mother

HANDICAPPED MORPHED INTO SPECIAL NEEDS

wheelchair

If we live long enough we may all end up with special needs.

I noticed in Erma Bombecks’s column, which I referred to in my last blog, that she used the word handicapped in reference to children with special needs.  How easily “special needs” rolls off the tongue in today’s world.  It was one of those descriptions that came through evolution during the pre-politically correct era.  Words have made it through transition since words began, and often that’s a good thing, but the emphasis on being politically correct I find irritating, if not a paralysis of speech. I’m one for calling a spade a spade – for example: when clothes come back from camp they are covered with dirt – dirty, dirty, dirty!  They are not soiled, they are dirty – even filthy.  In other areas I strive always to be kind, keeping my words sweet in case I have to eat them, but I also believe in the 1st Amendment.  However, being p.c. is not the issue.

The word handicapped is a good word to replace when its reference is health.  Any story you may have heard about its origin beginning with beggars in London holding their cap in hand as they plead for a handout is not true – a myth – an urban legend.  Handicap has been a word used in sports dating back to Scotland and golf, and you hear it often in horse racing. Why, around 1913, someone decided to use it for children who were born less than perfect no one knows.  Handicapped was expanded to include adults and people with mental disorders around 1950. That’s another “why” question when the word was, and is, doing so well in sports.  Disabled became its replacement, and many thought less-abled was even better, and whether it’s p.c. or not, special needs seems to be the most descriptive – especially for children. I like disabled for adults rather than less abled.  The less part sounds so contrived and leaves questions hanging.

Ken and I have seven disabled great-nieces and great-nephews, all belonging to our niece, Carla, and her husband, Chris.  Following the birth of their first child, who barely made it through a very premature delivery, the doctors warned the couple that any future pregnancies would, no doubt result in more preemies.  Furthermore they were advised that this baby would have considerable cognitive loss, wouldn’t be able to see, possibly not walk, and then mentioned there may be more disabilities they didn’t even know about – if she lived at all.  Nothing mattered as the couple waited the endless weeks while the fragile life ebbed and flowed, and gradually took hold.  Strong in their faith they knew they could handle anything.  “Just let her live,” was their fervent prayer.

Amazing could be the word, but no doubt it was more faith, humility and God’s plan that brought the tiny girl into near normalcy with her whole life spread out like a blossom-covered meadow. Yes, Aurora was a miracle.  “However,” explained Carla “we now know God was preparing us for something else.  When we decided to adopt, rather than risking more early deliveries, because of the unknown factors surrounding Aurora’s birth, we had already come to terms and accepted the idea of a child with cognitive disorders, cp, seizures and the like.  When the case worker asked if we had ever thought about a child with one of these – we just cracked up. The truth is God knew our children before they were even formed, and He knew Chris and I would not be willing to step forward — too daunting.  So in his incredible wisdom, he used Aurora to prepare us.  We never knew what a blessing her birth would bestow on each of us.”   They wanted a big family so the couple began adopting children with special needs from around the world; their disabilities ranging from mild to severe – which is all in the eyes of the beholder.

As an extraordinary teacher Carla works in a school district with a wide range of students and lifestyles.  Many of the parents have more important interests  than their children – leaving their youngsters with special needs of a different kind:  some are neglected – spiritually, physically and emotionally.  Some suffer from various kinds of abuse and many are just hungry for love and a sense of belonging; all of which fits beautifully into Carla’s loving and giving nature.  Her experience—vast.

Both she and Chris have given their children the best of all gifts:  a loving family, which is number one.  Additionally, the two have never bothered making an issue of any disabilities their children possess.  “Special Needs” doesn’t necessarily mean special schooling or classes, but it could include two prosthetic legs, a hook for a hand and muscles that don’t always obey.  Yet, it’s taken by the family as almost incidental.

Their beautiful little brown-skinned girl with the dark hair and near-black eyes was found living on the streets of Puna, India and did need special classes to teach her limited mind.  She remains the beautiful brown-skinned girl with dark hair and near-black eyes.  Even experts in special education were limited in what they could teach this child from the streets.  She has, however, inched along in her progress to be the best she is able to be.  With no background and no family history, much of her remains a mystery.  Nevertheless, she has grown into a happy, functioning (for where she is) adult.

All of the children are grown and constantly buzz in and out of the Oregon family home. Their lives are very normal and they are either continuing in higher education or working at a job — or jobs.  These young adults have a different understanding of disabilities, expressed by their parents right from the “get-go,” “Our theory has been that some of us are disabled now, and the rest of us are just temporarily able.”

I think of the irony played on humanity by the fates and find this thought process very true.  I look at my husband, with his AD, and realize he is disabled: both mentally and because of his cognitive decline he is becoming physically disabled.  Ken’s parents were disabled in their old age as was my own mother.  My dad, with no mental disability still needed help physically.  We moved him from place to place in a wheel chair, and because of his worn-out knees, he relied on a walker to get him safely around the house.   I suppose that made him somewhat disabled.  Perhaps the absolute mark of disability is having a placard which allows parking in a “Disabled Parking Only” area, and even that isn’t necessarily accurate.

It would almost seem that in the cycle of life we begin by being totally dependent on others for our well-being, and at the end of life we again are dependent on others.  Following the death of both his parents, Ken was determined that their fate would not be his fate.  Consequently, he began to take extra care of his body, making sure of a goodly amount of exercise: running and gym workouts, and keeping himself in general good health.  Noticing Ken’s unusual strength and his still well-developed body, his caregiver Crizaldo has said, “Mr. Ken defies age.”  In that respect, Ken did achieve his goal.  Physically, he would still be a very able-bodied man if it were not for Alzheimer’s.

I do believe there is a message here.  Many aging adults, and I’m the first to say “but not all,” are disabled.  Disability does not always have to be part of growing old although it is the road often traveled.  For those striving to remain able bodied, we all know the best way to keep on moving is to keep on moving.  I sometimes wonder if Ken, when we are helping him out of bed and he becomes as rigid as a board (which is totally self-imposed) isn’t doing what comes so naturally for him: stretching — exercising.  In this case he’s doing isometrics, and he is making his caregiver and me his opposing force.  After a few pulls using us as resistance he relaxes, cooperates and gets up.  How’s that regimen for keeping in shape?

Originally posted 2011-10-01 03:14:53.

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.

AND THEN THERE WERE NONE

I visited with my friend Eva this afternoon. I have mentioned Eva and her very talented musical family, originating from Hawaii, who

finances

Running out of money adds to the stress of aging and Alzheimer’s caregivers.

entertained many of us living here on the Mainland. Whenever we craved the swaying of palm trees, balmy beaches and the setting sun over the Pacific we asked them where they would be holding their next luau. Eva’s husband, Ed, and his band played the very best dancin’ music in town. Not only did they make an evening romantic in its artificial setting, the group provided authentic food, young and beautiful grass-skirted women doing a variety of Polynesian dances, and a traditional fire dance, accomplished by their oldest son as part of the grand finale. Eva taught her girls everything she knew, and when the entire group danced you would swear their hips were on springs. Everything you dreamed about being in the Islands was there during those wonderful evenings of long ago.

Eva now has Alzheimer’s, as did her husband. She is also 90 years old. It seemed that no sooner had he passed on that Eva began showing the same signs of confusion and forgetting. Yet, with the help of her youngest son Matthew, Eva, dressed in a fitted muumuu of her own design, a flower tucked behind an ear, continued to volunteer her musical talents, singing and strumming her ukulele at Senior facilities throughout the East Bay of San Francisco. Eventually, as the disease took hold, she sang her last song and her ukulele lay silent in its case.

She has been absolutely content living in her own home with Matthew, whose mental capacity had prevented him from reaching responsible adulthood. The rest of the family agreed they would be able to remain there by doing a “Reverse Mortgage.” When she was 82, the family helped her work out the details with the bank and a long-term professional caregiver, which included an iron-clad contract for her care until she was 90. The family was certain the 8-year contract would suffice, knowing that Eva was also plagued with diabetes.

Every year Eva’s children came from far and wide to help celebrate her birthday with a grand party, music supplied by friends, and tables filled with Island food. Hearing her friends sing and play the familiar music seemed to bring her confused mind back to what she loved most: music, singing, entertaining and her beloved family. Eva sang bits and pieces of songs she had known and the sounds floated through the air as many joined in to help her recapture the past. She even kicked off her shoes and danced a little. Unfortunately, we all knew that it would be forgotten the next day.

This summer Eva turned 90, and we helped her celebrate the end of an era with family and a few scattered very old friends. It also brought an end to the contract, her caregiver and her home. The house belonged to the bank. As the old book title states, “And Then There Were None.” In this case it was money. The estate was broke. The reversed mortgage had paid its last payment. So now what? When the elderly infirmed reach a point when there is no money left, and the family, scattered all over the U. S., is unable to furnish additional funds, or care for a loved one what happens?

I visited Eva today in her new home which her daughter had found several months ago, explaining the situation to the admissions director and arranging an entry date. I was pleased to see it roomy, comfortable and clean. I also appreciated the important part: the air smelled fresh. Apparently, when family funding runs out for an older patient, the state picks up the tab. It’s no longer like the 1800s when Charles Dickens wrote his sagas about people without the ability to pay being turned out to live on the streets – or were tossed into a debtor’s prison. I couldn’t imagine my frail, gray-haired friend who had given so much in time and talent to the community not to be cared for in an appropriate way. She also needs full nursing care as complications from diabetes made the amputation of one leg necessary.

Arriving at the location I rambled down two long halls before I peeked into Room 36B. Finding the bed empty I couldn’t imagine where she might be. In my return journey down the hall in search of Eva I spied her sitting in a wheel chair with a few other people – also in wheel chairs. They didn’t seem to be chatting, but at least they were company for one another. She smiled up at me, but then she smiled at everyone. I gave her a hug, asking the duty nurse if I could take her for a ride, she nodded and I wheeled Eva into a nearby room where I pulled up a chair so we could talk. It was mostly idle conversation where she could fill in the blanks. Like Ken, deep-thought communication was not likely. By filling in the blanks, she gave no wrong answers. I quietly sang some of the church songs she had taught the children many years ago. Eva managed to join me with some of the words. Later, she asked, “Did your husband come with you?” I doubt she remembered who I was much less Ken, but I took it for what it was worth and said that he hadn’t been feeling well so he stayed home. She sighed, “Oh. That’s too bad.”

Matthew comes to see her daily; the rest of her children and grandchildren come on occasion. Separated by hundreds of miles keeping in touch in a physical way is difficult. Additionally, most of her friends are gone – separated by a spirit world. Again we could say, “And Then There Were None.” Life has a way of making such gradual changes that we hardly notice until we look around and see how alone life can become. Sadly, that applies not only to money, but to family and friends as well.

I wheeled Eva back to where I had found her, reminding the duty nurse that she was back. “It’s good seeing you looking so well,” I told her, giving her another hug and a quick kiss on her cheek, “I’ll come again soon.” She smiled and said, “Thank you.”

photo courtesy of http://www.seniorliving.org/

Originally posted 2011-09-03 20:09:03.

DECISIONS, DECISIONS

Savings passbook

My mom even saved our passbooks from our children's savings plan in grade school.

Going through some of Ken’s and my acquisitions I couldn’t help but be reminded of moving my mom and dad from their lovely country home in Sonoma County to the Bay Area.  It was my job to sort through and pack their house filled with years of accumulations.  My father was a collector of tools, but Mama saved everything.  When they arrived in San Francisco during the Great Depression, someone told her she should never throw away a receipt.  She didn’t.  I suppose she was allowed to toss grocery receipts, but for bills she saved every single paper marked or stamped “PAID IN FULL.”

With her Alzheimer’s already noticeable and my dad’s decision for them to move closer to me and Ken, I spent a week at their home packing, sorting and tossing.  My best advice to anyone living anywhere is to keep your files up-to-date and clear of any unnecessary paperwork.  It’s also the best gift you can leave to your children who will be responsible for the disposition of everything which has been left behind after you’re gone.  Mama literally had every receipt given  to her or my dad.  Drawers and boxes of them were filed in an orderly manner going as far back as the mid-1930s.  In addition, she had every bankbook ever delivered to any of us.

As I recall from my youth, we had bank day on Friday at our school.  To participate, we were issued our very own passbook, blue in color in its own pocket envelope. A little bigger than a cell phone the book was given to each student with his/her name placed on the first inside page with the name of one parent.  Into this account we could make a deposit of as little as a few cents every week.  A bank official was at the school to make the entry into the book which was signed and dated in neat, very legible handwriting.  This weekly ritual taught my sisters and me to be thrifty even during those economically stressful years.  Eventually, the total grew to a few dollars, but never more than $4. or $5. and, perhaps, a few odd cents before we advanced to junior high school. I suppose by then the banks had decided the practice was more bother than worth, and the accounts were soon forgotten by most students.

In my mother’s filing system, I found our passbooks stamped closed, the few dollar having been withdrawn by Mom – it was actually her money.  In addition to our canceled books were several closed savings accounts belonging to my parents as they became savvy about more advantageous ways of investing. The books, in addition to other obsolete transactions were, no doubt, saved because Mom considered them to be important records.  Accepting that she believed they were important, but not totally certain of her reasoning left a fragment of doubt causing me to question the obvious.  Consequently, I called each bank for closure verification as I cleaned and tossed.  Countless hours could have been saved if Mom had been “brave” enough to dispose of what was closed, canceled or no longer current.

One of Irene's saved pictures

She was also an artist in her own right, and I found so many pieces of early work.  Okay pieces – showing the structure of learning — not wonderful — but painted by my mother which tainted them with sentiment.  At first I thought I would save them, and then asked myself, “Why?”  They weren’t good enough to hang, so who would want them?  I decided it best not to ask, just do it: discard.   If her mind had been clear I would never have been so presumptuous, but she was in the first stages of a terminal mental illness. It was a fact, yet that same nagging thought kept running through my mind about the possibility of her waking up some morning and the AD would be gone.  I still haven’t figured out if that’s denial or hope.  Whatever it is, it’s somewhat of a nuisance – not only a nuisance – it can paralyze decision making.

So I made the decisions: item after item, file after file, sketch after sketch, painting after painting – I alone decided their fate. Keep it in case she remembers, or discard but don’t tell her?  It sounds so mean – so intrusive — but I knew Alzheimer’s already from caring for Ken’s parents.  Furthermore, no new strides had been made with the disease.  Mama would never even look for her old work. Chances were she may not have remembered even doing the selections I fretted over, much less the receipts, files or ancient bankbooks. Besides, I reassured myself, it was easier to discard, destroy, recycle, or donate while she was still alive.  I could get rid of what was useless, would never be missed or needed which would ultimately relieve me from some of the packing, moving, unpacking and sorting again once they were settled in their new home.  Respectfully, I did what I felt I had to do.

And then, eventually, one day when both Mom and Dad were gone and the remaining chore was to dismantle their home much of the difficult decision making had already been done.  Meanwhile, without so much “stuff” to manage and create clutter I could do what was most important: spend more time with them.  Now I am striving to apply that same philosophy as I continue to downsize the home where Ken and I have lived, loved and shared for more than a half century.  Wish me luck.

Originally posted 2011-08-20 19:06:44.

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.

“AD” ROAD SIGNS FOR WOMEN — ARE THEY DIFFERENT?

Curves ahead road sing

Like dangerous curves on a mountain road, no one knows what to expect from Alzheimers.

Do women change dramatically once Alzheimer’s begins its attack on their brain?  Rose and my mother, Irene, remained gentle people, but I don’t believe that’s always the case.  I was told of one woman suffering with AD who seemed to have the strength of a lion.  When she was provoked to anger, the adrenaline really began to pump.  Reaching over the rail of her hospital bed, the distraught victim picked up a nearby chair and hit her attending husband with it.  Quoting my friend Madalyn once again, “They’re all different.”  It would have been interesting to know if that “hearsay” patient was a violent person before AD.  In any event the family and I were grateful that the two mothers in our lives were not combative.  Perhaps I should say there was no occasion to thoroughly test their defenses, and that’s always a good thing.

Both women were cognizant of gratitude, and always managed to say, “Thank you,” for favors and services received.  There was a sweetness which remained as part of their personalities, along with other facets of who they had been before AD.  Their memory was stolen, lost in the shadows making us strangers to them, more than them becoming strangers to us.   The changes taking place so slowly it’s often difficult to recall exactly when they began.

With Rose it was her forgetting that we all noticed first.  Ken would call to ask if she and Dad were going to be home as we were planning to visit.  “Oh, yes,” she answered, “we’ll be home all afternoon. Please come.” When we arrived they were gone.  Rather than drive the 30 miles return trip we waited believing they were probably at the store.  Sure enough, they soon returned with Rose asking why we hadn’t called to let them know we were coming.  We made up some transparent excuse and enjoyed our visit.  She did, however, remember telephone numbers.

“Mom fills my answering machine with one call after another,” Loretta complained as we talked about Rose’s inability to remember her daughter was at work during the day.  When the machine no longer picked up, Rose would call me.  We talked for a while, her asking the same questions with me giving the same answers, and then said goodbye.  Ten minutes later the phone would ring again and, sure enough, it was Rose.  Over and over again, the routine continued until, for my own sanity, I had to let the calls go to the answering machine.  Thirty five years ago, the entire AD experience was new to all of us.  We were all learning, but still in a state of wonder as how to manage and get some constructive advice.

Our daughter, Debbie, came with me one day to visit her grandmother.  Rose was looking at an old photograph album.  With Debbie sitting by her side, Rose looked at the pictures naming her brothers, sisters and friends from the distant past.  Over and over she told the same stories turning the pages back into a circular motion with no beginning and no end.  It was only when Debbie laid the book flat allowing the album to close that brought the book and the stories to a natural end.  Rose read the newspaper the same way —  always stopping and reading aloud an article of interest  (the same ones each time she rotated the paper) over and over until she grew tired and something else sparked her curiosity .  Little by little we began to put the mystery pieces together.

Following Nick’s passing we realized Rose was not only forgetful, she was becoming more and more confused.  The TV dinners we bought had worked for the two of them in the past, but alone she found the boxed meals of no value.   Peeking inside, Rose sampled the contents; the food was tasteless and cold.  She rejected the entire package except for the applesauce, which she ate, leaving the rest of the soggy dinner in the refrigerator, and then placing another frozen meal on the counter to thaw.  Even with my constant visits and Loretta living close by, we realized Rose could no longer live alone.

With my mother, Irene, it was her inability to listen that was one of the first signs she was changing.  She had been a wonderful conversationalist; not only a good talker, but a great listener as well.  Spending time with her, before AD began, was a joyful experience where we could exchange thoughts, ideas and ideals often delving into deep – sometimes controversial subjects – but our exchange was that – an exchange.  It was never an offense/defense debate, merely good conversation between two grown people with each leaving the other a little food for thought to consider until next time. I found the time spent always something to look forward to, but when AD arrived, she stopped listening.  There were no more inspiring tidbits from years of experience for me to take home and no more solid advice.  Her conversations no longer made a point, words became just words and when I spoke up she interrupted as if she were spending time with someone else – or possibly her mind was somewhere else.

Even if no one was with her she often droned on and on without end.  One evening, during dinner, she chattered while the rest of the family ate — her plate nearly untouched.  Finally, my father murmured, “Irene!  Please just be quiet and eat your food.”  She took a few bites then went right back to her endless jabber expressing her rambling thoughts.

Once Alzheimer’s has become an unwelcome part of a family — coming at will – it takes up permanent residence departing only when its victim passes on to a better place.  However, watching for a return visit in other family members becomes second nature to the survivors.  So it was that my heart stopped as Ken and I stood on a grassy knoll where spring-like water gurgled from the ground, and where we had been several times before.  “I have never been here in my entire life,” he claimed after I had mentioned that it looked the same as last time we visited.  I knew then AD had arrived again, its slime once more creeping into our lives like wisps of fog along the shore.  No one’s road signs are the same, personalities become altered, and relationships change.  I go back to my friend Madalyn and her reminding me that Alzheimer’s is different for everyone, yet the end results are, unfortunately,  identical:  No one has ever recovered from the disease.

Originally posted 2011-06-05 06:06:36.

ROSIE AND YELLOW CLIMBERS

yellow rose

Clipping the climbing yellow rose brings back memories.

I trimmed roses today.  The trellis had been filled to overflowing with yellow climbers; each blossom spilling onto the next until there was hardly space for the leaves and branches.  Each year they open in their entire splendor for Mothers’ Day.  Picking that first bouquet I buried my face in the aroma and smiled as my heart filled with joy. I wanted to tell them not to bloom all at once – to save some beauty for June and July — but they never seem to listen.  My consolation: they bloom again in September as if to bid a fond and colorful farewell to summer.

Many years ago Ken’s mother and I browsed through a nursery admiring, touching and taking in the fragrance of flowering plants. “Pick out whatever you like,” she said, “for your birthday.”  I selected the yellow climber, and it must have known right from the beginning how special it was because once it started to climb and the first blossoms began it produced a grand showing twice a year.

Even as a child I was fond of yellow roses remembering my grandmother’s farm in eastern Utah.  During a summer’s visit when I was eight Grandma taught me how to make tiny flower dolls with billowing skirts and bonnets from hollyhock blossoms, and whistles from the leaves of a cottonwood tree, but it was the yellow climbing roses covering her fence which I thought to be especially beautiful – and memorable.  So much so I had once began, one day to finish, writing a poem:

My grandmother’s house was set back from the road,

as much as my mind discloses,

And next to the lane was a long, long fence

filled with fragrant, yellow roses.

There were other pleasant memories pulled from the past as I clipped away under and over the trellis following a few days of playful breezes which had covered the patio with golden velvet petals.  My friend John had once said how much he liked to work with growing things and the earth, “It’s good for my soul,” he said.  “Well put,” I agreed.  And today, my soul felt good.

With Ken inside resting and comfortable under Crizaldo’s excellent care I felt warmed by the sun and relaxed, putting worries about Alzheimer’s momentarily out of reach.  However, thoughts of AD are never far away.  After all, the disease has been in and out of our lives for more than 35 years.  Even the yellow climber reminds me of priceless time lost, and the once-solid lives AD has stolen from our family.

My mother-in-law’s name was Rose, Rose Mary, but her husband Nick called her Rosie, and sometimes Roses.  Ken brought me home to meet the folks on our second date, later telling his mother that one day I would be his wife.  The bumpy road to romance was just that, but eventually we did marry and Rose became my mother-in-law.  In many ways she felt I was the best thing that could have happened to her son, yet in other ways I wasn’t, but we skipped over our differences and had a great, though a bit guarded, relationship.

She adored her grandchildren, felt privileged to babysit for us, and if we needed help she and Nick were there.  Eventually, we would be there for them.

So much of what we believe we know about Alzheimer’s is speculation.  It was during a melancholy time for Rose when her doctor, caught up with the hype about the new marvel drug, prescribed Valium.  “Calming with absolutely no side effects,” was the claim; so with her doctor’s permission, Rose would gulp down a pill as if it were candy whenever she felt blue.  Years later we wondered if the remedy triggered her entrance into AD, added to it, or if it had any effect at all.  Nevertheless, AD with all of its mystery and newness became a part of our lives. 

Nick was having times of odd behavior as well, but we never really knew which of the two was worse off, or whose odd behavior was actually a symptom, and the medical profession was of little help.  In retrospect it seems as if the couple was in a race with one pulling ahead and then the other coming from behind would be in the lead.  The one thing we did know with certainty was they needed help.

Both Rose and Nick had been avid gardeners; Nick was best known for his fruit and vegetables and Rose for the array of flowers she grew, specializing in gladiolas and roses.  Whenever they came for spring and summer visits her arms were filled with a bouquet of either – at times both.

I suppose their garden (or lack thereof) could have been one of the first symptoms of AD.  Somehow, digging the earth and growing things fell by the wayside as they became tired and forgetful.  Not working outside of our home allowed me more flex time than Ken or his sister Loretta.  I came often to my in-laws’ house where I cleaned, watered, mowed the front lawn, shopped, took them to doctor appointments, to the bank, and often cooked a few meals.  With not enough time, energy or hands to do all the chores, the vegetable garden turned to weeds, but the trees continued to produce even with little or no water – for a while.

“Do you know you have peaches on your tree?” I asked one day as I surveyed the yard.  I picked a few to show Mom and Dad, and then sliced some for lunch.  “Are you going to ‘can’ fruit this year?” I asked Rose knowing full well it was beyond her present capabilities.  “I’ll try,” she responded.  “Would you like me to help?” I continued, allowing her to believe in herself.  She was pleased and remembered where she had stored the lids, jars and bands.

I picked the peaches while she gathered everything we would need.  Together, we peeled, pitted and sliced the succulent fruit and chatted as we filled the gleaming jars for the cold-pack canner.  Her mind seemed to have cleared a little and we talked with the ease of good friends.  Laughing together, Rose told me stories about her “Buddy” and what a near-perfect young man he had been.  I chuckled quietly, knowing the whole story having heard it from the rascal “Buddy” himself.

Maybe, after all, I was everything she had wanted for her son.  Perhaps it was no more than a fleeting thing — as with many mothers — remembering my own feelings as I cradled all of my babies in my arms thinking how perfect and precious they were.  I suppose it was all about wanting the very best for our children, including a perfect and precious mate when they were ready for marriage.  Hopefully, Rose had allowed our differences and accepted me for who I was, not who she wanted me to be.

The following spring there was no fruit on the struggling tree and not much to be said about the gnarled rose bushes.  Furthermore, Nick and Rose’s Alzheimer’s had grown worse.  As a family, we knew there would be tough decisions to make – probably soon – possibly later — but all of that was long ago.

My task finished for the day I put away the ladder and clippers, and swept away the petals.  I would go inside and see how Ken was doing, all the while treasuring my afternoon in the sun basking in lovely recollections, yet recalling my first introduction to the Devil’s dreadful disease when it forced its way into the contented lives of Rose and Nick.  I also thought how interesting it is that time dulls the pain of difficult memories, yet remembering the happy times still brings joy to the heart and smiles to our lips in much the same way as a bouquet of fragrant, yellow roses.

Originally posted 2011-05-23 02:51:54.

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.

LOST, ABANDONED AND OTHER DESPERATE FEELINGS

lost shoe

Like a long lost shoe, Alzheimer's patients often feel lonely, lost and abandoned.

“Good grief,” confessed my neighbor Ruth many years ago,  “I forgot Laurie at Mayfair’s.”  It was a few days after the fact that she mustered up enough courage to tell me she had forgotten her child while shopping at one of those supermarkets where there was a built-in Kiddie Korral, a special fenced-in corner of the store where you could leave your children for a few minutes, withour worry, while picking up groceries.  More often than not Ruth went shopping by herself, leaving the younger children with her oldest daughter, who was more than capable of keeping an eye on her younger siblings.  All of the little ones had enjoyed a few stays in the Korral, and if they caught mom heading out to buy groceries, they pleaded to go along.

“Oh please,” Laurie had begged, “Can I come with you – pleeeeease?”  How could Ruth resist such coaxing?   Laurie climbed into the car with her mother and off they went, the little girl being more excited about her visit to the Kiddie Korral than spending some one-on-one time with her mother.  Absorbed in the picture books and surrounding toys,  Laurie didn’t notice the time passing, nor did she notice her mother push the grocery cart past the fun-filled corner and out through the open glass doors of the supermarket.  Nor did Ruth remember she had brought one of her children.

“Where’s Laurie?” asked Jackie, helping her mother carry in the groceries. “Did you forget her at the store?” she joked.  That was the moment of truth.  Ruth leaped into the car and raced back to Mayfair’s. There was Laurie still looking at pictures from the pile of selected books next to her chair.  “Time to go,” said Ruth, relieved to find the little girl safe and sound just where she had left her.  For Laurie there was no trauma and no feeling she had been forgotten, much less abandoned, nor would she be scarred for life from the experience. However, Ruth wasn’t alone is losing a child.

One year we lost our three-year-old son, Kevin, at the county fair.  He didn’t want to be in the stroller, so I pushed his empty vehicle while he held his father’s hand.  Feeling independent, he soon insisted on walking alone, and when his sisters, Ken and I turned to go into an exhibit, Kevin kept going straight.  Within seconds we realized he was gone, and he was – disappeared from sight – and so quickly.  After minutes of searching and not finding any trace of him in the crowd, terrible visions began entering our minds.  Immediately we found the sheriff’s office and reported our missing son. “Wait here,” the deputy suggested, “We’ll find him.”

It wasn’t like Ruth leaving Laurie, she was pretty certain she knew where to find her little girl. We did not.  Our child was lost in a world filled with strangers – and they could be dangerous strangers.  My little boy was alone and frightened somewhere out there.  We were near panic.  It seemed like forever before another deputy appeared before us holding our crying and frightened child, his precious face streaked with smudged tears, his small arms stretching forward to me as we both sobbed; Kevin’s tears from being lost, my tears because he was found and safe in my arms.  “No need for positive identification,” said the sergeant in charge. “Looks like she’s the mother.”

Ruth, nor I, nor Ken, were bad parents, neither were the number of other friends we knew who had misplaced, lost or forgotten one of their children during those years of transition from toddler to an independent human being, especially in a large family. Fortunately, all of our lost children were found.

One couple we know drove 50 miles before they realized their small son was not in Uncle John’s car, but back at the dam.  The return trip was a little frantic, but Steven was safe  in the capable care of the park rangers even though he probably felt lost, abandoned and fearful.  Another family outing involving multiple cars arrived home, hours away from their excursion site, before they realized one little boy was still at the aquarium in San Francisco’s Golden Gate Park.  A quick phone call and Uncle Gene who lived in the City came to his rescue, once again finding the lost child safe with aquarium staff.

Those desperate emotions are always within us and rise to the surface when we feel threatened; possibly in preparation for our own defense.   I suppose they belong to the “Fear Family,” often made worse when fear itself is mixed with believing you are alone and lost.  However, with a diseased mind, those same fears of emptiness and desperation can be a constant in addition to other instinctive feelings that bring unimagined misery to the mindless.  Is it any wonder they can rage, become angry and combative?  Occasionally, I look into Ken’s eyes and see fear and entrapment.  I understand how frightening life can be for AD victims when there is no reasoning power to comfort their own confused state.  Reassurance, however, can come from someone else or something: a familiar voice, a caring touch, pleasant music, soft words, company and many other soothing actions or words.

A few weeks ago I walked through our living room on my way to do a few quick errands.  Ken was sitting comfortably in a chair with Ben beside him.

“Where are you going,” Ken asked.

“I have to go to the bank, I’ll be back soon.”

“No, you won’t” he retorted.

Once again I pled my case, “I’ll be right back – really I will.”

“You’re just saying that,” he insisted.  “You won’t ever come back.”

I looked into his handsome face.  Written clearly was that look of abandonment.  Incredible sadness filled his eyes and demeanor.   I felt astonished to read him so well.  I could see the disappointment, the sorrow, the acceptance of my leaving forever as I moved toward the door.  He was convinced that I wouldn’t be coming back.  I was leaving him alone – abandoning him – in his immediate need for comfort and assurance.

“I can do this tomorrow,” I said to Ben, removing my coat and putting my purse aside.  Ken said nothing more as I sat down, but his face showed relief.  Did he know me?  Was he having a Ken moment?  I don’t know the answers.  What I do know is that for a brief period of time he wanted me nearby.  He wanted that feeling of security — to be with someone familiar — even vaguely familiar.  In much the same way as my three-year-old son had buried his wet face in my shoulder, his arms desperately clinging to my neck Ken too wanted to feel safe, knowing that he was found.  This I could give him with my presence.  Even if it lasted for only a little while, I wanted him to be comforted in that moment knowing he had not been abandoned.

Originally posted 2011-03-21 23:17:12.

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