old Cub Scouts saluting and grinning from ear to ear as they not only received an award, but words of praise as well. Whether they were eight or 18 Ken always had some special compliment for “his” boys.

It was years later when someone called out from across the street or the mall, “Hey, Mr. Romick, how ya doing?” that we realized how quickly time had passed. Looking into the unfamiliar face of an obvious acquaintance, these typical middle-aged men with receding hairlines and mid-sections telling they were well fed and cared for, were Ken’s “boys.”  We were always amazed to acknowledge that the “boys” had grown up while we were growing older.   Meeting them once again, and watching as they grabbed Ken’s hand shaking it vigorously, I became aware of the great affection these men still had for my husband.  “It’s me, Mr. Romick, Steve from Little League,” or it could be Mark from scouts or Aaron from his old Sunday School class; all of them genuinely happy to once again meet this “mentor” from the past.

I doubt Ken ever thought of himself as anyone’s mentor.  It wasn’t just about what he did, but more who he was and what he said.  How it touches my heart even now when one of his former “boys” tells me how much Ken had impacted their life, how he had made them feel they were “somebody,” and they could do anything, meet life’s challenges and reach their best potential because Mr. Romick had faith in them and said he knew they could do it.  To many, his words were a gift.

Alzheimer’s eventually robs its victims of just about everything they ever had or held dear.  Communication with Alzheimer’s patients varies, and even conversation with the same patient differs from day to day and from night to night.

In his recent book, “Adventures Of An Incurable Optimist – Always Looking Up,” Michael J. Fox tells about his sleeping experience.   Apparently, with his Parkinson’s the tremors stop when the brain is at rest.  When I heard him speak of this during an interview, I thought about the differences with Ken when he had been asleep for a time.  

I have no doubt that the disease saps energy.  For several years, Ken went to bed well before I did (except when he is extremely agitated or disturbed).  Once he was settled I knew it was my turn to get settled.  No matter what his mood swing might have been just before bedtime, or whether he knew me or not, when I climbed into bed he turned to me, barely opening his eyes and lovingly asked, “Is that you dear?”  I assured him it was me and he followed up with something like, “I love you.  Goodnight.”  For those moments he was Ken, and in retrospect, I can’t help but wonder if his resting brain, like Michael’s resting brain, might permit the tangles to relax enough for a bit of normalcy to return allowing stored and familiar memories to emerge.   As a lay person, all I can do is observe and speculate.  For me, his asking questions during those small snippets of time, and accepting the appropriate answers were good, but brief, conversations.

However, with Alzheimer’s change is constant.  After several months, I found I was no longer able to “settle in.”  Even though he still asked, “Is that you dear?” falling back into slumber within a few minutes, I learned very quickly there was more to come.  Peace and tranquility prevailed until one night our comfortable routine developed a glitch.  Ken began talking in his sleep just about the time I was dozing off.  While it didn’t occur every night, it happened often enough to sabotage a good night’s sleep.

The interesting thing about him talking in his sleep was the articulation and sentence construction, which were clear and concise; actually better than some of what we were able to experience during the day.  I sat up in bed and listened.  At first I chuckled to myself, remembering how much he loved to talk.  So here he was deep in sleep having great conversations.  Ken would make a statement, pose a question, or wait for an answer. The timing was so on target I almost expected to hear another voice.  No doubt he was dreaming, and the person in his dream furnished the other half of the dialogue.  Because of the clarity I couldn’t help but think once again about the possibility of his resting brain allowing him to even laugh during his unlabored middle-of-the-night chats.

 Nevertheless, these outbursts of talking did nothing for my period of sleep and rest.   “Shhhh,” I would whisper.”  His talking continued.  “Be quiet,” I requested, my voice becoming louder.  “Buddy, stop talking,” I commanded in the voice of his mother.  “You stop talking,” he countered.  I tried the voice of a teacher calling him Ken, Bud, Buddy, Kenneth and Hey You, all to no avail.  He always had an answer, and the answer told me he was not going to stop talking.

As the filibuster continued, I picked up my pillow, closed the bedroom door and retired to the couch in the family room, which I didn’t mind.  The couch, a warm blanket and I had been friends for a long time dating back to hot flashes and sudden awakenings of years gone by.  The silence was golden as I adjusted the pillow, snuggled into my blanket, and smiled as I thought of the noisy convention in the bedroom.

Perhaps, I mused, Ken may have managed to play a trick on the devil disease by skirting around the pitfalls of daytime consciousness, taking refuge either in the subconscious or somewhere in his resting, relaxed brain.  I don’t have any answers, but wherever he might be during those happy hours of nocturnal conversations he’s in his best element.

Originally posted 2010-09-05 06:09:56.

THE DEMENTIA UMBRELLA

 Several years ago, when the husband of my friend, Madalyn, was well into severe Alzheimer’s and Ken’s disease just beginning, the two of us went to several support group meetings.   The speaker one evening was a health-care professional; the title of her presentation was dementia.  How often both Madalyn and I had heard the word interspersed with Alzheimer’s, making us wonder if our husbands had Alzheimer’s or were they demented, having dementia.  Were the guidelines established enough that we could tell one disease from another?

“Dementia,” the speaker explained, “is the umbrella, and under that umbrella the medical community is placing what they believe to be related diseases, even though some people are diagnosed as having dementia.”  She went on to explain dementia as a group of symptoms caused by changes in brain function, or a decline in cognition.  Though defined, it still left us a bit baffled.  However, with so little known about the actual workings of a diseased brain and other neurological disorders, dementia as an umbrella seemed to make sense, especially when the speaker placed Alzheimer’s, Parkinson’s, Lou Gehrig’s disease (ALS) and MS (multiple sclerosis) under the umbrella.  No doubt she included other diseases lesser known to Madalyn and me totalling more than 75 in all, but the link placing them under one umbrella made good sense.  Whether the dementia symptoms may later change and develop into any of the encompassed diseases wasn’t a part of her topic, nor am I a medical person who could make such a determination, but it would seem reasonable to presume that the answer could be “yes.”

Over these past six years, as I have journeyed with Ken into the fog of Alzheimer’s it seems as if the cases under the umbrella are becoming almost epidemic.  I often hear people say, “It’s because everyone is living longer.”  That observation conjures up another burning question.  Is it inevitable that living longer will bring the majority of four score and younger people into the hopelessness of brain disease?

When Ken and I first married we were best friends with three other couples.  We were not a group, but they were best friends, nonetheless, with us, and we have kept in touch with all of them through the years.  Today, two of the women and two of the men are under the umbrella diagnosed with short-term memory loss, two with Alzheimer’s and one with dementia.  All of the disorders began somewhere in their mid to late 70s.  Yet, with our large circle of friends and acquaintances I have also observed early-onset of Alzheimer’s and Parkinson’s, and one death from ALS.

The mother of Barbara, my friend with short-term memory loss, was sent off to a state mental hospital in her mid 50s with what they diagnosed as brain deterioration.  Was it actually early-onset Alzheimer’s?  Earl, who has dementia, is the son of man who suffered most of his life with severe Parkinson’s.  Our  daughter, Debbie, had a favorite beau during their teen years who tumbled dramatically into full-blown Parkinson’s in his early 30s, as did celebrity Michael J. Fox.

With the power of his celebrity Fox brought world-attention, and hopefully more research, to his disease.  Of course, the 40th president of the United States, Ronald Reagan, brought the same extraordinary attention to Alzheimer’s during his 10-year battle with the disease, as did movie great Charlton Heston.  People no longer talk about a second childhood, senility, brain deterioration or sun-downer’s disease.  These umbrella diseases — with people of all ages becoming victims — are no longer swept under the carpet to be ignored as just some old folks’ ailment.

If there is a question here it would be:  Will there be a breakthrough in finding a cure, or at least management for these dreadful diseases?  If so, when? And, if a reliable treatment for AIDS was found in a relatively short period of time, what’s holding up research for The Dementia Umbrella?   According to a recent paper from Johns Hopkins the future looks alarming for 1 out of 2 people who will get Alzheimer’s if they live long enough.  That’s 50 percent.  Research and solutions are musts for the coming generations.

Presently, there are no real answers, but there are some quiet observations.  In watching my friends and reading about Fox, Reagan, Heston and others, their spouses are incredible as they walk with, sit by, and worry about those they love.  Collectively, they have all remained devoted which is not only inspirational, but encouraging to all of us caregivers traveling that same unfamiliar path.  The battle which goes on under The Dementia Umbrella can bring out the worst in people or it can bring out the best.  I don’t know everyone struggling under this covering, but those I see, read about and know are phenomenal human beings. Kudos to these caregivers everywhere.

Originally posted 2010-08-30 02:10:43.

A GRATEFUL RECEIVER

My mother was the most charitable person I have ever known.  From the time I was a little girl I remember watching unknown strangers standing at our front door while Mother made a sandwich as the stranger waited, or she fed another lunch in exchange for washing our 3rd-floor windows both inside and out.  There was never a thought these men were anything other than what they claimed – down, out and hungry — as she allowed them to work for food during those Great Depression years. 

It wasn’t as though we were much better off with my dad doing piece work for a small steel company.  When the order was filled he was sent home with his few dollars to buy food, pay the rent, and hopefully pay the utilities. 

Yet my mother managed to stretch the meager dollars to care for us and to help the less fortunate.  She and my dad prided themselves on never going on “Relief,” which was the welfare program of the 1930s.  They were fiercely independent, and, perhaps, to a fault proud, but that’s who they were.  They could take care of themselves and they did.

During World War II and the peaceful, economic healthy years which followed, I watched my mother continue her service to mankind through our church and other philanthropic organizations.  Nor did she choose to treat herself to some delicacy at the soda fountain or bake shop.  Rather than be frivolous she would take the money saved and donate the coins to a worthy cause.  Mama always felt fortunate and blessed to be self-sustaining.  This pattern continued for both my parents all of their lives.

One day, late in life, Mama was taking a bundle of newspapers to the garage for recycling.  Stepping down the one step of their entryway, she lost her balance and fell.  Bruised and bleeding she picked herself up from the cement, grateful no bones were broken.  Stalwart that she was, my mother insisted ice packs and a little rest were all she needed.

The next day, John, a representative from our church stopped by their home for his regular monthly visit. Finding her battered and bruised he asked what had happened.  Hearing Mama tell of her fall, he immediately said, “Irene, you need a hand rail at your front door.”

Sounds of a hammer and saw awakened my parents the very next morning.   Investigating they found John building the needed hand rail.  “I can do that,” protested my father.  “Now you won’t have to,” answered John, continuing his project.  “Then let me pay you for the materials,” Dad insisted.  “You can’t afford me,” replied John.   Humbly my parents accepted their gift.

Later my mother told me that she was surprised at her feelings of submission – of allowing someone to fill a need for them.  Being the giver all of her life she didn’t quite understand feeling so good about receiving. 

Then she thought of the triangle of doing God’s work.  “Without people in need, and we were in need,” she explained, “other people might never have the opportunity to serve, to experience being charitable. With God as the director and the third component of the triangle, I became part of this good man’s service.  Instead of feeling embarrassed about accepting John’s offering I felt humble and grateful, and very warm inside.  I guess part of my learning was to be a grateful receiver.”

My mother’s last years took her into the depths of Alzheimer’s.  Slowly she faded from the vibrant woman she was into a child I could only imagine I might have known.  A little temperamental and stubborn at times, caring for her was still relatively easy.  Her walk with the demon of diseases took a little more than four years before she passed on peacefully in her sleep. 

In another dimension in which my mother now lives she is probably musing about the last chapters in her book of life as she continued to grow in her appreciation of being a grateful receiver.  Knowing my mother, however,  she’s also back doing God’s work: charity, which is the pure love of Christ. 

Care giving for a loved one who suffers from Alzheimer’s is of that same charity, but is so often a thankless job.  The thought of being part of God’s triangle somehow escapes as the tedious days and endless months and years continue with no relief in sight.  And gratitude for this horrible disease?  I am at a loss to find any.   Yet, during the time of my accident recovery I have found endless gratitude, especially in finding such capable employees to care for my husband.  Both of Ken’s caregivers, Ben and David, have my utmost appreciation.  At the end of their day, I would imagine they feel downtrodden and exhausted, but they continue caring for Ken with love and kindness.  And while Ken is the recipient of their goodness, I am the one filled with gratitude, making me the grateful receiver.

Originally posted 2010-08-23 06:59:56.

MEAN MR. NICE GUY AND GAL

During her recent visit and before Marvalee sang her songs for Ken, she and I talked about the two people we loved, their Alzheimer’s and where it had taken them.  “Mama has become so mean,” Marvalee lamented, saddened by her statement.  “I guess deep down inside, she had a mean streak in her personality.”  I understood why she might reach that conclusion.  It’s hard to watch these people who have led such rich, full, and often charitable lives become less than who they were, eventually becoming virtual strangers.  Strangers we often don’t like.

“Oh Marvalee,” I said, “You mother didn’t have a mean bone in her whole 105 pounds.”  I remembered Eva strumming her ukulele and singing, dressed in a colorful muumuu, a flower decorating her dark hair which flowed free as a girl and as a mother of four was styled into a bun.  Even after the band, led by her talented husband Ed dissolved, she put on her muumuu, placed a flower in her hair, picked up her ukulele and spent the day at rest homes and care facilities entertaining the patients.  “Your mother was a kind, gentle woman,” I told my troubled guest.  “She isn’t a mean person, nor is Ken – at least not in their hearts.”

I recounted an afternoon when I had taken Ken with me to buy a new refrigerator shelf for one of our rentals.   It was a parts store where we had become frequent customers.  Tony, the associate looked up our needed replacement chatting as usual, almost bantering to Ken as he had in the past.  Silence prevailed, and being puzzled Tony glanced at me.  “Alzheimer’s,” I mouthed.  Puzzlement changed into dismay as he said, “I’m so sorry.  He’s the nicest guy in the world.”  I nodded in agreement as Tony wrapped the shelf and volunteered to carry it to our car. 

 “Let me tell you who the mean ones are,” I continued, recalling an accident of many years ago when the four-year-old son of our mutual friends ran between two parked cars and was struck down.  Slammed onto the street by an oncoming car, Robert was seriously hurt.  At the hospital, he lay unconscious, the doctors doing all they could possibly do to stabilize him while his parents hovered nearby wondering if he would even survive.

“Before I finish Robert’s story, let me remind you of my own son ,Kevin, who, at 18, also suffered because of a disastrous automobile accident.  Not like Robert’s accident, but badly injured when he was thrown from a little VW onto a highway in the middle of Idaho.  But like Robert, he too lay unconscious while the doctor in a very small town hospital worked to save his life.

“So what did these two accidents have in common?” I asked.  Marvalee listened while I continued.  “With Robert stabilized, but still unconscious he called out words like, ‘shut up,’ and ‘stupid.’  Words which his parents had told him were not nice words to use.  To a four-year-old, they were profane.

“Years later when my 18-year-old lay unconscious, he too called out profanity.  His naughty words, however, were much more advanced than those of Robert, and typical of a young adult male. As concerned as we were about the seriousness of his condition,” I explained, “Ken and I were a tad embarrassed as Kevin blurted out all the cuss words he knew turning the air in the hospital a bit blue.  ‘Don’t be embarrassed,’ the doctor counseled, ‘that’s base man calling out.  He’s hurt and he’s angry, and he’s venting.’  Robert had done the same thing with his words of ‘stupid,’ and ‘shut up.’  Even though he was just a boy, base boy was angry, hurt and venting.”

Summing it all together as best I could I assured Marvalee that the meanness was not some long-suppressed personality trait of Ken or Eva, but base man and base woman.  There are times when they are not only confused, but angry and no doubt frightened; both of them locked away in a mad world of nothingness.  Their meanness allows them to not only defend themselves, but being mean is also a way to vent.

 “Of course,” I concluded, “the application of base man and base woman as part of the Alzheimer’s disease is only my opinion.  But I take comfort in believing that both Ken and Eva are not fundamentally mean, but have always been two of the nicest people in the world.”

Originally posted 2010-08-11 07:30:26.

YOU ARE MY SUNSHINE

“Hi.  This is Marvalee.”  “How good it is to hear from you,” I replied, “and what a nice surprise.  How long will you be here?”  Her voice always sounded bright and chipper with a touch of breathiness; the breathy part was that of a singer, and Marvalee was not only a singer, but a dancer as well, and had been most of her life. “I’m here from Maui visiting my mom,” she explained. “It’s her birthday you know.”  Yes, I knew, and I remembered the gala birthday parties Ken and I attended celebrating with Eva as her friends and family gathered to sing and dance away the previous years.  Marvaleee continued, “If you are free, I would love to come over and sing a few songs for Ken.” “That would be just lovely,” I answered.

The daughter of Ed and Eva, who were also entertainers – musicians —  and I use the past tense because they no longer perform.  Ed has long since passed on, a victim of Alzheimer’s, and following his inability to continue as their leader, members of the colorful band dispersed and retired.   Soon after Ed’s death, Mother Eva was stricken with the same dreaded disease, and has been with a caregiver for nearly ten years. 

The family, all from Hawaii, came to the Mainland to entertain in the best way they knew: songs and dancing Hawaiian style.   During the heyday of luaus, fire dances, flowing muumuus and island shirts, the band was very successful.  Natural musicians, most played by ear providing what Ken and I called the most danceable music in town.

Attending a luau whenever we could get tickets, Ken soon became known as a good sport.  Catching the eye of one of the gorgeous dancers, he was soon invited on stage to learn the hula or some other exotic dance.  My husband could be such a clown,and loved being in the limelight.  Wrapped in a grass skirt and wearing a lei he swayed back and forth as if he knew what he was doing.  He didn’t.  When the music stopped, Ken and the chosen others, bowed to a cheering round of applause, and returned to their tables – laughing.  He was, as always, a fun, if not an embarrassing, date.  And Marvalee, whose beauty and dancing rivaled no one, could always find him no matter where we were sitting.

 Soon after she called, the bell rang.  My door opened wide welcoming Marvalee and her friend, Mary.  The two burst into song, “Oh you beautiful doll……..”  My spirits were lifted even with my considerable hair loss and scar across my forehead.   Entering, we exchanged hugs and Alohas.  Approaching Ken for the same hug, he stiffened and drew back as I warned them not to get too close, he needed time to be comfortable with newcomers.  He was no longer a good sport, nor was he a fun date, and he didn’t remember Marvalee.

 Living most of her time away from the Mainland, she had no way of knowing how much Ken had regressed.  The fun-loving man she had remembered was gone.  Rather he sat down in a chair and glared at her, his lips drawn in a tight, straight line.  “At times Mama looks at me with those same tight lips,” Marvalee commented, Mary agreeing.  We compared notes.  We hadn’t seen Eva since January, but at the time she smiled at us and while she didn’t know exactly who we were, she knew we had been important in her life.  “Probably not any more,” said Marvalee with sadness’.  “Most of the time Mama’s eyes are vacant and she doesn’t remember me – nor any of the family.”

Later Marvalee opened her music case and brought out a polished ukulele.  Strumming a few cords, she adjusted the strings and began.  Lilting strains of Island music filled the room and she began to sing.  They were newer songs than what her father and mother had played, and unfamiliar to Ken.  He sat in his chair, his lips still drawn in a tight, straight line.  Transitioning one song into another, the two women harmonized away the afternoon.  Ken hardly moved a muscle.

Her fingers moved across the strings once again and suddenly familiar music filled the air followed by the memorable lyrics from long ago, “You are my sunshine, my only sunshine.  You make me happy……..”  It was if the very sun had broken through the clouds.  Ken’s face came alive and he looked over at me, a broad smile erupting on his mouth.  Her words continued, somehow finding a path through the fog of tangled and forgotten memory.  Lovingly he looked at me, just me, and then he winked and pursed his lips as if to blow a quick kiss.   We were two souls locked in a moment of warmth by yesteryear’s melody and words.  A tear or two of happiness spilled down my cheeks, and I felt gratitude for Marvalee’s thoughtfulness and music, and for my brief flash of joy.

Marvalee played a bit longer; songs from the past and Ken continued to smile, but not in the same way and not at me.  Music had reached him, and he must have experienced a spark of reality and realized that something pleasant had taken place. For a time he was social and polite. “Thank you,” he called as the two women left.  I walked them to the door and gave each another hug and another “Aloah, thank you.”  “It was my pleasure,” Marvalee whispered.  “I got to see Ken smile — just at you.”

Originally posted 2010-08-01 00:42:16.

GRATITUDE PRAYERS

A few months ago while still healing from major injuries, I browsed through a stack of magazines, mostly untouched. However, as I shuffled through the pile, I noticed my church magazine, the pages already dog-eared, was opened to an article intended to be the next read. Interesting, I thought picking it up and noting the eye-catching title, “GRATITUDE,” then asking, “Was this a message for me?” Certainly, I felt gratitude. After all I was alive and recovering, and yet I was nudged at times with, “Poor me.  Angry me.  Why me?”  Perhaps I needed to ponder about gratitude a bit more deeply.

Written by a practicing psychologist who had researched the use of gratitude interventions in promoting well-being, he found that by interceding at appropriate times during counseling, thoughts of gratitude were helpful in treating depression and other problems. The doctor also advised that acknowledging thankfulness would be helpful to everyone’s mental health no matter how grave their situation. As a result of being grateful, we could all lead richer, fuller lives.

He also defined gratitude: a positive experience when we recognize gifts or blessings and feel thankful.  It sounded so overly simplistic, yet I continued reading.  Soon I began to reflect on this later portion of my life concentrating on the positive rather than the negative.

In my own defense I counceled me that I have always been prayerful.  As a child, my teachers of faith described prayer as like a sandwich:  a top and bottom piece of bread, or better known in addressing Diety as a beginning and an ending.  Inside of the prayer sandwich we were to express our thankfulness first.   “Before we ask our Heavenly Father for anything,” he explained, “we must always remember to thank Him for what He has given us.”  That could be the peanut butter portion of the sandwich.  The teacher followed giving thanks with permission to ask — the jam or jelly.   As an adult I have wondered if this pattern for prayer was a bit irreverent, but it is such a good pattern, one which I have followed all of my life, and long ago I put aside any thoughts of peanut butter and jelly when making supplication.  Perhaps now, I needed to be more outreaching in my gratitude. 

I recalled from the past that Oprah devoted the better part of a year’s programming to gratitude and journal writing. At the time, I too was caught up in the thought process of making myself more aware of blessings, but never kept a specific journal. Recently, in her magazine, Oprah admitted that through the years she had become so consumed with work there was no time left to write about the good happenings of each day. Reading from an old journal she recognized those great years from before, and commented on how happy she had been.

 The author of the “GRATITUDE” article encourages keeping a Gratitude Journal as well, with the purpose of recording several remembrances each week, but not just in list form. He suggested describing the experience, recording thoughts and emotions for the purpose of savoring and reliving what you had experienced.

In reviewing the past six years of struggling with Alzheimer’s, battling the war which is never won, I remember my friend, Madalyn, who had also battled the same war, until her husband, Darwin, died three years ago. “It wasn’t all bad,” she would tell me, and we often laughed about some of the funny things Alzheimer’s victims do and say. She reminisced about trips they had taken, visits with family which brought joy to her and momentary pleasantries to him. Her happier times with Darwin were similar to mine with Ken. These were all positive experiences: gifts and blessings recognized and thankfulness felt: gratitude.

When I came to the paragraph titled “Express Prayers of Gratitude,” I decided that would be my new beginning. As I continued my recovery in the quietness of my daughter’s home I reflected on being grateful for little things:   One at a time I could lift each foot, place it on the opposite knee and tie my own shoes, I could shower alone and I was beginning to feel confident once more. I wasn’t searching for big, dramatic epiphanies.   Deliberately, I looked for small things to appreciate because there are so many, and small blessings are often overlooked.  Every morning before I struggled out of bed I would look up at the ceiling — still wearing my neck brace and unable to kneel in formal address to Diety — close my eyes and offer a prayer of gratitude without pleading for any favors. (The favors could be requested in later prayers.) My morning prayers would be only of gratitude. I was amazed by the multitude of gifts taken for granted  for which I had to be grateful.

I have been home now for more than two months and my gratitude list grows each day. Ken’s Alzheimer’s is getting worse, but because of his caregiver, Ben, I have a sense of freedom. If I write for a few hours during the day, I know Ken is all right. Ben is with him, and I can nap undisturbed because Ben is here. I am grateful for Ben and for his relief, David. I am grateful for each new day, and my growing ability to actually help Ben with Ken. I am eternally grateful for family and friends. I won’t say I’m grateful for Ken’s illness, because I am not.  I detest this dehumanizing disease and how it has robbed us of so many good years. However, I am grateful for my coping mechanism, my compassion and awareness of others who suffer from Alzheimer’s and other devastating illnesses. I am grateful that through my writing I may help someone else; letting them know they are not alone in their struggle. I am grateful for Ken and the wonderful years we have spent together. Every so often, I see a spark in his eye and a smile. For a moment he is the man I married. Feeling gratitude and offering thanks each morning for all of this and more gives me strength.  Each day I can and will go forward into our daily battle, beginning with a prayer of gratitude.

Originally posted 2010-07-25 07:18:33.

AN ATTITUDE ADJUSTMENT

Remember watching the PBS special series which took place during the 1800s where the rich European noblemen and their wives had dozens of servants scattered throughout the castle: butlers, upstairs and downstairs maids, a seamstress or two, cooks and bakers plus scads of additional kitchen help.  Outside there were gardeners, stable boys, coachmen and countless others to keep the grounds manicured and trimmed, and the carriages polished.  It took a lot of people to keep those palaces functioning and presentable. To head up the staff was the prim and proper housekeeper who, with help from the butler, supervised the staff making sure their work was always done; accomplished quickly, quietly and out of sight from the manor’s lord and lady; except possibly, for his groom, her personal maids and the children’s nanny.  The “upper crust” did not fraternize with the help. 

Even in America the mansions of the early 19th century boasted servants quarters in their elegant three and four story mansions where it was normal for the help to “live in.”   Economics, career opportunities and life styles have changed the previous opulent society from normal to unusual.  However, it isn’t unusual for busy people in all walks of life to enlist cleaning services and gardeners on a weekly schedule, or occasionally to help catch up on the often dreary tasks of home maintenance, but for the most part, most people do everything themselves

Ken and I were always do-it-yourselfers, learning early on that by doing you got more bang from your buck, plus the satisfaction of a job well done.  Whether it was adding an extra room, painting the house – inside and out — bricking in a patio, building fences, landscaping the front yard, caring for the children or keeping the house clean we did it ourselves.  Consequently, I found coming home after my three months of recovery and recuperation a bit disconcerting to have “help” in my house on a permanent basis.   What’s more, it made me wonder who’s the boss?

I knew, without a doubt, that my family had made the very best of decisions in my absence, yet to find Ben (Ken’s caregiver and a person I didn’t know) busy in my kitchen preparing food for my husband  — and me — felt very odd.  Not only does Ben care for Ken, he cook, does light housekeeping and laundry (which he folds to perfection) and polishes the furniture when company is coming.   However, I still wasn’t sure if I was at ease with this new arrangement, feeling at first as if I didn’t quiet fit anywhere in my own home.  But doing a reality check I also knew that I would have to change; caring for Ken as I had done before the accident was a thing of the past — something I could no longer do —  especially considering all of his new needs.  Even though I was capable of taking care of myself, it was, perhaps, a good thing to still require rest and a nap when my energy level plunged, and appreciate Ben’s presence.  I was the one who still had months of therapy for my neck and knees, and I was the one who needed time to make an attitude adjustment.

Unlike the gentry of long ago who didn’t fraternize with the help, a few months have passed allowing me to become comfortable with Ben and I believe him with me.  In addition, there is David, Ben’s relief (granddaughter Kristina, who has been living with us, takes the night shift).  One of the surprise bonuses of having other adults in the house has been someone else to talk with.  I have also met and admire the wives of both men, finding the four new treasures in my life.  They are all career caregivers – a noble calling – kind and gentle, but firm when need be with the childlike adults whom they assist.

An auto accident wasn’t a path I would have chosen, nor would I have pressed the “select” button for a six-year continuing assignment with Alzheimer’s, but I have learned to accept those things I cannot change.  Life has taken me to this point where help is required and it is with gratitude and growing affection that I give thanks for Ben and David.  Their hard work and devotion continually touches my heart.  But even more, I am grateful that I am not stayed by some silly tradition from generations past.  I can, and do, enjoy and appreciate their friendship.

Originally posted 2010-07-17 21:39:56.

Sign-up For Our Newsletter

Sign-up for our free newsletter and receive expert tips from Ann Romick, a woman who has cared for 4 different family members with Alzheimer's over a span of 30 years. Be the first to get notification of her forthcoming book, Journey Into the Fog, based on her experiences.

We respect your email privacy

Email Marketing by AWeber