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.