Personal Post

Well, I'm still sending out query letters. The second agent declined me in a very nice letter. My hopes are still high, there are a lot of agents out there and I'm confident I'll find the right one. The Alzheimer's Memory walk is coming up in September and I'm considering putting a team together, although it might be a little too late. I read an interesting new article comparing how teenagers brains work in comparison to people with Alzheimer's disease. It looks like an important chemical reaction in the brain that turns on and off normally gets stuck open with Alzheimer's. I think its just a little comforting that so much research is being dedicated to the disease. I know I have fears about getting it early like my Dad did, although I'm sure there were other factors involved like his depression, anti-social attitude, and the death of my mother. Every time I forget a word now, I worry that something is going wrong in my brain. Between the breast cancer that my mom died of and the dementia of my father, I feel sometimes like I have two strikes against me. Courage to me, though, is getting up out of bed the next day and starting again.

Lunch at the Facility

As we walked into the relentlessly cheerful lobby of the facility, I took note of the crackling fire, the swing music coming out of a replicated antique radio, and the squashy, comfortable chairs scattered throughout. They were really trying hard to impart a sense of home and vintage charm; while at the same time covering up the realities of aging. I nervously wanted everything to go well, leery of how Dad would react to being in the facility, even though we were supposedly only there for a meal. I watched as residents variously strolled, wheeled, shuffled, crept and edged to the dining room. The entire spectrum of old age and illness was represented.
Dad took it all in stride, sitting down at a free table with Christian and me, looking around the room with interest. Keeping up my usual flow of chatter, I monitored Dad’s reactions to the whole experience as we ate lunch.

Finding airplanes

Walking over to the biggest worktable, I began pulling off the heavy-duty plastic that covered an object underneath. As I pulled, yellow metal began to show through; it was another plane body, bigger even than that of the Veri-Eeze on the other side of the room. When I was a baby, dad started work on a plane with a body made of sheets of metal riveted together. The rivets were scattered all over the basement and I have distinct memories of sucking on them and being fascinated by their smooth fatness and bronzey-green color. For whatever reason, that plane was never completed, and as I looked, I could see that its parts occupied every corner of the shop. Tellingly, Dad had made a work-table out of the body of the plane by placing a slab of plywood on top of it, effectively removing it from sight and mind.

Decisions

I agonized for months over the decision to move Dad into a facility. I could see that the disease was progressing and Dad’s depression appeared to be worsening. I feared that I would miss something, some change in his physical state that heralded a serious health problem. Constantly nervous every time my phone rang, I dreaded someone calling to tell me that Dad had done something absolutely crazy, or had walked off and gotten lost. I shuddered at the thought that something would happen in that decrepit house while I was gone, that he would leave the stove on and burn the house down.

Assisted Living

The term Assisted Living is a marketing tool, no doubt, designed to replace the more obvious and horrifying term, Nursing Home. These facilities ease seniors through the final stages of their lives, from independence to dependence and on to death. Most are comfortable, respectful facilities where active seniors can rely on others to do chores and cooking, while they enjoy activities and social lives. Many facilities set aside whole wings or buildings devoted solely to Alzheimer’s patients, providing secure accommodations, activities and care to support the declining minds of their residents. I found the names of these areas amusing. No one came out and called it an Alzheimer’s or Dementia wing. I could picture the marketing meeting on that issue.
“How can we refer to Alzheimer’s symptoms, without actually referencing them?” Coming from the CEO.
“How about Nostalgic Memories? Or, Remembrances Past?”
“Remembrances Past! That’s perfect. Use that.”
Apparently no one wanted to imagine his or her relatives living in lock down. Euphemisms were so much more comfortable.

“Do we have enough kibble? Don’t forget to get some kibble.” This from Dad as we were walking through the grocery store. In time, Mow, as he came to be known because of his loud distinctive cry, became Dad’s constant companion. Mow was pronounced the same as Mao Tse Tung; I found out much later that the word mau in Egyptian means cat or seer, both definitions being pretty appropriate. Dad went from pushing him away with his foot to cuddling him at every opportunity. Every morning I found Mow sitting on Dad’s lap at breakfast, sniffing the plate, making sure that Dad wasn’t keeping all the good bacon to himself. He had a passion for melon, and would climb us like a tree if he saw us holding a piece. Mow followed Dad everywhere: sitting on Dad’s lap in the sun; listening to classical music cranked on the stereo with apparent enjoyment.
. I considered Mow an angel sent to us, one last cat to keep Dad company. I realized just how far Dad had come as we were taking a walk one afternoon and he was trying to tell me something.
“It happened there, this thing I was telling you about,” he said, struggling to bring to mind the words he wanted.
“Where was it, exactly?” I asked, trying to pinpoint if he was talking about the house or the new facility he was living in.
“You know, that place. That place where Mow lives!” he said.
Oh yeah, that place.

Mow the Cat Part I

During my stay with Dad, we were adopted. It was out of the clear blue, and certainly not something we were expecting. A cat moved in, bringing with him very little baggage, but a very sweet and friendly purr and a taste for cantaloupe. I had two cats of my own that I didn’t get to see while I was with Dad and I missed having something furry around the house. At first, the orange cat appeared on the deck every day, peering in the sliding doors, meowing enticingly, sidling in when the doors were opened. I made a little bed for him on the deck, and left a bowl of food out.
“What are you doing?” Dad asked, coming upon me as I was making a little nest with old towels and blankets.
“I’m just making a little bed for that cat that’s been around,” I said. Just then, the orange cat jumped up on to the deck and began to wind himself enticingly around our ankles. Dad gave a little kick of disgust as the cat twined around his leg.
“Don’t do that, it’ll just encourage him.” He watched grumpily as the cat made its way into the kitchen, purring as it inspected the house. “Just don’t let it into my room.” he said.
“Don’t worry, I’ll keep him out of your room.” I said. “I just think he’s so sweet.”
For a few weeks, Dad continued to express disgust and indifference toward the cat. Gradually, insidiously, the cat began to work his way into Dad’s affections, while sleeping on me at night and keeping me company.

Caregiving

As a caregiver to my Father, I often had to put aside my role as his daughter and behave as a caregiver. Certain behavior that would trigger a child of the patient, would not trigger a neutral care-giver. Sometimes he repeated things over and over, or completely forgot what I had just said to him. I would get angry, wondering why he never listened to me, or tired of hearing the same thing over and over. Sometimes he acted unkindly or rudely, hurting me. Therapy helped me during those times I got confused and angry about legitimate dementia behavior and couldn’t differentiate between him as my father and as my patient.

Talking

“What are you doing these days for work?“ he asked.
“I’ve been working for the chiropractor, you remember? Doing insurance billing? And Christian and I have been going out for almost a year now,“ I told him. My throat was almost closing, I was so happy to actually be talking to him.
“Which one is Christian again?“ He asked, a little confused.
“He’s the one with the beard? The computer guy? Remember you guys talked about computers when I took you down to my house?“ Dad always remembered Christian’s beard for some reason. “My cats are doing well, too. You remember Angus, the big orange striped guy? And Barney, our big grey cat? They’re both happy.”
“Oh, right, right, you told me that. Well, good.“ He looked down at the newspaper in his hand while I sat for a minute, just looking at him. I used to rage about the fact that he never asked me how I was. When we sat and talked, I would bring up things I had been doing, anything new in my life. But what I longed for more than anything was for him to actually ask me about my life.
We sat for a little longer, talking when we felt like it; occasionally he would repeat the same question or offer the same advice. It felt so good to sit there with him and actually converse. His emotions were so much closer now to the surface, and I could tell from the way his eyes welled up that he was enjoying spending time with me. I knew he likely wouldn’t remember anything I told him, but at least I felt his interest. I heard the words I had yearned to hear for a long time, and I finally got to share myself with him - just a little bit.

Seeing the Truth

"I still needed him to be my parent. He was the last one I had and I was not ready to let go of that. I was completely unprepared to parent him. I was so angry with him, it felt as if he was escaping from his life, escaping from responsibility, and I was going to be forced to care for a man who had not cared for me at the times when I most needed it. I was bitter at the thought that I would be required to use my limited energy and time, perhaps exacerbate my chronic illness, to look after this evasive, exhausting man who wouldn’t even acknowledge that there was a problem. I was not yet ready to switch roles.
At the same time, it broke my heart to see the conditions in which he was living, and to see his genuine dismay and horror when he saw what was happening. How could you realize that your father was living on bread sandwiches cookies and pop every day and not be sad? I wanted things to be better for him, but I couldn’t see how to do it without giving up myself."

Personal Post

I'm still waiting to hear from the agent; I guess no news is good news! Let's hope she thinks my disorganization was endearing or momentary, I'd really love to publish this thing. I took Dad to the doctor today, thank god the toe seems to be healing up. Dad was in good spirits, but so frail. He mutters now, sentences start off strong and then trail off. He was never that chatty to begin with but now even less so.

Cleaning the Shop Part II

Leslie ran her hand along the rough, olive- green surface of the plane chassis nearest her. “I don’t even recognize this. What kind of plane is it?” she asked. I pointed to the panorama of pictures pasted on pieces of cardboard that adorned the wall above a work-table.
“It’s called a Veri-Eeze. What is known as an experimental aircraft.” I said as we studied the pictures. The photos were of glossy, petite, finished planes all with the Veri-Eeze’s unique structure of a small body, long center wing, and smaller wing bisecting the nose of the aircraft, which then ended in a propellor.
“Wait, is that you?” Leslie crowed, pointing at an older photo, bent at the edges. The picture showed a very young Big Sister and I, standing in front of one of the oddly-shaped planes. I am little enough to fit under the big main wing, and I am wearing shorts and a grubby t-shirt. Big Sister is taller, her head reaching above the wing, and she is dressed in shorts and t-shirt as well. We are both smiling at the camera, but our faces also reflect the fatigue of a great deal of walking and looking at the very planes we stand in front of.
“Yep, that’s me.” I sighed. “You’re looking at the birthplace of the experimental aircraft, and the bane of our existence; the EAA convention in Wisconsin.”

Cleaning the Shop Part I

The Shop was a visual representation of how I imagined Dad’s brain was looking these days: messy, cluttered, and stacked with junk. The overhead florescent lights flickered to life as Christian flipped the switch, illuminating most of the large space. Essentially a double garage, the shop had been devoted exclusively to my father’s pursuits for as long as I could remember. It was his haven, his refuge: where he kept dusty pictures and files of plane diagrams; where he resuscitated the Fiat convertible he bought instead of the Corvette he really wanted; and where he played the radio turned to classical FM while applying epoxy to one of the wings of the experimental aircraft he was building. Ah yes, the aircraft.
There were plane parts everywhere, mixed in with the car parts and tools and table-saws. The large, greenish fusillage of a plane called a Veri-Eeze filled part of the space with its rough, fiberglass body. There were boxes of flight instruments, and piles of the components that would have been inserted into the wings to adjust the flaps. We had glanced at the shop when I first hired Leslie, but I hadn’t covered the full story with her. The story of why the shop looked like an airport after a tornado.
Next to sailing, flying was Dad’s favorite thing. He dreamed of building and flying airplanes; as a child I had memories of being taken up by him in a small private plane owned by a group at Boeing. We would urge him to fly above the clouds so we could look down at the billowy white landscape. His membership in the flying club expired and the flights petered out as his family grew and his responsibilities increased. Unable to comprehend such a thing as a work-life balance, his love of flight went underground.

Dad's pictures

This one is dedicated to my Uncle Andy.

There were photos of him in groups with other young men. Sometimes in some classroom holding up an object that obviously had meaning to them. A few in what is obviously a dorm room, filled with beds, dressers, and desks piled up with technical equipment. Pictures of him with a small sailboat, on a lake I don’t recognize, with his little brother. He was happy in almost every one of these pictures, laughing and active and strong.

Dad had always been secretive and reticent about his past and his family, except for the basic details. It didn’t seem to be motivated by shady reasons, he just never seemed interested in telling us much, even when we asked. He always said he preferred to live in the present, that he couldn’t remember all those old stories and didn’t want to. What he didn’t realize was that, in some ways, he was denying us crucial bits of our history, details that could help us shine a light on our parents and why they were the people they were. Not only personal details about our family of origin, but also illuminating facts about events in the past and cultural history. These were stories about our family that now we would never hear, never understand, and to me, that was a great loss. Maybe as he traveled back in time in his mind, details would come out, like scraps of paper, about his life. I only had to be there to pick them up and smooth them out and read.

Cleaning the Den Part II

“Hey look, look at this! I can’t believe she kept all of this,“ I exclaimed.
Big Sister crowded in next to me, “Look, it’s the clown costume. And the hat! She saved the hat!“ It was indeed the clown costume, made by my mother when Big Sister was a toddler for Halloween, and recycled for me a few years later. There were pictures in the family photo albums of each of us, clad in the shiny silver one-piece suit, puffy red buttons running up the front, tiny, cone-shaped hat on top of our heads. And, of course, the clown makeup: painted on red nose, rosy cheeks, and white triangles around the eyes. She had saved our most favorite clothes and shoes, stuffed carelessly in the garbage bag, lost for years in the crammed closet. I could remember most of the outfits and how much I had loved them.
“It’s the shoes, my red shoes!“ I yelled, holding up the little red patent lace up shoes that were featured in many pictures of me as a child. I could remember one particular photo, Big Sister and I standing together, dressed in our stylish and garish seventies clothing, shirts tucked firmly in and pants pulled up almost around our chests. I’m smiling in the picture, no doubt because I’m wearing my snappy yet stylish red shoes with the striped red and black laces! How I adored those shoes!

Cleaning the Den Part I

My thoughts turned to Big Sister as I sat on the dirty yellow carpet, surrounded by relics of our family. What did she think about our family, about our parents? What was her reaction to the questions and revelations that this house clean was evoking? We were only two years apart in age, yet our family experiences were miles apart, as were our reactions to our father’s illness. Our relationship had already been strained by my father‘s situation, a common occurrence in families touched by illness; I imagined our reactions and recollections of events and actions taken were miles apart as well. Inevitably, where there were siblings, there were expectations and emotions; disappointments and disillusionment. We had tried to communicate throughout, with varied success. I couldn’t help but wonder what our relationship would look like at the end of this experience.

Enough floor space had finally been cleared so we could reach the closet, which was full of more stuff: boxes, bags, carpet remnants, rolls of fiberglass. Even a filing cabinet shoe-horned into the corner. Pulling out the empty cabinet and putting it in the hall, we gathered in front of the closet, trying to get a good look at the boxes and bags remaining. Digging through a huge black garbage bag, I found a surprise.

Making a decision.

The idea had occurred to me all at once, springing into my head almost fully formed. I was spending a lot of my spare time and energy helping Dad, and I was finding it hard to combine that effort with the demands and stresses of my current job. I was spending one day a week at Dad’s house paying bills, doing clerical work, and sometimes going out to lunch with him and his care-giver. What with the hour long drive there and back, and the exhaustion after being at the house, I was giving up my whole day, even though I was only there a few hours. I was pushing my limits. If I were to move back in with Dad, taking the place of the aide currently there twice a week, the benefits could be huge...
After weeks of talking it over with my friends, my therapist, and pretty much anyone else who would listen, I knew what I had to do even though I was still petrified at the thought of what I was taking on. The money was great, the chance to have more time was enticing, but it always came down to not wanting to miss anything. However, the relationship between my father and I had always been backwards. I had always been the one running after him, struggling to establish and maintain a connection. I had felt trapped in the role of caretaker. Now I was choosing the role of my own free will. If I was going to do it, I needed to be absolutely clear about what was happening. I was choosing the money, the best way Dad had of caring for me. And I yearned to see if I could make one last connection in the time he had left. If Dad had one lucid moment, I wanted to share it with him. I wanted to see everything that was happening to him. In the end, I really had no choice.

Telling Dad.

The beach bordered the path on one side, sand and beached logs alternated with reeds and mud. On the other side, trees and bracken gave way to gentle slopes of green grass filled with all sorts of birds and waterfowl, going about their business. Ducks quacked and waddled officiously across the concrete path, gossiping to each other. Where the water came close to the path, we could hear it lap gently against the rocks. Crossing bridges built over the edges of the lake and various little streams running into it, we could look over and see the little fish darting through the peat-brown water. Walls of hedge roses bloomed in the spring and summer, and the flat, bready smell of grass dried in the sun filled the nose.
I chose this walk and this path specifically when it became time to talk to Dad about our concerns for him and to tell him that he would be moving to an Assisted Living Facility. Regardless of age, assuming the mantle of parenthood over a parent is both difficult and impossible to prepare for. Conveying to a parent the imminent reality of a move to a facility presents an even worse challenge. I wanted to discuss the situation in a place where Dad had been happy and calm.
Dad’s very first words were, “Why don’t you just shoot me so I’m not such a burden. I’d rather be dead than go to a place like that!” Then he began the circular reasoning at which he had become so adept. “Why do you think I need to go there? You think I have this thing, this disease?”
I couldn’t back down now, although my heart quailed. “Yes, Dad, you have Alzheimer’s.”