caregiving

LOVE LETTERS AND ALZHEIMER’S

 

love letters

Love letters from the past bring thoughts of old times to this Alzheimer’s caregiver.

March 1, 2013 — Spending an evening with granddaughter Liz we ran across a decorative box filled with letters. 

Out of college she has traveled the world and was stopping by for a few weeks to visit with me and Ken before deciding what might be next on her youthful bucket list.  Memorable as our young beauty is her Alzheimer’s grandfather has shown no signs of recognition, viewing her with suspicion whenever she coos him a hello while passing his chair or chats with him for a minute or two.

OLD LETTERS

Holding the box and peering inside her big blue eyes opened wide as if she had found “pay dirt.”

“Yes,” I told her, “those are letters from me and your grandfather written before we married.  He was working for the railroad in central California and I lived and worked in San Francisco.  The two of us kept in touch by writing letters to one another.”

Love letters,” she asked?  “I suppose you could call them love letters,” I answered.  It was before we became engaged, during and right up until we got married.” Continue reading

Originally posted 2013-03-02 03:52:26.

ALZHEIMER’S AND THE ART OF DOWNSIZING

DOWNSIZING: TIMING IS EVERYTHING

Holding back full closet

Whether you are caring for someone with Alzheimer’s or not, downsizing is easier to do sooner than later.

February 1, 2013 – As we continue with life’s journey along its often bumpy highway there comes a time to think about, if not begin, downsizing; a polite way of saying “get rid of some of that stuff.”  Whether the husband or wife has Alzheimer’s, or any other kind of debilitating or terminal illness, isn’t necessarily part of this decision. Possessions – stuff – have a tendency to reproduce and accumulate; well perhaps not reproduce, it just feels that way.  However, stuff does seem to constantly collect jamming drawers, crowding closets and overwhelming the garage while the inhabitants continue searching for additional storage.

(Special Note: This blog has been nominated for  The Best Seniorhomes.com Senior Living Award, Personal Blog. Please give it a vote by clicking on the certificate to the left. Thanks!) Continue reading

Originally posted 2013-02-02 19:41:24.

ALZHEIMER’S, PAIN AND THANKSGIVING

PAIN AND ALZHEIMER’S

 A woman cries in pain

Pain comes in many forms to different people.

November 16, 2012 – Pain:  Something we all experience in many forms yet it remains undecribed and unmeasured because there is no scale or other device to record those calculations.  The severity of the pain may be determined really bad as medics watch a patient’s blood pressure skyrocket under many kinds of duress, or the doctor will summarize it with, “She/he is in a lot of pain.”

A friend might say, “I feel your pain.”  Perhaps.  But to what degree?  So the remark should be graciously accepted for what it is: concern, sympathy, comfort, recognition or even empathy for where you are in life’s battle at that moment, and for what discomfort you are feeling – either mentally, emotionally, physically or all of the above. Continue reading

Originally posted 2012-11-17 21:48:36.

THE ALZHEIMER’S BURDEN? AND WHO’S IN CONTROL

By Ann Romick

old woman carrying a burden

A major concern for many people with Alzheimer’s is not being a burden.

August 17, 2012 — When abilities began to fade most healthy older people realize that changes are ahead.  “We don’t want to be a burden to you,” said my mother as the two of us talked about the realities of growing old — when she and my father would become less able. Certainly not an original quote, but one probably spoken by all aging parents to their children when faced with old age or their life is threatened by some sinister disease such as any under the Dementia Umbrella.  For me and my husband Ken three out of four parents developed Alzheimer’s  in their last years. Ken makes number four.

BURDEN?

So what defines a burden?  “Well!” snipped one of my sisters from out of state, “If you felt that caring for our parents was such a burden you shouldn’t have done it.”  I wanted to ask, “Who else?”  Sometimes being snippy in return is just a way with some siblings, especially after years of caring for our parents. Instead I zipped my lip. Lip zipping would have pleased mom and dad.

Definitions include a heavy weight, load, or encumbrance of sorts, possibly a drain on finances, and definitely one on emotions and physical strengths.  Does it mean additional work for the selected caregiver?  Absolutely!  A change in routine, lifestyle, conceivably a strain on family relationships – even strains on a marriage, and yet some people ask, “Is it a burden?”  Of course it’s a burden – a very heavy load – but one accepted with grace and love for any of our loved ones who have carried burdens for us from time to time – or not.  It’s love that lightens the load. So tempered with that love, a good attitude and lots of prayers, for those who are so inclined, most caregivers get through – often struggling – but we do get through. Continue reading

Originally posted 2012-08-17 23:40:37.

ALZHEIMER’S: JUDGING, ADVICE AND MOTHERS

April 28, 2012 — “I don’t give advice and I don’t judge,”said my friend Clement.

woman handing a nickel

Advice, even for Alzheimer's caregivers, isn't worth it unless you pay something for it.

A MENTOR

Clem’s mother had been a mentor for me.  She didn’t know it nor did I.  It wasn’t until she was gone that I recognized the impact she had on my life. Nearer my mother’s age, but a little younger where the generation gap hadn’t felt as vast, or as a teen perhaps I wasn’t doing the distancing thing from Hertha as I was with my mom.  Nevertheless, this mature woman was someone I could sit with hour upon end and bask in her wise and witty wisdom.

A stay-at-home mom with four rambunctious boys and one fragile girl, her prior career was that of a registered nurse turned stewardess, as flight attendants were called when Hertha flew the blue and friendly sky; the medical part being a requirement during the early days of national and international flights on many of the major airlines.  I always wondered if “Personality Plus” was also a requirement because if anything Hertha could have been “Miss Congeniality” anywhere she went.

Hertha’s last years were not spent as a dementia victim which had been the fate of  my own mother so I was a bit surprised recently when Clem winced a little recalling “being there for her” during her later widowed years.  That’s when he said, “I don’t give advice and I don’t judge,”   even though advice from experience was there if he wanted to share. He added how his mother had eventually moved to another state to be close to her sister and another son, Kyle.  “After mom died Kyle wrote me a letter of apology and appreciation for my before years,” Clem chuckled. Continue reading

Originally posted 2012-04-28 02:55:27.

KEN AND THE MOVIES: “WATCH OUT BEHIND YOU”

B movie Poster

The theatrics of a 'B' movie can be likened to Alzheimer's patients.

Ken and I are from the era of double features, short subjects, news reels and cartoons: the old Hollywood when studios had the last say about which mega star was contracted for the lead role in the latest “Big” movie.  Other hopefuls were sent down to the “B” studios.   Those were the days of block-buster pictures with Spencer Tracy and Katherine Hepburn, or John Wayne and Maureen O’Hara, and the low budgets with – who remembers.

Not only were the unknown actors soon forgotten (unless they became STARS), but so were the “B” movies.  However, a few of the ploys in the plot, seen time and time again, were snickeringly remembered.   Actually, a few have become legendary. The one I recall most vividly, used by the good guys as well as the bad guys, was a scene where a captured person stood with his hands high above his head facing in the direction of a door – opened or closed – it didn’t matter.  The guy holding the gun was in charge, and could either shoot his captive (bad guy), or handcuff him and cart him off to jail (good guy) depending on the script.

Sometimes, though, just as the final chip was down the captive would say something like, “Look out behind you!”  and the gun holder would glance behind him – just long enough for the captive to reach forward grab the gun and take charge.  Or, there was someone actually there to relieve the gun from the gun holder. The scene was used so often in “B” movies it became laughable.  That must be the part Ken remembers.

Dear Ben is so faithful in his caregiving duties, and Ken is usually so unappreciative. “Ben is your friend,” I croon as the three of us head for the shower.  “Him? He doesn’t know anything,” Ken replies.  “And you, you don’t know anything either.”

Before long Ken will slip into the imagined scene.  He looks at Ben and threatens, “You’ll get yours.  Just wait till my friends get here.”  Then he calls out through the open door.  “Get him guys,” or, looking at Ben, “Watch out behind you.”  I can’t help but giggle a little, telling Ken that people don’t fall for that line any more, but I know in his limited mind it makes sense to him. He can also take on a military roll: standing near attention he glowers at Ben and says, “You are dismissed.”  Never an officer I ask myself, “Where’s that coming from?” Probably some old movie he had seen before he met me.  Other times he’ll look directly at me, nod his head toward Ben and say, “Call the police.”

Or he can be very angry with me wondering who I am and why I keep bouncing in and out of his mind, he’ll request, “Hand me that ax, I’m going to whack off her foot.”  “Ouch!” I tell him.  “That’s not very nice of you to say things like that.”  Puzzled he responds, “What did I say?”  Like pushing the wrong button on my hand-held calculator all kinds of jumbled and incorrect numbers appear on the screen.  His mind seems to break down information and then scrambles it, sending thoughts and words in every which direction.

Ken’s Alzheimer’s is now very advanced, but I can sometimes read him through his eyes or changes in his facial expressions.  He can also be very cunning – liked a frightened, trapped animal.  So he doesn’t hurt any of us during clean up and shower time, his hands are temporarily restrained, but it is amazing how quickly he can “throw” an elbow into Ben’s or my ribs, get a knee high enough to make a definite impression in someone’s groin area, or bring up a foot for a well-placed kick.  Whether it’s a calculated plan or an instinctive defense I’ll probably never know.  “Whaaaaattttt?” he questions when caught in the act, followed by “I didn’t do anything.”  “You punched Ben with your elbow,” I tell him.  “I didn’t do that,” he insists, his eyes looking innocent.

Yet, there are times when Ben is helping him and he’ll take on a new roll and say, “I appreciate everything you do for me.  Thank you.”  That could be from any of Jimmy Stewart’s movies. Ben responds with a smile and says, “You are welcome, Sir.”  Good manners don’t last long.  Other times when Ben turns his back Ken will scrunch up his nose and stick out his tongue.  I’m surprised he doesn’t give him a loud, spit-filled raspberry to go with it.  Instead he’ll look over at me and wink as if he knew exactly what he was doing.  With Ken’s threats coming from the “B” movies, the niceties spoken by STARS such as Cary Grant, and  those naughty mannerisms are probably coming from his watching too many “Our Gang” comedies when he was a kid.  That favorite was later adapted to TV and became a beloved half hour for our kids after being edited and relabeled as “The Little Rascals.”

Of course we don’t know how much memory Alzheimer’s is covering when we observe parts and pieces of the past sneaking out through the tangles and plaques covering his brain.  It’s all such a puzzle with impossible pieces to fit together, but moments like this can make an interesting and funny happening.  That’s why we take comfort in learning to laugh at some of Alzheimer’s silly situations — so much better to laugh than cry.

Originally posted 2011-10-15 03:30:16.

GOD’S ASSIGNMENTS

Assignments from God are there to help us grow.

I miss Erma Bombeck.

While sorting through files recently I found a scrap of newsprint which I had clipped from our local paper.  Turning it over my thoughts raced back nearly 20 years when her column “At Wit’s End” was a twice weekly must read.  For those who never had the chance to become acquainted with Erma’s charm and wit, she was known, and probably still is, as a great American humorist.  I’m not sure if that adequately describes her, but it’s a start.  No doubt she was a devoted wife and loving mother because her mainstay was poking fun at child rearing, homemaking and living in suburbia.  Much of what she wrote began with a good laugh and often ended with a few tears, or she could reverse all of it leaving the reader chuckling the whole day.  Or you could just be filled with the profound and clever wisdom of it all.

The column I had pulled and filed away was so very poignant.  I suppose that’s why I tore it out and kept it all of these years.  Erma loved to play God and she was very good at it.  Well, maybe not play God; she was more like a reporter standing next to an assistant angel watching them at work.  She wrote about humanity’s relationship with God fairly often, which made us think, ponder, smile and feel good.

Special motherhood was the subject matter of my yellowed copy as Erma visualized God hovering over the earth deliberating which mother would get which spirit child as God and an angel made notes in a giant ledger.  The day’s work also included assigning an exceptional patron saint selected because of his or her strengths.  “Give her Gerald,” God instructed the angel, after assigning twins — probably two adorable, rambunctious, high-spirited boys — “Gerald is used to profanity.”

Progressing nicely in their labors, God passed a name to the angel and said, “Send her a handicapped child.”  Puzzled, the angel asked, “Why this one God?  She’s so happy.”

Explaining, God said it wouldn’t be proper to give a handicapped child to a mother who didn’t know laughter.  “That would be cruel.”

Continuing, God listed the qualities this woman had:  Patience – but not so much that she would drown in despair feeling sorry for herself.  She won’t have time for a pity party.  “Once the shock and resentment wears off,” assured God, “she’ll be fine.”  Then he told the angel how He had noticed her feelings of independence and self-worth that He found rare, yet so necessary in a mother.  The special-needs child required a mother who could do for the child what was needed and still be her own person.

With caution the angel informed God that this independent woman didn’t even believe in Him.

God just smiled, assuring the angel that He would take care of that.  “She’s perfect, with just enough selfishness.”

Stunned, the angel asked, “Since when is selfishness a virtue?”

God nodded to the affirmative, explaining that she would have to separate herself from the child on occasion, or she would never survive.  Then He went on listing all of the blessings that would come with this child of need.  How the mother would never take for granted the growth of her child, how just hearing that first, “Mama” would be a miracle, and how generous these children are with their love.  “I know that she would teach the child of my creations, seeing and knowing them as she had never seen them before,” confiding in the angel that this child would be blind. The angel agreed, and God concluded, “She will never be alone, for I will be with her every minute of each day.”

Curious the angel asked about the patron saint.  “A mirror will suffice,” God smiled.

All of this, of course, gave me cause to wonder about His assigning caregivers to an ever-growing number of people with Alzheimer’s.  For sure, there are countless members of the human family with special needs even if that need doesn’t appear until later in life.  Previously, I have talked about my friend, Madalyn.  Light heartedly, we remind one another that we don’t remember signing up for this job.  And yet, the assignment was/is ours just as parents with children having special needs learn to accept and live with what’s given to them.

So what are some of the hoped-for character traits which God might have seen in us?  Wow!  I wonder if He remembered that most of us – whether caring for aging parents, other relatives or our spouse – aren’t young anymore.  We used most of what were the best parts of “Us” bringing up that batch of children He sent to us early on.  So, now we’re running on leftovers?  No matter though.  Let’s see what those leftovers might be and what worn-out qualities we’ll have to reorder.

  1.   Patience:  Not a lot left, but I’m slowly acquiring more.  I no longer plead, “Give me patience and I want it right now.
  2.   Strength and energy:  The tank is pretty near empty, but I’m surprised how much I can muster up when required.  However, I have been known to sneak away and take a few naps.
  3.   Wisdom:   I didn’t have all that much when I had our first baby, but I managed to gather some by the time they were grown.  Whether it was enough I’ll never know.  My mom used to say, “It’s a shame that age comes so quickly and wisdom so slow.”  But what I did learn applied to children and young adults.  Now I must begin all over again gathering applicable wisdom for an adult with special needs, and it’s different.  I can’t sit down and reason with Ken about his attitude and how it might have a negative effect on his future, and then remind him he should make every effort to change his thinking.  If he listened at all he would probably say something like, “YOU!  You don’t know anything!” Any new wisdom I might receive will have to be applied to me so I can become a better caregiver.
  4.  Sense of self and independence:  I believe I still have that.  Being my own person has always been a blessing.
  5.  Tears:  God didn’t list them in Erma’s column, but tears go along with empathy, sympathy and love.  Besides, living in a state of perpetual mourning tears are commonplace, and are necessary as part of venting.  I’m sure most women, including mothers of special-needs children have a goodly supply of tears.  Typed on the prescription bottle is, “Use tears as needed,” but they often spill out during unexpected splashes of joy, and random acts of kindness.
  6.  Selfishness:  Yes.  I have my share of selfishness too.  And God’s reasoning is so good.   It is prudent to have some kind of life away from our needy charges no matter what our age – without any guilt.  We do have to take care of “us,” or we can’t take care of them.  Just as the instructions on the plane tell us: “Place the oxygen mask on you first, then the child.”  “ME FIRST” is a must-have attitude.  That advice belongs to all mothers and caregivers alike, but never “Me first and only me.”
  7.  Vanity:  That wasn’t listed either.  I would say to the angel that in this case, like selfishness, it is a virtue, and one of dire importance.  Not a narcissistic kind of vanity; I’m referring to humble vanity.  (Now, isn’t that an oxymoron?)  Nevertheless, when we look our best, we feel and do our best – at least we do better while striving for best.  Motto of the day: comb hair, brush teeth, touch of makeup and put on a clean shirt.  Get dressed every day and no sloppin’ around the house in a bathrobe.
  8.  Laughter:  I believe a good hardy laugh shakes down the woes leaving room for joy and other good feelings.  I have always tried to be best friends with laughter.  If it has slipped away, renew the relationship. Find where it’s hiding and bring it into the living room so it becomes part of the family.
  9.  Acceptance:  It may take a while, but no one can fight “what is.”  This is where life has taken me, and many of you, and there is no escape for the dedicated.  Might as well sally forth into the tomorrows and make them as good as possible.  Besides, nobody knows how many tomorrows are left.
  10.  Call home often:  God was certain we could do the job, and whenever we need to talk, He’s there.  He said so in Erma’s column: that he would be there every minute of every day.  Not only because he loves us, but He so appreciates us for doing some of his work, and caregiving is God’s work — especially when it’s done with a glad heart.

Oh!  And by the way, I believe Patron Saint Gerald has been reassigned to me for those times when my patience tank is running on empty.

Originally posted 2011-09-24 19:18:26.

UNAVAILABLE: ALMOST LIKE A VACATION

hammock

Being unavailable to my caregiving responsibilities was like going on vacation.

I recently took some time off to have my gall bladder removed.  Golly, but body-part removal sounds ghoulish — even neglectful or careless although I know that isn’t true – things just happen. Furthermore, Dr. Frankenstein is not my surgeon. Replacements and repairs sound all right – like putting a new engine in a car – a pacemaker, new hip or knee replacement.  That sounds like good maintenance.  It’s the removal word that sounds menacing, discarding – like we’re throw-a-ways — like taking the car to a junk yard.

However, that comparative idiosyncrasy exists only in my imagination.  Actually, I had a good-size stone which produced some severe stabs of pain and some degree of discomfort, but never a continuing 10-on-the-chart pain, which was a good thing.  Nevertheless, a lack of urgency placed the procedure into an elective surgery category.  My surgeon’s advice:  it should be removed.  So I was faced with having a body part taken out – scary.  I mourn a tooth extraction, now I was considering the removal of this important and useful, but expendable storage/distribution organ which has been with me all of my life: a part of me.  It was time to share this news with family and allow for other opinions, and it’s times like this that I feel so alone and really miss Ken.

Years ago having one’s gall bladder removed was a major, lengthy hospital stay, long-recovery operation.  Today, using laparoscopic surgery, it’s an in-and-out ambulatory procedure requiring three small, intentionally placed slits in the upper abdomen and an interesting reconfiguration of the navel. Yet, even with family input, I debated whether I should wait for a No. 10 on the pain chart.  I conferred once again with my p.c. doctor (who believed it was warranted) my dermatologist (with whom I had a chance-same-week appointment) — she advised that I should do it — and finally I shared my hesitations with another doctor during my pre-op appointment.

I knew that it wasn’t going to get better even though many people carry a gall bladder filled with stones and never feel even a twinge. The most compelling reason for me to have it done before I was driven to consent by a siege of No. 10 pain was because I am the prime caregiver for Ken.  Everyone in the family would best be served, including me, if it wasn’t an emergency situation.  As the pre-op doctor and I were talking about my husband having Alzheimer’s one of the nurses overheard and after the doctor left, she suggested that at some time I really should get away for a rest – whether I did the surgery or not – she felt I was ready for a respite: a pause in my care-giving duties.  I assured her I was all right and that I wouldn’t consider traveling more than an hour away in case of him having an emergency.  “Then,” she said, “You should take some time off and be unavailable.”  Continuing, Nurse Nancy explained that she had cared for her mother who was a victim of AD, and her sister came periodically from out of town to relieve her.  “I never went anywhere either,” she said, “but when my sister was with my mom I was ‘unavailable.’  You’ll be surprised how refreshed you will feel.”

Following my pre-op appointment I was mentally ready for the procedure and made arrangements with our daughter, Debbie, to come from Utah to be at home with me and Ken for three weeks.  Although most of our grown children are self-employed, she is the only one who has the flexibility to bring her work with her. 

She arrived as scheduled, helped Ben while our daughter-in-law, Sabina, accompanied me to the hospital and brought me back home to my waiting bed for some R & R.  Debbie continued helping Ben and pampered me when necessary with other family members nearby as backup.  Furthermore, I happily found myself totally unavailable for anything outside of my own personal needs. 

I cannot express what an incredible sense of freedom I felt.  It isn’t that helping the caregivers with Ken is so difficult because it isn’t.  It’s just the responsibility of caregiving is relentless when done every day 365 days of the year.  Scheduling is unbroken and it’s the unbroken part that becomes not only relentless but stressful which usually goes unnoticed because it’s a silent, consistent buildup of tension.  The wise nurse knew exactly what she was talking about.

Up and about I was back checking my computer the next day.  Opening my email I found that my personal address book had been hacked and the hackers had sent out an ad under my name for weight loss.  Several of my friends sent it back with questions.  Emailing everyone on my list I stated that I had not mailed the ad, and then changed my password.  Hopefully, that will eliminate the problem of further intrusion – till next time.  Coincidentally, the timing couldn’t have been more on target lining up perfectly with my surgery, and I did see a little humor in the entire scenario.  The text read that the recipients should use the product because, as stated in my bogus testimonial, I had lost 29.2 pounds in the last 30 days.  I thought about the troublesome stone which was now gone, “It was like your father’s,” the doctor had explained, “about the size of a small egg.”  Remembering my erroneously reported weight loss, and although shedding a few pounds in never far from my personal goals, I’m sure glad my small egg didn’t weight in at the better part of 30 pounds.

You ask if I am still enjoying my recuperation.  Without a doubt, I am.  However, because I feel so good I must remind myself periodically that I am still recuperating.  Following doctor’s orders I’m not lifting heavy boxes or mowing the lawn.  Debbie and the caregivers haven’t missed a beat in Ken’s care.  Perhaps he too is appreciating a change, and I am comforted that he is well and as happy as a victim of AD can be.  From the comforts of my own home I can watch from afar yet spend time with him as a visitor, all the while making myself very unavailable for any of his needs.  If it weren’t for a few tender spots in my torso I could lose myself in a book and even pretend I was on vacation.

Photo courtsey of:  http://www.flickr.com/photos/chumpolo/511227025/

Originally posted 2011-09-11 00:02:18.

MAMA, THE BEAST, AND ME

treadle sewing machine

Alzheimer's took away even the memory of the sound of a sewing machine for a professional seamstress.

I could barely hear it as my mother asked, “What’s that humming sound?” Pointing in the direction of the bedrooms she continued, “It’s coming from over there.” Having just arrived, I paused, and with neither of us saying a word I too wondered what we were hearing.  Following the hum it led us into a bedroom where there were two large oak dressers, a few chairs and an industrial sewing machine from her years of owning a custom-made-fashions shop with my sister, Janet, in San Francisco.

Mama was fast approaching the middle stage of Alzheimer’s with lots of cognitive loss, but she periodically remembered bits and pieces from her past when something familiar triggered her memory.  Apparently, she had passed by the bedroom earlier that morning, and recognized her sewing machine.  Or perhaps it was the small rip in her slacks which needed to be mended that brought her to what had been so familiar. Sitting down in front of her old “friend,” her hand could have automatically reached over and flipped the switch turning on the motor of her outdated, but still efficient, sewing machine.  With the fickleness of Alzheimer’s her reasoning probably vanished no doubt leaving her to wonder why she was sitting there. Puzzled, she got up and walked away – leaving the motor running.

Conjecture for sure, but AD is often guesswork.  I turned the motor off and pulled the plug from the wall knowing that if she had gone further in an effort to mend her slacks, the speed and power of the needle could have seriously damaged her fingers.  With the humming noise stopped my mother returned to be with my father while I lingered.  Nostalgia swept over me as I rubbed my hand over the solid wood “apron” which housed the “beast” as Janet called the powerful machine.  My thoughts were of Mama and the woman she was other than a parent with three grown daughters – the woman she was before AD had ravaged portions of her brain.

My mother, Irene, had been blessed with endless talents: articulate, funny, inventive, tall and beautiful to look upon, but slim and delicate in frame. She was, however, strong in every practical sense.  Blessed with an artistic flair that touched just about every aspect in the field of fine arts.  Phenomenal designs or a painting quickly took shape as her pencil, charcoal stick or pastels skated across a blank sheet of paper.  These natural talents were gifts with which she had been born, and developing them to their utmost had been one of her goals.

While artistic design was her passion sewing came naturally from a long line of women progenitors; each woman teaching her girls the skills and practicality of stitchery in all of its forms. During the Great Depression, my mother supplemented my father’s sporadic and meager income by sewing custom-made clothes for women of means whose lives had escaped the economic disaster.

Her skills plus a designer’s genius and fitting expertise caused her customer’s to exclaim, “Irene is a wonder.” My sisters and I agreed, and we all looked forward to our 10th birthday when she would begin teaching us dress making and tailoring on her old treadle Singer sewing machine.  My two older sisters had already reached that pinnacle.

Being the youngest, I could hardly wait to be ten.  With small pieces of fabric from Mama’s scrap box I envisioned what dresses I could make for my dolls once I learned to sew.  Every so often when my mother was out of sight I sat in front of the sewing machine with my pieces of cloth and tried stitching them together.  Watching Mama many times as she worked, I knew the steps about putting the pressure foot in place, giving the wheel a pull and coaxing the treadle to move with my feet.  I could never do it right – the treadle thing –back and forth, back and forth so the pulley turned the wheel in the right direction.  I failed each time leaving the threads from the needle and bobbin tangled or broken.  Quietly, I would slip away never telling anyone of my attempt, but I’m sure Mama knew I was the culprit who kept messing up the threads.  I wondered if I would ever master the foot rhythm.

Months before my 10th birthday I came home from school to find Mama removing the contents from the sewing machine’s drawers.  I sensed it was more than just cleaning and asked what she was doing.  “We’re getting a new sewing machine,” she happily informed me, “a new electric Singer.”  With instant tears spilling from my eyes I plopped down in a nearby chair. Feeling betrayed, I could not share in her joy, and tears came because she was trading in the old treadle for some new-fangled electric machine that disappeared into a desk.  I just knew I would never be allowed to touch – much less sew on it until …. I couldn’t even imagine when.  My dolls would be forever naked.  “Now I’ll never learn how to sew,” I sniveled.

Placing the drawer back into its slot, Mama rose from her chair and knelt down beside me.  “Now, what makes you believe that?” she asked.  “The new sewing machine is too good for me to use.   I might break it,” I whimpered.  “How would you like to be the very first one to sew something on the new ‘Singer?’” Mama offered.  My tears turned off like an empty cloud.  “Could I – really?” I questioned, “even if I’m only nine,” not sure of what I was hearing.  “You will be the first,” she promised – and I was.

With my hand still resting on the “beast” I remembered my favorite blue plaid pleated skirt and the coordinated royal blue corduroy jacket from high school, and my beautiful graduation suit of light-weight pale pink wool featuring a peplumed jacket trimmed with black cording on the collar, cuffs and the small decorative strip of belting attached at the waist back. It was exquisite and when I wore it I felt stunning. A few years later she designed and sewed my wedding dress of grand cotton lace with long sleeves ending at the wrists with a traditional calla-lily point. 

My mother had taught me to sew nearly as skillfully as she, but it took me years of practice to even come close to her excellence. For special garments there was nothing like Irene’s original creations.

Standing there musing I wondered when she had stopped being that fabulous, creative person I had known.  What had been her last sewing project and how long since she had painted a meadow filled with blossoming apple trees or the ocean’s waves pounding the shore?  When was it that Alzheimer’s had stilled her artistic fingers, devouring the brain cells that guided her many talents?  What subtle changes about his wife had my father noticed that brought about his decision to leave their comfortable life in Sonoma County, California.

My parents had moved from their wonderful retirement home in the country outside of Sebastopol, California in the late 1980s when Dad admitted they could no longer be so far from family because of Mama’s declining mental health.  Finding a house just a few short blocks from Ken and I lived was the perfect solution for their needs.  My father had always said, “I don’t want to live with you, just near you in our own home.”  With help a few minutes away he was able to care for most of her needs, or call us in an emergency.  Nevertheless, I didn’t wait for a call. Instead I stopped by at least once a day, knowing how lonely he was, and to make sure all was well.  Important too – I doubt my father would have heard the beast’s motor running with his poor hearing.

I was glad to be there for them, and within the next few years it would be more of the little things, the gradual changes made by Alzheimer’s insatiable appetite that Dad and I would observe in caring for my mother. Irene would regress from the woman we fondly remembered, spinning down through the years of her life eventually becoming a sweet-natured child who spent afternoons with her mother who — she insisted — was me.

Originally posted 2011-05-14 23:57:11.

THE ROLLER COASTERS

rollercoaster

The ups and downs of Alzheimer’s can be worse than any roller coaster ride.

I dislike roller coasters. From the first time I visited Play Land At The Beach, which was   a very long time ago, I was wary of the ride – intrigued – but wary.  The ancient granddaddy of fun loomed over the rest of the concessions like the skeletal mid-section of a mythical dragon; a grayish monstrosity of what appeared to be old pieces of weathering wood which I believed to be untrustworthy even when I was young.

The amusement park was located right across from the Pacific Ocean at the end of the Great Highway and just a short walk south from San Francisco’s famous Cliff House.  Even as a pre-teen I could hear the rickety structure clickety-clack and rattle as each line of speeding cars roared up and down the  mountains of lumber and track finally screeching to a jolting halt at the end of the line. Frightening, yet I was fascinated.  “Oh come on you big baby,” badgered one of my older sisters.  “You’ll love it.”  Scary though it was, I wanted to love it like everyone else.

The three of us climbed into the seat, the attendant dropped the safety bar as my sisters warned, “Now hang on and never let go or you might fall out.”  Fear griped me and we were off. Climbing up was all right, but the descent was horrific. I hated every blood-chilling moment.  Furthermore, with each threat of death I repented of all my sins – however many sins a pre-teen could accumulate – I was penitent.

Time and time again, whenever I visited Play Land at the beach with my sisters and friends I was coaxed back onto the roller coaster with the promise from someone, “Oh, you’ll like it this time.  You just have to get used to it.”  Fear-stricken, I repented once again promising to be ever so good.   Still, I hated my skinny little body getting bruised, slammed and thrown about with each jerking turn.  With my eyes squeezed shut I could have been riding on the back of a mystical dragon with its tail twisting back and forth threatening to toss me high and away into the great unknown.  Minutes later and peeking out from the safety of my closed eyes we were facing the last invisible decline over what seemed to be the edge of the world. Terror froze deep in my throat while other passengers screamed and shouted with glee.  Suddenly the ride stopped, the dragon vanished and we girls stepped out of our cars into the laughter and happy shouts of Play Land At The Beach.  I was safe.

As an adult and the mother of five grown children not much has changed regarding roller coasters except they’re bigger, better and faster as they race over the modern, steel-supported network of tracks.  Ken loved them, and always did.  He was probably one of those smart-alecky kids who laughed, yelled and held his hands straight up in the air on every downward dive.

At Great America, where we went for a family day that roller coaster not only did the up-and-down thing, the tube-like car also spun in circles.  “You’ll like this one,” Ken had insisted.  “Come with me.  It’ll be fun.”  It wasn’t.  I repented again — and then found the ladies room where I lost my lunch.

Feeling sorry for me we had a 7-UP to settle my still-pitching stomach and found my kind of ride: those cute little boats that carry you through a maze of tracks onto an intermediate slope sending the passenger-filled boat into a boxed-in lake where, for thrills, you get a good splashing of water.

With roller coasters, Ferris wheels, merry-go-rounds, and even little boats now a part of our past, Alzheimer’s has brought us a new kind of roller coaster.  This one too is a dragon; its tail flipping our energy and emotions in every which direction. I don’t like this one either, and if Ken had his wits about him, he would be on my side.  Nevertheless, we’re both along for the ride whether we like it or not.  Unfortunately, there is no jolting stop where either one of us can get off – save it be death – or somehow a miraculous cure.  So we endure.

There are times when I see him fearful, as I was on that very first ride.  I know he is plunging into a down mood. “No!” he shouts.  “I’m not going.”  Going could be anywhere he doesn’t believe he wants to go, or it could be just his way of being independent, or believing he must make a decision and not being certain he automatically says, “No.”  Nevertheless, he means no — no to showers, to eating, to bed, for a ride, for a walk or to visit the doctor.  We might as well take him into the House of Horrors because he has that same expression of unknown fear in his eyes.

Later, when his mood changes to up and he sees me not only as someone he recognizes, but as his wife who he invites to sit beside him on the sofa.  I do and he puts his arm around my shoulders saying, “I love you.”  I sit closer and rest my head against his chest — snuggling in — and for a while it feels like old times: reassuring and good.  His face is relaxed and he smiles when he looks at me.  For a while he is calm and quiet.  We sit for as long as he’s willing — for as long as the up mood lasts.

His face begins to puzzle and I move away to prepare a simple dinner hoping to have it finished before he becomes hostile.  Cleaning his plate with a crust of bread, his eyes begin shooting daggers at me.  “You don’t belong here,” he hisses, “get out of my house.”  I pretend to be accommodating and when he gets up to make certain I’m leaving I close and lock the kitchen door behind him.  It’s good for Ken – and me – to take a break.

Quietly I watch him from around corners, and through a slit as I barely open the door.  He seems more peaceful sitting in a living room chair all by himself.  His mood is changing once again.

“It’s cold in here,” I remind him in a little while knowing the ride is taking him up.  “Do you want to go where it’s warmer?”  He ponders my question and then makes an excuse about why he can’t abandon his post or adjourn his imagined meeting.  I leave and try again minutes later – hoping he has forgotten my earlier attempt to get him into bed.

“Okay,” he finally agrees, his eyes groggy, and he follows me into the bedroom.  The covers turned back, he sits on the edge of the bed.   “You can put your feet up,” I suggest.  “With my shoes on?” he asks.  “Whatever you want,” I reply.  When he understands he still likes to make his own decisions, and then he kicks off the moccasins pulling his feet up onto the bed.

I place a blanket over him in much the same way I covered his children all those many years ago. “There,” I ask, “doesn’t that feel gooood?  Sooo nice and warm!  He is smiling, his eyes inviting.  “Do I get a kiss?” he asks.  “Of course,” I answer leaning over kissing him softly, gently; one more time as he whispers, “Goodnight.  I love you.”   “I love you too,” I reply, turning out the light.

The switch also closes the lights on the day’s roller coaster.  We’ve traveled through the gambit, which included Ken spitting in my face during the morning clean-up time with Ben, gouging my arm even though his fingernails are closely clipped, to the lovingness of a goodnight kiss.  Today is done, and I sigh with relief.  Some days the ride is more stressful than others, but no matter, we are forced to continue.  I hate the Alzheimer’s roller coaster more than all of the other electronic ones combined.

A few years ago, when his illness was milder, my sister asked, “How can you stand this day after day?”   I answered, “You just learn to live in the moment.  Don’t lament about losing the good times, or even begrudge the bad.  What we know for sure is that no matter where we are in any moment of our life it will change,” reminding her of our youthful pleasures and how happy those days could be, but they didn’t last and when they were gone we felt so wretched.  “Remember what Mama used to say to us during those down times — when we believed that life would always be the pits – she would remind us, ‘And this too shall pass away.’”

We all know that we can beat our chests and cry into the wilderness about how unfair life is, but it doesn’t change anything.  We can ask, “Why me?” but there is no answer to that question.  We can be miserable and sad — or accepting – and in the accepting we can enjoy the small fragments of happiness which still come into our lives and are part of the ride.  There’s more than one way to ride the mystical dragon.

 

Originally posted 2011-01-23 04:46:07.

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