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Posts Tagged ‘Family’

Decorated Christmas Tree

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

In my last writing, I touched on attitude from those who might not feel the “necessity” of being part of a loved one or a friend’s journey into and through the Alzheimer’s experience because they couldn’t deal with it emotionally.  My response was simple:  “It isn’t about you.”

However, I thought it might be good to share some thoughts from other people.  I did receive a few comments from those who read what I wrote, and I find it amazing that this “attitude” is so common out there, but for various reasons.  Attitude is often what might drive a wedge through a loving family splitting them apart, or a supportive attitude and effort can pull that family closer together.

I also read an article from The Alzheimer’s Reading Room by Bob DeMarco where he asked several questions as to how a caregiver might feel when confronted with someone near and dear having the disease.  His last question, which really wasn’t a question, went something like, “Your life in caring for someone with Alzheimer’s has remained the same and has been unaffected with no complications.”  The first word out of my mouth was, “Ha!”  I wondered if Bob meant it as a joke or it had slipped by him in error.  More than likely it was a tongue-in-cheek attention getter.  Trust me, it got my attention and my dander standing straight up.  How can anyone who even has a remote relationship with an AD victim remain unaffected?  Then I went on to read some of the comments, various blogs, and mused previous conversations I’ve had with people.  I marvel at how different we all can be given similar circumstances.  The following are some excuses heard by not only myself, but by friends and family members:

     1.  Fear:  Friends or even family members may have some kind of distorted, sub-conscious fear that the disease is catching.  They may also fear that the caregiver might ask them to help.

     2Jealousy:  From a long-ago conversation, “Mom and Dad appointed you to be in charge of their health care, so do it.”  With that kind of attitude, it looks as if Mom and Dad were right.

     3.  Distance:  “I wish we could be more helpful, but we live so far away.”  As a retired couple, Mr. and Mrs. Wishwecould take lots of vacations, and always stop by to visit the folks for a few days and make a big fuss over AD Dad and Mom.  At least, that’s a good thing.  Could they do more?  Certainly. The Wishwecoulds need to extend their vacation for several days and suggest that the caregivers plan a respite during that time while they take on the responsibility of the folks for a few days – or more.  And, the caregivers need to assert themselves and make the suggestion if the offer isn’t forthcoming.

     4.  But I work:  Don’t we all, it’s just that many caregivers don’t get paid.  Even people who work have holidays and weekends.  They might even have some personal time coming, and then there is after work time as well.  I’m sure some kind of relief and/or help schedule could be worked out.  Caregiving isn’t an easy time for anyone.

     5.  But I do help: “Didn’t I bring you up to speed with the latest report on AD research?  Have I not become an expert on the disease?  Just ask me anything.  What?  You mean you want me to help clean him up?  Change his diaper?  Stay here with him while you go to the bank and do a few errands?  No. I’ll do my thing and you do yours.  Did I tell you what I just learned about AD on the internet?”

     6.  But I’ll give you my opinion:  “I really think you should put him in a home.  That’s where he belongs.  I don’t believe you know what you’re doing, and he could be a danger to himself and others.  After all, what experience have you had?  The neighbors think so too.”

     7.  Too educated to help:   “The adult children are either in higher education or have graduated, often appearing to be ‘above it all’ when it comes to actual help.  If they do anything at all, they become short-tempered with me and give me eye rolls at how I’m handling things at home.”

     8.  But what can I do?  When AD is diagnosed, there isn’t much to do, but as time goes on there are any number of things people can do to help.  Several years ago I was doing fine, and then my granddaughter, Katie, asked what she could do for me.  I said, truthfully, that there wasn’t much I needed.  Then she asked if she could help me put up the Christmas tree.  “That would be wonderful,” was my response.  And she did.  Several days after the holiday she called to ask if she could help take it down.  She did that too.  For those wondering what you can do, just offering to do some little thing might be the biggest help of all.

     9.  It’s all about me:  Those remarks I made in the last writing also apply, but they’ve been pretty much covered.  “It hurts me too much to see loved ones ill or in the hospital.  It’s too depressing.  I just can’t deal with it.”

    10.  I’m sorry, I just didn’t realize.  Actually, that’s not a cop-out.  Some people really don’t see the whole picture, so it is up to the caregiver to speak out.  Get beyond being hurt because you’re not getting the help you need.  Sometimes we, as caregivers, just have to humble ourselves and ask.  Furthermore, and after all is said and done, it’s important to be forgiving to those who just don’t “get it.”

I received a beautiful and positive comment on The Rusting Years from Chessa who responded by telling me that she was so glad she was there for her grandmother and now, after grandma has passed, she was able to write, “I often thank the Lord for no regrets of ‘should’ve’s’ ‘could’ve’s’….. only peace in knowing ‘we did.’”

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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.

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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 were 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.

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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.

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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?

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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/

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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.

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