Personal Post

I've just read some information linking depression and Alzheimer's. Apparently, those with depression were more likely to develop Alzheimer's later in life, even more so if the depression had been in evidence before the age of 60. This makes so much sense to me. My father was depressed throughout my childhood, going through cycles of black moods for days when he wouldn't speak to us, and periods of reasonable happiness and contentment, even joking. We never really knew what we were going to get with Dad and spent a lot of time pussy-footing around to avoid his anger. But it turns out he wasn't really angry, he was in deep despair, and he was not the sort of person to do anything about it other than suffer through it. I think after my mom died, the depression took over and opened the door to the Alzheimer's that would claim him a few years later. It seems to me that not only are we only just beginning to understand Alzheimer's, but depression as well. Once ignored or relegated to the "suck it up and bear it" class of dysfunctions, depression might turn out to be more important, and dangerous, than we ever imagined.

Personal post

Its amazing to me how caring people from other cultures can be about the elderly from MY culture. I'm touring family homes to move Dad into, and many of them are run by people of different ethnicities, especially Phillipino. One house in particular, run by a Phillipino couple, was warm and loving, scrupulously clean and well-tended, and the residents were obviously respected and cared for. Dad's aide is Phillipino, too, and a kinder, more dedicated person you won't meet. Knowing how many horrible and low-standard homes there are for the elderly, its reassuring to see these great places. I always wonder what it says about us as a culture that we leave the care of our elderly to those from different cultures.

Personal Post

Well, its here, what I always hoped wouldn't happen, and something I'm sure many, many people have had to deal with. When I placed Dad in his facility, I deliberately chose one where he could live out the rest of his life, no matter the course his illness took. But the gods laugh at those who make definite plans, I guess. It looks like we'll definitely have to move him. His territoriality and aggression are getting even worse. The mental health nurse is trying to medicate him to see if that helps, but I have a feeling that the facility is starting to get antsy. They say they deal with these types of behavior all the time, but it seems like they can't handle Dad. So I have to find a new place, a smaller place, one that's not quite so overstimulating. And then I'll continue to think that every phone call is about Dad, with some bad news, or them telling me the facility is closing or something like that. A friend told me that after her seriously ill father died, she was almost relieved because it meant that she didn't have to dread every phone call as being about him. I think I can understand what she's talking about, and I'm sure thousands of people every day deal with the same fears.

Personal Post

The mental health people finally got through all their paperwork and a mental health nurse visited Dad at his facility to do an evaluation. Luckily, it was the same one who visited Dad last Spring after his incident, so she knows him. She seemed like a really nice, caring lady. I answered as many of her questions as I could, and then Dad wandered into the room where we were talking. It was good to see him, and he seemed to be in a good mood. As I gave him a hug, he even remembered our usual greeting, "What's a pretty lady like you doing here?" The nurse examined him and talked to him for a little while, and then she went to talk to the caregivers. Del and Dad and my sister and I all sat on companionably, talking a little bit. My sister was looking through the pictures I have stored on my Itouch and she came across some old ones I'd scanned in of she and I and Dad and I. I took the Itouch and sat down with Dad. I showed him the picture of me sitting on his lap, the same one posted here. I asked him if he recognized the handsome man and told him it was me sitting on his lap. He smiled and studied the picture; I don't know how much he remembered, but I enjoyed showing it to him and sharing another moment together on a couch.

Personal Post

Well, Happy Thanksgiving to everyone! I had a great day with some really good friends that I'm so grateful for. As I was stirring the gravy, though, I couldn't help but think about the last time I actually had a holiday dinner with my family. I've been either cooking my own meal, or arranging to be with friends for what feels like forever. The last Thanksgiving with the whole family was right before my Mom died. I don't remember much about it, when you're young you don't think about the future. I'm sure it seemed just like every other Thanksgiving we'd celebrated. My last Thanksgiving with Dad turned out to be a nightmare; the two of us at a restaurant with me an uncomfortable witness to the growing symptoms of his disease. I doubt he realized it was Thanksgiving as he ate his turkey yesterday with the rest of the residents, so I'll be grateful on his behalf! I'm grateful for the facility and all the hardworking caregivers, I'm grateful for his friend Del and his great doctor who looks after him.

Personal Post

Yesterday I received the paperwork that permits the mental health nurses to do Dad's psychiatric evaluation and monitoring. I've signed plenty of forms for myself, giving people permission to do things or know things on my behalf, and that's fine, its what we do as adults. For the last six years or so I've signed a lot of things in Dad's name, checks, tax returns, intake forms. But as I was signing these forms that give someone permission to examine and evaluate Dad, a person other than myself, I was struck yet again by how odd it is to be making decisions for someone else. I am literally responsible for another adult's life, and the decisions I make have an impact on that person, not on me. What if I make the wrong decision, what if I choose the wrong thing? If I do that for myself, that's one thing, but its not easy knowing my wrong choices could damage my Dad.

Personal Post

Thinking about the possibility of moving Dad is stressful for many reasons. I think the only thing NOT stressful about it is the same thing that stressed me out the first time I moved him; whether he would get really angry or refuse to stay. I think we're pretty much past that point. What might happen, though, is that a new environment after four years would throw him completely and irretrievably off balance. After all, the facility is his home, regardless of how much he hates it there. Would the benefits of moving outweigh the drawbacks? And will the debate even matter if the situation gets worse. The director of his facility has already told me that they have resources and places they can send me if Dad gets too violent for them to handle; although I know they like him and will keep him as long as they can. It wasn't a threat, exactly, but it was a heads-up. Given Dad's manifesto of 'staying in control' I wonder just how much repressed anger and emotion is in him, considering how much is coming out now. Or is it just anger about what's happening in the present; bitterness at the indignity and loss of control. I don't suppose I will ever really know.

Personal Post

I had a meeting about Dad today, and then I went to see him while he was having lunch. He has become territorial and aggressive, to the point that we have ordered a psychiatric evaluation to determine what changes to environment or medication would help him; and help the people who care for him. There have been several times recently that he has almost hit either a resident or caregiver. Needless to say, this would be a very bad thing. I sat with him as he ate. He's now at the point where a fork needs to be put in his hand and he needs to be reminded often to actually eat the food in front of him. I spoke to him occasionally but, remembering how we had discussed our mutual love of just being silent together, I just sat with him, trying to radiate calm. Mostly because the environment around him was not. Residents around us screamed, slapped their heads, hummed tunelessly, and groaned as they sat at their tables. It was never quiet, and I could see that some of the screams and physical actions were bothering him. It made me think once again about the possibility of moving him, of finding a smaller facility with fewer residents. I'm sure these vocal and kinetic symptoms of dementia will show up in any facility, but perhaps just having fewer people around and less commotion would be better for him. Its just so hard to know.

Personal Post

Once again, Dad is taking the difficult road, and he's making us take it with him! I finally spoke to the director of the Alzheimer's wing where he lives and she alerted me to some things that were going on with him. On the whole, his facility is an excellent one, but they seem to repeatedly drop the ball in little ways, and I find that really frustrating. I haven't been able to see him for a few weeks, and since I hadn't heard anything, I assumed all was well. Turns out it really wasn't, and no one at the facility had seen fit to give me a simple phone call to let me know! For what other reason are we paying $7,000 a month than to provide a phone and phone service so that the people in charge of my Dad can use it to call me when something is wrong?!

Personal Post

Over the last few months, I have been both preparing my house for possible flooding, and cleaning it out after the departure of my ex-partner. I've packed up my non-essential, yet much-loved artifacts, mementos, and photo albums and stored them in Seattle. I also thought it would be a good opportunity to go through closets and storage areas and get rid of some stuff. As I did so, I reflected on how cleaning out my Dad's house left me so well equipped to clean out my own! I got very good at deciding what to keep and what to toss, and quite expert at packing the things I did keep in small boxes. I think I inherited that skill from my Dad who had the talents of a Tetris master when it came to packing a car or suitcase. After seeing what Dad's house became, and then having to clear it, I've also become quicker about clearing out clutter and non-essentials. When I had thrown out, packed, stored, or rearranged everything to my satisfaction, I called my friends at GotJunk, another resource discovered during the Great House Clear Out. They came and in one hour spirited away the huge pile of junk I had made in the back yard, including the deflated and damp rubber swimming pool. My house is now clean, organized, and (hopefully) water-tight. Who would have thought that such an annoying and exhausting task as completely dismantling a house would pay off so well in the future? :)

Personal Post

Alzheimer's literally involves a gradual, complete loss of self. The body forgets details, words, events, people, and eventually how to breathe, eat, and function altogether. If people are containers for their own personalities, experiences, beliefs; their own souls, even. Then Alzheimer's becomes the fissure in that container, allowing everything to slowly leak out. If you choose to become a care-giver for that person, you will become the living repository of everything that person was or did, hampered only by what you know of or can remember about, them. I am an imperfect repository for my father because his story started long before mine, all I have are the bits and pieces he or others have given me. In addition, I have sometimes altered these bits and pieces, and I view him through filters of my own. But I am doing my best to hold on for him to all the things he used to be and do and know. I know that he liked waffles for breakfast, especially if they were brown and crispy. I know that he loved to fly and that the best part of a flight for him was the take-off, when the plane was going its fastest. I know that he had a brilliant mind, and that he loved roller coasters. None of these things are particularly important, but they are all part of what made up an individual, who is slowly losing his individuality. I am an imperfect repository, but a necessary one.

Personal Post

I am on call for my Dad 24-7. Any time there is a problem, I am the first person they call. When he got angry and threw a punch at a nurse six months ago, I got the call as the police were bundling him into the ambulance and taking him to the hospital. Whenever he's not feeling well or there's a problem at the facility, I hear about it. This is all just the way it is, I'm fine with it; in fact I signed up for it. Occasionally I actually think about it, though, and it strikes me as interesting. It's too bad I couldn't be on call for something interesting like a rock star or something! I'm also the one who has to deal with the personnel at his facility and sometimes they make me very irritated. I know that they have other patients to deal with, but its not like there are more than 20 or 25. I know that they don't sit around all day dealing with only my Dad's and my problems. But I have to admit that they seem to let stuff slide that they shouldn't, and they conveniently seem to forget simple things I've asked them to do, events they should notify me about. For the kind of money we're paying, it seems like these little glitches shouldn't happen. However, I am also grateful for the care they do give him, and the fact that we're able to keep him in such a good place. I guess no situation will ever be perfect, short of him being well and taking care of himself; something I wish every day was the reality.

Still cleaning...

It was September, month six, I think. I felt like I’d been in the trenches so long, I couldn’t keep track of the dates any more. Who would have thought Dad lived in the Tardis of houses. It didn’t look so bad from the outside, but just when we thought we had cleared it out, there was still more to be done. Perhaps it kept filling itself up when we weren’t there, sneaking things out of the dumpster at night and putting them back inside. It was beautiful out, sunny and warm as only a Seattle Indian summer can be. The house was set behind some really tall trees, so had always been somewhat dark and dank, but at that moment, the sunlight was shooting through the windows, shining down into the driveway where the GotJunk truck was waiting, its tailgate open.

Personal post

I have a friend who I like a great deal, although I don't know as much about her as I'd like to. Her mother is in the same state as my Dad, and, soft-hearted woman that she is, she agonizes about it every day. When her mother first started showing signs of the disease, she did the extraordinarily generous thing and took her mother into her own home, caring for her and paying her medical bills, with help only from her husband. The time came when the situation was no longer working, and she was forced to move her mother to another state where she had family, and place her into a facility. She feels guilty every day for doing this; feeling that she has failed her mother, even though she has gone above and beyond what most people are willing to do. I want care-givers to rise up against this guilt! They and their loved one were placed in a no-win situation, and there should be no fault or shame. I want them to see that whatever they have been able to do is the absolute best they could do at that time. And that they, and especially my friend, are heroes every hour of their lives.

Personal Post

I took Dad back to the doctor for a follow up visit. The changes in his medication seem to have had a beneficial effect and he's more responsive, his face is more mobile. The confusion, however, is the same, and will only get worse. The doctor is considering possibly changing his diagnosis of Alzheimer's to some sort of Parkinson's related dementia, even potentially Lewey-Body. Dementia is dementia, of course, and a change in diagnosis is largely important only on paper. The results are the same. There are a few drugs that will help in one type of dementia, while hindering another. With a Parkinson's related dementia, being aware of environmental triggers is apparently even more important than with Alzheimer's. The least little uncomfortable thing can spark aggressive or angry behavior. The reality of the sufferer being unable to express their discomfort or preferences is what I find the most sad. I've often expressed the opinion that true Hell isn't great pain or torture, its acute discomfort from one or more sources. Imagine nagging discomforts and how hard it would be to not be able to tell anyone about it. It's just one more aspect of what is happening to him that my mind ponders as I see my Dad.

Every little thing-cont.

My mind jumped to the question of whether Dad was enjoying the food at his home, and I remembered different foods he had really liked.
But then I started to wonder whether he even noticed anymore what he ate, or whether he craved certain foods he’d never get again because he couldn’t ask for them. I wondered if he missed certain flavors or textures. And I jumped again to how very much I love food, and the great pleasure and comfort I take in certain foods- indeed in all small similar pleasures. It hit me that to have AD would remove that pleasure and comfort. I am able to live, to make it through small hardships and problems partly due to my love of the small things, the little pleasures of life. And to the continuing prospect of ice cream at the end of a hard day. How horrible to lose that to Alzheimer’s as well. That, I realized, brought home to me the true horror of the disease.

Every little thing- a new essay

I was sitting at my desk at work, idly gazing at my computer, and contemplating the large list of tasks I needed to complete, and phone calls needing to be made. As so often happens, my mind began to make connections and my train of thought left the station, pausing at disparate stops along its journey. I started thinking about the new course of supplements I was on, then about who I knew who might benefit from something similar. My mind jumped to Dad, who I had taken to the doctor that morning and then I theorized that supplements probably wouldn't have much of an effect of Alzheimer's anyway. I reasoned that Dad was probably eating fairly balanced meals at least, but then I wondered how balanced institutional food could be, even at a good place like Brighton.

Vision IV

“Dad, what’s my name?” I asked gently, trying to test how far in it he was. He studied me for a moment and then smiled.
“You’re Joy.” He said, with a look that said, see? I’m not crazy. I smiled back, but I felt sad. I was happy that he remembered my mother and was talking about her, a rare occurrence. It was terrible that he had this gruesome and untrue picture in his mind of how she died. It was one of the symptoms of the disease that he had often suffered from, vivid visions or dreams of events that didn’t happen, without exception violent and disturbing. Why the visions were always bad ones, I don’t know. I learned to take them as they came, and tried to help my Dad through them.

Visions III

“She was having (Big Sister), who was just too big. The blood kept coming and they just couldn’t stop it. Big Sister was just too big. There was so much blood, she died,” he said unhappily. Since my sister was tall, I assumed he was integrating that memory into his vision, that of my mother giving birth to a full adult.
“I’m sorry that she died,” I said. “What was her name?”
“Pat, her name was Pat. But you have to understand how much blood there was, and they just couldn’t stop it. It only happened a little while ago,” he said mournfully, experiencing in his mind as reality the terrible events he was describing. I mourned with him, deciding not to try to talk him out of what he believed so strongly.

Vision II

Which is not to say my parents didn’t love each other, since I sincerely believed that they did. I think even then, I questioned what their version of love was, thinking that there must be something different, more open and giving. My father very rarely spoke of my mother now, and I wasn’t sure why. I went to see him one day and take him to lunch. As we sat at the restaurant, waiting for our food, he began to talk.
“You know my wife, she died a little while ago,” he said.
“Oh, I’m sorry, that’s terrible,” I responded, not sure where he was going.
“She died, just a little while ago. And it was so horrible. She died giving birth, there was too much blood; they just couldn’t stop the blood,” he became more agitated, obviously horrified in his mind, trying to convey the scene to me.

Parents

My parents were married for twenty- seven years, my father having given my mother her one ring when she was nineteen, stating clearly that it was he who was marrying her. Both essentially private people, over time they came to rely on each other for all social and intellectual interaction. They had hardly any mutual friends that they spent time with. My mother had friends from graduate school and her library that she saw fairly regularly, but as far as we could tell, my Dad didn’t really call anyone a friend. They were very close, but it was hard to judge as I never saw them exchange more than a chaste kiss and I never actually saw them sit down and have long discussions. Perhaps they saved that for their bedroom.
Looking back now, I’m not even sure they shared many common interests. My father loved to sail; my mother tolerated it for his sake. My father enjoyed being outside and active; my mother preferred to sit on the couch and read, coffee cup in hand. While I’m not sure how much deeply personal stuff my father shared with my mother, he seemed to know very little accurate information about her. Which was so odd to me in the context of my own relationship. I guess the young always think they know better even as they constantly reinvent the wheel.

Mom's rings.

But the one thing we did not find: my mother’s wedding rings.

I have distinct memories of mom’s rings. They were tiny, but so was she. They were also understatedly beautiful and simple, again, not unlike their wearer. Made out of white gold, the thin wedding band nestled next to a slender engagement band set with a large white solitaire diamond. I had always been impressed by the size of the diamond, once I became aware of such things, as well as the fact that my Dad, a not-exactly stylish, borderline miser had picked this big beautiful stone and classic setting. She had tiny hands, a little stubby and reddened from housework and the dryness of the library where she worked, but I thought they were beautiful. Since I never saw her without her rings, they were as much a part of her hands as her fingernails. Perhaps seeing your mother’s hands is your first true memory as a child, and the one you will carry in your body forever.

Personal Post

I went to my 20th High School reunion this weekend and it was bizarre! You could see the 18-year old faces underneath 20 years of life. Most people were recognizable, many were married with kids. I saw the two guy-friends I had most wanted to see again, and it was great to talk with them. As I told people what I was doing, I felt really proud, not only of the book, but of the events contained within it. I'm glad and proud that I took the opportunity to be with my Dad when it was offered. Most of us just get on with our lives; its only when we look back or describe it to someone else that we see just how much has happened. It was reflected back to me by some of these people exactly how far I've come and all the things I've done, and that felt good. It was also interesting to hear how many people knew someone with Alzheimer's, or knew someone who knew someone. More and more of us are being touched by this horrible disease with its hardships for sufferers and care-givers alike.

Change

Moment by moment, through the choices we make, the events that occur, and the inevitable progression of time, our lives go on, along a changing path. I learned that those events, those hardships that seem never-ending and all-encompassing, do eventually end. Things resolve, houses are emptied, parents age and die, nothing lasts forever. I learned that relationships are not static things set in stone but living, fluid entities that can be expanded and changed if the conditions are right and the participants are willing. All it takes is a little patience, a lot of forbearance, and sometimes a terminal disease!
I learned that it was okay to be angry and resentful, even at your own sick parent. I learned to put myself first. I learned it was okay to yearn for your old life back. I learned it was absolutely necessary to lean on others. But most importantly, I learned it was okay to give up, just as long as you return in the morning.

Personal Post

After our visit, as Del was helping Dad get dressed again, the doctor pulled me aside. She asked me if I would be surprised if someone told me my Dad might die within a month. A few months ago, I would have been surprised, but after all the health issues he's had recently, now I'm not so sure. Its a very strange thought since he has been so robustly healthy, that I was sure he'd fight it out for years. But maybe not. She suggested I might want to start talking to the hospice or pre-hospice people about starting to visit Dad occasionally. I love Dad's doctor; she really understands his beliefs and what he wants, and what we all want for him, which is no intrusive measures and a good quality of life. And a good death. Like I said, its a very strange thought to start thinking about hospice. I definitely want to bring them in, though, to send a clear message to the facility that we want Dad to die peacefully and with dignity whenever its time to go. I always knew this time would come, but somehow I find it odd that it finally has.

Personal Post

I took Dad to the doctor again yesterday. The nurses at his facility were concerned because he seemed more confused and fatigued and they thought he had a bladder infection or something. It seemed to me that these are just symptoms of his illness, but I took him in anyway. His doctor is great, she always talks to him directly and she's very understanding of his beliefs. He mumbles a lot now and seems to doze and drift. She asked him his daughter's name (I was sitting next to him), and he thought for a while, then said my sister's name. Its been a while since he's said my name. I know that's just what's going to happen, but its still a little hard. We saw a trace of the old Dad when the doctor asked him to walk down the hall so she could watch him walk. When she told him to turn around and walk back, he grinned and offered to walk back sideways as he started to do just that. Sometimes I think its just a matter of breaking through the haze of the dementia and the meds to find him again.

Epitaph V

Over the next few days I began to see the poem everywhere, including a book I had just started about Alzheimer’s disease. Unknowingly, Dad had picked a poem reflective of his fate. I hoped it had given him some comfort. I knew I would be honored to read it for Dad when the time came. Until then I would take my own comfort in it, this misspelled little love letter written on a smudged and crumpled notecard, passing on a message of trust, beauty, and timelessness.
“It is time to be old, to take in sail: the god of bounds, who sets to seas a shore, came to me in his fatal rounds, and said: “No more!”….
“As the bird trims her to the gale, I trim myself to the storm of time, I man the rudder, reef the sail, obey the voice at eve obeyed at prime: ‘Lowly faithful, banish fear, right onward drive unharmed; the port, well worth the cruise, is near, and every wave is charmed.’” -Ralph Waldo Emerson

Epitaph IV

Visiting again several weeks later, I quietly and hopefully nudged open the cupboard door, and saw the card again, hung in exactly the same spot, with what looked like the same crumpled piece of tape! Furtively, I whipped it off the door, stuffing it in my pocket. Obeying some strange impulse, Dad had shuffled and rotated this important little notecard right back to where it needed to be. And now, happily, I could take it home to uncover its mysteries.
I looked it up on the Internet, and the third verse netted me a spare website, displaying two full pages of a poem called Terminus, although the site contained little background information. Written out I could see clearly why it held such meaning for him. The few words that Dad had written in his tiny message to me were beautiful, the entire poem even more so. With its images of the sea and a wind-tossed God who rested among the elements of the world, it reflected Dad’s love of all things nautical.

Epitaph III

I thought often about the card, wishing I had taken it, returning over and over to the different elements contained within that simple note. Unaware that Dad would know a poet’s work well enough to bring verses to mind, let alone choose a piece for an epitaph, it also surprised me that he had thought about his epitaph at all. When he became ill, Dad had no financial or medical plan, not even a will, let alone a funeral plan, except for mentioning once he wished to be cremated. I felt honored that he had trusted me to perform this final duty for him. I feared the note might disappear as things frequently did around Dad, and I considered how I might obtain it. And indeed, the next time I dropped in, the note was gone.

Epitaph II

The card contained my name and the words, “My Epitah”(sic). Waldo-Emerson was written underneath, followed by four lines of poetry. Unfamiliar with Emerson’s work, the beauty of the words still moved me. Evidently, Dad had been moved by them as well, to the extent that he chose them as his epitaph. As he exited the bathroom, I nudged the cupboard shut and took a giant sideways step away from it. Soon after, we left for lunch.
Dad had developed elaborate coping mechanisms to deal with the encroaching dementia; scraps of paper holding obscure reminder notes, and little notebooks full of details about where he went and what he did. All in an attempt to control, in some small way, how his mind was slipping away. Eventually they would become all I had left of him, a record of the world viewed through the kaleidoscope of dementia.

Epitaph I

I'm going to post, in excerpts, an essay I wrote that I really liked and submitted to The Sun magazine. Hope you like it!

The note, taped haphazardly among fast food receipts, flyers and reminders on the cabinet door, caught my eye, largely due to the bold letters spelling out my name. Dad resented anyone prying into his things, so I waited for him to shuffle to the bathroom before approaching the cabinet.
As I watched Dad, I could also see him in my mind’s eye; his height, long arms ending in big, capable hands, always occupied. Engineer’s mind, quick and discerning behind guarded eyes. Age and illness had changed what once seemed immutable. It often came as a shock to see him now, slightly bent over, muscles and skin slackened, eyes vague. Alzheimer’s began tunneling through his brain at 62, insidiously seeping through memories, skills and traits, heedless and intent, a gray-matter natural disaster. Together, we shared his final fragments of lucidity.

No cure.

Billions of dollars were being spent to study this disease, new theories cropped up every day, and new drugs were being tested. The appearance of a new drug, Aricept, made a huge difference in treating the disease. Unfortunately, all drugs were currently only palliative, no cure exists for Alzheimer’s. The price of care continues to go up: in-home care and Assisted Living Facilities were getting more and more expensive, even though professional Caregivers were still paid close to minimum wage. Since Medicare didn’t cover most of these facilities and care options, the resources of both young and old - financial, physical, and emotional - would be strained even more. While my father’s story was nearing its end, others were only beginning the long chronicle of illness and disintegration characterized by this terrifying disease.

Studying AD

While a lot of time and money had been devoted to research of the disease and its cure, very little study had been made of what Alzheimer’s sufferers were actually experiencing. As I did more research and read more books, I found things had begun to change. Fortunately, there were a few new thinkers out there: some thought Alzheimer’s patients inhabited a Zen-like state; others emphasized that patient’s social veneers were being stripped away leaving the freedom to behave and believe as they chose. Considering how different my father’s current behavior had become that last theory seemed the most believable to me. It was important to me to find a facility that would support Dad through this experience with awareness and intelligence, not just with cookie cutter rules and practices.

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.”

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!