The Long Road
Road

I Know What I Know...
By Linda Martindale
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For my Mother, Opal Stuart, who gave me wisdom

 

Finding Out...

The important thing is not where you go, or what you do, it’s that you do it. Once you put yourself out there on the line you realize how alive you really are. And just how great life is. It is my feeling, that we don’t always live “happily ever after.” with happy endings. I think life gives us good moments, not so good moments, moments that are ok, and the one moment that we all seek in this life... the perfect moment. The moment when we know that our innermost emotions and feelings are met. When we stand face to face with our hearts, and know it can’t get any better than this!...That is the perfect moment. That is the happy ending.

 

One afternoon in San Diego I was visiting with my elderly  parents at their home. The block on which they live is a commercial Mecca for mortgage brokers, insurance companies, the local social security office, apartment buildings and heavy traffic. It is a prosperous neighborhood. So are crimes and drugs, as witnessed by the bullet holes in my parents living room bay window, the reminders of a drive by shooting.

 

” Dad , my God, are these bullet holes in the window?’ “Yes, they are” “What happened, who did this, did you call the police, were you and Mom in the room when this happened?” “Yes, of course I called the police, and what can they do about anyway? We had bars put on the windows.” “Aren’t you scared, How can you live like this? And besides look at Mom she just sits there all day staring out that windows, what if she had been in the way of the shooter? “Well, I don’t understand why you didn’t tell me?” “ What could you have done, just get upset like you are now?” No, I can help you find someplace safe to live” “This is our home, and besides where would we go?” “Dad, I always need you to tell me what’s going on. I need to know that you and Mom are okay.”

 

I grew up in this house, I’ve walked many times down the blocks of our street, but I never felt ashamed of it until now. And my parents had kept quiet about it all this time, why?  Did they still want to believe they were safe in their neighborhood, or where they really afraid that they had no place to go? The world had changed around them. But they hadn’t.

 

I sat and waited to ask Dad a question I’d ask myself for a long, long time. I was looking for the right moment when I could sneak him away into another room without Mom noticing. I didn’t want her to hear the fear in my voice.

As Dad and I stood face to face in kitchen where Mom could not hear us... the fear of the unknown and feelings of helplessness hung heavy. “Oh, Dad. There is something terribly wrong with Mom, I think she may have Alzheimer’s” His response was quick and to the point “yes I had to her the doctor last week.”  Dad confirmed my greatest fear.   Mom never noticed that we had left the room, she sat in her favorite chair where she spent many hours of the day staring off into space with her hands in a palm to palm praying  position gently sliding them back and forth, back and forth.

 

For years Mother would ask me what school my daughters attended. She would forget where she put her purse or pick up one belonging to someone else. She not only lost her keys, she would forget what they were for.  Many little things occurred to indicate that she was having trouble with her memory.

 

Of my parents three children two of them lived out of town.  She was becoming forgetful and would telephone my brother many, many times a day. (Sometimes as many as twenty times a day) When she would call wanting him to come over to visit after he had just spent the day with her, he would gently remind her of having been together already.

Even when forgetful she didn’t call her other son or myself long distance. My Dad had always made the long distance calls.  And there had not been any birthday cards or messages for years now...  I took it personally and wondered many times why she rejected me so.

 

.Unfortunately, many people fail to recognize that these symptoms indicate something is wrong. They may mistakenly assume that such behavior is a normal part of the aging process; it isn’t.  Sometimes we fail to act even when we know something’s wrong.  It’s important to see a physician when you recognize these symptoms.  Only a physician can properly diagnose the person’s condition.  Even if the diagnosis is Alzheimer’s disease (AD), help is available to learn how to care for a person with dementia and where to find assistance for yourself, the caregiver.

 

As your loved one becomes less and less able to attend to basic activities of daily living, such as bathing and dressing; and more nursing care is needed. This is the time you need to consider placing the impaired person in a care facility. This is a hard choice. ,You will do best for yourself and the patient if you have thought through some options for alternative care arrangements. Your health team can help you get started. Talk about it with people you can trust and know what you are going through: Your family, friends, a social worker, a clergy person. Community agencies also offer you a wide range of resources and types of help. Nursing homes offer the option of temporary or permanent placement depending on your loved ones needs. Explore your options early, be prepared for your need when it comes.

 

I’ve heard it said that reality is when it happens to you, how true. How many days do we let pass into the next before something happens that wakes us up to realize we aren’t going to be around forever?  Don ‘t wait for some misfortune to wake you up and make you appreciate life.  The negative things will happen anyway...

 

I prefer to believe that the last time we saw each other, she rushed out of the house, opened her arms and gave me big hugs. But this isn’t fiction. So I have to say that the last time I said hello to that face, she looks past me to the wall and I’m not her daughter anymore. And we talk of Linda in the third person, as if I’m not there. This is the awakening.  My mother has Alzheimer’s.

 

Currently, there is an estimated 4 million Americans afflicted with Alzheimer Disease (AD). It is expected that 15 million people will have AD by the middle of the next century if an effective form of prevention is not found.

Alzheimer’s Disease is a progressive, degenerative disease that attacks the brain and results in impaired memory, thinking and behavior.  At this time there is no treatment available to stop or reverse the mental deterioration of Alzheimer’s disease.  However, new research findings give reason for hope. Several drugs are being studied in clinical trials to find out whether they can slow the progression of the disease or improve memory for a period of time.
 

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Reflections

On occasions my mind would wander back to a lovely quote by Willa Cather: Where there is great love there are always miracles. I wanted so to believe that there was a miracle awaiting us. And I knew that this disease could only be fought with great love, understanding, patience, and courage. I knew that it would be a long-term struggle for the entire family. We did not expect or want to take on this new role of caregiver. We now realized there would be a steady decline of Mothers abilities to think, remember and act in appropriate ways. But there was no way to predict what pattern the disease would follow. We were all scared and angry.

 

With great love there were days that I set aside for remembrance, glancing back with affection and understanding of our lives. Realizing the values that my Mother had bestowed on to me as a child. I called forth our hopes our dreams and all the things that made life so very memorable.  Along with the memories came detours, good intentions, missed opportunities, and courage..

 

There were no built in ovens or island kitchens or skylights in the house (it was a housing project) only a single wide apartment sized stove, a double sink, and tattered cabinets.  Yet I remember the house as a place of clear light and sweet air, suffused, somehow, with a perpetual smell of warm cookies in the oven. (Always peanut butter cookies handed down from my grandmothers recipe box)

 

The apartment caught the morning sun (our kitchen was warm and radiant before noon) and it was a shared ritual among the women of the neighborhood to bake and that laundry was done early on a wash board in the sink and hung out to dry in the sun. Crisscrossing the back lawns, of the tenement houses for city blocks, there were perhaps fifty clotheslines strung out on wooden poles planted in the ground. The wash from the line often interfered with the free flap of wash on the line above or below, and I remember the sight of my mother trying to shake her wash free from tangles of sheets and trousers.  While she was pulling at the line she also might be calling “ Lind-a-a or Jess-ee-ee You there, Lind-a-a?” Her voice would go up an octave then down an octave and, “you kids all right?’

 

I gradually realized that much of what I had grown up believing was California in the early years was not a Beverly Hills life style.  The myths of Beverly Hills, had little to do with my part of the town.

I knew canyons, hills, dirt roads, the city lights glistening off Mission Bay’s deep waters, but no tree lined streets, no Nannys, no in house clothes driers.  I never knew  families who lived in homes with their names arched over entrance gates. I knew ponds, not sculptured swimming pools. Streets in my neighborhood were called ”The Housing Projects.”

 

It was there in the Pacific Beach, tenements in an upscale beach area of San Diego, nestled up against the foothills, looking to the south are the million dollar views that are now known as the ”La Jolla Scenic Drive.” It was a place for the misplaced, women made widows by world war two, factory workers, alcoholics, the unemployed workers laid off from the aircraft industry, single parent families, which we came to learn were not always socially acceptable, we were all low income families with our monthly rentals based on a sliding scale for the less fortunate.

 

I recall friends were scattered throughout the buildings in the project, calling out to one another all during the day to make various arrangements...(my mother) running commentary on the life outside the window was my first taste of intelligence: she would convert gossip into knowledge...always finding the good in people, in life, always looking for a way out of these dwellings we called home.

 

I see now that it was there in the tenements that she taught us our most valuable lessons. Lessons that would follow us through our lifetime. We came away with hope, faith, and the courage that there was never anything that we could not achieve if we set our minds to it. If you wanted a beautiful garden you planted one, you nourished it with love, gave it water, and plucked out the unwanted weeds. Always keeping it growing well and thriving with constant care.

 

Many time after the big bulldozers came and knocked down the projects, scraping the remains off to the side to be carried away to the city dumps. I would drive to La Jolla Scenic Drive, park my car along a side street and gaze out to the city views below. I could feel it coming, the big smile on my face and knowing that this place was once mine. I had seen the best view through a child’s eyes, perhaps the most innocent of times.

 

 

In 1994 the family decided that Mom, Dad, and my Brother would relocate from California to Oregon where my brother and I could give them both the love and care that they so deserved. Mom would be residing in a nearby nursing home while Dad would become my new neighbor. Dad had been diagnosed with prostate cancer that spring and both he and the doctor had opted for no treatment of his disease. He would be relieved of his many years in the primary role of caregiver of my Mother. Our focus was on improved care and support for both Mom and Dad, to ease the burden of their illnesses.
 

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Finding a Place for Mom

I remember my Mother joking, and she would say; “When I get old and can’t remember who I am, just lock me up in a home for the forgettable and throw away the key. I never want to be a burden to you kids.”  I understand now that this disease was one of her greatest fears. Alzheimer’s disease has a gradual onset. Symptoms include difficulty with memory and loss of intellectual abilities severe enough to interfere with routine work or social activities. The Alzheimer’s patient may also experience confusion, language problems (such as trouble finding words), poor or decreased judgment, disorientation, in place and time and changes in behavior or personality.

 

How do you find a good care for a parent who can no longer stay at home? How do you know what to look for, where to go?  It is mind boggling, I found that the traditional nursing homes had nothing to offer the resident with dementia.  Nothing except to be nursed. Think about it. It is based upon nurse-patient physical care patterns, requiring the patient to be obedient, to conform, to conform to treatment requirements.  It also demands competence.

 

First and most important the Alzheimer patient needs a relationship.  More specifically, they need physical activity, kindly structure, no memory demands, no conformity demands, a supportive environment for the individual with dementia. Look around.  Look for somewhere quiet and kindly. Look for somewhere you wouldn’t mind living yourself with home-like surroundings, bright colors, an activity-based day, safe wanderings, spiritual growth, pets, music, and great deal of individual attention.

 

Dr Gary Small, a psychiatry professor and director of the University of California, Los Angeles, Center on Aging praised this approach to aging. That “nonpharmacologic treatments can be effective and have profound impacts on people’s quality of life.’

 


And yes, I did say mind boggling...  Care facilities, there names are all so confusing, it leaves me wondering am I really in the right place?  Nursing Home, Nursing Center, Care Center, Elder Care, Interim Care, Health Center, Rehabilitation Center, Residential Inn, Foster Home, Assisted Living, full care, short term, long term. How do we know how long it will be? And they all have such peaceful names: Emerald Valley, Coast Fork, Cottage Grove, Good Neighbor, Sweetbriar, Magnolia Gardens, Country Manor, Green Valley, and my personal favorite; Gateway Living Residential Care, what are they thinking anyway.  Gateway to where? the Pearly Gates? And  suddenly I hear Led Zeppelin’s “Stairway to Heaven” playing over, and over in my mind.

 

They all have nursing home odors, there’s a ten-year waiting list, it’s in a bad neighborhood, they put four in a room, It’s a mile long hike to the dining room, they want money up front, they take only terminal cases, and the eternal fear that Mother won’t fit in, as she has grown totally uninhibited, she now takes off her clothing, and sits on the edge of her bed exposing herself for all the world to see. All this, and she still refuse’s  to wear depends. Go figure... And while we are on this subject, when searching for the ”perfect nursing facility” for your parent, never let them know about your parents incontinence. They charge more, and this becomes a whole new  “level of care”; it’s called MONEY. Later when they tell you of the incontinence, just look at them and scream out “Tell me now, what have you done to my Mom?”

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The Great Weekend Shift

I pack Mothers bags, for her new home and this is the saddest time for me, realizing how much we ask of her. The one thing Mother was always proud of, was that she had the good sense to stay off airplanes, “they are dangerous, and a good way to get yourself killed,” she would say. It was her feeling that only birds were meant to fly. After all, she had come 83 years thus far, accident-free. Her only mode of travel was by automobile and train.  It was in the spring of 1994 that she boarded her first jumbo jet, believing that it was the Amtrak Silver Liner.

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It was my daughter Kimberly, who would transport her Grandmother from San Diego, via United Airlines with one lay over at San Francisco International Airport, before their arrival at Eugene International Airport, in Oregon. Kimberly being an “Emergency Medical Technician” (EMT) was prepared for the ride of her life, and armed with sedatives for Granny, prescribed by her doctor “just in case of an emergency.”

 

The doctor had promised Kimberly that her grandmother would be given “a little something to relax her ”for the flight. We felt that is she was aware impending danger, she would surely try to escape the jumbo jet.  Mom arrived at the airport in a comatose state right up to the boarding ramp of the plane, where she looks up and  ask “Kimberly, where are we going? Kimberly responded, “for a train ride Grandma, just for a ride.”

 

The airlines promise you wheelchair access. What they don’t tell you, is that a regular wheelchair does not fit down the isle of the aircraft. Isle chairs are great inventions, but...you board the plane with the patient is in a regular wheelchair, you then transfer them to an isle chair, from the isle chair to the assigned seat, only to arrive at your lay over to remove the patient from the assigned seat back into the isle chair , then again into their own wheelchair. You then debark the plane, and start all over again.

 

Kimberly was struggling with the transfers from chair to chair due to her Grandmother’s recent hip replacement surgery. The hip surgery had left Mom totally immobile, and unable to support any of her own body weight at all. Kimberly was lifting her Grandmother’s full weight from seat to seat. (Hint: you must be very strong, and have lots of muscles)  I wonder, have the airlines ever taken a good look at a handicap van?

 

As it tuned out, Mother did well, she was alert, and a good traveler..While they were taxing down the run way at San Francisco International Airport, she looks amazed as she questions the “Big Plane at the train station,” which Kimberly, quickly passes over and gives a sigh of relief.

 

Mother was content looking out the window at the passing clouds and commented on the speed of the train only once. She turned to Kimberly and said “This Ole boy is moving right on out.” Kimberly smiles to herself, and she replies,  “Yes, Grandma, he is.” They arrived in Oregon in good spirits, When I greet Mother at the airport she grins and reassures me, “it was a pleasant train ride.”

 

Mothers knees are locked against her wheelchair. Her jaw is set the way she does when something doesn’t please her, and we enter the doors of her new home. “Linda” she finally says to me, “you take me home now or just drop me off at the bus stop, I am going home!” I reply “Don’t be Dopey Mother.” I could feel her eyes peer through me as she shouted “This is not dopey, this is facts.” I wondered at this moment if she was really aware of the facts “Oh Mother, you’ll like it here.” “No I won’t” she says, “Mother how do you know if you don’t give it a chance.” She exclaims...  “I Know What I Know.”

 

No use saying any more when Mother was like this, so we picked up her bags and move forward to the admitting office. I don’t remember much about the next few days after that. I spent them in a foggy haze. I do remember thought, I lay on my bed, feeling extreme guilt and wondering what Mother could possibly be thinking, and I kept dreaming that I was falling, and endlessly spinning through the air, and I would always awaken just before I hit bottom.

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Adjusting to a New Home

It didn’t take long for us to discover that Mom was an escape artist.  She spent many hours of the day sitting in her wheelchair at the nurses station. “Excuse me, nurse excuse me, can you call me a cab” she says. Finally getting the nurses attention she replies “I’m sorry Mrs. Stuart there are no cabs on call this evening” “Well then, do you have a bus schedule so I see what time the bus stops by here.” She had made up her mind that she was going home, home to San Diego. With these failed demands she quickly learned that she could tug on the plastic band of her ankle alarm, (which would sound a loud ringing alert if she attempted to exit any exterior door) stretching it out and slipping her ankle free she would then throw the alarms away or cleverly hide it. Once I found an ankle alarm in her water pitcher by her bedside.)

 

She ventured further from the nurses station to the front door of the care facility. She would sit there smiling at the visitors who were coming and going. One warm summer night she flashed her pretty smile to just the right person saying  “Oh, what a lovely evening it is. ”This person all but held the door open for her as she rolled her way to freedom and the nearest bus stop. A half hour later she was found by an off duty nurse headed south on Highway 99 in Cottage Grove, Oregon. Soon after the administrator installed key pad with a special code for all visitors who departed the facility. To this day there hangs a sign at the front door, “Beware of Wandering Residents.”

 

With the loss of sense of time as we know it and the ability to entertain oneself, Mom could make visiting family members feel guilty with remarks such as “ Where have you been?” “Do you have to leave?” “When will you be back?”

And I used to say something like I’ll be back on Friday and she understood that. (Perhaps six years ago) Now I say I will be back later.

One afternoon I was manicuring mothers nails, I could see the concern in her steel blue eyes, as she lay on her bed staring up at me.  She looked so intent and startled as she asks “ Linda, what on earth has happened to you?  Your don’t look like yourself.” I reply “Mother, do you know how old I am?”  She responds  “Well, let me see, your thirty." I tell her “no mother, I am now in my forties, your eldest son, Dale, will be sixty in August.”  The look in her eyes shows the shock that she is feeling, knowing that she must be losing her mind and she is quick to anger, as she explodes  “I get so tired of your bullshit, I don’t want to talk about this anymore." And she is quiet, as her eyes continues to search my face, as if to seek out the young women she once knew.

Perhaps Laura Thoms, says it best; “ Memory is the flashbulb picture of an emotion gathering dust in the shelves of our mind, triggered by the same feeling felt once again.”

 

At times Mother exhibits the characteristic agitation/aggression symptoms some AD patients get. Her medications has helped alleviate this most of the time, but there are occasions when she is both verbally and physically aggressive. She is totally uninhibited, when provoked she uses colorful language. Several times she has resorted to fisticuffs with the caregivers accidentally injuring them.

 

I find the best time to visit Mother is mid morning between lunch and her nap. At her present stage visiting in the evening is too stimulating for her to settle down without the agitation frequently exhibited by Alzheimer patients.

This stage is commonly known as “Sun downing.”

 

It is 89 degrees.  She wears gray sweat pants,  and a matching sweatshirt along with furry lined bedroom slippers, and complains “ it’s too hot in here”.  We go through our usual ritual ---searching for her dentures, and she is always positive that someone has made off with them. Sometimes Late at night I visualize her laying awake in her bed, listening for shuffling sounds in the hallways of people coming to steal her teeth. She always told me,”Wisdom comes with age,” and she insists that she knows what people are capable of, she explains that “just last week someone stole my Teddy-Bear right off my dresser.”

 

As for myself, I found that there were days when I feel overwhelmed at the role I had taken on. For I had become caregiver, advocate, financial planner, and still my role is a constantly changing one. As each new symptom appeared for both Mom and Dad I am continually trying to preserve a sense of emotional calm for them while educating myself about their disease and about their needs.

 

As I  approached the fourth year of care giving my parents I realized my own emotions were catching up to me.

There were feelings of fatigue and emotional stress, and I was having more bad days than good ones. I felt prolonged periods of loss and grief. I felt anger, sorrow, guilt, and frustration, a feeling of being alone.

 

One of the hardest emotional issues of care giving is the distance that grows between you and your loved one. There comes a time when the impaired person is no longer the person you once knew. We can find emotional support and good suggestions for managing difficult problems from members of support groups. And never have to keep things bottle up inside. People have different ways of expressing feelings. Some talk with counselors, psychologists, social workers or members of the clergy. Still other confide in family and friends. We all benefit by taking time to think and sort out feelings, find ways to let your feelings come out.

 


The Alzheimer’s Association is the largest national voluntary organization dedicated to proving support and assistance to Alzheimer’s patients and their families. The Alzheimer’s Association has more than 3,000 support groups and 220 chapters nationwide. For more information on AD, or to volunteer in the fight against Alzheimer’s Disease, call the Alzheimer’s Association at their toll-free number for the locations of the chapter nearest you. You may also locate the chapter nearest you using your personal computer online service. (Welcome to the Internet, my lifeline.)

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Lost in Cyber-space

In solitude we give passionate attention to our lives, to our memories,

to the details around us.

--Virginia Woolf

Unless you have never lived alone, most of us don’t have a room entirely our own. The important thing is that you create a space to call yours alone, with only your belongings, your stuff, a place to reflect.

 

I call this small room my space, it has it’s own decorous flavor, whitewashed desk, fan (a must), telephone, a futon bed, for those late nights when you just can’t make into the bedroom, a bookcase filled with computer magazines, books on how to discover the “World Wide Web” Program manuals, stacks of my favorite CD ROMS, and piles of clutter. ( my stuff) Photographic equipment, unopened mail, favorite photo albums, empty coffee cups, and all the creative projects that I have ever thought about beginning.

 

Now to justify this clutter,  “One of the advantages of being disorderly is that one is constantly making exciting discoveries.” I like that!

On the walls of  “My Space”, hangs three framed pictures from Time Magazine covers, Richard Nixon, dated 1956, Magic Johnson 1996, and President Bill Clinton, November 3, 1992. I am never certain if this is a political statement or just a reminder to beware of what you ask for. I also have hanging on the wall high above my desk a glorious white kite, wrapped in a rainbow of bright colors, with a hot air balloon in the center of the kite. It’s there to remind me of the many facets of life

 

This is my space, a place to escape to, late at night, knowing that everyone is soundly sleeping, and with the tasks of the day behind me I am free to explore, and discover the Web. (Surfing the web) I seek out web sites on the internet that offers a wealth of information regarding Alzheimer’s Disease. .Not only is it educational, it also gives me instant answers to so many questions that I have whirling around in my head regarding the roll caregiver.

 

Soon I discovered America Online, and The internet. I visit chat rooms, support groups, I read articles of everything  imaginable... Many of the people in chat rooms have made up goofy names to protect their anonymity. Sometimes they even speak their own language: LOL (LaughoutLoud) ROFL (rolling on the floor laughing) BRB, (Be right back) WTG, (way to go.) They bring many smiles to my face. I find myself wanting to make contact with those who have no expectations of me and hope that there is someone out there who will listen, someone with compassion who had walked in my shoes.

 


I meet many new personalities with stories that parallel my own in regards to aging parents and illnesses that we don’t understand, coupled with emotions that soon make us stead-fast friends. It is here among the unknown faces of my monitor that we share laughter, Humor, express grief, sorrow, and loss. But our common link is to be responsible children of the elderly... For we are the caregivers.

 

Late one evening while in a chat room online titled “Alzheimer’s Support” it was apparent that we all needed some comic relief.  Our fingers were flying across our keyboards as we typed in jokes and funny antidotes of our family member. It was working and we were all laughing, and sending smiles :-) The goofy names were on a roll...

 

“Hey, what is the benefit of Alzheimer’s? You get to make new friends everyday!”  One woman’ who is married to a husband with Alzheimer’s, found at least one positive side to her spouse’s illness. “He forgets he’s married,” she said.  “He proposes to me every morning.” When it came time to discuss his mother’s burial wishes, a friend of mine asked whether she wanted to be cremated or buried. His mother, who had Alzheimer’s disease replied, “Surprise me!”

.It has been said that “humor is the best medicine.”  Humor is a great stress reducer, it helps us deal with life’s hardships, it makes us feel less defensive. This night as I said good night to my online friends my spirits had been lifted. It was great that we were learning to laugh at ourselves..

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Happy Holidays

Holidays in our family have always been joyous.  Times of great gatherings:  Mom ,dad, sisters, brothers, kids, grandkids, nieces, nephews, friends invited from far away places, neighbors, family pets...heck, we didn’t care. All were welcome.  Just sharing the joy of the season and togetherness would light up any Time Square sized Christmas tree. And what about Mom’s cooking.  Is there anything better than Mom’s Christmas dinner?  She began preparing the goodies weeks in advance.  Everyone had their favorites among the many delicacies that would delight any gourmet’s pallet. There were homemade candies, mom’s famous blackberry jam cake, both pumpkin & pecan pies and cookies galore. Let’s not forget the cranberry tarts; little ones with snow flake crust, warm from the oven with a dab of whip cream. Of course there was the obligatory fruitcake too (no one ever ate that).  She was our Bon-Appetite Momma.  She would always tuck away Christmas tins packed full of homemade fudge to send home with her grandsons as parting gifts. (She was a joy)

 

I think there are times all Moms look at there daughters and smile to themselves thinking , “payback is good!”  I was  about to find out.  The holiday time approached the first year mother was in a care facility.  It was decided that this would be her first outing away from her new home.  Mom would be joining the family at my house in the country for Christmas dinner.  Great expectations ran rampant.

 

There was massive shopping to do, cooking, silver to polish,  trips to the mall for the prefect gifts, sleeping arrangements for out of town guests and transportation from the airport.  I also felt the need to have the house in perfect order.  It was going to pass the white glove test.  Somewhere in there I needed the time to finish decorating six more dozen sugar cookies.  Oh yes--flowers.  There must be fresh flowers.  Yet another thing to add to my ever growing list. Finally, the stockings were hung and the tree was trimmed.  On Christmas eve I stayed up into the wee hours making fudge and a cheese cake. (rats, I forgot the Christmas tins!)

 

If only I could turn back the clock... I don’t dwell on the clock thing, or the past all of the time...just once daily when I get out of bed and head off to the bathroom.  I stop, to look at the person in the mirror who is peering back at me. She looks like she just broke the sound barrier going backwards.  It’s always the same.  I stare back and ask myself  “who is that?”  This morning I knew the answer to that question.  I had turned into my mother.

 

I selected just the right new outfit for mother to wear and called the care facility leaving specific instructions for mother to be dressed, groomed, and ready to go on Christmas day for her outing.  Dad had a fresh new  haircut for the occasion. He was so excited that Mother was coming home.  This would be his best Christmas ever.  It was their day and I just knew everything would be perfect.

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Christmas Dinner

As I entered her room at noontime on Christmas day, anything that could go wrong did go wrong.  She would not get out of bed that morning, and still wore her pajamas.   She needed a shower and had refused all of her daily mediation.  Mother was certain that medications were just a conspiracy and that all the doctors where quite simply  “Dope Pushers.”

 

“Merry Christmas Mother”  She responds “Oh it’s Christmas already and I haven’t even done any shopping!”  “Not to worry mother, everything is taken care of.  We are going to my house and everyone is so excited about seeing you.” “Well, I don’t know about that.  I can’t ride too far.”   “I know Mother.” I reassured her.  “It’s just a short trip.  We’ll be there soon.”  We made the transition from the wheelchair into the car only for her tell me “I am not wearing this seat belt. I don’t like it and that’s all there is to that.  If I have to wear this thing I’ll just stay here.”

 

What was supposed to be a 6 mile, twenty minute round trip to the nursing home and back, turned into an hour long running battle of the minds and I was losing.  All this while I had sixteen dinner quests awaiting me at home.  “Linda, where are we going?”  “To my house mother.  It’s Christmas and everyone is waiting for us.”  “Well, you stop this car now and get me out of these straps.”  “We’ll be there in just a few minutes.” I pleaded. “Where is your dad at?” she demands.  “He’s waiting at home for us mother.” “Did he work today?” “No mother, dad is retired now.”  “He is?” “Where do we live?”  She turns and looks straight at me.  “Dad lives with me ” “Do I live there too?”  “No Mom.  Remember, you hurt your hips and had to have surgery.   You stay in a special place where they can take good care of you so that you don’t ever hurt yourself again.”  “Linda, where are we going”

“We’re here now Mom.”  “Who lives here?”

 

“Merry Christmas everyone” I proclaim as Mom and I are greeted by the family.  “Merry Christmas Grandma,” Lysa says, as she hugs her grandmother.   Everyone is so excited as we feverishly exchange hugs and kisses.  I greet loved ones that have arrived since I left to pick up mom.  Everyone is starved.  The aroma of our anticipated feast fills the air as my brother Jesse gently tugs at mother’s wheelchair to lift it up the stairs and into the house.  Mom looks over her shoulder at him and asks ”Jesse, where are we going?”  Dad is standing in the background, tears of joy trickling down his cheeks as he awaits his moment alone with his special Christmas Princess.

 

Onward to the meal!  This is overwhelming.  Where do you put all this food?  It’s all just a matter “of good timing” I told myself.  “I can do this!”  What was I thinking-- was I Martha Stuart?  Spicy herb roasted nuts, Mandarin salad with Asian dressing, roast turkey, Chardonnay gravy, cornbread, sausage, dried fruit dressing, peas with pearl onions, candied yams, mother’s garlic mashed potatoes, brandied cranberry sauce, yeast rolls, and for dessert-- black forest chocolate cheese cake.

 

“Dad, bring Mom in the kitchen and keep me company while I finish up dinner.”  Dad began gingerly maneuvering the wheelchair through the kitchen.  Carefully negotiating  past the mounds of pots & pans and trays of food.  He finds just the right spot to park mom.  She sits there staring out the kitchen window, while putting her fingers into and tasting any food within her reach.  Visions of “It’s a Wonderful Life” starring James Stewart and Donna Reed, kept popping into my head. There was George Bailey, broke, and in despair over a saving and loan deal gone wrong. He’s wishing he’d never been born and about to jump off a bridge when his guardian angel saves him.  For me, that bridge was looking pretty inviting as I wondered how to serve all this food while it was still warm?  Where was my guardian angel...She was sitting in my breakfast nook in a wheelchair wondering where she was and who lived here.

 

I was all but in tears and felt I needed to try the positive approach.  I said to myself again “It’s just a matter of timing, I can do this.”  Lysa and James (my son-in-law) entered the kitchen with a look of amazement on their faces upon seeing this piled high mess that I have made and wondering to themselves how they can help me to expedite this meal as quickly as possible.  They gently  ask “Mom, can we help you get dinner on the table?  Is there something we can help you with?”  “Oh no kids, thanks.  It’s nice of you to ask but I don’t even know what I’m doing myself.  Lysa, if you get the drinks, I think we’re almost there.”  “Okay Mom.  Take it easy.  Everything is fine.”

 

Everything is fine.  Really?  Everything that I had read said “it takes one person with one oven to prepare this meal”  Were they talking about me?  Where is the person who wrote these helpful hints: prepare salad, bake rolls, 1 hour ahead bake casseroles, peel and cook potatoes. 20 minutes ahead mash potatoes. 15 minutes ahead remove turkey from oven, put on platter and keep warm, while making the gravy and keeping it warm. 10 minutes ahead heat extra dressing, cook peas and onions. 5 minutes ahead warm rolls, warm cranberry sauce, garnish turkey platter.

 

Let me get this straight in my head.  I should now have turkey, casserole, dinner rolls, and dressing in the oven. First of all, I wasn’t here the first hour before meal time.  I was in tears.  I wondered how big was this one persons’ oven anyway, and where did they find a kitchen big enough to house it?  I had 5 minutes to mash the potatoes before I remove the turkey and make gravy.  The potatoes?  Oh no, I never turned on the burner to cook the potatoes.  What-- no mashed potatoes on Christmas--unthinkable.  I felt like kicking the kitchen stove.  At this same moment I have a houseguest confiding to me “All year long, I’ve been dreaming about you homemade eggnog!”

 

Just when I was scooping the dressing from the bird, I heard Mom ask Dad, “Vern, who lives here” Why Honey, this is where I live” She looks totally shocked and confused as she says “Oh no you don’t.  I think it’s time we start home.  We have a long drive ahead of us. You tell me who lives here now!” “It’s Okay honey,” he says.  “I told you Opal, I live here with Linda and Dean”   At that very moment Mom blurts out “you're more full of shit than a Christmas goose!.”  I was absolutely stunned.  I felt so hurt for Dad.  At first I just stood there astonished.  Not only had I never heard this expression before, I never ever imagined my Mom saying such a thing.  I couldn’t believe my ears.  Was all of  this really happening?

 

A hush of silence fell over the entire house.   I turned to see 13 dinner guests crowded in the doorway of my kitchen, wide eyed and in total disbelief of what they had just heard.  In that instant, my tears turned to uncontrollable tears of laughter, they were running down my face, and my sides ached.  I knew I had never laughed this hard in my whole life.  I was thinking that they all needed to lock me up in an asylum or put me in the bed next to my Mom at the Home.  I was falling down with laughter like a mad woman.  It became contagious.  Soon everyone joined in.  We were all laughing hysterically and slapping our hands together.  The image of this moment would be forever etched in our minds in slow motion for years of replay.  We were completely jubilant that we could find the humor in the events of this day.  That was the only mention of Christmas that our honored guest, my Mother “The Christmas Princess,” ever made that year.


A few days later as I sat at my mothers bedside for hours (she was having a bad day) looking through magazines, brushing her hair,  browsing through family photo albumins, doing anything that I could to help her overcome her lethargy. “Mother it is so dark in here, lets open up your window blinds and let some light into the room” without it ever occurring me that she had lived in Sunny Southern California most of her life and she was totally unaware of the northwest’s forever changing winter weather.  She didn’t even know that she lived in the northwest, for her there was no place like home,. San Diego.

 

As I lifted up the blinds I was surprised to see the unexpected blanket of newly fallen snow. It glistened on the roof tops and the trees outside her window bowed down with the weight of it. I tuned to look at mother.  She was wide eyed, her mouth was open as she stared out the window, she looked totally amazed as she squeaked out “Lind-a-a, Where-In-Thee-Hell-Am-I?”  I can only imagine how she felt.

 

Mother was born in a small town in the heart of the Ozarks, Tuscumbia, Missouri, the “show me state”, and that particular term became her motto when I reached adolescence. She wants to keep me on the right path through life and she always tell me “don’t just tell me, show me, I’ll watch your feet not your mouth.” I sometimes wonder to myself, would she think I’m still on the right path and moving in the right direction in order to meet all of our needs?

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A Happy Birthday Moment

September ninth, it is Mothers Eighty sixth birthday. She is confused but tries to act like she knows everything that is going on around her. Mostly she wonders who her Great Grand Son Dylan is. She keeps looking from the child to his Mother, her Grand Daughter  as if to say ”Lysa your not old enough to have a baby.” She eats her birthday cake with her hands...as the sticky goo runs through her fingers, no one offers a fork.. This is how she likes it. She opens a few gifts and looks up to ask “where do I go now?”  She wants to please and belong, but the confusion prevails.... She is once again lost.

 

There are times when I can look into her hazy blue eyes and I feel as if I am watching Time Lapse photography as I stare into her eyes I can see her mind switching tracks. Suddenly, her eyes clear, she smiles and asks...”oh Linda, where did you come from.”   Aww, a perfect moment...for me. At this moment I am once again her daughter.

 

As I see watch  my mothers progression of AD I also realize that the how quickly these changes occur in an Alzheimer patient will vary from person to person. Eventually, the disease leaves its victims totally unable to care for themselves. The course of the disease usually progresses an average of eight years from the time the symptoms first appear, although Alzheimer’s disease has been known to last as long as 25 years.

 

Mother has taken two bad falls that resulted in hip replace surgery (both hips), she is in congestive heart failure, has suffered a heart attack, mini stokes, diabetes, pneumonia, she deals weekly with painful treatment for the cancerous growth on her neck.  I heard friends say “she’s eighty six years old and her will to live never lessens.” I wonder to myself if it is her will to live or does she just not realize what she’s living?

 

Perhaps it’s easier for her beginning each day with a clean slate having no knowledge or recollection of her continual pain and suffering, and just being aware that she doesn’t feel well for now. Her life is like a motion picture, but she only has to deal with it a frame at a time not knowing what’s came before or where it’s leading.

Yesterday is History, Tomorrow is a Mystery, Today is a Gift. That’s why they call it the Present....Author Unknown


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Thinking Out Loud

In all honesty, I don’t know if this page in time is about trying to save a marriage or the joys of an impending divorce. Maybe it’s just getting on with one’s life.  Oh god, sometimes I think I can’t do this any longer. There is so much anger and bad feelings, our marriage is falling apart. The stress of the past four years in the roll as caregiver is taking it’s toll on both my husband and myself.  Not only have I been tending to needs of my parent’s, but those of my husband’s mother as well. My Mother-in-law, Florence had become quiet ill two years ago and was confined to a nursing home in a nearby community.

It was in the early hours of the morning in February 1997, at 5:00 am that we received a phone call that Florence had passed away suddenly to complications of pneumonia. I felt anger towards Dean (my husband) feeling that he had negative response to his mother’s death. I viewed the response as being negative because I see no response in him at all. There was no grieving, no tears , at all. I wonder if he saw mourning as a weakness. That same morning promptly at 7:15 am Dean left for work, as I prepared to make final arrangements for his mother and her personal belongings. He declined  time alone for a last visit with his Mother before the mortuary delivered her remains from the nursing home for cremation..

 

I was left wondering if his reaction was shock or disbelief, rejection of reality, and if it was just total disregard. And if so  how could I ever expect him to understand or to even comfort me while I’m feeling so much grief at the thought of losing my own parents. It was a scary feeling, so alone with my own thoughts, and I so wanted to comfort him but he is insistent that he needs no comforting, he says “I’m fine.”

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All Happy families resemble one another, but each unhappy family is unhappy in it’s own way.  - Leo Tolstoy

Into our lives a little rain must fall. but once or twice it seems a devastating flood, and I was barely keeping afloat

Reoccurring events kept creeping into my dreams, there were imagines, flashbacks, the feeling of emotional numbness and detachment from everyone around me, and there are sleep difficulties. I would sit in front of my computer going from chat room to chat room, playing computer games and popping melatonin ( a sleep aide) in hopes that it would give me a peaceful nights rest.

 

It is fight or flight,  I pick on this man... I find fault with everything. I am always looking at where I want to go in this life...And is he coming along too?  Sometimes I fantasize about another life, still in a country setting somewhere... maybe sitting above a lovely river or a cabin on the edge of a beautiful  lake, there are chickens in the yard, and nowhere to be found are anyone’s parents. In my images I am always running away. (It’s called burn-out!) I need to get rid of this fantasy life I have planned, so as to have the life that is waiting for me!

 

Our situation continues to worsen and we grow further apart. I pick and he tries to control me though guilt. It’s hard to experience fulfillment in a relationship which is not equal and reciprocal and we are both guilty of these factors.

Dean looks to me for personal affirmation and self-esteem, he constantly reminds me that he can’t continue on in his life without me, that I am responsible for his happiness, he views me as depressed, and knows that if I could seek out more positive feelings that we would both be ok.

 

He has overwhelming fear that I will leave him. The more psychological games that are played and manipulation of guilt that he imposes on me, the more I distance myself and withdraw from him. I can’t be responsible for anyone else’s life. I just won’t! Sometimes I think if I should ever remarry the man would have to be the same age as I, ( I am several years older than Dean) and his mother must be deceased!  That is my prerequisite for a happy union and longevity, somehow I see these requirements as stress reducer.

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Treasures...

.  I remember going through Mother's belongings.   There were things that she had so carefully tucked away in her dresser drawers...always with a pretty sachet (usually Lily of Valley).   I found beautiful lingerie; all neatly wrapped in a lovely assortment of pastel colored tissue paper.  There, nestled in her bureau, were years' worth of Christmas, Birthday, and Mothers day gifts...All kept for a special occasions.

 

As I sat with my Mother on that last day at Coast Fork Nursing Center 
(a care facility for Alzheimer's patients)  I wondered  if she knew 
how much I Loved her and that she wasn't alone.  

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Something to think about...I read this is morning and it made me weep for my own mother.

LIVE LIFE TO IT'S FULLEST~N~FINEST

 My brother in-law opened the bottom drawer of my sister's bureau and lifted out a tissue wrapped package.  "This," he said, "is not a slip.This is lingerie."  He discarded the tissue and handed me the slip.  It was exquisite; silk, handmade and trimmed with a cobweb of lace. The   price tag with an astronomical figure on it was still  attached. "Jan  bought this the first time we went to New York, at least 8 or 9 years  ago. She never wore it. She was saving it for a special occasion. Well, I guess this is the occasion."

 

He took the slip from me and put it on  the bed with the other clothes we were taking to the mortician. His  hands lingered on the soft material for a moment, then he slammed the drawer shut and turned to me.  "Don't ever save anything for a special occasion.  Every day you're alive is a special occasion."

 

I remembered those words through the funeral and the days that followed  when I helped him and my niece attend to all the sad chores that follow  an unexpected death. I thought about them on the plane returning to  California from the Midwestern town where my sister's family lives. I  thought about all the things that she hadn't seen or heard or done. I  thought about the things that she had done without realizing that they  were special.

 

I'm still thinking about his words, and they've changed my life. I'm reading more and dusting less. I'm sitting on the deck and admiring the  view without fussing about the weeds in the garden. I'm spending more  time with my family and friends and less time in committee meetings.

Whenever possible, life should be a pattern of experience to savor, not  endure. I'm trying to recognize these moments now and cherish them. I'm  not "saving" anything; we use our good china and crystal for every special event such as losing a pound, getting the sink unstopped, the   first camellia blossom.look prosperous, I can shell out $28.49 for one small bag of groceries  without wincing. I'm not saving my good perfume for special parties;  clerks in hardware stores and tellers in banks have noses that function  as well as my party‑going friends'.

"Someday" and "one of these days" are losing their grip on my vocabulary. If it's worth seeing or hearing or doing, I want to see and hear and do it now. 

I'm not sure what my sister would have done had she known that she wouldn't be here for the tomorrow we all take for granted. I think she would have called family members and a few close friends.  She might  have called a few former friends to apologize and mend fences for past  squabbles. I like to think she would have gone out for a Chinese dinner,  her favorite food.

I'm guessing I'll never know. It's those little things left undone that would make me angry if I knew that my hours were limited. Angry because I put off seeing good friends  whom I was going to  get in touch with someday. Angry because I hadn't  written certain letters that I intended to write one of these days.

Angry and sorry that I didn't tell my husband and daughter often enough  how much I truly love them. I'm trying very hard not to put off, hold back, or save anything that would add laughter and luster to our lives. And every morning when I open my eyes, I tell myself that it is special. Every day, every minute, every breath truly is...a gift from God.

By Ann Wells
Los Angeles Times

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Opal Stuart  
September 9,1911 - September 15, 1998  

Vernon Stuart
November 1, 1915 - April 20, 2001

 


©Copyright Linda Martindale 1999/2003
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Fort Rosecrans, Opal Stuart

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