HAVE TURKEY, WILL TRAVEL

Here we are with Thanksgiving upon us and despite all of the challenges, disappointments and frustrations of living with Alzheimer’s, we know we are still blessed with so much for which to be grateful.  Daughter, Julie, and granddaughter, Marisol, will come and cook our dinner once I put the turkey in the oven.  A special helper, Little Miss Maya, somewhere between 3 and 4, will also be busy in the kitchen.  The rest of the family will arrive around 3:00.  It will be just like all of our years celebrating the good things in life, even though the patriarch will be a little out of touch.

So tonight, I’ll take a break from our journey into the fog and remember a recent Thanksgiving when we laughed together as a family and with our oldest daughter.  Bright, intelligent, overachiever, Debbie, has a special place in our hearts because of who she is, and because the drummer with whom she walks plays for her a melody sprinkled with sunshine and happiness as she stops to smell the flowers along her pathway of life, which at times proves to be a little impractical.

It was Thanksgiving 2005.  Ken was nearly two years into diagnosed Alzheimer’s and we were managing very well.  Family was, once again, coming for dinner.  Our daughter, Debbie, and her husband, Mark, were still living in the San Francisco Bay Area, but some of her grown children had spread their wings and moved elsewhere.  Seeing everyone for the holiday was a challenge she was determined to meet — no matter what. 

While driving Debbie to the airport in a second attempt to make her flight, she told me of the previous day’s adventure.  “”Sorry I’m laughing,” I said, “but this is too funny for me not to write about.  Have a good flight and we’ll see you in the newspaper on Thursday, and at home for dinner.”   The following appeared in our local paper, “The Daily Review,” on Thanksgiving day. 

HAVE TURKEY, WILL TRAVEL

By Ann Romick – 2005

“I wonder how much turkeys are selling for in Utah,” pondered my daughter, Deborah, while planning two days of Thanksgiving.  No, it wasn’t going to be turkey and leftovers the next day.  It was going to be two full dinners – two turkeys with all the trimmings.   Two days of being with family, giving thanks and loving every minute even if it meant flying 1,600 miles round trip.

That’s the dilemma in which many middle-aged parents find themselves when children grow up and leave home, often settling in places far away from where they spent their childhood years.  It’s even more complex when there is a second marriage with her kids, his kids and their kids.

“So,” Debbie declared, “problem solved.  We’ll just have multiple celebrations of the same holiday, and this year, thanks to the grocer’s ‘Buy one, Get One Free’ offer, I have two turkeys.”  All had been well-thought out and scheduled in advance.  Fly out of Oakland on Friday night, have one of the kids meet the plane in Salt Lake, shop and get everything ready for a Wednesday Thanksgiving with the Utah children, their spouses and the grandchildren, then fly back to Oakland on Thanksgiving morning to spend that day at mom and dad’s with the rest of the family in California.

“If I take my extra turkey to Utah,” she concluded, “that will be one less thing I have to think about when I get there.”

One suitcase, one overnight bag, one laptop and one handbag waited at the front door for husband Mark to come home from work, then a short ride to the airport.  In the garage, Debbie lifted the frozen fowl from the freezer, wrapped it in a heavy quilt and stuffed the big bird into a large duffel bag before placing it in line by the front door.

On their way to the airport, everything seemed to be going as scheduled — even the Friday night traffic wasn’t as bad as it might have been, although they were running a little late.  Dropping Debbie off at the entrance, Mark drove away with a quick peck on the cheek as the officer in charge motioned him to move on.

Getting all five pieces of baggage into the terminal was more of a struggle than Debbie had anticipated, but the check-in line was comparatively short, and with the two cumbersome bags gone, the rest should be easy.

“I’m sorry.  You’re 7 pounds over limit,” said the clerk behind the counter.

“I didn’t know there was a limit,” Debbie replied.

“It’s 50 pounds.  What’s in the duffel bag?” he questioned, noting the bulk.

“A frozen turkey.”

A bit of an eye-roll look, then, “Can you get the weight down?” 

Frantically, Debbie looked for takers.  “Does anyone want a 25-pound frozen turkey for Thanksgiving?”

“No thanks.”

“I’ve already got mine.”

“I don’t even like turkey.”

“Give me the suitcase,” Debbie said.  Stepping to one side, she flew at the zippers and threw back the top.  Rummaging into the next week’s clothing supply, she removed tees, sweaters and all the sweat shirts in the bag.  Off came the jacket and on went item after item up and over her head, causing an immediate spurt of growth from size 12 to size 16 in a minute and a half flat.  She shoved the lightened suitcase back onto the scales along with the frozen turkey.

“Close enough,” said the clerk, tearing off the claim checks.

Only two more hurdles to go, thought the now-frazzled traveler, glancing at the clock on the wall.  There was still plenty of time with security just ahead, then up the escalator and over to the gate.

Ticket in hand, my daughter was ready to board.  “I’m sorry, Ma’am,” said the girl at the gate.  “Only two carry-on items are allowed.”

“But this is only a laptop,” Debbie defensively replied, holding up the item not much bigger than a magazine.  I need it for my work.”

“Sorry only two items.”

Unzipping the laptop, Debbie stuffed her purse into the insufficient space and pulled the two handles together.  “That’s fine,” said the girl in the crisp uniform, glancing down at the ticket.  “You are ready to board…..Oh! Just a minute, ma’am.  I’m sorry.  It seems we’ve given your seat away.”

“But the plane is still here.  Why did you give my seat away?” Debbie lamented.

“Please step over to the desk,” gestured the girl in blue.  “She will explain.”

“We paged you,” said the desk clerk, “several times.”

“I never heard it,” Debbie said, “and I’ve been here, in the terminal, for the last half hour.”

“And we called your cell phone.”

“Show me the number.”

“See here’s your number.”

“That’s not my number.”

The clerk at the desk was sympathetic, but firm.

“We are very, very sorry, but there is no room for you on this plane.  However, we will arrange for you to fly out tomorrow at 2 p.m. at no extra charge.”

“But wait,” pleaded Debbie.  “What about my turkey?”

“Turkey?”

“My luggage and my frozen turkey are already on this plane and the turkey bag has no ID — only my claim check.  What will happen to my turkey?”

“I’m so sorry,” replied the desk clerk, desperately trying not to laugh.  “Your luggage will be held, but the unmarked turkey bag will probably be destroyed as a suspicious, unclaimed item.”

Slowly my daughter, mother of seven, stepmother of three and grandmother of 10, still smothered by an abundance of layered clothing, lumbered through the airport dragging one carry-on bag and clutching a bulging laptop wondering what else would go wrong, but believing that tomorrow should be better.

She mumbled to herself, “Up and down the West Coast of the United States, the entire airline is laughing at me.”

It felt good to be outside.

“Hi, Mark.  This is me.  Can you come and pick me up at the airport?  No.  I didn’t miss the plane.  I just didn’t get on the plane.  They gave my seat away.  I’ll explain later.

Sitting down on a bench to wait, she sighed and vowed never again to travel with a turkey — frozen or otherwise — then dialed again.  “Aren’t cell phones wonderful?” she thought.

“Hello, Liz.  This is Mom.  Will you do me a favor?  I didn’t get my flight, but can you drive to the Salt Lake airport and pick up my luggage and the turkey?”

“Turkey?”

“Yes, the turkey.  It’s frozen — in a large duffel bag.  The claim number is…..”

HAPPY THANKSGIVING EVERYONE

And yes, after a one-day delay everything worked out just as Debbie had planned.

BENEFITS OF A RED SHIRT

Every time I pick up a current magazine, there is an article claiming some new health tip about Alzheimer’s.  There is just one little catch, the dramatic pull quote from the text of the article always carries one tiny disclaimer:  “may.”  The most recent was all about broccoli and how if you managed to eat enough of it with all of its vitamins and other good stuff, you may be able to avoid the onset of Alzheimer’s.

Personally, I have always liked broccoli and have served it raw, boiled, baked in a casserole and roasted.  During the first Bush administration, it was announced on the evening news the succulent vegetable would not be served at the White House because President Bush (senior) did not care for the green stuff.  At the time, Ken playfully said, “I’m on his side,” pushing away his portion of tiny trees with thick stumps still swimming in a dash of butter, which I had just served.  “No, no,” I replied, pushing everything back in place and adding a couple more spears to his plate.  Knowing he was kidding, I went along with his joke reminding him that we would be eating broccoli a few times a week until he was elected president, then he could select the menu.

Years ago, I wasn’t looking for a food culprit when I received a note from the school nurse advising us that our first grader, Kevin had tested poorly during a hearing exam.  I didn’t know what to think.  Nevertheless, we were advised to see a hearing specialist and immediately made an appointment.  The specialist was a no-nonsense kind of doctor, well-respected and the top in his field.  That was good.   However, his bed-side manner was the pits.  That was not good.  Doctor Grump told us Kevin’s problem was common but rather serious.  His eustachian tube was somehow blocked which formed a vacuum condition causing mucus to be sucked into the middle ear.  If allowed to solidify total deafness would occur.  The good news:  eventually, the boy would outgrow the condition, or as soon as he learned how to pinch his nose and pop his ears several times a day, that too would solve the problem, but left untreated Kevin would be deaf.

Treatment began immediately.  The ear drums were pierced and tiny tubes was inserted breaking the vacuum and releasing the built-up mucus.  The difficult part was keeping water from entering the ear and causing infection and other problems.  We returned bi-weekly for checkups.

As a conscientious mother I tried doing my part by not only supervising bathes to avoid water in the ear, I also thought of ways to cut down on mucus-producing foods such as milk, peanut butter and any foods I could research, cutting back on those which might be contributing to Kevin’s problem.  When I mentioned what I was doing to the doctor, he scoffed, looked at me with disdain and said, ”Perhaps his production of mucus, whether it be too much or too little, is due to the fact that today he is wearing a red shirt.”   Dismissed by his sarcasm, I felt humiliated and insulted, but I said nothing more.  I was young enough to still be awed by tremendously skilled doctors who were supposedly all-knowing, and in my ignorance believed them to be some kind of demigods.  I have long since learned better, and Kevin’s ears are fine.  Time does bring about change.

It would seem that since President Reagan became a victim to Alzheimer’s, AD has fallen into a more respected category, arriving as one of the “Diseases of the Week,” meaning the medical community is paying it much more attention, and that’s a good thing.  Meanwhile theories abound.  “NEW ALZHEIMER’S BREAKTHROUGH,” touts the announcer for the evening news, “Stay tuned.”  For families and caregivers who, for years,  have watched their loved ones disappear into nothingness, the stunning news offers hope.  However, the announcement is no more than a tease on a slow-news day.  With no significant developments in AD research, the awaited information is nothing new, and hope is once again dashed against the bitterness of disappointment.   No news is actually better than old and rehashed theories.  If you notice, these articles in today’s magazines are high-lighted by wonderful attention getters:  leading captions, great photos or interesting illustrations, but always contain escape words such as “may” or “might.”    It would appear that every form of media is filled with some sort of advice about ways that may help people avoid Alzheimer’s.  The list is endless and covers all sorts of foods and life styles which could be of benefit: avoiding belly fat, being in good physical condition, running, walking, working out, and generally living a near perfect existence.   Living with a man who now has severe Alzheimer’s beginning nearly six years ago, I find all of these shots in the dark extremely irritating, even cruel, because guess what?  Ken pretty much fell  into that category of living a good, clean, near-perfect life when it came to being devoted to physical activity, living healthy and eating right, including lots of broccoli; as did his mother and father, his sister and my mother, all of whom still fell victim to AD.

So what does all of this rehashed information bring to us?  Not much, other than a lot of people are writing a lot of speculative and redundant articles about Alzheimer’s disease.  So, theoreticallyI can, perhaps, offer some speculative advice of my own by taking  a tip from Dr.  Grump.  Perhaps people may avoid falling victim to Alzheimer’s by wearing a red shirt –  or a purple dress or a pin-stripped suit — or whatever.  It makes about as much sense as eating lots of broccoli.

FRIENDS AND FAMILY

My friend Dorothy cared for her father following the death of her mother at 94.  Dad was 96.  The couple married in their early 40s, had three girls, and managed to stay alive long enough to celebrate their 50th wedding anniversary, plus a few more before she left.   Had the old man been given a choice he would have continued living in the family home by himself because he felt capable.  He never owned a car, nor did he drive.  Instead he rode his bicycle to places he needed or wanted to go, often declining an offer of a ride.  His dear wife either walked or accepted that offer of a ride to get her to those places she needed,or wanted to go.

A self-taught man and an avid reader Dorothy’s dad would sit for hours, the newspaper held up to his nose as he laboriously studied each blurring word  through what we all called his thick “coke-bottle” glasses.  He was determined not to slip behind on what was happening in the world.   In addition to his fading eyesight, Dad’s hearing faltered even with the best of hearing aids.   Therefore, conversations were cranked up a few decibels allowing him to share some of his insight.   A delightful old man, with a clear mind, sagging shoulders, a hesitating gait and a good black suit for church come Sunday morning,  he could still preach along with the best.   Surrounded by a loving family, grandchildren and great-grandchildren he often lamented he was alone and lonely. 

“But, Daddy,” Dorothy would say, her head cocked to one side trying to convince him that life was good and worth living, “you still have us.”   ”I know, Sweetheart,” he would reply patting her outstretched hand.  ” but with Mama gone, and all of my friends gone, I don’t know why the Lord keeps me here.  I need to be with them.  I miss my friends.”  Dorothy’s dad lived to celebrate a full 100 years.  Ken and I went to the party.  A few months later he joined his wife and friends.

Back then, during our middle years, our lives sprinkled with grandchildren, family and friends intermingling; none of us, neither Dorothy or husband, John, nor Ken and not I fully understood why the old man couldn’t grasp his still  rich life.   If all friends, contemporary friends, were departed, certainly with sadness, life  had to be all right because there was still family.  Right?  Wrong!  Mankind thrives best when they have both. 

Friends and siblings are those with whom we grew up.  They laughed at our skinned knobby knees and we cried together at the movies, and, again, when we got dumped by that really cute guy.  Their concern was pure and meaningful.  Friends were with us at our wedding, wishing us well and cheering that the groom wasn’t that jerk who wouldn’t take no for an answer, and we returned the favors when they stood at the altar with their chosen mate.   As friends we all posed for pictures with our babies and our families grew up together.  Friends shared all of the world and national events of our parallel lives, making our period in time important beyond measure for us.  We wore the same fashions, the same funky hair styles, sang the same songs and danced to the same music.  The ”good old days” are still conversational when we get together, our sentences beginning with, “Remember…….”  Friends remember the way we remember.   Now, looking back we see our children have developed their own important friendships, and how their friends are loved by us almost as much as we love our children.  Like us, held together within our own generation, their commonality will keep them close in their own social capsule of time.

With family, and as we are now the seniors, family is mostly our children who are only a phone call away and here at a moment’s notice,  it’s also them we call first with good news or bad.  But  it’s still our generation of friends who know and  understand us, whether they be newly acquired friends or friends since our childhood.   Some of our friends have already passed on, and we miss them terribly.  Now I understand the longing of Dorothy’s dad.   It’s a special missing, a special kind of loneliness.  Yet, there are many friends who remain and for them I am grateful.  They seem to have an  uncanny sense in knowing when to call or drop by often bringing us small tokens of their love when their presence is more than enough.  We still share one another’s joys and sorrows, remembering the good times of our younger lives – and the bad — and they help carry our heavy burdens of illness, no matter what the disease.   Friends and family — family and friends — I am so grateful they are  all a part of my life.  What would we ever do without them?

ACCEPTANCE: ALZHEIMER’S IS TERMINAL

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

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

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

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

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

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

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

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

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

HOPE

I grew up hearing the phrase, “Where there’s life, there’s hope.”  I saw that emotion — hope — shining in the eyes of a desperate mother more than 30 years ago in an Idaho hospital, and I shall remember it always.  Our oldest son, Kevin, during his first week at college had been in a  horrible automobile accident and lay in a deep coma for three days while we waited for the unknown, seeing him minutes at a time in ICU, and then more waiting until we were permitted to see him again.  We met so many good, kind and concerned people during our stay near his bedside.  Some had family members in various stages of recovery so we all shared in the profound commonality of grief and worry.   However, uppermost in all of our thoughts, struggling to banish any negativity, was hope.

We watched our son lying there, seemingly so calm and relaxed, outwardly unscathed by his ordeal, all injuries being internal, including a severe concussion, leaving us to wonder if his brain had been permanently damaged.   He looked so normal sleeping peacefully, except for the occasional outbursts of profanity.  “It’s all right,” said the doctor.  “Base man is injured and angry, and he hurts.  That’s how he responds.  It’s normal.”

There was another couple whose son had been in ICU for some time, until his doctor had him moved to another ward.  Still hooked to his IVs, he needed additional nourishment so they inserted a feeding tube.  Ken and I visited with the parents as they watched over their 15-year-old who had been returning from a football game with a friend at night, his friend at the wheel.  It was dark and the RR crossing was unmarked.  Undoubtedly, they never knew what hit them, and now he lay there, still unconscious, but alive.

Unlike Kevin, the boy was rigid, his hands curled up into tight fists, his body responding not to any stimuli.  We spoke very little.  What could we say,  just giving them a hug for comfort.  My inward thoughts told me this boy would not recover, yet when I looked into his mother’s eyes, I saw the familiar agony and worry we all shared as we hovered over our injured children, but beyond that I could see there was also the most tenacious of all emotions: hope.  The boy was alive and where there’s  life, there’s  hope.

“Mr. and Mrs. Romick?”  asked a smiling nurse.  “Your son is awake.”  We wondered if he would recognize us — he did — but it would take a long time before he recovered.  We were able to fly him home two weeks later to begin his journey back.  I have always wondered about the boy from the train wreck.  We didn’t see the parents again following our visit with them.  Was he able to overcome those tremendous odds?  Were the prayers, faith and hope of his parents enough to bring him back?  I hope so.

And it’s hope that sometimes levels our roller coaster ride with Alzheimer’s — at least from time to time.  When Ken has longer periods of being Ken, and he calls me “Sweetheart,” I find myself hoping.  Treating him holistically, I must have  faith that what I give him in the way of supplements will do him some good, even though I have absolutely no medical training, and it’s because of hope that I continue.  After all, the medical community doesn’t have much to offer.

Today, it was a bit of joy and laughter from both of us that gave me my needed spark of hope.   We were out shopping and just before we returned home, I said that I should stop at one more store.  “Where?” Ken asked.  “The Dollar Tree,” I answered.   Having a bit of  a hearing problem, he hesitated, looked at me a little puzzled, yet smiling and said, “The Adult Tree?”  Then he laughed repeating himself, “Adultery — do they have a store for that?”  Then we both laughed.  Poking him in the ribs I said, “You made a funny.”

We had a wonderful afternoon, but at sundown, the moods returned as did the agitation and other symptoms of AD, but I was nourished with my spark of hope.  Reality check:  I know after nearly six years that his brain is ravaged, yet if he yoyos with good times to mellow the bad, then perhaps it will postpone that awful day when I must consider placing  him in a full-care facility.  Meanwhile, I too can keep in my thoughts that where there’s life, there’s hope.

PROBLEMS BIG AND SMALL

The ghosts, goblins, fairy princesses and super powers have come and gone from our house, leaving no tricks, their bags bulging with treats, meaning another Halloween has passed.  I enjoy the sporadic parade of kids in masquerade (I don’t even mind the older set as long as the candy holds out, their voices already hitting the low notes of “Trick or Treat,” who come later in the evening).  In the past so did Ken.  This year he made no recognition of the holiday when I placed pumpkins on the porch, an immense spider clinging to an equally over-sized web hanging from the roof, and a friendly ghost stuck in my juniper bush which was sprinkled with candy-corn lights.  The house looked festive and inviting and I raced to the door with my caldron of candy at the first ring.

I could see the groups of small fry in costumes were confusing to Ken, who managed to get to the door in front of me offering out a jumbled scolding to a mom and dad with little ones.  I pushed in next to him explaining “Alzheimer’s,” adding, “You didn’t get your candy,” as they all scurried down the walk.  The parents, looking a bit unsettled, shouted over their shoulder, “That’s okay.”   I moved my chair next to the door so it wouldn’t happen again.  I strive to be as “normal” as possible, but as Alzheimer’s gets worse, the problems get bigger and more difficult to manage.

Soon, Granddaughter, Jessica, 10, arrived looking extraordinarily beautiful, glittering petals covering the skirt of her fairy princess costume, a jeweled snood for her hair and wings with which to fly, everything stitched and put together by Sabina, her talented mom.  Jessica, while enjoying the trick and treat part, almost likes being the hostess more, taking over my duties handing out the candy while her parents talked with me and Ken, who soon relaxed, his son’s presence and friendly banter calming him.

As I survey the growing problems as caregiver to a person suffering with Alzheimer’s (not to overlook what caregivers all over the world are experiencing) I think of the little ones out on Halloween night with plastic pumpkins and decorated bags carried to collect their evening’s loot.   As young as they are, they have problems and for them, their problems, when they arrive, loom just as large as our problems are to us, which reminds me of my seven-year-old friend, Robert.

While visiting grandparents in Northern California, he was allowed to pick out his own pumpkin.  Selecting it from the vine, helping load it into the wheel barrel, and then into the car, his Aunt Chrissy declared that she would buy the 95 pound pumpkin for his birthday.  At home, the gift sat proudly on the front porch until some thoughtless and mean-spirited thieves took it while Robert was in school and his mother, Malena, away from the house.  Robert was inconsolable.  He sobbed until Malena thought his heart would break, nor did he understand the ways of the world, or why anyone would take his special gift.  The theft of his Halloween-birthday pumpkin was, to Robert, the biggest problem he had ever encountered, and a problem he was unable to solve.  Our story, however, has a happy ending when a family friend, who is also a police detective talked with Robert, assuring him the “force” would see that his pumpkin was found and returned.  Meanwhile, our detective located an equally large pumpkin and, back in full police uniform, delivered it to Robert’s porch. 

Problems and adversity are a necessary part of our growth in life and they have no age preference, whether they be problems dealing with dirty, rotten scoundrels, age and illness, business problems, problems of the heart, families in crisis, or problems of young marrieds making their budget stretch to cover the mortgage.   Like pain, no one can measure the severity of another’s problems, nor can anyone decide if the problem is big or small — only he to whom the problem belongs is allowed to make that distinction.  One thing, however, is for sure:   no matter what the behemoth which might lumber into our lives, the enormity of it is always lessened by love from those who care: sometimes a stranger, family members, friends or a good and kind police detective.

HE NEEDS TO BE IN A HOME

“Have you thought about looking into a care facility for Ken?” asked my neighbor.  “Of course,” I answered, closing the issue and moving on to another subject.  What I wanted to say was, “Having to place my husband in a full-care facility hangs over my head  like an enormous lead weight every single day of my life, and I wait constantly for it to drop.”  Because we are friends, I didn’t feel she had overstepped her bounds by asking me, after all we have known one another since our children were young.  But I did feel the intrusion when she called a family member and told them Ken belonged in a home.   This being my fourth trip (and the most difficult)  down Lost Memory Lane, there is one thing I know for certain: no matter how demented their state of mind, people with AD and other dementia-related illnesses are happiest in their own home, surrounded by loved ones, and when and if the time comes for placement, the decision will be made by family, doctors and the guiding hand of clergy.   My most fervent prayer is that the Lord will call him home before I have to make that placement.  Keeping Ken with me for as long as possible is my goal.

If ”as long as possible” sounds vague, it’s probably because it is.  I have certain established criteria which will help me and our family reach that awful decision:  if Ken becomes violent, if he can no longer care for his personal needs, or if he becomes a danger to himself or others.  Those remain uppermost in my mind, but I know other problems may arise of which I am presently unaware, and I will cross those bridges if and when I come to them.  I also know removing him from his home will be the most difficult thing I will ever do.  “But you would have so much more freedom,” people have said.  “To do what?” I ask.  Admittedly, caring for any loved one who is terminally ill is difficult, wrenching, exhausting and depressing, but would it be less painful to visit him or her in a care facility only to have them weep at your leaving and beg to go with you.  There are no easy answers and there is no easy decision, so it is best for those who mean so well not to become part of the problem.

I find the further down the AD staircase Ken travels, the more changes take place, changes in his ability to understand, his awareness, comprehension, personal care, his physical abilities and even his willingness to cooperate, which I know is normal for the disease.  All of these changes and more will be factors in determining when and if he has to placed in a home.   However, the fascinating part of this insane journey (if I can  use the word fascinating), at least with Ken, is this fact:  his trips yoyo up and down.  There are days when his decent seems endless; speaking with little sentence structure, groping for needed words, unable to take simple directions, more anger and frustration than usual, difficulty in making the simplest of decisions and general annoyance with me the majority of time.   After a few days of this sudden and bazaar behavior, I tell myself, “Tomorrow, I’ll call the family, and we’ll talk.”  But when tomorrow comes, he’s better.

The medical community has said that once memory is gone, there is no recovery, but I wonder about that.  As I have watched him regress over the past six years, the decline is very definitely dramatic.  There is no comparing the Ken of 2003 and the Ken now.  I’ve watched and listened to him drop through the years, lose memories and his age year after year: forgetting his career, me, his children, and then dwelling for a time in the Navy, dropping down again to a time when he insisted he needed his pajamas before he could get ready for bed.  During those latter times I call him “Buddy,” the nickname his parents gave him.  Furthermore, when he’s Buddy (who is about 12)  he wonders why he hasn’t seen his mother and father, and asks about his sister, Loretta.   Loretta, I tell him, has her own home, but telling him his parents are deceased is unacceptable to him, so I tell Buddy they are on vacation.  Being just a boy Buddy tells me he is not married, never has been married, has no children — only a sister and his mother and father.  Another personality in the mix and to whom I refer is Mr. Hyde, who also owns our house, but is older and married, but not to me.

Other times, from out of nowhere, Ken will look at me and wonder, “Are you my wife?”  I assure him that I am adding, “Your wife needs a hug.”  Eagerly he obliges, and in our embrace we fit into each other’s arms as if these wretched years have never been.  Feeling the comfort he remarks, “Oh, this feels so good,” and then he rubs my back as he always did before letting me go.  Ken invites me to sit with him on the couch so we can watch TV together, asking, “Are you okay?” and he reaches for my hand.  My husband remains for several minutes before that mysterious fog wipes away the memory and he becomes one of the other personalities, dismissing me as some annoying intruder.  I’m grateful for the interlude.

Physically, Ken is in very good condition, a little on the skinny side.   How long the two of us will ride this crazy roller coaster called Alzheimer’s is an unknown factor, but we will continue riding it together until — and if – there comes a time for our ride to stop.  Meanwhile, I am the one, with my chosen council to councel, who will determine when a change needs to be made.

I PRAY FOR YOU ENOUGH…………

Just after I finished my previous Blog, “Through The Storm,” I received a lovely email from my cousin, Penny, in Oregon.  I could see by the enormous block of addresses that she had, indeed, sent it to all of her friends and family.  It was one of those emails worth forwarding titled “I Pray For You Enough…..”  After reading it my thoughts were, “How nice.”  I had received a similar one a while back titled “I Wish You Enough……”  The contents were the same, the story line the same but a little different in that the prayer one involved a mother and her daughter, while the wish email was about a father and daughter.  I wondered if an original story had been written by the talented writer anonymous, and during the little email’s travels over the waves of the internet, the various recipients tweaked it just a bit to suit their own fancy, with change happening in small increments.  In any event I’ll briefly relate the story:

“At the airport I was waiting for my flight when I noticed two women standing nearby.  So close, in fact, that I couldn’t help but overhear their conversation.  As the daughter said goodbye before rushing to her flight she said, ‘I pray for you enough……’  The mother returned the phrase, ‘and I pray for you enough……’  Tearfully, the daughter scurried off to catch her plane as the forlorn mother watched.  I could tell she was near tears, but I didn’t want to intrude.  However, she caught my eye, knowing that I must have heard their conversation and asked, ‘Have you ever said goodbye for the last time?’  I answered that I had, many times.  Tears began to flow as she sat down next to me, her sad words revealing that she had a fatal health condition and her daughter’s next visit would be for her funeral.

“While her explanation allowed me to know she was dying, I wondered about the phrase used by both women.  Timidly, I asked, “What did you mean when you both said I pray for you enough?’  She went on to tell me of a family tradition which had been passed along for generations, praying that their loved ones would have enough to meet their needs and to bring  joy to their lives.  Then, as if memorized she said,

“I pray for you enough sun to keep your attitude bright no matter how gray the day may appear.

“I pray for you enough rain to appreciate the sun even more.

“I pray for you enough happiness to keep your spirit alive and everlasting.

“I pray for you enough pain so that even the smallest of joys in life may appear bigger.

“I pray for you enough gain to satisfy your wanting.

“I pray for you enough loss to appreciate all you possess.

“I pray for you enough hellos to get you through the final goodbyes.”

Seven simple prayers covering just about anything one would need, except when life changes so dramatically as it does with illness.  The mother was ill.  What would she need in the way of, “I pray for you enough……” for her condition?  And I thought of AD and Ken, and myself as a caregiver.  Not only us and our needs, but the needs of caregivers all over the world who have accepted this awesome responsibility of caring for the dying no matter what the cause.   (Please note I am not including prayer for healing because I’m only considering terminal illness where there is no hope.)  So for the patient, these six are a beginning:

I pray for you enough peace of mind to get you through the day without (or at least with only a minimum of) anger, agitation and mood swings.

I pray for you enough memory so you can take care of your personal needs: a shave and a shower without help.

I pray for you enough friends and family so you can talk, even if it’s only ramblings.

I pray for you enough strength so you can walk a short distance with your care giver, and get from one room to another without help.

I pray for you enough respect and love from others, that they remember who you were and not what you have become.

I pray for you enough medication to keep you free from pain, to calm your nerves and allow you to sleep and relax.

As a caregiver, the most often-asked question I hear is, “What can I do for you?”  I have “Ken sitters” a phone call away.  I have friends who drop by with a meal for two, cake, a plate of cookies, a book to read, Monday night dinner at Jayne’s house, phone calls so I can sit and chat, friends who invite us to social events even if Ken acts strange, notes in the mail telling me they are thinking of us.   How blessed I am, but even with such awesome support we caregivers need all the help we can get — including prayers.  I have listed a few for starters:

 I pray for you enough sleep and rest.

I pray for you enough knowledge, skills, support and help in handling stress.

I pray for you enough friends with soft shoulders to cry on.

I pray for you enough patience to get through the day.

I pray for you enough memories of the good times in life and enough erasers to dim some of the bad.

I pray for you enough love and devotion from all those who know you, and enough knowledge that you know you are cherished.

I pray for you enough faith to remind you (thanks Lynne) that there is life after Alzheimer’s (and all of those other disease horrors).

THROUGH THE STORM

 When Ken and I first married, television was brand new with a lot of wrestling and a small handful of almost good variety shows.   That was about it for TV, with radio still being the major source of home entertainment for most people.  Gravitating to the living room after dinner, I recall our family members easing into his or her own comfortable spot, settling in and relaxing while tuning in our favorite programs.  With great fondness I remember my father’s chair next to the radio so he could push the buttons of the big Philco console.  My mother always had some sort of hand work to do (such as darning my father’s socks) while we all listened to an array of wonderful shows:  Lux Radio Theater, I love A Mystery, Bob Hope, Jack Benny or Fibber McGee and Molly.   Who needed to see a screen to follow the plot when our brains created the scenery, did the makeup, the costumes and even the set, placing the entire production on the never-ending stage of our individual minds. 

Moving into our first apartment where Ken spent most of the evenings studying formulas and math for his engineering classes, there were a few radio programs we both enjoyed, thereby allowing him to pull away from his books for a half hour or so.   One of our favorites was about problem solving.  Not the cute family drama-sit coms of today, but stories of life struggles; accounts of ordinary people.  The component used for their problem solving was their own personal discovery of the power of prayer.  Try though I may, the program’s name is long forgotten, but not their sign-off line which I have remembered all of these years:  “More things are wrought by prayer than this world dreams.”  I believe that with all my heart.

At times, I have noticed while watching Oprah a guest will say something like, “And then I prayed.”  Oprah will counter the statement with, “Why was your prayer answered and the prayers of others who are equally deserving not answered?”  Good question.  Garth Brooks had a song out several years back titled, “Sometimes I Thank God For Unanswered Prayers.”  So what does that mean?  For me it means that prayers are answered, but often we don’t like the answer we get, at least not at the time, as illustrated in Garth’s song.   It’s later that we understand the Father’s wisdom.  And sometimes our Father just says, “No,” and how often He answers in the negative because the die is already cast.  Our ways are not His ways, nor is our understanding His understanding.

I am a person of faith, but if I tallied up my life time of prayers I would be remiss in constant prayer.  Perhaps I would be kinder to myself if I said I was remiss in constant formal prayer.   I doubt I have ever gone through the day without some small needy prayer, quick thank you prayers and  hurried blessings on the food.  When life is bright and sunny it becomes so easy to take everything for granted, forgetting from where all blessings come; and then like others, I find myself turning back to The Father when that same life gets dark and dreary. 

It was a turbulent time when my adolescents passed through their teen years and how often Ken and I angst over their choices which we knew would bring them unmeasured sorrow.   One day, while driving to work, feeling particularly melancholy, an incoming storm poured down rain from the sky as if the Heavens were weeping with me.   I adjusted the wipers so I could better see the road and in so doing, the storm seemed to ease.  ”Not really,” I told myself, “the storm is not gone, the windshield wipers are helping you see the way more clearly.”   The thought, “Just like prayer,” popped into my mind.  “Prayer and windshield wipers?”  I pondered aloud.  It seemed almost insulting to Diety to compare communication with Him to a part from an automobile, and yet the two shared that commonality.  Our family was going through one of life’s storms and prayer, like the auto part, while not removing the problem, guided us step by painful step through that particular storm until it had cleared.

When Ken was diagnosed with Alzheimer’s I spent a lot of alone time weeping and praying.  Never did I ask my Heavenly Father to perform some miracle and take away Ken’s AD.  Obviously, this was another of life’s storms we had to bear.   Instead I prayed for courage and strength to see us through this awful thing.   There were, and are, hectic days which pass in a blur with nothing accomplished except caring for him: getting him shaved, showered, dressed and fed.  Days when I walk on egg shells to avoid his outbursts, or giving in to my own anger and frustration, spewing out hurtful remarks and despicable words, which prior to AD would have never crossed my lips; afterward glancing toward Heaven and whispering, “I’m sorry, Father, forgive me.” 

And then there are days when the first line and title of a favorite hymn runs through my mind giving me councel, “Ere You Left Your Room This Morning, Did You Think To Pray?”  So I strive to rekindle the habit and, truly, it helps.  Does it remove the storm?  Of course not.  But on those days when I pray with real intent, having faith in Christ, I am calmer, more patient, more appreciative of those rare moments when he is Ken and he knows me and loves me.  And I pray for him, that he might have some peace in his tortured mind, and I am reminded of the last line of the hymn, “So when life gets dark and dreary, don’t forget to pray.”

OCTOBER 17, 1989 — EARTHQUAKE DAY

We had moved my mother and father from Sebastopol, California to the Bay Area so they could be near us as they both grew older and my mother was well into Alzheimer’s.  My father was fully aware and capable of a certain amount of care for them both, so we located them nearby to continue living by themselves, which is what they wanted.  I saw them every day, did their shopping and whatever else they needed, but it wasn’t necessary that I hover over them on a 24/7 basis, allowing Ken and me the time to pursue our own interests.

As with Football, sports never held much importance in my life, but that year, the unusual win of both baseball leagues brought the San Francisco Giants and the Oakland “As” together to duke it out for the BIG WIN.  Seeing a part of the World Series might be worth watching.  So when our son-in-law, Tim, said he could get tickets and asked if we wanted to go with him Ken was ecstatic and I said, “Why not?  It’s possibly a once-in-a-liftime event.” 

October 17 was a fabulous day for a ballgame — shirt-sleeve weather at San Francisco’s Candlestick Park, and that afternoon it seemed as if everyone was going to the game.  Traffic was heavy but steady and we left early enough to find an acceptable parking space.  Heading toward the complex we passed tail-gate parties by the score with revellers who were already enjoying themselves a little too much.  These people were fans in every sense of the word.

Near the top of the stadium we found our seats about 30 feet from what Ken called an “eyebrow.”  This was a concrete overhang all around the top of the facility and as it hung above us unsupported it did look like an eyebrow; a very large eyebrow.  Towering above the eyebrow a couple of light standards stood rather ominously to the right and left of us.  Looking down on the field we could see miniature people finishing preparations for the game.  Fortunately, we were prepared having brought two pair of field glasses.  I took out my camera with its telephoto lense, hung it around my neck and sat back in my seat.  Glancing at the time we had about 25 minutes to kill before the game started at 5:00 p.m.  We watched as a steady stream of enthusiasts continued to pour into the stadium wearing team hats and waving banners.

At the scheduled hour a cheerful resonating voice spoke into the loudspeaker welcoming all to this historic sporting event.  With hardly a few words out of his mouth the sound of what seemed to be a rumbling train drowned out the rest of what he said.  Bewildered, the fans looked around to see where the sound was coming from; recognition was almost instant.  The stadium began to tremble and the light standards shook and swayed so violently I was certain they would fall on us along  with the overhanging eyebrow.”

While my whole life did not pass before me I was amazed at how many thoughts raced through my mind in just 17 seconds.  The first was fear — terror at what was happening.  I was certain we would be crushed in the wreckage.  The second feeling was acceptance, and the third feeling was a wonderful, peaceful calm.  We were all going to die and it was all right.  The next thought was planning my last act of service to the world — at least to California.  With my camera in tact I would snap photos of death and destruction until I either ran out of film or a slab of concrete took me out.  And then it was over.  An audible sigh reverberated through the air as probably every person in attendance let out their breath.  Later, as TV and radio commentators spoke of the fans they called it a “cheer.”  Wrong!  It was the sound of grateful relief.

As everyone was sucking in their next breath the same announcer who had welcomed us just seconds before came back with the calmest, most controlled voice imaginable and said, “In case of an emergency, please exit in an orderly manner through……”  And then there was silence.

Many bolted from their seats and left, but the stalwarts had come to see a game having paid $100.00 and upwards for their tickets.  The earthquake was over, nothing seemed damaged.   Let’s play ball.

From our high-in-the sky vantage point we could see some billowing puffs of smoke throughout the city.  People in front of us had a portable radio and we asked,  “What do you hear?”  “Nothing,” was the reply.  Must be okay we decided as there were no announcements on the news.  But “nothing,” meant nothing.  The stations were dead.

And yet we waited.   Were they going to play or not?  So we waited some more, as did most of the fans.  Finally, as the sun began to slip over the western hills of San Francisco an official came out with a bull horn and made the announcement, “The game is postponed.”  We were dismissed.

Those who had waited had become instant friends talking about the earthquake, damage throughout the city and speculating about the future of candlestick.  Was it stable?  Were our homes okay?  How about our families?  What was the smoke we saw?  Are the bridges in tact?  How long would it take us to get home?  Would the game be played here?  We could only imagine.  Some of the answers came through our new friend’s portable radio.  Within minutes after losing power, back-up generators at TV and radio stations kicked in and they were back on the air.  We were shocked that a section of the Bay Bridge was down, that the Marina was badly damaged and there were fires.  In Oakland a section of the Cypress Freeway had collapsed.  Rescue teams were on the way.

There was this amazing camaraderie among those remaining, but now it was time to go home.  I looked around as the crowd filed out of the stadium in the requested orderly manner.  Would we come back?  That day nothing was certain so before we left the top of the world I took some photos of the sun setting over candlestick, the light standards silhouetted against the fading orange and red sky.  

Driving through darkened streets and across the San Mateo Bridge, we arrived home three hours later.  We were all concerned about family.  Stopping off at my parent’s home first we found my father sitting alone.  Mama had gone to bed.  The lights were back on and he related to us how the house had rocked so badly he thought it would fall off the foundation, but it had survived.  A few books had been thrown from the shelves and a few dishes had tumbled from the cabinets.  Dad said, “And your mother — she was so frightened crying out again and again, ‘What will we do?  What will we do?’   and the lights went out.  Ten minutes later as we sat by candle light, she asked, ’Why are we sitting in the dark?’  She had forgotten the whole thing.”   At home we found the same slight damage.  All was well.

While it was two weeks later that we saw the World Series, it was memorable, but never as memorable as October 17, which was, indeed and hopefully, “a once-in-a-lifetime event.”