Family

WHAT’S YOUR EXCUSE?

Decorated Christmas Tree
Even something as simple as putting up the Christmas tree could be a great help for Alzhiemer’s caregivers.

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Originally posted 2011-12-10 05:37:08.

THE RUSTING YEARS

Like an old and abandoned truck, some seniors feel they are in their rusting years.

“The Golden Years my Aunt Tillie,” said Frances as we talked about these last few rungs on life’s ladder.  “They’re more like the rusting years.”  “Well put,” I had agreed as she was in the midst of recovering from a bad face-on-the-ground fall that knocked her into the next county breaking her jaw which had to be wired shut while it healed. Like a flash of lightning Frances could zap out words faster than Quick-draw McGraw could whip out his trusty six-shooters.  Her comments could be loving, kind, happy, knee-slapping funny, profound, glib, and, at times, a bit stinging. Did the wired jaw stop her conversations or even slow her quick wit?  Never.  As long as her tongue and mind worked in unison the tumbling words slid out between her teeth and lips with never a pause.

We had become good-enough friends that every so often I was allowed to say, “Oh Frances…….” when a remark might be a little too biting, too stinging or sarcastic, but most of the time I laughed.  She was very funny.

Frances was a widow, and had been for more than 15 years and even with Ken’s AD she invited us for dinner, and I, in turn, prepared dinners for her.  Ken had been Cub Master and she was a Den Mother when all of our boys were just boys.  The two hit it off famously and became the best of friends with my utmost approval.  Frances always puckered up and gave Ken a quick peck on the lips whenever they met.  Following their amicable kiss Frances would say, “How! Great White Father,” holding her hand up with an Indian greeting in reference to a long-ago Pack Night theme from a sweet, innocent time when we were all young.  Then one day we were no longer young and she was suddenly gone.  I miss my friend.

I’ve noticed that a lot lately; our friends keep dying, or they move away.  “Get some younger friends,” advised another dear friend Sofia who, with her husband Don, have moved away, but not too far, just inconveniently far.

Making “couple friends” is difficult though when your spouse has a debilitating terminal illness.  So I mostly hang out with women who have lost their husbands.  They are widows and I am sort of a widow, but I’m not.  Nevertheless, there is an inescapable loneliness in being the one left behind no matter what your title.  Unfortunately, that feeling of being alone can never be filled by friends or family, even though the need for friends and family remains paramount to the well being and happiness of the remaining individual.

I thought about this the other day when I visited Eva.  She and her husband were the entertainers from Hawaii who I have mentioned in other writings.  He’s been gone for more years than I remember, and now with her AD and circumstances dictating the remainder of her life she lives in a very nice full-care facility.  Walking through the halls I was aware of so many lonely souls sitting in their wheelchairs outside of their rooms, and I wonder who they are and about those who still share their lives.  Sofia’s husband Don has a phrase that I often think about when I visit people with full dependency on a nursing home:  “A mother can care for seven children, but seven children can’t seem to take care of one mother.”  It’s only a phrase, but following that first capital letter and the ending period, there’s a lot of truth in those few words.

I found Eva in front of her room matching the forlorn description of the others. Tiny little thing sitting there by herself, looking lost, lonely and pitiful, and I couldn’t help but feel a stab of melancholy as she scanned the area – searching – waiting.  “Let’s go for a ride,” I suggested, securing the foot rest, and then wheeling her through an open door.  It was pleasantly warm outside, so that’s where we went.  I parked her chair in the shade with ribbons of filtered sun teasing the shadowed greenery.  “Where……,” she stammered.  “What is it?” I coaxed.  “Where is my family?” she asked looking puzzled about her surroundings.  That’s the trouble with AD; the answer has been given, but the question keeps rising to the surface.  “All of your children except for Matthew live very far away,” I reminded her.  “They come when they can, but I know Matthew is here to see you almost every day.  I’m sure he’ll come later this afternoon.”  I think of Eva remembering how she was:  beautiful and vivacious in her brightly colored and fitted muumuus, and so filled with charm as she strummed her ukulele and sang melodies from the Islands and pop tunes of the day.   Now I feel overwhelmingly sad that the life she knew, her home and all that was familiar are gone.

Rather than making small talk I sing to Eva.  To those who know me really well my singing is a joke, but I’m not making conversation, nor do I, for one minute, think I’m the entertainment du jour.  I’m communicating with her spirit.  This I believe.  Eva relates to music so I softly sing some of her favorite hymns and songs I recall from her entertaining days.  She manages to join in with a few words and she smiles, and for that little while she appears to be content.

At 90 most of her friends are gone, others are not capable of travel, but I do believe there is a self-imposed detachment that happens with some friendships – and even some family members concerning these last years. I know with certainty that many people claim they don’t have the capability of coping with seeing their friend or loved one in a care facility, hospital, or even visiting the infirmed or elderly in their home; “Too depressing.  I just can’t deal with it.  It hurts me too much,” I’ve heard people say.  I understand because my father was that way.  Yet, I want to scold and remind them, “This isn’t about you.  It’s about Eva, Uncle John, Rose, grandpa, your sister, brother, your father, or Frances’ Aunt Tillie.” You need to strive to bring some joy and a little companionship into that person’s life.  Forget about yourself.  It’s called love and compassionate service, and the more you participate in reaching out to others, the more you grow as a person.  Pretty soon, you’ll even catch the spirit and you’ll be surprised at how good you will feel when bringing some brightness into another’s life.  I could say all this, but I won’t.  It isn’t my place, but if Frances were here, she would.  She might also tell them a few funny stories about the rusting years.

http://cdn.lqw.me/gather.html?t=13799573414eb9b391d20e65.80060532&m=&_adpk_datetime=2011-12-03%2008%3A02%3A10%20UTC&v=d67fc23&_adpk_src=&_adpk_subid=&h=annromick.wordpress.com

Originally posted 2011-12-03 01:59:36.

THANKSGIVING AND MOMENTS OF FEELING “NORMAL”

Turkey

Sometimes the familiar will help Alzheimer’s victims glimpse normal

Living with Alzheimer’s there are seldom days, or even periods of time, when life is “normal” – or I should say the way it was – or seeming to be the way it was.  Nevertheless I strive for “normal” as a goal – possibly that we could live our lives in the same manner as we did before AD even if for only a moment.  Certainty the day-to-day care and the fluctuations which occur to the mind and body of anyone with a severe terminal disease are to be expected. Yet a portion of a day can still appear almost like old times.  I suppose it all depends on many factors: influences from within the AD victim and outer influences, noise or silence, visitors or none, cooking aromas, weather, music, sports on TV, the voices of children – any of these may or may not set the stage for mood swings.  Optimistic that Ken would be in a good mood, I set his usual place at the Thanksgiving dinner table.

It’s always a gamble to eat with Ken.  At times he’s been known to reach over to my plate and help himself to something that appeals to him.  Something like those long-ago times when our toddlers were tied with a dish towel into a chair stacked with books when no highchair was available. It was comical to see the adults pulling food and plates out of reach as the small hand stretched at arm’s length to acquire what might satisfy his curiosity as well as his tummy.  So I wondered how Ken would react to a table filled with other people and food in abundance.

I have mentioned before how social Ken had always been, and he responded well yesterday as company arrived.  He seemed more aware, warning the children not to go out a certain door leading to the backyard (which was pretty much ignored) and shaking hands with the adults when a hand was offered.  He even managed a smile or two.  The real test, though, would be dinner, and I did have a back-up plan.  Hopefully I wouldn’t have to use it.

As all of the prepared food and turkey culminated into a feast, Crizaldo and our son Keith guided Ken into the dining room where his chair faced away from the table into the living room where everyone had gathered.  “When dinner is served and his food is in front of him, you two can pick up the chair and turn it around.  That way he won’t be distracted by an empty plate.”

Ken was happy to be part of the group as Keith welcome everyone asking Bob to say a prayer of thanksgiving and a blessing on the food.  As the room became silent I counted my own blessings: years of good living with this man I had married and his prudent financial preparation for our retirement and the possibility of needed care beyond what either of us might be able to do for the other, and for the caring men who provide that additional need.  I am grateful for not only the surrounding family, but for those of our family who had other obligations and those scattered throughout the country; grateful for Liz who, after nearly two years of world travel, had her two feet gripping the ground of New York City and was on her way home.  We are truly blessed.

Following the final “Amen,” Keith and Criz picked up Ken in his chair and planted it directly in front of a plate filled with food.  Without as much as a skip of a heartbeat he picked up his fork and began to eat.  Not the way he often does, barely chewing before another fork full goes into his mouth, but casually, chatting the way he always did before.  I suppose it might be said that old things bring back old ways, and gathered around the dinner table could have triggered a memory from the past. Tuning in every so often it was nice to hear he was engaging as best he could in somewhat of a conversation, and I was pleased.  Nearby the children ate at a smaller table where they were more interested in getting finished and back to playing than they were in Thanksgiving’s bounty.

Another year has passed since we all gathered to celebrate our blessings and offer our thanks to the Almighty.  So as evening approaches I sit quietly and glance around the table at my ever-growing family.  I see Ken at one end of the table and me at the other: matriarch and patriarch of this wonderful group of people, and it all appears incredibly normal — almost like a Norman Rockwell painting.  Today, I am grateful beyond expression and content in these happy, captured moments.

Originally posted 2011-11-26 08:00:45.

SUPER BOWL GRATITUDE DAY

football game

Though gratitude may not have to do with football, to this caregiver it makes Thanksgiving, the superbowl of gratitude.

I never think of November without conjuring up thoughts of Thanksgiving which I have come to refer to as the Super Bowl of gratitude. There are a few grouches out there who believe the holiday is all a bother. No doubt the naysayers are imagining some corporate CEO greedily scooping up profits from the turkey market. Even if that were true the holiday is and can be so much more.

Squeezed in between Halloween (which seems to be getting bigger and better every year) and Christmas, Thanksgiving looks to be the forgotten holiday. No one appears to give it much thought except school children with their Pilgrim collages and hand-traced-paper-plate birds, and supermarkets whose windows are adorned with cornucopias, autumn leaves and fan-tailed turkeys.

So I find that before the family gathers around the table on the 4th Thursday of this month I begin early to count my blessings. Actually, I do most every day when I offer my morning prayer of gratitude, but sometimes it takes a reminder to appreciate things we take for granted, and don’t always think of as blessings – only bills.

I’m the first one to grumble about the increases in our utility costs, especially with the tight economy and our very tight budget, but what if gas and electricity weren’t available. The other morning, just as my day was getting started, the electricity went off.  It’s happened before, many times, and it’s always such a surprise. My immediate reaction – always — is what’s wrong with the lights? Automatically, I flipped a few switches. No electricity. I knew that already. There is something about a power failure that announces exactly what it is when it happens: the power fails. Perhaps it’s the suddenness followed by a brief, yet eerie silence as everything stops that momentarily baffles our senses.

Outside, there was plenty of light, but neither of our bathrooms has a window. Question: What shall I do until the power returns? Answer: I’ll prepare breakfast. Wrong, the stove is electric as is the microwave. When Ben gets here we can get Ken started on his day. No we can’t. The bathrooms are dark. Check my email, vacuum the rugs, wash/dry some clothes, or mend some of Ken’s things waiting for me on the sewing machine. Can’t do any of those catch-up chores, there is no electricity. Instead I made my bed, and before Ben arrived the power was back on. I went about the day immediately dismissing my half hour of inconvenience. When in reality, utilities, even though we must pay for them are blessings taken so for granted.

The next day the wall furnace, in the family room, where Ken “lives” (eats, sleeps and sits) stopped working. “When troubleshooting a furnace,” someone had told me, buy a new thermostat.”  I did. “Who told you that?” asked the servicewoman from PG&E as she sat cross-legged in front of my ancient wall heater. I gave her a “duh” answer to which she replied, “The first thing you do is call PG&E.” More often than not their house call can get the heat up and running, or they can tell you what’s wrong but they can’t fix it as the problem is beyond their service parameters. And they do this as a free service. She even installed a new thermocouple to match my new thermostat. “Don’t get a new heater,” she advised, “It’s a valve, and you need to get a good heater/plumbing person.”

The PG&E service woman who came and the people in the office with whom I spoke about the problem were incredibly helpful. They all got a “5” on the follow-up phone survey and I am so grateful for their help.

“Mason can fix it,” said a sweet young friend, Tara, when I mentioned my problem. “I’ll have him call you when he gets home.”

So that’s where we are this week in life’s comedy of ups and downs, struggles and solutions, and I am grateful for the kindness, the advice, the help and the general goodness of people, and to Mason who put the heater back in A-1 condition. Grateful for my comfort-filled home; certainly an understatement. Today’s homes are filled with luxuries beyond measure. What a marvel our lives and conveniences would be to our long-ago ancestors: running water in the house – hot and cold – heat on a chilly day, sanitation, lights to take away the darkness, a stove to cook our meals and a big white box to keep our food cold and fresh.

Setting aside the wonders of our modern world I can’t forget so many wonderful people who will and do step forward to help. I could go on, but I won’t. I have to save some thoughts for Super Bowl Gratitude Turkey Day when I will share my appreciation and feelings of love with those I am passionately thankful for: my family.  Ken and I are truly blessed.

Originally posted 2011-11-12 04:01:01.

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 world.  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 relatives.”  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.

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.

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.

ACCEPTANCE: ALZHEIMER’S IS TERMINAL

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

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

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

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

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

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

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

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

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

Originally posted 2009-11-11 08:18:50.

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