parents

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.

FAMILY GENETICS, OR DON’T WORRY BE HAPPY

DNA molecule

Only time can tell whether Alzheimer's is transmitted through the gene pool, in the mean time live life to its fullest.

My mother was one of ten children: six girls and four boys.  Mother, Irene, and one sister, Elaine, were victims of Alzheimer’s.  It would appear that two out of the four boys were also stricken,  all developing AD in their later years. Keeping with those same statistics, several of the siblings died at or before they reached 60, with one in her 40s. Whether some of them would have succumbed to Alzheimer’s is pure conjecture.  Yet, the four out of 10 is 40%.

In retrospect, I would say the Alzheimer’s gene came through our grandfather who died in his 50s as a victim of pernicious anemia.  Possibly, AD would have come to him later in his life had he lived, but that, of course, is another guess.  It did not come to our grandmother who died at 84. She could be stubborn, a bit cantankerous, and a little forgetful, but her quirks didn’t seem to fall under the guidelines of anything from the Dementia Umbrella.  In that same search of the past and from the stories and memories my mother told about her early childhood including remembrances of her mother, I do believe my grandmother was afflicted with attention deficit disorder, ADD.  So far, and not to my knowledge, ADD does not fall under the Dementia Umbrella.

My grandmother was proficient, though, in being able to run a somewhat organized farm life.  In addition she had her own system of birth control spacing her babies every two years (having at least one miscarriage following the birth of Irene leaving a four-year space between her and the first son).  My grandmother’s last child, a boy, was born just six months before my older sister, making him more like a cousin than an uncle.

Mama’s sister Elaine seemed to have been a little off center all during her adult life.  It wasn’t as if she lacked intelligence, it was just the fact that she seemed to be what my sisters and I called, “a little bit dingy.”  She and her husband were childless, and, perhaps, that may have influenced her life of self-importance and indulgences.  With no one to be concerned with except Elaine, her world appeared extremely limited to us.  She seemed to skate on the surface of life like the water skitters I remember buzzing over the top of stagnant pools as the creek dried up near our grandparent’s property.  Our aunt was limited in her scope, never venturing beyond where her focus was, paying no heed to anything above or below the surface of her tight, little pond. Signs for actual AD diagnosis began to appear in her 50s suggesting she was a victim of Early Onset Alzheimer’s, and possibly before.

Her husband Ray cared for her at home, with the help of my sister, Janet, for as long as he could manage. When he could no longer cope, they reluctantly found a good full-care facility where Ray hovered over his beloved wife spending every moment possible.  However, during his visits it wasn’t at all unusual for Elaine to dismiss him in favor of the familiarity of other residents which left her devoted husband shattered.  Eventually, even the familiarity of the familiar became illusive for Elaine and little by little she slipped into the nothingness of AD leaving only her shell which seemed to cling to life with the tenacity of a last leaf.  She outlived Ray by most of her 10-year confinement as Janet continued to supervise her care.

As more and more is learned about the diseases falling under the Dementia Umbrella, I see concern looming over the horizon when Ken’s and my adult children speak of the possibility of AD in their years ahead. The knowledge that both sides of their paternal grandparents have victims, and a few of Ken’s first cousins developed full-blown Alzheimer’s the future can appear daunting for the next generation.  There is fear: of course they have fear and the ever-present question, “Will I be a victim?”

As we continue our discussions I mention that the jury is still out on me and my two sisters.  I get the glance and then a possible eye roll.  “Mom!  You’re not going to get Alzheimer’s.  What do you mean the jury is still out?”  Then I remind them that my mother was in her mid-eighties when we saw the first signs.   I also remind them that there is no history whatsoever of AD existing in my father’s family and their longevity also extends into a near century.  “Hello.” I tell them in an effort of reassurance, “The genes which make up the life force in you – my children — include the strong genes of my father’s family as well as all of your other early p;rogenators.”  As our p.c. doctor mentioned when I first asked about AD and Ken the wise doctor said, “At conception, there are numbers beyond measure from which to draw the genes for a fetus.  I would say that Ken’s chances are possibly yes, and possibly no.”

The wise part from our doctor’s declaration wasn’t said in exact words, but I see it now.  He meant for me and Ken to live our life together to its fullest and deal with the problem if and when it arrives, which we did.  Even as the disease progressed we lived our lives to their fullest.   My wonder – and worry — about worry is, “Can worry cause more worry – and that worry become a problem – creating an illness through worry — thus triggering AD into a self-fulfilling prophesy?”  How much bombarding of our psyche with negative worries can a psyche endure without succumbing to that worry?  Again, a question without answers.

Statistics tell us that if we live long enough 50% of the population will have Alzheimer’s.  That’s one in every two people.  Presently, there aren’t many options:  testing is the most promising – if you can call it promising – and if you want to know the answer.  If you know, then early treatment is a good thing, and even that’s not without questions.  Perhaps we should all take a deep breath, relax in the moment — and in that moment – those moments – don’t worry, be happy.   Then burst into song with Doris Day as she belts out “Que Sera Sera,” or in other words, “What will be, will be.”

Photo courtesy of  http://www.flickr.com/photos/wheatfields/with/2074121298/

Originally posted 2011-09-17 20:03:10.

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.

TO COMPLAIN AND QUIT — OR NOT

If anything, I would say that Boy Scout Mark had an extraordinary spurt of character growth at the tender age of 12.  Not only had he learned to cope with some of life’s heavy loads through what had been fun and games for the older scouts, he would also receive insight into another of his character traits a few weeks after the big hike.  While being a pre-teen at 12 can be a stepping stone into growing up, age doesn’t really matter as long as those valuable lessons learned are incorporated into one’s life.

Mark had already learned that if you remove the excess rocks – things you don’t really need — from your pack – your life — the load is lighter, and he cheerfully applied what he had learned to the remainder of the 50-miler.  It wasn’t as if Scoutmaster Ken hadn’t been aware of the shenanigans pulled off by the older boys; what he had been impressed with was that Mark didn’t complain or tattle. He also noticed the camaraderie that developed among the multi-aged troop during the seven days in the mountains where they recognized that the competition was not among one another, but between all of them and the challenge of the wilderness.

Mark continued to write:  “We learned about trees, poison oak, and edible and non-edible plants along the trail.  We crossed a glacier, and ate food with a little dirt; we learned respect for nature, which was all around us, and we learned to respect each other, and of course, to always be prepared.  It was seven days filled with learning, but it was what happened after the trip that changed my life forever.”

Ken always liked to give each boy the recognition he deserved at the Courts of Honor which were conducted for not only the young men, but for friends and families.  The Court was always well attended, and after the 50-miler the room soon filled with eager scouts and proud parents.  One by one the honor and merit badges were awarded, including a special 50-miler remembrance in the shape of a hiking boot.  “But I had not received my award,” continued Mark, realizing that all of the awards had been handed out.  “Then my Scoutmaster called me to the front as he had all the other boys. ‘I want you to know,’ Scoutmaster Romick stated, ‘that in all my years of scouting I have never seen a new scout like Mark.  He never complained, nor did he give up, not once did he quit on the entire trip.   He is not a quitter nor is he a complainer.  I am amazed and impressed.’  He then handed me my award and patted me on the back.”  Applause filled the room.  Basking in his moment of glory Mark later declared, “I believe I grew 12 feet tall that evening.

“That statement of 30 seconds, and the following accolades, changed my character and my life forever.  An adult had recognized a positive trait in me, told me about it and I believed it!”

For Mark it was a year of epiphany, discovering a part of his self, part of who he was which provided a guideline to the man he wanted to become.  With that inner knowledge he established a creed of determination by which he lived, and he has continued to do so all of his life.  Now, a grown man with a family of his own, Mark still recalls that evening with Ken, and wrote, “Even now as I think of my Scoutmaster I thank God for that man who showed me the way.” 

When I read Mark’s words I am in awe of my husband who was a very likable, but ordinary man, yet he was able to reach through that invisible armor of youth, see the boy’s potential and impact him with self-motivation and power.  I am humbled at Mark’s accolades for Ken. But even more I am inspired by Mark’s every-day use of his own established creed, which I’m striving to make my own.

As the “boss” caregiver for Ken with his Alzheimer’s there are times when I would like to quit and times when I am tempted to complain.  Actually, I know that neither is an option.  I’m not going to quit, and I have found it doesn’t do much good to complain; besides few want to listen.  Of course, we are allowed to vent and to share our sorrows and woes with friends who have fought the battle, and with my wonderful internet friends who read my blog and share their stories about their ups and downs, their joys and sorrows while living with AD.  They provide (and I hope I do as well) the soft shoulder to cry on, and with them I can vent – knowing that venting is good.  Even the best of machines needs a vent.   But I’ll strive not to complain or whine about those things which cannot be changed, and I’ll remember the wisdom of a 12-year-old boy who grew to be 12 feet tall in 30 seconds because of Ken.

Originally posted 2011-07-10 18:52:36.

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.

A FATHERS’ DAY GIFT FOR DAD

Father's Day gift

Most times the best present of all is a visit from a loved one.

“What should I get for Dad?” seems to be one of the most-asked questions falling from the lips of all children whether they are adults or still youngsters.  I recall Ken asking his mother, Rose, what we could get for his father as the arrival of either his birthday, Fathers’ Day or Christmas popped up on the calendar. I wasn’t any better with my dad.  The needs of these two men were next to nothing – minimal – and even minimal was too much.  They had everything they wanted and if they wanted or needed anything else, it seemed they just went out and bought it.  So much for gift ideas!

Nevertheless, we tried, and our children tried.  We might upgrade Dad’s hammer or get a new set of screw drivers, but how often could we do that.    Ken’s father was so funny about gifts.  He loved having us congregate for his birthday and other special occasions or for no occasion at all. But on present days we wanted so much to find something special for him; something he would remember and enjoy – from us.  Nick was an appreciative man, and when he opened our gift we were certain we had selected the perfect item.  Gushing with enthusiasm, he held it up for all to see exclaiming loudly, “Thank you very much.  Thank you very, very much.”  And he was sincere.

He blew out the numerous candles on his cake, and then Rosie served slices of her yummy chocolate confection with ice cream and 7-UP for all.  He was the life of his own party even if they were always the same. 

Lovingly, he would stand at the door as we left expressing how much he appreciated our coming and thanking us over and over for the gifts.  Then he would say to one of the older boys, “Why don’t you take this home?” handing him the after shave lotion which was the gift from Loretta.  To Ken he offered the screw drivers our children brought, and Loretta got the hammer. “Please,” he coaxed, “take these home.”  Now we, the guests, were the ones saying, “Thank you.”  Every gift-giving session with Nick ended in the same way.  “And thank you too,” we all called back relieving him of his just-opened presents. It was useless to object.  No matter what we brought to him, he gave it back to us, or to one of the other guests.  We all just shook our heads and laughed.  I suppose the gift he wanted most, and received, was having his loved ones near: our presence was his present.

My father wasn’t much better although he did keep everything.  He was a handyman so he used the tools, but when they moved and we cleaned the medicine cabinet we tossed the old after shave lotions with the seals unbroken certain the fragrance was long gone – or worse – drastically changed.

Ken was different, truly loving everything given to him.  His interests and collections covered many bases.  A kid at heart, our children and grandchildren knew they could even buy him toys, which the children were allowed to enjoy, but only with Grandpa.  Furthermore, he never gave any of them back.  He was not like his father.  Having once worked for the railroad he was the recipient of a phone shaped like a train locomotive, a miniature train and railroad station which in reality housed a clock announcing the hours with train whistles and a conductor shouting, “All Aboard.”  Grandpa was showered with trains of all gages from “N,” and “HO,” all the way up to match the train he had as a boy. The shelves were lined with miniature cars, trucks, semi cabs with trailers, and heavy equipment.  As a Navy man Ken enjoyed the tiny replicas of WWII battleships, cruisers and PT boats, “The Lone Sailor” figurine standing watch, and to hold up a section of Navy books our son had given him anchor bookends.  One year I asked our daughter-in-law Peggy to finish a hooked rug bearing the Navy seal which Ken had started but never finished — being the great procrastinator.  She did, and he was thrilled as we hung it on the wall. Ken even let everyone know he collected teddy bears.  His home office was the envy of all the grandchildren looking more like a shop filled with collectibles than a serious spot where the man of the house wrote monthly bills and figured his taxes.  After all was said and done I found it to be an endless chore to clean, and a pain and a half to dust, which I did, but only if and when Ken was willing to help.

He also enjoyed new shirts, new wranglers and new ties.  His first gift tie came from our daughter, Julie, when she was 9.  With white-elephant donations through the PTA and a two-day sale, the children were able to purchase affordable gifts for dad come Fathers’ Day.  Selectively, Julie chose the prettiest tie in the whole lot — a wide, hand-painted number sporting a garish Hawaiian sunset that was certain to blind onlookers.  He wore it all day — even to church.  “Nice tie,” commented the brethren – knowingly — “Fathers’ Day gift?”  He nodded and they all smiled.

As Alzheimer’s took his mind, it also took his happy spirit, his joy, and his sense of humor.  His curiosity about a colorfully wrapped package slowly ebbed until there was no longer any interest.  Even the greeting cards that were enclosed are now without meaning – just something to look at and toss aside.  So here it is again: Fathers’ Day, and the question still arises, “What can I get for dad?”

Whether it’s Dad’s Day, Mom’s Day, or Aunt Elaine or Uncle Tony’s birthday, or anyone else’s special day who is stricken with any of the vicious mind diseases the answer is usually the same.  “He/she really doesn’t need anything,” or the caregiver may say, “How ‘bout some new sweat clothes,” realizing the uniforms of the day are looking a bit shabby.  The only real need the victims may be aware of is a need to be fed when they feel hungry.   A plate of cookies brings a sparkle to Ken’s eyes and he might say, “Those are mine, thank you.”  So cookies are always a good gift, or candy; both can be rationed if there is a health problem.

Other than sweets and treats one suggestion as the best of gifts for the afflicted, and the caregiver as well, would be time – your time – time in the form of a visit given by friends and time given by family.  Not a lot, stay for just a little while and then you can leave, but please come again.  From what we, as caregivers observe AD has stripped their memory of everything once held near and dear.  Ken’s face is usually a blank wall as he stares up into the face of a visitor.  Perhaps, he may shake hands – or not.  Typically, there appears to be no recognition, nor does he make much of a comment as he did during the earlier stages of the disease.  At times Ken is chatty, or he may ignore the visitor altogether, or take a nap.  There is no “best” time for a visit.  Most of the day he is unpredictable; at times dozing off while the visitor sits nearby wondering what to say next.

Later, though, after someone has come and gone, and toward the end of the day Ken seems a bit calmer, more pleasant, happier if that’s still possible.  Prehaps deep in his soul the voice of the “stranger” works its way through the slime covering the brain and settles in a place that brings him the most comfort: in his heart where he may feel the reassurance that he is still cared for and loved.

Originally posted 2011-06-17 19:17:10.

IN SEARCH OF ME

 For the loved ones who have been entrusted to me – my husband’s and my parents (three out of four having Alzheimer’s) and now Ken who is well into advanced AD – I have always endeavored to do my very best as their caregiver.  If that sounds a bit martyrish, I don’t mean it to be.  Sometimes in life you just “gotta do what ya gotta do,” and all in all it’s been a labor of love and devotion.  However, at times I feel as if I’ve lost my identity — my very own place in the world — especially without Ken by my side to help me over the hurdles.  Feeling tired when the weather is scorching doesn’t help either.  Nevertheless, it’s still Ken’s well being that’s paramount, his comfort, nutrition, cleanliness and security – it’s all a part of my long-term goal.  Coupled, though, with managing our rental property, our personal finances and home, assistant to Ken’s caregivers, and all sorts of things that just pop up without warning, there are days when I can’t help but feel, “Hey?  What about me?”  I suppose Thursday was one of those days.

It was hot in San Francisco’s Bay Area. The East Bay, where we live, is several degrees warmer than the City itself.  Usually, weather conditions here are near perfect.  Once winter passes and the seasons get into spring and summer, the days are sunny and comfortable.  However, when the temperature zooms from the 60s to the 80s from one day to the next with no gradual warming period in between, people tend to be a tad terse.  Myself included.

Rental property was something Ken and I thought to be a good idea when we were younger.  It would be a wise diversified investment to our “portfolio.”  The venture has been a good thing all of these years when we both worked together, using our “How To” talents to restore, renovate and rent our real estate purchases, but now that Ken is unable to do any of the work, I find it impossible for me to do it alone.  We have great tenants who keep up the interiors, but the outside of our 4-plex needs constant maintenance and yard work.  Ken and I did all of that as well, but now there is just me and the person I hire.

Thursday is yard day.  With the heat already promising discomfort at 8:00 a.m. I wanted to call my help and cancel mowing, trimming and sweeping, but I knew I couldn’t. We did, though, manage with a minimum effort.  Still, my day wasn’t over.

Tuesday, the tenant in another rental called to report the toilet tank needed to be reworked.  He questioned, “Do you want to rebuild the inside with new parts, or with a crack in the bowl do you want to replace the whole thing.  Mason, my tenant, would do either task after he got home from work.  I opted to replace the whole thing, picking up a new commode at Home Depot (along with some new faucet handles for my deep sink) sometime on Thursday. How simple is that? Help from the store could load it into my pickup and Mason would unload.

“GET THIS TOILET FREE!” announced the sign at the beginning of the plumbing isle.  I found an associate and asked the secret for obtaining free merchandice (i.e. the toilet) still holding the handle of the flatbed I had rolled through the store for its purchase.   “It’s a water company rebate,” he explained reminding me that only certain toilets qualified for the promotion of $50.00 or $100.00 — depending on which water company provided the service — and only certain old toilets were eligible.  We began by examining all the features on the newest low-flow models.  “Do you have the correct measurement from the wall,” he asked.  “I don’t know,” I replied.  Shaking his head, he cautioned, “If you don’t a have a 12” space from the back wall to the bolt holes,  you can’t make the connection.”

Problems, problems, I thought.  Recalling how easy it had been when Ken and I shopped for toilets, I hadn’t realized I needed measurements.  We simply picked out a commode we liked at the right price, loaded our choice onto a flatbed and off we went.  I can’t count the number of toilets Ken has purchased and installed, nor do I remember if he measured for the 12” space, although he may have.  “I can’t answer that question,” I said, wishing my cell was in my pocket.  It wasn’t.  “I’ll be back,” I promised pushing the flatbed, which held the faucet handles I had picked up first, to the nearest check-out.

I drove to the rental, rang the bell and Tara opened the door surrounded by her little ones.  I explained my mission, and with my small pocket tape she stooped (even though she is very pregnant) and measured the distance from the wall to the bolt.  “Twelve inches,” she said.  “Good,” I replied, “Thank you.”

Back in business I waved to the children and drove again to Home Depot, glancing at the clock.  I needed to get home to help Criz with Ken, but there was time enough if all went well. After all, what’s the big deal about buying a new toilet?  My associate saw me coming dragging another flatbed.  Quickly, I made my selection.  After all it wasn’t a fashion statement.  “Let me see if this model is listed to qualify for the program,” said the associate, reminding me again that all styles didn’t.  Checking the computer, he then went to the phone, and then to the printer.  Returning minutes later with several sheets of paper he began to survey the qualifying numbers and brand names.  I checked the time and was tempted to say, “Forget the rebate,” but I didn’t.  The $50.00 was better in my pocket than in an account belonging to the water company, so I waited.  Besides, with water rates going up they would get their money back soon enough.  He studied the list and compared numbers.  Finally, he said, “Here it is,” pulling the box from stock and loading it onto the flatbed.  He handed me a paper with the numbers underlined.  “Take it to the contractor’s register at the end of the store and someone will load it for you.”  Feeling a bit relieved, time still on my side, I rolled the flatbed to the directed check out.

Of course, there was a long line even at 5:45 in the evening, but I was committed so I waited.  Finally, it was my turn. “I need someone to load this onto my truck,” I said to the cashier handing him a credit card.  “Just drive up to the door and you’ll have help,” he assured me.  I parked, climbed out of the driver’s seat  and hurried inside saying, “I’m here.”  Time was running out and I should be home.  Criz may forgive me for being late when he sees I’ve purchased new handles for the deep sink – the deep sink being an important part of Ken’s evening clean-up.

I sat in the pickup waiting.  It was hot and I was getting edgy as time slipped away.  Suddenly, I began feeling angry.  Why isn’t Ken here and why does he have to be sick?  If he were here we could load it together and be gone. Doesn’t he know how much I need him – how much I miss him – and besides, what about me?  Who am I anyway? I’m his wife, but I’m not a wife; feeling like a widow, but I’m not his widow either.   He’s here, but he’s gone.  Why did he desert me leaving me to fend for myself?  That’s how I felt – as if I had been abandoned – the way he felt last month when I wanted to go to the bank.  Here I was left alone, deserted, with no one to touch my shoulder and reassure me that everything was going to be all right.  No one can rescue me and it’s never going to be all right.  I felt my eyes begin to puddle.

Finally, I spotted my desperately needed help as he appeared through the exit doors wheeling the flatbed toward the truck.  Quickly, he dropped the tailgate, and without a hitch the damn toilet was on board.  “Thank you,” I mumbled, holding back the gathering storm.  Inside the cab – with a small amount of privacy — I permitted a few tears to flow.  Not a lot and not for long, just enough to relieve the pressure behind the dam.  Besides, it’s not safe to drive and cry, and Criz is waiting.  One day they will flood out – my lake of tears — when I have the time, place and another frustrating reason to allow for such a luxury as a good, hard, sobbing cry.

At home I handed the faucet handles to Criz.  He smiled.  We had removed the originals a good while back because Ken, when no one accompanied him to the bathroom, always left the water running, at times flooding the floor.  Eventually, one handle became lost and Tuesday the second one fell behind the washer.  Opening the package we found that another customer had “taken” the screws. Tomorrow I will return the set to Home Depot, and buy another.  This time I’ll check to make sure all items are included.  The good part is I will be rested, the weather cooler, and after all is said and done I’ll be fine – until another unbearably hot day and another broken toilet.

Originally posted 2011-05-08 05:28:32.

THE HIGHEST OF HONORS

Most of the people with whom Ken and I have shared our adult lives made the choice, following marriage, to have children — lots of them.   The trend, which was very popular after World War II and the Korean Conflict was to have large families.  As part of that trend, we are the parents of five offspring:  two girls and three boys — stragglers of the “Baby Boomer Generation.”   Our years of rearing children were the best years of our lives, nothing out of the ordinary: normal, I would say.  We did PTA, Dads’ Club, Little League, Scouts — boy and girl — church with all of its youth programs and activities, enjoyed their friends: good and tolerated the bad; we endured sick days, happy days, school days, vacation days, holidays and rebel days.  We angst through the 60s and worried about drugs, hippies and all the ramifications that went with young people coming of age during such a traumatic, often radical, period of history and being faced with choices where their lives could have been damaged, ruined or even claimed by death, but they survived and so did we.

The growing years went by in a blur as if we had pushed the fast-forward button of a VCR.  Some of our brood went to college, others did not, but in any event they all turned out pretty much okay, and then as young adults they picked up their lives and went their chosen way.  Normal and happy:  that’s what we wanted.  Yet as each one left the nest they left an empty spot in our hearts.  For most of the years which followed, they have lived close by with their growing families, and we consider that a blessing.  While we are no longer the strong beacon of influence we hoped to have been, we treasure  the grown-up relationship we have with all of them.

Parenting, however, is still such a constant, and while Ken and I had rediscovered “us” and had moved on into our retirement years, we wanted that safety net to remain for these grown children: the knowledge that we were and are still “there” for them — in every way.   It isn’t because they really “needed” us, it’s their knowing that counts.  I’ve often compared us, “mom and dad,” (other moms and dads as well) to the stove and refrigerator — even the washer and dryer — the house, the car — home; “there,” we’re just “there.”   We are part of that security, that solidarity which they have known “always,” and will, hopefully, remember in a good and loving and “normal” way.

So what do we, as parents, expect in return?   Actually nothing, but cards and perhaps a few flowers, or some other small token of love on birthdays, Mothers’ and Fathers’ Day; love and respect and occasional phone calls — and visits.  But accolades?  I don’t think so, believing myself and Ken to be ordinary people. Yet, to my surprise my daughter, Debbie, nominated me for “Caregiver of The Year” through a website out of Chicago: http://www.caregiving.com with Diane Brown as the host of the site, and her own internet/radio program.  I am one of the five recipients to receive the award and I am honored and humbled.  When I read Debbie’s letter of nomination, and her description of what she has observed over the years, I cried.   Such a high compliment to receive:  for her to see me not only as her mother, but as a wife, a person — an individual in my own right — someone who has had a life and has, possibly, made some kind of contribution to mankind and the world in which we all live, and for her to want me honored is an honor in itself.  The following is her letter of nomination:

“I am writing about my father’s caregiver, my mother.  Given all the other service-oriented activities she has been part of:  PTA, Scouts, Little League, and church, this would not be out of the ordinary, but my father is the fourth family member with Alzheimer’s that she has given or directly supervised their in-home care.

“Her first experience with the disease came with my father’s parents.  I cannot remember when they were stricken, or what their ages were.  I remember their 50th wedding anniversary; my grandmother was 68, and my grandfather 12 years older.  They both seemed fine at the event, but shortly after the celebration, my mother began to make more and more visits to their home.  They lived about 30 miles away and my mother made several trips a month to take them to the doctor, for haircuts, or to make sure they had food in their pantry and refrigerator.  My father’s sister lived a few blocks away from them, but because she was a single mother and worked full-time, she had little time left to spare.

“My mother was truly the sandwich generation, as I had three younger brother’s still living at home.  I know that she was devoted to home and child care, but she was also realizing some success as a freelance writer.  However,  by unspoken agreement between my father, his sister and herself  it was a given, because she didn’t “work,” the responsibility of caring for my father’s aging parents would belong to her.  Even though the current social climate touted women’s rights, liberation and the importance of career, my mother’s dreams of being a writer were squeezed between appointments, errands and all the other aspects of her busy life and giving nature.  She had no time to think about whether she was liberated.

“With the death of my paternal grandparents, the needs of her own parents soon crept in and once again began to take over her life.  When her own mother developed the same symptoms that her in-laws had shown, she moved them from their country home, which was two hours away, to another home just a mile from her own.  Her older sisters lived two states away, and once again, the burden of care for their mother fell on mom’s shoulders.  Any spare time was spent in the busyness, stress and exhaustion of caring for another Alzheimer’s patient, as well as making sure all of her father’s health needs were met. Sound as a long-ago dollar he never had dementia.  As her mother’s condition worsened, they tried a care facility.  Its effects were devastating not only to her mother, but also to her father who could not handle the toll the confusion and foreign surroundings brought on his wife which only added to his own despair.  Luckily my mother found a dear friend who took over much of the burden of caring for the older couple the last few years of their lives.  Despite the help, mom was very much involved in their care.  She was continually at their home doing what she could and again, the sole driver for appointments and outings, which continued until the elderly couple passed.

“Following a few years respite, the ugly signs of Alzheimer’s appeared in our family once again, this time afflicting my father.  After her experience with her mother and in-laws, one might think she would be an expert, but not so.  Everyone is different and seeing your parents change into people you no longer knew, cannot be the same as having your beloved spouse of almost 60 years, not only not recognize you, but demand that you leave your own home.

“My mother has risen to this challenge with fortitude, determination and a sense of humor.  She has become somewhat of an expert on the holistic treatment of this disease, and in a sense, she has won.  Whether it is the day-to-day battle or the full war, only time will tell.  After six years my father continues to live at home.  Each day he takes a handful of pills and vitamins that may have allowed him to retain enough of his personality to care for his physical needs, and for the most part functions as a young boy in their home, with small moments of time as my father.  The war will be over when he is taken to his Heavenly home.  Hopefully that will happen sometime in his sleep and then my mother will be victorious, as she has finished this last act of marital service and love.  I cannot imagine the emotional pain this has wrought on her, and the torture she has felt as she has lost her soul mate, bit by bit.  Her perseverance and optimism are amazing.  Her example reminds me that we are never given more than we can handle.  And through this all, she has developed her talents and her career.  The disease and her life have given her a story which she shares in a blog.  Eventually there will be a book — an example of courage and service for other caregivers and her legacy of service and love to her family.”

Originally posted 2010-01-28 05:59:25.

PROBLEMS BIG AND SMALL

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

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

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

As I survey the growing problems as caregiver to my husband and his Alzheimer’s, and all the others who share our experience, I also think of the little ones out on Halloween night with plastic pumpkins and decorated bags carried to collect their evening’s loot.   As young as they are they too have problems.  For them their problems loom just as large as our problems are to us, which reminds me of my seven-year-old friend, Robert.

While visiting grandparents in Northern California Robert was allowed to pick out a pumpkin at a nearby pumpkin farm.  Selecting it from the vine, he helped load it into a wheel barrel, and then into the car.  Aunt Chrissy laughed and said that she would buy the 95 pound pumpkin for his birthday.

At home, the gift sat stately and firm on the front porch until some thoughtless, mean-spirited thieves took it while Robert was at school and his mother, Malena, away from the house.  Coming home to an empty porch Robert was inconsolable.  He sobbed until Malena thought his heart would break.  Tearfully he asked his sympathetic mom, “What if the thieves are already making pumpkin pies?”  How could a first grader understand the cruel ways of the world, or why anyone would take his special gift.  The theft of his Halloween-birthday pumpkin was, to Robert, the biggest problem he had ever encountered, and a problem he was unable to solve.  Our story, however, has a happy ending when a family friend, who is also a police detective talked with Robert, assuring him the “force” would see that his pumpkin was found and returned.  Meanwhile, our detective located an equally large pumpkin in an equally busy pumpkin patch and, back in full police uniform, delivered it to Robert’s porch.

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

Originally posted 2009-11-02 07:39:37.

“TAKE ME HOME”

How many times during the length of a marriage does one of the partners nudge the other whispering, “Let’s go home.”  It doesn’t matter how great the party, how good the movie, how grand the evening or even how perfect the vacation, there comes a point when it’s time to go home. 

Children aren’t much different either; from a skinned knee on the playground to puppy love’s first rejection, the yearning is the same, “I wanna go home.”  The youthful statement is often accompanied by sobs, pleadings when bored or whining when the pleadings aren’t heard. 

Poets write verse about home, lyricists link home to a melody, our service people long for it and commuters drive for hours to get there.  Back home is where mom and dad live, a new home is what everyone wants, and home is where we are when the door closes.  A sanctuary from the world, our private abode; a place to hang our hats, kick off our shoes and relax in front of a warm fire and hopefully, a place where love is.

But what happens when you are home and you don’t remember it being your home?   Then the lament changes to, “When are you going to take me home?”  Each day, during a certain mood, Ken tells me that he wants to go home, becoming very anxious about getting there.  No matter how often I try to reassure him, “This is your home, Ken,” he becomes less and less likely to recognize what was once so familiar.   “Look around and you might remember the family room you built many years ago, and come into the living room,” I suggest, guiding him along the way.  “See your father’s Marine photo on the wall, and your parents’ wedding picture, and right here is the family portrait, the four of you:  your mom and dad and your sister, Loretta.  And look at you at 15, aren’t you handsome?”  

 Up until yesterday, the tour seemed to bring him back into, at least, some reality of being home.  However, yesterday he looked at his parents’ photos, glared at me and asked in an accusing manner, “Who gave you permission to hang my family pictures on this wall?”  At that point, fearing he would rip them down, I changed the subject and eased him into another room.  Forgetting the photographs, he still wanted me to take him home.

A few years ago, we attended the funeral of a good friend whose brain had been ravaged by Alzheimer’s very rapidly.  For their privacy, I’ll call them Luke and Paula.  Luke was a successful orthodontist at the peak of his career, being struck down at a comparatively young age.  Following diagnosis, he immediately sold his practice, and the couple moved mid-state to be near their son and his family.   While Paula battled Luke’s disease, I battled Ken’s so we didn’t keep in touch.  Seeing her again,  I gave her a hug and despite her brave front, there were tears when she said, “He’s home, he’s finally home,” explaining how often he pleaded for her to take him home.   Her reference, of course, was the Heavenly home from whence we all came.   However, I couldn’t help but wonder if he missed their place here, in the Bay Area, having been in their new home for such a short time it made sense that the old house held more memory.

I also believed Ken wouldn’t go through the “wanting to go home” phase because we have lived in this same house for more than a half century.  I was wrong.  As he regresses, he becomes younger and younger, often asking if I have seen his mother.  When he does, I know he has become the personality I have named “Buddy,” his parents’ nick name for him.  Undoubtedly, I thought, the home he  has in mind is where he grew up in Berkeley, or is it?  Even as his father, Nicholas, descended deep into Alzheimer’s he would beg to go home.  Is it possible that Ken isn’t asking to return to his childhood home on 10th Street after all?  Perhaps Paula is right.  In their tormented minds, were — are — they calling out to Him to take them home?    Could their spirit be remembering what Wordsworth suggested?

“Our birth is but a sleep and a forgetting:

The soul that rises with us, our life’s Star,

Hath had elsewhere its setting,

And cometh from afar:

Not in entire forgetfulness,

And not in utter nakedness,

But trailing clouds of glory do we come

From God, who is our home.”

Originally posted 2009-09-06 07:10:05.

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