San Francisco

“MOTHER, MAY I”…… AND ALZHEIMER’S

Growing up in San Francisco, the sidewalk was the gathering place and playground for neighborhood kids on a summer evening.  I would like to say a warm summer evening, but in the City that would be unusual.  More often than not great rolls of billowing fog tumbled over the tops of Twin Peaks cooling what was left of a pleasant day, but we didn’t mind.  Living four blocks east from the base of those famous hills, my sister and I tossed on a sweater as our mother had instructed, which was quickly removed and discarded onto a growing pile of outer wear as the games began:  “Kick The Can,” “Hide and Go Seek,” “Tag, You’re It,” naming only a few, and one of my favorites, “Mother May I?”

I have often wondered if its origin came from a frustrated school teacher in an effort to educate the players about the difference between “may” and “can;” permission and ability.   Wherever it began didn’t really matter, “Mother May I?” was fun and if we learned a bit of correct English along the way, it was a bonus.

With the mother in charge of the action. He or she controlled all of the players who were the mother’s children, all standing 20 or 30 feet apart from the mother.   A line, imaginary or real, was established as start and finish with all the children equally spaced on that line.  One by one the mother would call each player by name giving an instruction, and then wait for a response to her command:  “Take one giant step forward,” “Take three steps back,” “Jump forward on one foot four times and turn around.”  Any instruction mother dictated, the player was obliged to do.  Before setting forth, though, the player had to remember to always ask, “Mother May I?”  The mother then responded to the polite request with, “Yes, you may.”  However, the mother could be mean and say, “No, you may not,” and proceed to the next player.  If the player stepped forward without asking permission, she/he had to go back to the beginning and start all over. The winner, of course, was the one who remembered the magic phrase, resulting in reaching the mother and then returning to the finish line before any one of the other players.  The winner became the new mother.  Kids’ games; silly but fun, and pleasant to remember.

Alzheimer’s patients can be very territorial, not only with the house, their room, the car, the newspaper, the mail, or a worthless used napkin.  The list, actually, is endless.   Their life is extremely guarded as is their space.   After several years of living with Ken’s AD, I have found the relationship we share is seldom that of husband and wife.  If for a brief time, my husband is present, he can disappear in mid-sentence, or in mid-action.  Early on Ken was sweeping the kitchen floor — and it was Ken who took out the broom.   I called to him and asked if, after he finished, he would do something else for me.  I don’t even recall what it was, but in an instant he stopped sweeping and armed with broom and dustpan, he stormed over to where I was and growled, “Stop telling me what to do!”  When he becomes threatening, I matched his threat in no uncertain terms, which usually ended in a standoff.    Had I been more astute at that time I could have, possibly, averted his outburst.

Over the years I have learned to be more sensitive to his personality changes and his territorial domain, which is so much a part of being respectful to him as a person.  I have also rekindled the phrase of the old childhood game.  While I don’t say, “Mother, May I,” I do approach him slowly and ask, “May I….?”  If I approach too quickly and reach out to straighten his collar or close a button on his shirt, I may get my hand shoved away, and through gritted teeth he will warn, “Get away from me.”  I have long since stopped being hurt by these actions and remarks because I know this person is not the man I married.  More than likely, he feels like a trapped and frightened animal, fearful of me and my actions, no matter how well-meant.   But I have noticed that if I approach with caution and gently ask permission, using the magic phrase, “May I help you close the blinds?” “May I straighten your collar?” “May I button that one button on your shirt?” or “May I sit next to you on the couch?” and then wait for him to respond.  At times he says, “No,” or “No, thank you,” but other times, if he’s comfortable and not threatened,  he will say, “Yes, you may,” or a simple “yes” giving me permission.  Moving slowly through his strange world of Alzheimer’s keeps us both more content.

Originally posted 2009-08-29 06:40:27.

TO SOOTH THE SAVAGE BEAST

The only way I can find missing “stuff” that Ken hides is to concentrate on one room at a time.  I don’t just search, I clean and sort as I go.  Beginning in one corner, I cover every square inch; moving knickknacks, dusting books, thumbing the pages in search of hidden mail or other pieces of flat stash he might have tucked away.  In our bedroom I always begin in one corner, which seems to be a key area for him to put things in a “safe” place.   Because it is his favorite hiding spot, it is also the cleanest corner in the house.  When I find the thing for which I am searching I usually stop looking — and cleaning.

Presently, I have a long list of missing items, so I will probably cover the entire room including the closet and all of the drawers, and then move on to another room.  Armed with vacuum, old towels, Simple Green, a trash can and a box for donations I begin the task.  Flipping on the TV for company I turn to PBS and find they are doing a funding drive (aren’t they always).  The program is music from mid-century.  Good, I thought — before, after and during the 50s era — that was our kind of music.

As the old familiar tunes played and the cleaning began I found myself drifting back to happier times remembering when people actually went on dates.  Ken was so courteous, never taking it for granted that I would reserve the weekend for him.  Never waiting until the last-minute he would call mid-week to secure an evening.   Of course, we went to movies, enjoyed a snack at a local drive-in afterward, but the popular date was going somewhere to dance.

Dancing under the stars at Larkspur, an open air pavilion in Marin County, was always special.  It could be a little cool, but we were warmed by the romance of it all, or if I felt a chill he would offer his sports coat which I accepted.  Scattered lights twinkled among the surrounding trees and if the fog stayed away the moon shined through adding its own charm.   There was also The Edgewater,  a new dance hall near Playland at San Francisco’s ocean beach just below the Cliff House, but because it was new it was super crowded, so we avoided that one in spite of  missing the band that might be playing.

A really big date was being invited to go dinner dancing at the Claremont Hotel in Berkeley, which we did on occasion.  We danced, ordered dinner, then danced between courses.   The food wasn’t wonderful, but that was all right; music, dancing and a romantic evening out were what was important.  It was all part of what we called courting.

All of the hotels engaged the various Big Bands, but as their popularity began to fade, along with ballroom dancing, the hotels maintained an “in-house” band.  Russ Morgan was the Claremont’s choice for many years.   Ken and I danced mostly to his music and hummed his theme song  “So Tired” which became “our song.”  It was at the Claremont that I first asked myself, “Am I falling in love with this guy?”   I suppose I was — and did.

I had hardly moved on to the next section of the bedroom when Ken found me.   “What are you doing?” he asked.  I’m never sure who he is or what he might say.  Would he feel threatened to find me in “his” room and ask me to leave — to stop touching his stuff?”  I held my breath trying to read his mood.  Accepting my answer as reasonable, he continued.  “Would it be all right if I stayed in here with you,” he asked.  “Of course,” I reassured him.   Looking around for a place to sit, he eyed the bed.  “Is it okay if I sit on the bed?”  My husband was mellow and non-aggressive so I invited him to just make himself comfortable.  Propping up his pillow he settled in.   After a time PBS stopped the program for their long pledge “commercial” before returning to our music of yesteryear.  I continued cleaning and Ken began a conversation.   “Nice music,” he commented.  “Do you remember the songs,” I asked.  “A little,” his answer being more question than fact.   I began to reminisce about our past, cleaning and talking longer than I thought possible, being grateful for this time we were spending together — being almost normal.   Ken listened, adding nothing as he lay there relaxed and enjoying the moments.  I wondered if somewhere in his troubled, clouded mind the sounds from long ago might help him find some peace, at least for a little while.  Wasn’t it Milton who said, “Music hath charms to sooth the savage beast?”  Perhaps he was right.

Originally posted 2009-07-27 01:15:04.

CHOICES

When I was a little girl we lived in a fourth-floor flat located in the Noe Valley District of San Francisco.  On the corner, just down the street from our building, was “Dan’s,” a sparkling new soda fountain which served the best hamburgers and milk shakes in town, and ice cream — the likes of which we kids had never seen.  Long before Baskin had ever heard of Robbins “Dan’s” served at least eight flavors.  I had discovered maple nut, so for me there was no question as to what flavor I chose; three scoops of maple nut for a nickel.  Some of my little friends, though, had not settled on a favorite flavor and would wander back and forth in front of the counter changing their minds with every step.  Finally, the nice man in charge (it might even have been Dan himself) would say, “What would you like, vanilla or vanilla?”  “Vanilla,” was the immediate reply — problem solved.  Sometimes there are just too many choices.

Today, we’re confronted with even more choices.  Not only B & R with their 36 flavors of ice cream, but how many channels do we need on TV — and menus?  When Ken and I go out to eat, if only for a quick bite, he studies the menu board, or the menu, then hands it to me saying, “You can order.”  I know all of those choices are confusing to him, as they were to his mom and dad and my own mother, all three victims of Alzheimer’s.  So, as we did for them and as I now do for Ken, I order.  It’s like vanilla or vanilla.

At home, choosing has become almost problematic as  Ken’s AD continues its advance.  Perhaps it’s not so much the choosing, but forgetting that a choice has been made.  I had arranged his razor and shaving cream in a plastic glass, the comb and brush in another, and his toothbrush and toothpaste in a third.  With all three side by side on a shelf, it was easy for him to do his morning routine before taking a shower.  This method has been successful for the past several years, but not any more.  A shave and shower for a younger, healthier Ken was 10 minutes.  Now it stretches from 30 minutes up to an hour.

After a period of time I peek into the bathroom to see how he’s doing.  “Good,” I  say to me, “He’s shaving.”  Then he’s brushing his teeth; five minutes later he’s shaving again.  I worried one morning that he would injure his face after a third shave.  Had I intruded, suggesting he move on to the shower, he would have been furious.  Furthermore, during the day when he brushed his teeth, he felt he should shave again and wanted to shave before going to bed as well.  Shaving and brushing his teeth had become “one.”  For sure, I needed to rethink his entire routine.

Solution:  reduce the choices.  The comb and brush stayed, but as soon as he finished shaving, the razor and shaving cream vanished.  It was replaced with the toothbrush and toothpaste which remained all day until he went to bed, then the shaving gear went back on the shelf and the toothbrush and toothpaste vanished.  At times I see him searching for the missing “set,” but a change of subject brings him out of the bathroom or into the shower.  The new arrangement is working.

However, there are times when Ken makes decisions because he still has an understanding of what he wants and what he likes.  Planning on doing some yard work I laid out an older pair of jeans — mended and faded.  Dutifully, he put them on and was ready for breakfast, but before sitting down he returned to the bedroom.  Coming back to eat 10 minutes later he was wearing his good jeans.  The shabby pair ended up in the back of the closet.  Surprised, I had to laugh, and I felt good for him because he made a choice by himself.   In addition, when I ask what kind of ice cream he wants for dessert, chocolate or vanilla, he says without hesitation, “Chocolate.”

Originally posted 2009-06-28 07:15:33.

THE BEST THING

It was Saturday night and I had hoped to have Ken settled in so I could go to bed early.  I felt unusually tired and he had been beastly all day: very agitated, very angry, very arrogant and argumentative.  He is on medication to cut down on the agitation and it usually works, but not that night.  Suggested dosage is one half pill in the morning and another toward evening.    Nothing seemed to make him happy or subdued, so instead of waiting until evening I gave him the other half in the late afternoon and another half pill (with the doctor’s permission) around 8:00 p.m.  Instead of him becoming calm he became more hyper and more angry.  Even the Tylenol PM at 10:00 o’clock was ineffective as he wandered from room to room ranting and raving and ordering me to leave.

Exasperated beyond description I went into the office and opened the computer thinking I would work for an hour or so.  When he becomes very unreasonable it’s easier to just lock myself in and him out.   I pay no attention to his demands to open the door and eventually he settles down in front of the TV.  Usually, he will sit for a while, get drowsy and I can talk him into getting ready for bed.

After an hour I peeked around the corner and found him ransacking the refrigerator.  “What are you doing?”  I asked.  “I’m hungry,” he replied.   “But we had dinner,” I insisted.  “Maybe you had dinner,” he growled, “but I didn’t.  I’m hungry.”  Perhaps some food would subdue him, I thought, so I made him a peanut butter and jelly sandwich.  He ate half and told me that’s all he wanted.  He went back to sitting in front of the TV.  It was midnight.  “Please go to bed,” I begged.  “No,” he answered.  “I’m going to watch TV all night.” 

Exhausted and sleep deprived I went back into the office.  I couldn’t believe how wired he was — and why?  I returned to the computer.  The letters I typed danced up and down on the monitor and when I tried to proofread I fell asleep at every other line.  How I ached to go to bed and the more sleep deprived I became the more my anger grew.  I raged into the night, cursing that I had ever met him — that we had married — and in my frustration I imagined a simple, uncomplicated life without this deranged man — any man.  Why hadn’t I remained single, opting for a career in New York instead of marriage.  At that moment I saw myself sleeping in the bedroom of a lovely apartment  high above the city.  The room was silent and I was alone — how glorious — then my reverie vanished.  I crossed my arms on the desktop, dropped my head and cried.

It isn’t as though I can’t leave him alone.  At times I do, but only for a while and usually he is sleeping or happily occupied reading junk mail when I run to the bank or do other small errands.  I would be fearful to fall asleep with him in his present frenzied condition.  Even if I pulled the 220 fuse controlling the stove, I would not feel comfortable.   In addition to ransacking the pantry and the refrigerator, he leaves water running and lights on everywhere; and he could hurt himself.   On one of his stubborn nights I found him in the living room on the floor.   Apparently he had fallen getting out of a low chair.   Had I been asleep he would have been there all night. 

Finally, the house seemed quiet as I ventured out to see what he was doing.   Still watching TV, he appeared to be more relaxed.   Softly I asked, “Let’s go to bed.”  He said, “Okay.”  It was 3:00 a.m.

I slept fitfully and awoke at 10:00, staggered into the kitchen/family room and switched on the television.  Through my burning eyes the Palace of Fine Arts in San Francisco appeared on the screen.   I first thought it to be a travelogue, but the scene changed showing two men in a row-boat: one young and the other older.  The younger man spoke briefly; something about not being sure of marriage.  I decided it must be an old movie.  Still recovering from the previous night, I plopped myself  into a chair.  If I watched I didn’t have to do anything else — at least not for a while.  The camera focused to the older man — a Catholic priest — who answered the younger man’s question with reference to marriage, “It’s the best thing I ever did.”  Continuing, he explained that he had been married to a wonderful woman for 26 years.  When she died he entered the priesthood.

I watched this rather silly movie to its end where thousands of young women scurried to the church in response to an ad for marriage to this very wealthy, but reluctant swain.   Following a series of wild chases up and down the hills of San Francisco, he eagerly married his true love with all of the would-be brides as witnesses.   The movie will be easily forgotten, but I’ll remember the most thought-provoking line the writer wrote:  “It’s the best thing I ever did.” 

I remembered the night before; my anger and cursing my own marriage of more than a half century.  It has been a good marriage — not a perfect marriage  — not a perfect man or a perfect woman.  I don’t believe there is that kind of perfection, at least not in this world.   However, I will give my marriage a good solid B — better than average.  Looking back on our youthful beginning I wonder if I thought of “in sickness and in health” as meaning anything more than a cold or the flu.  How naive that would have been, but more likely I don’t believe either of us thought about illness.  After all, isn’t youth invincible?   Healthy young people on the brink of a new life don’t look very far down the road.   And if they did glimpse the ending would it alter their decision to go forward? 

Our life together has brought us our share of adversity and has now thrust upon us this illness of unmeasurable grief and sorrow, but it has also showered us with years of happiness, joy and the blessings of an ever-expanding family.  Our five remarkable children, now showing signs of greying hair and middle-age spread, have bestowed upon us grandchildren and they in turn have given us great-grandchildren, and our posterity will go forth.  Thinking of my imagined single life I had to ask “me” if that’s what I really would have wanted.  Had I chosen not to marry what would that other life be like for me today?  Even without looking down the untaken road I would have to conclude that life without my family, without Ken, would be unbearably lonely and colorless. 

In the bright, warm light of Sunday morning I believe I received something to ponder; perhaps even a Heavenly message through a silly old movie and from an actor portraying a Catholic priest reminding me that, indeed, marriage is the best thing I ever did.

Originally posted 2009-05-15 06:56:12.

A BRIDGE TOO FAR

In the late afternoon I had driven to the post office.  Ken often likes to come with me when I have errands to do, and I had lots of errands, so turning around and heading back home was disappointing to him.  “Do we have to go home?” he asked.   “Let’s take a walk along the bay.  We haven’t done that in a long while,” I suggested, “but first we need to go home and get our coats.   It will be cold down there.”   He was enthusiastic as I helped him on with a jacket and handed him a baseball cap.

The weather was clear and sunny, but windy and cold.  April and May often forget it’s spring in the San Francisco Bay area.  Wind blows across the cold waters of the bay, especially in late afternoon and hikers along the trails bundle up as though it were winter.  We did too, but forgot gloves so our hands were thrust deep inside our pockets as we passed through the pedestrian gate, climbed up a short incline before we headed west bracing ourselves against the stiff, constant wind.

“This is the first time I’ve been here,” said Ken looking around to what should have been so familiar to him.  When he was running 10 ks and marathons this was his training ground.  The; Bay trail was also where he took our dogs for their daily exercise.  This is where our Golden Retriever would leave his side and race into the water.  If  it was wet she was in it even if it was only a mud puddle.  I always scolded Ken because she came home wet and coated with black sand.   She was such a good girl and usually so obedient, but when it came to water her breeding took over.  Doc, on the other hand just watched and barked at her to get back on the trail.  She didn’t obey him either.  “Don’t you remember bringing the dogs down here?”  I wistfully asked.  “I’ve never been here before,” he insisted.   I let it go.

I was pleased with Ken’s rather brisk step.  One knee is a little tender and he often lags behind when we shop, but he kept up with me.  I thought how good it was for him.  The fresh air and the exercise.   We looked overhead to watch an airliner glide in for its landing at the airport.   “It’s going to Oakland,” Ken remembered.  The afternoon felt so good.   “Going back will be easier,” he commented, “the wind will push us.”  I agreed and was surprised at how well he was doing, but not wanting to overdo I said, “We’ll turn around at the second bridge.”

With the wind at our backs and nearing the end of the trail, I noticed Ken was ahead of me and I was walking fast.  “Slow down,” I cautioned.  “I can’t,” he answered as we approached the downhill incline.  His feet took on the shuffling of an old, fragile man, but running.  “STOP!” I shouted running after him, “You’re going to fall.”  To make matters worse, he was leaning forward.  As he neared the closed cyclone gate I hoped he would hit it before he fell, but he didn’t.  Three feet before the gate he stumbled and down he went.  I raced to him worrying that he could have broken bones, or worse, damaged his hip replacement.  Was  he all right?  And me with my cell phone at home, how careless.   He turned toward the gate, slipping his fingers through the wires and with my help, pulled himself up.  Standing for a minute, he appeared to be okay.

Resting for a while we ventured forth on level ground toward the car, but his legs wanted to run.  “Stop,” I again cautioned.  Again he said, “I can’t.”  It was if his mind had forgotten how to make his legs stop.  The wind was mild in the more sheltered area, but he still leaned forward and wanted to run.  I grabbed the back of his jacket and pulled hard — almost as if he were on a leash — until we reached the car where he slid into his seat and relaxed.

I am sure he will have aches and pains tomorrow and I am sorry for that.  He doesn’t need any more pain.  He has some scratches and most certainly —  bruises.   Obviously, I over-estimated his ability, but I can’t help wonder if his mind had, indeed, forgotten how to stop.  Our afternoon together had begun with such promise, so good, so invigorating, but it could have been a disaster.  Perhaps, in a few days I’ll start with a walk around the block — and my cell phone in my pocket.

Originally posted 2009-04-16 05:20:04.

GROWING UP WITHOUT TRICK OR TREAT

This gallery contains 1 photo.

TRICK OR TREAT ? WHEN I WAS A KID

October 30, 2015 – There once was a time , believe it or not, when it was unheard of to visit

Giant ghost and holiday lights.

This giant ghost stands watch over trick or treat coming to the Romick home.

neighborhood homes and kindly threaten “trick or treat” in San Francisco or any other city in the Bay Area.

A HALLOWEEN PARTY NOW AND THEN

My sister threw the first Halloween Party that I ever knew about. We lived in an old Victorian house high on a windy hill in San Francisco, and that Halloween night it was raining. She decided to let her friends know which was the right house so she rummaged through the garage until she found our dad’s “trouble light” for working on cars, and because it had a hook, she hung it on the front porch for all to see but not before she replaced the ordinary bulb with a bright red one, which shown brightly all over the neighborhood. Continue reading

Originally posted 2015-10-30 20:38:52.

ALZHEIMER’S: WHEN THE DAUGHTER BECOMES THE MOTHER

adult-child silohuette

It’s a heart-rending transition, but when does it happen that the parent becomes a child and the child becomes the parent?

 

 

 

 

 

May 11, 2012 — There is never a set time for this exchange to happen.  It’s not like turning 18 when you’re miraculously transformed into a legal adult or being 21 and you can toss the phony ID before entering certain establishments previously forbidden, nor is it anything like having that first baby when the full glory of inescapable motherhood is thrust upon you.  The mother becoming the child and the child becoming the mother is an act of acceptance and compassion on the part of the child and never sought after by either adult.  Furthermore, not every child has the calling, challenge or even the temperament to accept the transition.  It’s a journey stumbled into as the older mother slips into a need either through old age, poor health or falls under the dreaded umbrella of dementia, which in our family is and has been  Alzheimer’s disease.

SO….  WHEN?

Was it when my mother, Irene, broke a hip and the doctor forbad her climbing any more ladders.  She had planned on painting the kitchen and felt frustrated at not being able to follow her schedule. To get the job done and soothe her jangled nerves my sister Janet and I painted it for her.  With her strong, but recovering, body and equally sound mind it wasn’t then that Janet nor I stepped forward to become our mother’s caregiver.  Mom wasn’t ready. We weren’t ready either nor had the thought even passed through out minds.  Perhaps it was a few years later  in the car when I suddenly braked and my protective arm flew out across her chest as I had automatically done for my children before seat belts.  Could that have been a beginning or was it when at 85 my mother began to lose touch with reality.

The stats tell us that if we live long enough one half of the population will have AD. In the case of my parents, the stats were right on target.  My father was as sound as the dollar had been long ago, and it was he who made the decision to leave their beautiful country home in Sonoma County, California and move closer to us on the east side of San Francisco’s bay because he could see his beloved wife of nearly 65 years slipping away.  “I don’t want to live with you,” he proclaimed as we searched for their new home, “We just need to be near you.”

ILLS AND BROKEN HIPS

They did well by themselves in the house nearby which was a 15-minute walk or a quick ride for Ken and me.  I saw them every day and whenever Dad called which was the case one evening when the phone rang.  “I think Mama broke her other hip,” he stated.  Already deep into forgetting, the recovery took longer than it should and she never really regained what was lost. Previously, she and I had taken short walks through the neighborhood.  No longer steady on her feet I pushed her along the same route in a wheel chair. Had I become the mother then?  Or was it when I helped her get ready for bed, or pulled a comb through her tangled hair and she screamed like a young banshee, and I scolded her? Could it have been when she needed to be checked by her p.c. and I held her hand during the exam, or the time before they moved when she had a painful kidney stone and I worried about possible surgery?  Was she the child and I the mother? Continue reading

Originally posted 2012-05-12 20:14:42.

ALZHEIMER’S, CLINICAL TRIALS, HOLISTIC TREATMENTS AND SPICE

ADVENTURES IN HOLISTIC TREATMENTS

Using the spice tumeric has been reported as a possible holistic medication for Alzheimer's.

3/30/12 — Shortly after Ken was diagnosed with Alzheimer’s our grandson Sean called to tell me about turmeric. This was in 2005:  former President Ronald Reagan was still alive and afflicted with AD as was Sargent Shriver and several other well-known people.  It’s been my belief that having celebrity names included under the Dementia Umbrella brought the escalating problem up close and in the face of not only society, but the medical community as well. On the market to fight the dreaded disease were two medications Aricept and Namenda, and then, for me, came a shot in the dark: turmeric.

“The spice,” I asked Sean.  Yes, the spice.  I just read an article where studies have been made in India about AD.  What they found in this vastly populated country is that only 4% of the population shows any signs of Alzheimer’s, where in the U. S. it’s fast approaching 50%.  Scientists have wondered about their diet – so different than the Western diet – and if it has any effect on avoiding Alzheimer’s.  The question of spices was also posed with concentration on curry, of which turmeric is the main ingredient. The article went on to state that UCLA and the VA were going to do studies on the spice – to see if it could be useful in treating Alzheimer’s.”  I thanked Sean, telling him I wasn’t going to wait for studies and would check it out with our doctor.

My dear Dr. Pleasant (as I refer to him) smiled, controlling himself as I told him of the report so as not to roll his eyes, and said something like, “really.”  Not flinching at his skepticism I asked, “What can the medical community do for us in treating Alzheimer’s?”  “Nothing,” he sadly replied.  “So, tell me how much turmeric can I safely give Ken?”  We talked and he checked his computer and I went home happy.  This was something I could do.

At the health food store I purchased some organic turmeric, gelatin capsules, a loading tray and I was set.  Beginning slowly I rationed the filled capsules to Ken which he swallowed along with a bunch of other vitamins and supplements he was taking, and we both felt as if life had given us a weapon.  After all, being optimistic is a good thing.

CLINICAL TRIALS

Meanwhile, my friend Shirley called and asked if I had tried to get Ken into clinical trials.  I hadn’t, but she continued with what information she had gathered and finally gave me a phone number so I could inquire if he was eligible for trials at one of the leading hospitals in San Francisco.  “Call them” she encouraged.  “It might help.” Ken had been on turmeric for a few years.  While I didn’t intend to stop the spice I did call the number and set up an appointment.

Once I had given them Ken’s history, including Crohn’s, the surgery and the loss of three feet of intestine, Ken was given an examination as well as a host of memory tests.  I was very impressed with their meticulous concern, their relay of doctors and the 3-hour time frame for the examination and evaluation, especially remembering how in 10 minutes our HMO neurologist arrived at his diagnosis.  After speaking with Ken and me for a very short period of time Dr. Hurry said, “Your husband has Alzheimer’s,” and that was that.

The clinic doctors explained what would be offered if Ken were to be accepted into the clincial trials and I felt very encouraged and pleased.  I also told them about his taking turmeric.  “Has it done any good,” asked the doctor.  I had to confess that I had no way of knowing because I wasn’t conducting a double-blind study, nor did I have any other basis for comparison.

After all was said and done, Ken was disqualified because of his previous surgery and the questionable ability of his system to absorb any medications taken by mouth.  We were, of course, disappointed, but pleased that we had given it our best shot.  And speaking of shots and patches, there were no other options at that time for any trials’ medications to be delivered to the body other than by mouth.

Even now with Ken, delivery by mouth is no longer simple. Following the severe automobile accident which involved both of us Ken wasn’t taking his handful of pills, nor the turmeric.  The combination of me healing and recuperating elsewhere for three months, his minor injuries, and the new caregivers in his life no one knew or thought to follow our regimen.  By the time I returned home he had forgotten how to swallow pills and capsules.  Still needing blood pressure medication his caregivers have been hiding the small pill in his food.

VIRGIN COCONUT OIL

As with turmeric (studies have been inconclusive) I ran the idea of coconut oil by our doctor mentioning that I had read some encouraging articles on the subject.  With the medical community still at square one, Dr. Pleasant resolutely gave me the nod.  I assured him I would begin slowly. I have Ben spread it on toast for starters.  Unlike turmeric, it tastes good, just like coconut.  Ben, from the Philippines, smiled and said they use it in many ways back home.

Will it make a difference?  I don’t know.  Did turmeric make a difference with Ken taking it for nearly four years? The answer is the same one I gave the clinical trials doctors.  I don’t know because I had no basis for comparison, and even if it delayed AD’s progression for any amount of time I would not know for the same reason.  I suppose as his caregiver-wife I am always ready to try holistic remedies because it allows some hope.  Not necessarily hope for cure or restoration, or some gigantic breakthrough; it just keeps me involved allowing me to be a partner in possibly making Ken a little better, perhaps making a difference no matter how slight with this dreadful and mysterious illness. And I suppose it’s like doing whatever I can do to bring a little bit of my husband back home – just for me.

Questioning, experimenting, reading, learning and wondering helps me to keep my chin up and this is what works for me, and with our doctor’s input I continue to inch forward.  I do say in conclusion; please don’t try anything new at home — on your own.  First, check it out with your doctor.  He still knows best — even if he rolls his eyes.

 

Originally posted 2012-03-31 03:23:18.

FORGETTING WHAT SHE DID BEST

old fashioned canned food

Once a multi-talented woman, Alzheimer's took away Irene's ability to do any of the things she was so talented at, including canning food.

My mother, as I have mentioned before, was a multi-talented woman.  I doubt there was anything she couldn’t do once she set her mind to it.  I recall as a little girl someone had given us their old couch shortly after she and Dad moved the family to San Francisco in the middle of The Great Depression.  You might say the springs of its life had sprung.  Not only the springs in the foundation, but the springs in the three cushions bulged in every which direction – no foam rubber back then.  For a family who was without a couch, however, it was better than no couch, but its sorry-looking condition didn’t last long.

Mother went to the library and found herself a book about upholstery.  Little by little she tore the whole thing apart, bought some twine, fabric and several boxes of carpet tacks.  Following directions from the book it was only a few weeks before she had all of the springs retied, cushions and sofa sewed and/or tacked in place with a new fabric. Abracadabra!  We had a “new” chesterfield, as a sofa was often referred to way back then.  That’s just a sampling of all the things she continually did to make our rented “flat” a home.

In the kitchen she bottled a goodly supply of fruit, made jam and stored staples to make sure we would always have something to eat during an emergency, such as my dad being without work.  Mama also read books on nutrition.  A well-balanced meal with the necessary food groups became part of the way she cooked and served my father and her three growing daughters.  She had saved her spare nickels and dimes to purchase a set of waterless cookware to preserve each vitamin found in the food she bought.  Every so often we pleaded for fried potatoes like Aunt Esther made, but Mama was firm in her knowledge that potatoes cooked with the skins – and steamed — in three tablespoons of water were better for us that those occasional greasy fried potatoes at Aunt Esther’s house.   I know we didn’t appreciate her chosen, healthy lifestyle, but I’m also certain we were the beneficiaries of her good, nourishing meals.

Life, though, wasn’t all steamed potatoes and veggies, she made delicious bread and the very best Parker House rolls in the world.  No matter how hard we girls tried as adults nothing we made compared to them.  With no convenience foods and no boxed cake mixes, any desserts Mama made were from scratch.  Furthermore, the fruit from the jars in the dead of winter was a treat in itself.  So was the jam, especially when spread on one of the Parker House rolls.

Even though we resisted, my sisters and I grew up knowing what was nutritious and what wasn’t.  Who could have believed grocery markets of the future would be flooded with everything one might want packed into a box with more vitamins in the cardboard than in the food inside.  With her example before us and our acquired knowledge of nutrition, we three girls continued with most of her ways when we married and began our families, keeping in mind, always, what was good for us and what wasn’t – perhaps allowing our children a little exposure to what is commonly known as junk food.

When she and dad left San Francisco and retired to “The Little Farm” in Sonoma County, she continued with her healthy lifestyle.  Planting additional fruit trees and a vegetable garden, my mother fashioned them after what she had known in her youth and young adulthood. Back then, everything was organic, grown in nature’s own way, but no one had put a name on it.  Her modern-day garden was cared for in the same way long before it became the popular thing to do and had a special name, and summer visits from Mom and Dad always included a few buckets filled with fresh-from-the-garden produce.

They had a wonderful 20-plus years of retirement before we realized she was becoming mentally ill, and my father  recognized the need to move closer to us.  “She just doesn’t do much of anything anymore,” he sadly explained, adding that he was having problems with his own health. A few years prior she had forgotten about the fruit trees, overgrown bushes and her garden, spending her time reading, something which had always been one of her great pleasures.  It appeared she had lost all motivation in continuing with so many of the other joys where she had been so capable.  I visited one day while she was still making an effort to do some of her favorite things.  On the work table in her sewing room I found a small platform rocking chair.  She had managed to remove the old covering getting it down to the bare frame.  I commented about her work and asked to see the new fabric she was planning to use, hoping to spark an interest.  Dismally, she asked if I would take it home.  “I don’t know how to do this anymore.” she stated.  “Can you finish it?   Being my mother’s daughter, I could, and I did, covering it with a pale blue fabric dotted with small pink flowers.  It was perfect next to our fireplace.

When they were ready to move I spent a week with them packing.  My niece, Dee, who lived in the area, came to help.   Stimulated by our activity, Mama bustled around with a bit of excitement much like her old self.  She supervised in her own way and actually made a few good decisions about what we should pack and what we could toss.  I was pleased with her participation.

When meal time approached Mama said she would prepare dinner for us if we wanted to keep on working.  Dee and I agreed and she scurried off to the kitchen.  Several minutes later she returned with a spoon filled with cooked ground beef for us to taste.  “What else do you think this needs?” she asked.  We both took a taste as Mama looked on.  Had I not know the ground beef was fresh I believe I would have declined dinner.  Neither Dee nor I could figure out what she had added to make it taste so awful. In response to her question I suggested, “Tomato sauce, add a can of tomato sauce.”  “Maybe a bit more salt,” advised Dee.  Off she went, back to the kitchen.  Dee and I looked at one another as she asked, “How can anyone make hamburger taste so bad?”

It wasn’t long before she called us to dinner.  Dad wolfed it down with no comment.  Perhaps he was getting used to her loss in creating quality cuisine.  Dee and I stared at our plates filled with non-descript food.  Looking around, we spotted a few empty cans and some trimmings from vegetables, so we felt assured dinner wasn’t going to do us in.  Good, it was not, but we muddled through.  Besides, we were hungry.

Alzheimer’s does that to people.  No matter how capable Mama had been, AD was taking it all away.  Over the next year or so her decline picked up speed, and when my father no longer could identify his food he took over the cooking.  “I’ve done it before and I can do it again,” he stated in a matter-of-fact manner.  Eventually, it became necessary to hire a caregiver to be with them for the remainder of their lives.  Besides caring for Mama and her child-like ways, Jayne also did the cooking.

I think often of Mama and the example she set, of the security we felt during the dark times of the Depression as she made sure there was food in her larder for us and comforts in our home.  Perhaps it wasn’t what we thought we wanted, and at times it probably lacked in abundance, but we felt secure.  We weren’t really aware of their struggle – only in retrospect did we grasp the fear and uncertainty they must have felt.  With adult understanding, we were – and are — filled with the utmost admiration.

I am grateful so much of her has stayed with me.  I know that when I pull out my jars, lids and cold-pack caner as the apricots ripen on our tree or when I stir a kettle filled with bubbling applesauce, Mama is not far away – watching and pleased that her daughters have learned about being self-reliant, about making do with what we have, or doing without.

There seems to be an ebb and flow with economics in this life which, at times, renders us to be more frugal than we might want to be.  No one knew better than Mama how to deal with difficult times, and she handed that legacy down to her three girls. Recently, I have noticed the small, blue platform rocker next to my fireplace is getting rather shabby.  Years have slipped by since I brought the bare frame home at Mama’s request.  Perhaps instead of replacing it, though, I think I’ll just recover it – again — using the knowledge and skills that I not only inherited — but observed and learned from my wise and talented mother.

Originally posted 2011-07-24 04:30:30.

CAR KEYS AND GIVING THEM UP

car keys

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

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

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

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

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

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

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

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

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

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

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

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

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

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