children

Blessings In Disguise

Ken, Mabel and his daughters Julie and Debbie and daughters-in-law, Mary and Sabina at his 80th birthday 2005

This is, possibly, my last guest post. My mom should be back here writing next week – or soon thereafter.  Debbie Schultz

One of the blessings that came from my turn at caregiving was a chance to become reacquainted with my dad. Obviously he is not the strong, but gentle man, who raised me, helped me through a divorce, get back into school, and proudly watched me graduate from college at the age of 41. This man is definitely different, interesting in his babbling, making sense only in fragments. He was always a great storyteller, but even that aspect is gone from his tangled brain. I see his personality in layers. Some of the facial expressions I remember as a little girl, the mannerisms are still there. When I first arrived here from my home in Utah, he was lying in a hospital bed, mumbling in heavily sedated sleep. He seemed so very old and vulnerable to me. I softly stroked his head and muttered my good byes, thinking that might be the end. But like my mother, he has a tremendous will to live, and two weeks out of the hospital, he is gradually becoming his old pre-accident, self.

The disease is horrifying, taking a person a bit at a time, but in a somewhat detached way, it is also fascinating. What makes a personality? What bits and pieces of one’s history stick, and why do they stick? What jogs memories? Why do some things stand out, while others are forgotten? When asked, he will say he has no children. He confuses me with my mother, but I correct him and tell him that I am his daughter and I love him. I  especially use the technique when I am doing things he doesn’t want done, like showers. Looking in his eyes and telling him seems to calm him. I call it speaking spirit to spirit. And when my daughter goes to move something of mine, he says, “Don’t touch that, it’s my daughter’s.” For a brief moment I am remembered.

He knows he was in an accident. The first few days he was home from the hospital he complained about being stiff and sore. He told me that he hurt because a truck hit him. He knows, when he remembers, that my mother is in the hospital. His love for her, despite the forgetfulness is so evident. Besides often asking where his wife is, there is wistfulness in his wanderings. He sleeps on his side of the bed, waiting for her to come. He asks me if she is working and if so, when will she return home?   Although my voice may sound the same, my reactions are different than hers. He is confused by the similarities.

I am grateful for the opportunity that I have been given to get to know my father all over again. I have more feelings for him as I have served him these past few months. I miss the man that he once was, but I love this frail, funny, shuffling person he has become. Who knows why we go through the things we do in this life? As hateful as this disease is, it often brings out the best in the people that it touches. I have gained a new appreciation for my mother and all she has gone through as she cared for the other members of our family, who were also struck down by Alzheimer’s. The positive side of this negative situation is the opportunity I have been given to serve my father and make some effort to understand what has happened to change him. Without caring for him, there would not have been the reconnection I have felt.  When he is truly gone I will not only mourn the man my father was, I will also mourn who he has become. I am indebted for the chance that I got to know that other man.

Originally posted 2010-04-28 03:39:46.

NIGHTMARES

“Help, help!  It’s the wolf.”  It was the middle of the night and I leaped from my bed and ran into the bedroom of our little girls.  Snapping on the light to let Debbie, our six-year-old, know that I was there to chase away the fear and to hold her close so she would understand that everything was all right. Patting her small back as she clung to me I couldn’t help but smile a guilty smile at my unwise decision to read “Little Red Riding Hood” as a bedtime story.  It was one of her favorites as was “The Three Little Pigs” who also had issues with a big bad wolf.  “Please, please,” she had coaxed handing me the tattered little book, “please read ‘Little Red Riding Hood.'”  So I relented and read the scary story before turning off the lights.

Harmless fairy tales when the sun shines, but the wolf proved a bit more menacing in the darkness of her room.   A hug and a few kisses and reassurance that it was just a bad dream; that the story was only a fairy tale and there was no wolf in her room soothed my frightened little girl.  Finally, comforted and content she snuggled down in her bed and went back to sleep.  The worrisome wolf with the big teeth “the better to eat you with,” was gone.  Such is the stuff of which bad dreams are made when you are six.

For me, the villain of my first remembered childhood nightmare has vanished, but not the terror I recall as I struggled to free myself from the grip of that frightening dream.  My older sisters had been telling ghost stories to one another and I listened wide-eyed and trembling as an eight-year-old, not wanting to hear what they were saying, yet glued to the edge of the bed as they expanded the gory details of their tale, no doubt giggling inside at their gullible little sister.

Finally awakening from the horror, the real world didn’t feel any better than the nightmare.   Wide awake I was somewhat relieved, but in the blackness of my room, the misty experience lingered, and behind every shadow I imagined some lurking “thing” which could leap out and harm me — or worse.   I buried my head under the covers and closed my eyes ever so tightly, wanting to call out to my mother, but too frightened to make even a sound.  Somehow I must have fallen asleep because the next thing I remembered the room was filled with sunlight washing away shadows and hidden ghosts — and the best part  — I was still alive.  Such is the stuff of which bad dreams are made when you are eight.

Everyone has bad dreams and nightmares for any number of reasons.  My last run of recalled mid-night unpleasantness came about because of a new prescription for high blood pressure.  They were, once again, nightmares with me as the intended victim of any number of horrible characters cloaked in black capes and hoods, demons and even an assassin where I ran and ran and ran with “it” or him close behind wielding a dagger to do the dastardly deed.  The attempt to escape from those dreams was nearly more difficult than escaping from my imagined tormentors.  The dreams finally stopped when the doctor changed the medication.   Such is the stuff of which bad dreams are made when you are a grown up.

But suppose there was a nightmare from which the victim could not awaken?   As Alzheimer’s continues to claim the mind of my husband, I often see him frightened and agitated, and I believe it’s partly fear which, at times, makes him disagreeable, uncooperative, angry, combative and downright mean.  When I see him drop into his agitated mood my heart sinks.  This particular mood, which seems a “must” occurs at least once a day, usually taking place anytime from late afternoon throughout the entire evening, and well into the night and even the wee small hours of the morning, or it can last a comparatively short period.

Introducing that mood, he seems to “mark time” barely lifting one foot then the other from the floor — kind of like a little boy who has to go to the bathroom.   This mood — this personality — this action —  this — whatever it is I dread the most.  Communication with him is at his choice, shutting me out and any of my efforts to reach him.  If he does speak to me his words are insulating or degrading.  Somewhere inside his body there appears to be a mountain of pent-up energy which requires disbursement.  At times he can be subdued with the aid of a tranquilizer* and two or three Tylenol PM tablets* in the evening.  Other times he overrides the medication and cannot be subdued.  I confine his agitation activity to the living/dining room, the hall, bathroom and our bedroom.  Every other room is off-limits to him:  locked.  I lock them not to be mean, but to keep some kind of order in the house and to make life a little easier for me.  He doesn’t need to ransack everything in every room.  During part of these moods he becomes obsessive-compulsive and spends that time rearranging whatever he touches with ritualistic exactness.   It does no good to correct him, to suggest anything to him, or to make an effort to redirect his interest elsewhere.  For most of this time he remains alone  in his nightmare world obsessing and searching endlessly for his elusive home.

I imagine him like a robot where the control panel is out of commission allowing any of the robot’s still-functioning electronics to misfire sending nothing but broken signals of confusion (much like Ken’s diseased brain).  With Ken, the misfiring sparks a jumble of emotions: love, hate, abandonment, suspicion, loss and fear, and it seems as if fear and loss are paramount.  It’s no wonder he’s frightened as he looks around in his own home where we have lived together for more than a half century and recognizes nothing.  And me?  Surrounded by confusion, he sees me as an enemy and is, understandably, even more fearful and defensive.  I am a stranger in his midst and although I am a woman — his wife — he is still afraid of me.  By watching him, I can tell when he feels threatened and as his anger peaks toward rage I know he can become combative.  Until he is able to calm himself I often walk away, locking our bedroom door, which leaves him totally alone until the agitation subsides and the anger dissolves.   It’s during these wild episodes when I think of him as experiencing the most terrible of bad dreams:  ones where no mother can give him comfort, no sun-drenched room chases away the ghosts, and no doctor can write a new prescription.  Ken’s life is held captive in a terrifying dream-like world with no way to escape and no way to wake up from this awful torment.  Such is the stuff of which nightmares are made when you are a victim of Alzheimer’s disease.

*See Blog titled “This’ll either cure ya, or kill ya, or….

Originally posted 2010-02-07 09:41:39.

THE HIGHEST OF HONORS

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

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

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

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

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

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

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

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

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

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

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

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.

PROBLEMS BIG AND SMALL

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

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

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

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

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

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

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

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

CATS, DOGS AND ALZHEIMER’S

“We have to move, Grandma.  I hate to ask, but do you suppose you could take care of our cats for a while?” asked granddaughter, Kristina, knowing I was pretty much her only option.   We had cared for our daughter’s dogs a while back, and even though we love animals, the dogs were somewhat rambunctious and a little much for Ken.  Thoughtfully, I considered Kristina’s request.  Cats were so different from dogs.  They weren’t in  your face or under  your feet all the time, so perhaps, they might be all right.

We were always a pet family: mostly dogs and cats with an occasional stayover bunny, rat, hamster and small alligator.  Some of our animal acquisitions arrived through friends of our children, but Ken was often the plea bargainer in bringing home a new pet.  We had gone to my cousin’s wedding and while at the reception, he managed to find a litter of kittens in my uncle’s garage.  All eyes and ears, the adorable little things just happened to be the perfect age to be given away.   “Oh, look at this gray and white one,” Ken exclaimed picking up the small critter.  On further examination he added, “And it’s the only male in the bunch.”  Elaborating on the fact that our dog, Lucy, needed a friend he quickly added how much the kids would enjoy a cat.   He was a sweet little thing and I was in agreement.  As soon as the festivities were over, we left for home with a surprise tucked into a box which Uncle Cliff had found for our kitten.

The new pet was such a delight for our children, each one passing the small animal from one to the other, remembering to be gentle as each waited their turn.  Lucy, on the other hand, her mothering juices flowing even though she had been spayed, held the kitten with one paw and gave him a thorough washing.  Yes, Jasper was home.

Several months later Ken looked at his male cat and remarked, “Jasper is sure getting fat.”  On a second examination I observed, “You didn’t pick the only male in the litter, you found the only female in the litter.”  Before we had her spayed, and during the happy days of the 50s when it wasn’t irresponsible for your cat to produce, Jasper provided kittens for all the children in the neighborhood.  She was also an excellent tool for sex education not only for our children, but for the children of our neighbors who gave the okay for their young ones to watch a live birth.  And Jasper?  She sought me out, letting me know in her own mothering way that it was time  to deliver and for me to be ready with the commentary.   She seemed to enjoy the quiet, well behaved audience with their occasional ohhhhs and ahhhhs as each kitten appeared in its own protective sack.  Too busy to care, it seemed she hardly noticed the group “yuk” as she licked them all clean.

It has been said that just petting an animal lowers blood pressure.  Ken’s Aunt Mary lived in an Alzheimer’s care facility where they had a resident dog who went from room to room spreading his cheer.   Not only did the residents pet him, so did the company.

For now, the experiment with Kristina’s cats is, “How will Ken react?”  We all went through a few days of adjustment.  A little worry that they would get lost if they slipped outside, and their adjustment to us?  It’s going well and they come and go as they please.  I believe, in their own small way, they are good for Ken.  He comments when they are around, “Look, a cat.”    Certainly, he’s not the Ken of old who would reach down and pick up either Junior or Gouda, but they come to him, curling up in his lap as he sits on the couch, or one will snuggle down on his chest  as he rests in bed contemplating getting up for the day.  With severe Alzheimer’s there is little apparent joy for the patient under any condition, but as I see Ken reach out to  touch, and then pet the cat’s silky fur I see him smile, hoping that somewhere in his clouded brain he feels a warm glow of happiness.

Originally posted 2009-10-08 08:05:37.

PATIENCE

“I pray for patience and I want it right now!”  If there’s one thing that slips through the sieve at the drop of a hat it’s patience.  No matter how well-intentioned and how resolved we are, it just takes one push of the right button and patience is gone, followed by regret and new resolve to be more patient next time.   Then next time leaps unexpectedly from behind a corner and it’s back to square one.  Patience:  Is there some place where I can order it by the carload?

Over the  years I have observed that the desire for patience is rather universal.  Mothers of small children plead for it, parents with teens have long since been stripped of it and grandmothers lament because they didn’t have more of it.  I recall my own mother looking back on rearing me and my two sisters and telling me that she wished she had been more patient.  It was like an apology and as a young mother with small children I gave her a hug because I understood and forgave her. 

Then in her old age she became a victim of Alzheimer’s and I was her main caregiver.  Every so often I found myself losing patience with her.  She became like a little child — a spoiled child — resorting to  high-pitched screams when she didn’t get her own way.  It had been a long day and she screamed at me as I helped her get ready for bed.   Suddenly the small room was filled with the sound of a banshee.   Looking at her she had the most startled look  on her face and I realized it was I who was screaming.  Ashamed and angry with myself for losing patience I couldn’t have felt more remorse if I had slapped her.  I hope that when we meet again she will forgive me.

Several of my friends, male and female, are the caregivers for those they love most, their best friends with whom they have shared a lifetime who are now strangers in their midst; strangers, created by Alzheimer’s or related diseases.  How they mourn their lost patience especially once their dear one has departed  this world. “If only I could have been more patient,” is their guilt-ridden cry of self-deprecation.  It is my cry as well, but how I rationalize that it was all right to lose my patience and temper in light of Mr. Hyde’s anger toward me, his snide and arrogant remarks for no reason, his rejection, disregard and lack of appreciation.   But when he is Ken and he remembers I am his wife and he loves me my eyes well with tears knowing that, indeed, I do love him, really love him, and I hope he will forgive me for my lack of patience.

Originally posted 2009-02-25 06:41:14.

ALONE, BUT NOT ALONE

Remember in Genesis the Lord said, “It is not good for man to be alone.”  So God created Eve to be a help mate and a companion to Adam.  While we know the Lord was speaking not only of Adam, but of the coming human family and knowing that it wasn’t good for woman to be alone either.  Therefore, Adam and Eve were help mates and companions to one another.  And so it has been from the beginning of time that male and female have paired off to create homes and families wherein they share with one another, and with the children they begat. 

Once, however,  the children are grown and gone the devoted couple continues sharing with each other until one is called Home again to be with the Father and the one remaining is left alone.  Of course, the companionship is gone and missed and life is lonely, but it seems that the most difficult adjustment to make is the emptiness of not sharing.   With that I’m not talking about just the material things, not even food and water which is so necessary to sustain life and limb.  It’s the sharing that comes from the other’s presence, a touch of love, a kind word, or one of praise, or gratitude — the moment-to-moment kind of sharing.  The discovery and rediscovery of the surrounding world, of life’s joys and sorrows, the thrill of a small success, or the despair of disappointments softened with a word of encouragement,  a sweet voice of comfort and a fond embrace; a oneness kind of sharing with a special someone.  That’s the kind of sharing missed when only one partner remains.

Earlier this month, Ken and I were driving east one evening just after dark and suddenly from over the blackened hills the moon appeared — full in all of its golden glory.  “Oh, Ken, look at the moon,” I prompted.  We had seen the moon thousands of times, but  a full moon is like a new discovery.  Last week it seemed enormous in size and bright beyond description.  “Where?”  was his immediate response.  “Just above the hills,” I directed still driving.  “It’s so beautiful.”  Finally he found it.  Unimpressed my mate said, “Oh.”  I miss the enthusiasm, the excitement and the remembering of “our moon” shinning down on our young love those many years ago.   The person I used to share those memories with is gone.  Even when he’s Ken, Alzheimer’s has stolen our past, robbed him of us and our family, yet still I yearn for him to remember and share with me: to laugh and smile, or even cry a little as we reminisce.

Sunday night we watched “60 Minutes” for the first full interview with Captain  Sullenbereger who landed his plane in the Hudson River just out of LaGuadia Airport.  I sat with Ken in front of the TV encouraging him to just sit still and look at this segment with me as I was sure he would have enjoyed it.  He paid no heed even as I explained what was happening finally calling his attention to the people standing on the wings and the rescue.  It was thrilling almost beyond words to watch this life drama unfold on film.  While my heart pounded he arose from the couch several times to check the doors and to see if the cars were still in the driveway.  Caught up in the emotion of the interview I so wanted to share it with someone;  to talk about the goodness of it all and “Sully’s” humility about being a hero; to talk about his expertise, the years of flying experience, his knowledge and the skill of this ordinary man and his calm ability to accomplish such an extraordinary task.  I wanted to softly cry with someone who cared about humanity as the grateful passengers and their loved ones thanked the captain and crew for keeping their families whole; for saving 155 lives.   I watched the program with Ken but in reality I watched it alone — and shed my caring tears of gratitude — alone.

Originally posted 2009-02-10 05:00:16.

DELUSIONS?

January 15, 2009 — Six months ago when we saw the neurologist, he asked if Ken had delusions.  I told him that he doesn’t actually see people, but he believes they are there.  Early on, in the beginning when it became obvious that Ken was a victim of Alzheimer’s, he waited for people to arrive, thinking we had invited guests.  Now he often believes they are here, napping in one of the beds (often his mother is sleeping) or children are playing somewhere in the house.   I assume, with the children, he believes we are baby sitting.

When he comes into the room where I am he asks,  “Where did they go?”  I always answer the same way,  “They left,” or “Their parents took them home.”  I’m not sure if those are delusions or not because he doesn’t actually see anyone, and there are times when he will come into a room and ask what happened to the other woman who was with me.   Delusions?  I don’t know.

Each night when it’s time for dinner, he tells me there will be people coming for the evening meal.  Earlier in his illness I would correct him, saying, “No one is coming for dinner, Ken.  I didn’t invite anyone. It’s just the two of us tonight — you and me.”   However, I don’t do that anymore, especially when he is so positive that we are expecting company.  The spouse-caregiver is continually learning what works and what doesn’t as she, or he, stumbles along  into the dark and confusing world of AD.   Instead, I assure him that I will cook more when the mysterious guests arrive, but for the time being I will prepare dinner for two.  Nevertheless, he leaves the porch light on so they will feel welcome.   After dinner there is no more mention of company.  Checking to secure the doors he also turns off the porch light.

He’s beginning to talk in his sleep, not making much sense, but now and then he appears to be having a conversation with someone in his imagination or possibly as part of a dream, or he just chatters.  At times I tell him, “Shhh. Go to sleep, Ken,” and after a while he will stop.  While he is talking, he might reach out with one hand as if he were grabbing something in the air.   Is that part of a dream or would the good doctor consider that delusional?  Often he grabs at me, which is a bit disconcerting.   When I tell him “Stop,” he is usually accommodating or he turns over.   I wonder if he sees with his eyes or his brain.  Is one reality and the other a delusion?

All in all, the week has gone fairly well.   Ken naps after breakfast and in the afternoon I try to keep him busy — and awake.  He needs to be tired so he can sleep at night.  When he is tired I am happy because I am tired too.  Each day has its own challenges as both Ken and I grope our way through what can be real for  me,  yet filled with fear and confusion for him.  Then, finally, as the world becomes still and peace settles in, and if we’re lucky we can both escape together — not into the strange world of AD and delusion — but into that sweet and ever-so welcome land of slumber where we both sleep.

Originally posted 2009-01-15 07:36:02.

NEW YEAR’S DAY AND FOOTBALL

January 2, 2009 — When one is married to an AD patient, a rousing night on the town is hardly on the calender.  Planning something special for New Year’s Eve for Ken and me while we’re on this journey into nowhere had to be close by and simple.  We spent New Year’s Eve with our friend Jayne at the movies.  It was after 8:00 when the movie ended and we barely found a place open to eat, but one is all we needed, and they closed at 9:00.

We took Jayne home and the first thing Ken asked once we were in our house was, “Are you going to cook dinner?”  The entire evening was forgotten; the movie and the food.  Reminding him that we just finished eating at a restaurant was to no avail, and to escape an on-coming argument I turned on the TV for him and went into the office.

When I peeked into the kitchen a half hour later, thinking he would be sleepy, and settled in the family room as I had given him two Tylenol PM, he was busy ransacking the refrigerator.  Finding cheese and bread and some Ready Whip — yes Ready Whip, instead of mayonnaise — I let him be.  We finally went to bed at 1:30 p.m.  I  hadn’t wanted to stay up and watch the New Year enter, but we did.   I just can’t sleep until he is settled.

All of our married life Ken has set aside New Year’s Day as his day.  If I invited anyone over for dinner they had to know in advance that any conversation would be about the “game.”  The one on the TV screen.   A lover of football, no matter who was playing, Ken could (and did) watch game after game, rooting and cheering for his favorite college team.  By day’s end he was exhausted, having physically gone through all the motions of running, kicking and tackling throughout every endless quarter.  With that kind of single-mindedness we seldom had guests on New Year’s Day.

Personally, I was always a little annoyed by his devotion to the great god football, but once into AD I would have been thrilled if he sat and watched.  I turned on the TV New Year’s morning and reminded him of how much he would enjoy the games.  He watched for a little while, but lost track of any action every time a commercial aired.  Nor was he inspired by a favorite college team.  This man who previously memorized stats and could give you the scores and teams from the last 20 Rose Bowl games didn’t know one team from the other. Yes, AD was gaining ground.  Nevertheless I encouraged him to watch reminding him of how much he had enjoyed all of these games in the past.  Unimpressed with my sales pitch he told me, “They’re just doing a rerun of yesterday’s game.”

The irony of it all.  If he had been capable of understanding I would have said, “That’s what I’ve been telling you for more than a half century.”   I know, sarcastic humor is wasted on the very young.  It’s also wasted on  the very old, especially if they have Alzheimer’s.

 

Originally posted 2009-01-02 05:22:52.

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