Finding a facility.

"For all the fancy trappings and smiling activity directors, the realities of Dad’s disease and his future faced us everywhere. Illness and dementia could only be dressed up and disguised just so much. Bone thin women, shuffling aimlessly down hallways, eyes fixed on nothing. Frail, hunched men mumbling and rocking on the couches of gaily-decorated activities rooms. An old woman frantically approaching people in the hallway, asking each one if they knew where the bus stop was. Hallways redolent with the smells of past meals, antiseptic, and old age. Every facility I visited, I saw first- hand what Dad would become, what he would suffer, and my heart quailed within me.
I was also intent once again that Dad be allowed to inhabit whatever space and time he wanted; the old approach to dementia had been to try to keep the patient in the present at all times. It was called “reality orientation” and the idea was to correct patients when they wander in time, telling them the year and that what they are thinking or remembering never happened. As a practice, I thought that was just ridiculous. Most places, fortunately, subscribed to my philosophy; as the rate of dementia had grown, more natural and humane practices were being developed, and patients were encouraged to dwell in whatever part of time and memory that comes up."

Proposal

Well, I've just sent out my second proposal, a leaner, meaner better version thanks to my writing coach, Waverly. Keep your fingers crossed!!

Pictures part 2

Walking at Green Lake one afternoon, he pulled out his little disposable. “Joy, go stand over by that tree. I want to take a picture.“
“Oh Dad, you don’t want a picture of me. You should take a picture of the lake, its beautiful today, so blue and calm.“ I said, trying to dissuade him.
“Why don’t you want me to take your picture? You’re a beautiful lady.“ He cajoled, fussing with his little camera.
“Okay, okay, just count to three, okay? Otherwise I look like a grinning idiot or my eyes will be closed.“ I joked as I walked over to the tree he pointed out. Just as when I was little, there was a delay; film needing to wound, a laggard flash, dissatisfaction with the pose and setting. I stood, smile settling into concrete, teeth drying out.
“Hold on, I think I’ve got it now.“ He said, holding the camera up to his eye.
“I just love these spontaneous photos.“ I said to him wryly. He looked at me for a second, then we both burst out laughing, camera momentarily forgotten.
A minute later, he grabbed my shoulders. “I love you, Joy!” He kissed the back of my head and held me for a brief moment.
“I love you, too, Dad” I replied, smiling up at him.

Pictures part 1.

"When I started living with Dad, I started to notice how many pictures he took. He never seemed to be apart from his little disposable cameras. Every time we went to Safeway, he made a quiet detour to the photo counter to either pick up or drop off pictures. I saw them in envelopes around the house. Stacks of images of the Seattle skyline; loving pictures of the lake from his beach; his aide, Del smiling as he loaded groceries into his car. There were a lot of pictures of Del, as if Dad was trying particularly to imprint Del permanently onto the world, which wasn’t surprising as in two years Del had become my father’s best friend. Del was his touchstone, a stocky, stalwart constant in an ever more confusing world, and the only person who could keep up with him on his marathon walks.
I supposed the pictures were his memorybook, another way to remember what was going on around him. I wondered if he thought that by looking through the view of a camera, he could freeze the moment onto his mind as well as onto the blank celluloid canvas. A photographer for as long as I could remember, he used to use much more sophisticated equipment than a cardboard camera. That was all gone, now, relegated to some forgotten closet in the house. I think he stopped taking pictures because he would have been forced to admit that he enjoyed it and was good at it; that he was actually prepared to give precious time to something that was only a hobby, and not work."

Leaving reality.

"It continued to surprise me how much I actually enjoyed just spending time with Dad; there was something restful about being with him. He accepted me pretty much as I was, we could talk or not depending on how we felt. The unfortunate side effect of this was that sometimes I felt like I got very little intelligent conversation and wasn’t using my brain, a sensation that a lot of new mothers probably felt. It seemed to come instinctively to me, how to deal with him, how to speak to him; it surprised me. I just took him as he was, and I had decided before I even moved in with Dad that I would never correct him or try to orient him in my reality.
For years, the common practice was to try to keep dementia patients “reality oriented”; care-givers would correct patients and try to keep them in the present day. If a patient stated that they had just finished lunch with their wife (who had been dead for years, for example) the care-giver would insist that their wife was dead and that it was the year so-and-so, firmly trying to keep them in the present. Whether it was rooted in people’s fear of mortality, or the fear or discomfort of family members, this practice actually achieved nothing but to make patients anxious and unhappy. It just seemed like common sense to me. My grandmother lived for years with dementia, and I witnessed my aunt, who was her primary care-giver, correct her loudly and firmly whenever she drifted in time. Even at the time I wondered why, it made no sense to me. I did not need Dad to be present to know who and where I was, and it didn’t bother me when his mind wandered in time. If I was lucky, some story or piece of information about him or my family would come out that I had never heard before. And sometimes it was just a delusion or something his mind had twisted. Whatever pathway his mind chose to wander, shepherded along by Alzheimer’s, I would accompany him."

Mom's Clothes

"I perched on a stool, trying to decide the relative merits of keeping a bank statement from 1977 for a closed account in a bank that no longer existed. Occasionally, a disembodied piece of furniture or pile of clothes would float past me as someone made their way to the dumpster off the deck.
“Joy!“ Theresa called me into the bedroom. She had found a cedar trunk full of what she assumed were Mom’s clothes, and wanted me to assess the memento factor. My eye was caught instantly by a raucously pattern; swirls of blue, yellow and black fought it out on a background of white. Underneath was a long skirt I recognized from my early childhood. A memory flashed into my head. Me sitting on the bed watching my mom get ready for a dinner party, putting on the cream-colored skirt patterned with tiny leaves and rosebuds with a tracery of gold; spraying herself with her signature scent, Shalimar, and waiting for the moment I knew was coming, when she would spray a little perfume on my neck as a treat.
The chest was full of a stash of Mom’s homemade and stylistically questionable clothing. For years, Mom had made clothes for herself and for us. While I could say with confidence that sewing was not her greatest talent, her sartorial skills, such as they were, had provided us with many garments. Unfortunately, she found most of her fabric on remnant tables and at garage sales, so the quality and tastefulness of the materials was often a little iffy. In the excitement of our first ever trip to Hawaii as a family, she found yards of different Hawaiian fabrics and made us dresses and halter-tops. The fact that they gaped alarmingly at the side, exposing my adolescent chest to the world was immaterial."

First Day

I assigned myself to look through papers, of which there was quite a bit, as I was the best judge of what to keep and what to toss. Jeremy operated the one measly little shredder to start making a dent in the boxes of stuff I deemed valuable enough to shred but not to keep. Alix got started on the kitchen, putting anything we thought worth selling in boxes and hurling everything else into the dumpster, including all the old boxes and cans of food, and all the old food out of the refrigerator. In my Mother’s baking cupboard, bags of flour and sugar from before her death rubbed shoulders with crusted baking powder and spices. The kitchen was a grimy mish-mash of survivalism and hand-made Mother’s Day gifts, still hanging on the walls where my Mother had placed them. Her collection of antique and unique bottles were displayed on two shelves, and the top of the refrigerator teetered with old cookie and biscuit tins. A griddle, thick with old grease, rested on top of the defunct stove. Every appliance my mother had bought or been given filled the cupboards, drawers, and some of the countertops. With one finger I sifted through the old muffin cups, plastic pickle picks, and egg cups filling a bottom drawer. Alix was going to be in here for a while.
Steve and Christian started moving furniture, throwing out anything broken or moldy, and began going through the closets, checking clothes and bedding for anything usable. I assigned Theresa to the piles of mementoes I knew I was keeping. She began packing them carefully into plastic containers. She would then move to the family room adjoining the kitchen containing the wall-long closet that served as a hybrid office/pantry for my Dad. Within the dusty louver doors lurked ancient bottles of cleaning and laundry supplies, as well as a few random cans of paint. On the floor sat several large plastic buckets with tight-fitting lids that served as a testament to our family’s brief flirtation with stockpiling food for a potential nuclear war, or cataclysmic stock market crash, or a rare shortage of canned food. The shelves closest to my Dad’s filing cabinet safe were packed full of more papers, bills and the home-made computer that gave out electric shocks when touched. We were off.

Paper

"Picture a big house, roughly 2700 spare feet, built in the oh-so attractive split-level style of the sixties. Imagine the inside of the house as having layers of stuff, geological strata if you will. The top layer, laid down the most recently, consisted of huge amounts of junk and recycling that Dad had obviously been accumulating for years. It wasn’t quite at the point where you find bodies mashed flat and mummified between stacks of trash and paper, but it was close.
Under that were the basics: furniture and curtains; house wares and food; clothing and carpeting. Below that years of accumulated tools, car and airplane parts, and toxic paint cans in the shop. Old books and my mother’s belongings, our old toys and things we’d left behind, Christmas decorations, ancient photo albums, and numerous boxes and full filing cabinets. Then, the aforementioned accumulated years of papers and belongings of my parents; everything of mine and Big Sister’s that had been saved and stored; and whatever had made its way over when each of my grandparents had died.
And there was the paper. Always more paper. The entire house felt like it was made of paper; walled, buttressed, and roofed with paper. Drifted against every wall in a storm of cellulose. Sagging stacks of newspapers, junk mail, useless prospectuses, and magazines supported the sagging walls. Old bills, bank statements, and ephemera spilled out of boxes and filing cabinets. Letters, contracts, and certifications filled up every drawer, every cabinet. Every scrap of paper that had ever entered the house had remained, heaped and hoarded anywhere space was available."

They kept the envelopes?

"We had been working in the house for a month now, and Leslie and I were downstairs in the dusty, musty “Den”. When we first poked around the ground floor assessing the mess, the Shop/Garage, packed full of parts, tools, and junk, had appeared to be the hardest job. Looking at it now, I would have to say this room was worse. It had been filled, to the doorway, with stuff: bookcases; books and manuals; boxes and boxes of electronic components; rolls of fiberglass fabric; boxes of photographs; essentially everything my Dad wanted to keep but didn’t want to have to deal with.
I was currently perched on The Ugliest Couch Ever Made, a hideous mushroom-colored, vinyl decorating statement, which went perfectly with the dingy, matted gold carpeting. Surrounding me were our constant companions, the boxes that had moved with us from room to room, floor to floor; boxes marked Keep, Shred, or Recycle. They had been emptied, of course, many times, and they continued to fulfill their tasks as way stations for every single piece of paper we found.
The Den boxes were filling up quickly with the moldy engineering tomes from Dad’s days at college, important and semi-important papers, and those vital twenty- year-old airplane magazines that were apparently just too valuable to let go. Christian had also finessed (sawn) the lock off the large, green filing cabinet that we had hoped would be filled with plans for a nuclear reactor at the very least. Just to liven up the work a little. We found, to our great disappointment, more useless paperwork, including every credit card statement he had ever received, utility bills, engineering diagrams, and receipts and papers pertaining to the house and rental properties.
In one little lock-box, we did find the receipt for my mother’s diamond engagement ring, as well as some energy bills from 1970. It appeared my parents couldn’t relinquish any scrap of paper that entered their hands. They kept everything, even the junk mail, in the original envelopes."

Notebooks

"Alzheimer’s is a disease of progressive memory loss and cognitive decline, it eats away at the mind and spirit and being of the sufferer. I knew that although he denied even having it, he was ashamed and angry at this illness. Like an illiterate adult who has managed to get by for forty years without being found out, he had developed elaborate procedures and coping mechanisms, precise checks and balances that allowed him to seem relatively normal and high functioning. He carried with him at all times a little spiral notebook: every time we had a conversation, or went somewhere, he surreptitiously took out the book and made a note about what has just happened. There were stacks and stacks of these notebooks hidden in his bureau, attesting to the fear of what was happening to him. They were written in a kind of code; meals were noted, with specifics about what exactly was eaten. The mood or dress of a companion was marked down, as well as details about the car and the eventual destination. Weather and surrounding conditions were noted tersely. Although I occasionally snuck a secret peek to get a sense of his state of mind, I never once asked him about the books. I always felt the necessity of respecting his privacy, respecting the ruse that the notebooks represented, that he could remember things just fine, that his mind was intact. The books were an attempt to control, in some small way, how his mind was slipping away. It had also become more and more difficult for him to communicate words and ideas. Aphasia, or word confusion, is common in Alzheimer’s sufferers. In some ways he must have been trapped inside his head. In the end, these notebooks will be all I have of him; a written representation of the thing we all take for granted every day, our mind and memory."

Love Story

"In many ways this is a love story, an appreciation of relationship: between a man and a woman; a father and daughter; even a family and a house, connections that were made, enriched, and changed by the events that occurred. Almost before I started, I received the gift of a surprise romance; I fell in love and found a partner to support and sustain me the whole way. I developed a new kind of relationship with my father, and I was able to review my family’s past in the process of cleaning out the family home. I experienced the privilege of being present for both its creation and destruction, each of us having to say goodbye to something different but equally special; our childhood, our married life, our health and independence. It is impossible to go through the illness of a parent or any other large, stressful event such as cleaning out a family house without relationships changing, for better or worse; it is how those changes are handled, how we allow them to be transformed and to transform us, that makes the story, makes us who we are.

This is a story about a six-month experience, emptying out the family home, captured in moments, some bad and some glorious. I was there for hours at a time, month after weary month, but it is these scattered events that shine in my memory. For so long I dreaded the looming nightmare that was my Dad’s house. I knew it would take a great deal of strength and stamina to clean up the debris of lifetimes; it was a mess, in ways I could barely comprehend. I wasn’t prepared for how hard it would be to see my childhood home in such a sorry state. Sixty years of living needed to be cleaned out and sorted and kept and thrown away. At times it felt like we would never come to the end of stuff, of things that needed to be tossed or shredded or sold or preserved or hauled off to the junkyard."

Moments in time

Hey visitors, thanks for your kind comments. Keep checking back, there's always something new.

"If there is one thing I know for sure, it is that Alzheimer’s is an illness of moments, and you must be ready to experience them when they come. These moments are so important when caring for a loved one with Alzheimer’s. Sharing a joke, recalling a forgotten memory, the joy in performing a much-loved activity, like singing or walking along the lakeshore. That quick flash of recognition, when your loved one truly sees you, even briefly. That moment of connection, when they are either exactly as you remember them, or when they show some new facet that you have never seen. Tiny scraps, these flashes of time, they are the buried treasure of caregiving, rare jewels that come to you when you least expect it, often when you have run out of hope and stamina.
Caregiving is an emotionally and physically draining job, with very few perks. Each individual must decide for him or herself whether it is worth the struggle. Alzheimer’s is a growing epidemic. In another ten years or so, it will touch most families in America one way or another. And its not just disease that changes lives; old age also leads to the need to make major health and life decisions, and to clean out and dispose of family property. The baby boom generation is rapidly approaching their senior years and their families will be dealing with care-giving and care of property. Almost everyone has had to perform this chore, will have to soon, or knows someone who has. Its not an easy task to undertake, but it can have its rewards; the same thing can be said of care-giving."

The Main Character

"The house was always there. It sat as it always had, nestled into a slight hill at the bottom of the long, long hill. Surrounded by a field of cobwebby ivy and tall evergreen trees. It seemed like it would always be there; the last refuge of my family, the one place my sister and I could always go and expect a welcome. It was built by both of my parents; five months pregnant with my sister, my mother had to reluctantly rope herself to the chimney while hammering in nails. At first, it sheltered my entire family; newlyweds to parents, babies to young adults. Over the years, it held the lives, possessions, and mementoes not just of our family, but also the parents and families of our parents, and a few things of their parent’s, too. After my mother’s death in 1990, it became just my father’s house, and our uneasy retreat when we came home from college. It didn’t seem as homely without my mother being there.
In fact, the first Thanksgiving after my mother’s death, Big Sister and I met at the front door after journeying from our respective colleges. We relaxed in the living room for a while, chatting, until we noticed a strange itchy, crawling feeling on our stocking-ed legs. Looking down, we saw little black specks, crawling over the white nylon. Shrieking, we realized that the house was overrun with fleas due to our ancient cat. I have to admit it was the first Thanksgiving I ever spent eating dinner at someone else’s house while flea bombs napalmed our entire house.
This unpleasant state of housekeeping was only the beginning. As my father grew older and descended further and further into early-onset Alzheimer’s, the house became his refuge. In many ways, it sheltered and reflected his psyche. The condition of the house deteriorated shockingly, until it was past repair. My father, falling victim to the hoarding urges of his disease, filled the house even more full with junk and detritus. At one point, it became my residence again when I moved in as his care-giver; but it could never again be my home. After we moved my father to an Assisted Living facility, the house sat alone and untenanted for a year, dreaming quietly away in its ivy bed, while mold and mildew ate away at it.
This is the story of the huge project we undertook in cleaning out the house, and what I learned about my family and my parent‘s lives and dreams; my experiences and observations of Alzheimer’s and how it affected our family; and what happened to me during the three years, and more, that I spent involved in Dad’s life."

Dad Sings

As promised, the excerpts start here.

"He loved new technology and gadgets and I could see he was impressed by the capabilities of my I-touch, although at times he seemed a little confused by what it was doing. I showed him a few of the features, calendar, Internet access, before I remembered that I had music on it, too. Music being one of Dad’s great loves, I thought he might enjoy hearing something melodic.
As I scrolled through my albums wondering what he might enjoy, I stopped on Somewhere Over the Rainbow, sung by Israel Kamakawiwo‘ole, a weighty and much-beloved Hawaiian singer and ukelele player. This is a great song, soothing and lovely and I thought he would probably recognize it. Choosing the song, I held the machine up to Dad’s ear and heard the first sweet strains of Israel’s ukulele. To my surprise, Dad started singing along with the music; he sat, eyes unfocused, face peaceful, singing out of tune and obviously copying the words he was hearing, every now and then concentrating to make out or remember a word. I caught the eye of another woman there visiting her aged mother and we smiled at each other, each aware of the other’s purpose in being there, sharing a moment of understanding. I sat there, entranced for the length of the song, treasuring this quiet moment with my Dad as he enjoyed the music and found his voice once again."

Just trying to decide on the right template! This is hard stuff. Dad's been having more health problems lately. I had to take him to the doctor at the last minute this week for a continuing infection, but it looks like everything's fine. I can't help but wonder if we've entered a new stage of me caring for him. He never ever got sick before, but I saw at the doctor's how frail he's getting.

First post.

Hello everybody! This is my first post on the blog to support my new book. I'm so excited! The book is currently under consideration by an agent, so I'm waiting to hear. While I wait, I'm going to post excerpts from the book and blog about my experiences with my Dad. I'd love to hear from you, especially those of you who have a relative with Alzheimer's!