"Sherman made the terrible discovery that men make about their fathers sooner or later. . . that the man before him was not an aging father but a boy, a boy much like himself, a boy who grew up and had a child of his own and, as best he could, out of a sense of duty and, perhaps, love, adopted a role called Being a Father so that his child could have something mythical and infinitely important: a Protector, who would keep a lid on all the chaotic and catastrophic possibilities of life." 

- Tom Wolfe

[photo: Steve (my dad and protector), b. January 1935 waitin' for breakast with his great-grandson, Riley, b. June 2005]

It’s not often that I hear something new. It must be my age. But a presentation I attended earlier this week, part of the "Friends Across the Ages" speaker series, had such a different spin on it that it really opened my mind. It was on dementia, which is not a favorite subject of mine. It hits too close to home; my father has it as did both of my grandmothers, and I am, honestly, terrified of it. I dragged myself to this meeting because the title held a little promise: “Strengthening Relationships with Those in Your Life Who are Dealing with Memory Loss.” I went out of daughterly duty to my dad, hoping for something to help my family. I came out with a new perspective, and a good deal of hope.

Carolyn Lukert, from the Center for Dementia Education, opened by asking what our reaction might be if a friend or family-member called to tell us they had just been diagnosed with dementia. The responses were variations on a theme: sadness, grief, fear, confusion… She went on to say that many people feel the way I do – that they would rather die than get the diagnosis.  My father said the same thing once. A diagnosis of dementia, for many of us, is not only a death sentence, but a tragedy – a dehumanizing tragedy where the victim will live the rest of his or her life embarrassing others and humiliating him/herself. How else to respond but with sorrow?

Well. Lukert framed it as a diagnosis similar to what cancer was fifty years ago. You got the diagnosis and disappeared, prepared to suffer. It seems unbelievable now, but my own grandmother and grandfather were so embarrassed by her breast cancer symptoms that they wouldn’t speak of it. Now we have pink ribbons and speeches and marathons and all kinds of support. We walk with people with cancer and laud them as “survivors,” however long that survival lasts. We have learned to accompany people with cancer, to appreciate their struggle and to help them continue to live their lives with human dignity and grace.

Is it possible that a change in attitude could transform a dementia diagnosis as well?  It is according to Lukert.  Yes, people with dementia may say and do embarrassing things, and god forbid we should feel awkward, but what if we granted them the same abundant patience and humor we do with young family members? What if we concentrated on spending meaningful time with our loved ones with dementia instead of shunning them because “they don’t know whether we’re there or not.” What if we learned to help them enjoy their lives, making accommodations when they become confused or agitated? How can we educate them, as well as ourselves, to better handle their loss of mental capacity – much like we educate people with cancer to handle their losses? Lukert gives a number of practical suggestions from how to touch them and talk with them to how to accompany them in doing the things that have always given them pleasure – from shopping to going to baseball games. She suggests that by offering to help a dementia patient count change at the grocery store, order at a restaurant, or re-meet an old friend we are doing something similar to what we do to help folks in wheelchairs enjoy life to the fullest. We build ramps.

These are ramps of understanding and good humor and love for people regardless of their mental capacity. She brought up some examples from her own experience of visiting residents in a nursing home where the right kind of touch, tone of voice, and attention could reach a person in the most advanced stages of dementia. It’s our responsibility to learn how to accompany people through this disease, to endure the awkwardness, to help them to enjoy their life as much as possible for as long as possible – out of love and out of respect for their continued humanity.  We all need ramps at times, and often it is these very people who made them for us when we were young or lost or needing help and guidance in our own changing lives. There is so much real life to be lived and shared during difficult times of change; it's a shame to miss out on the good in it out of fear of the awkward. 

At the end of the presentation, Lukert asked us if our minds had changed at all or if we might have a different reaction when that phone rings someday. She suggests this:  “I will be with you, whatever comes. We are in this together.” 

                                       {photo: my sweet father shortly after his diagnosis}

Science says time is not
the line we humans sense
but it bends and folds and perhaps
happens all at once or again
someplace.

Which explains my grandparents
still in their kitchen
on an autumn morn arguing
about oatmeal as a fire
sizzles still in that woodstove 
somewhere.

And my folks waiting for my
return to Colorado
in the big house they bought
for this while they
bump down a dirt road in a sweet jeep
somehow.

And my eldest daughter stirring
in soft fleece, a warm lump
in a crib with yellow sheets,
waking with the sun,
while my first love walks
toward me in a glow of streetlamps,
still.

{photo: great-grandparents, grandmother, and granddaughters on a warm fall day once}

The End of Summer has become a holy season for me. It's not just the waning of summer heat - although I am apt to fall on my knees in gratitude the first night the temperature dips into the sixties. These weeks have become a time-out-of-time to ponder, reassess, and move forward. It starts around my birthday in late August, which I've often thought of it as a last gasp opportunity (after the New Year and Lent) for "resolutions" and the possibility of actually following through with a few of them. It continues through the early weeks of September. In recent years, the anniversary of my son's cancer diagnosis has added to the pondering, and to its complexity.

A bit of wisdom I feel I've gleaned from this is how perspective shifts over time. This year, Ben called me the day before what is known among a lot of cancer survivors as "D-Day" to confirm that it was indeed that next day - a very good sign that the memory is receding a bit. He was planning on celebrating the six year anniversary with a heroic bike ride up a very steep, 2-mile mountain road near his college - six times (he did it!). He said what I have often thought in recent years: "If I had only known during those years how things were going to turn out, it would have been so much easier."

Yes, indeed. That is what perspective is all about. Six years out, things look different than we saw and lived them at the time. From my own perspective as a mother, I was almost entirely focused at that time on protecting my child,  whatever it took. But the fact that I was also responsible to Ben's three siblings - all young adults at the time: a brother beginning his sophomore year in college, a recently graduated sister starting her first week at work, and another sister who had just become a mother - called me out of that laser beam focus occasionally. My own head and heart would be crumbling with despair at his latest complication and his overall prognosis, but I would gather myself together to explain things to my children in the best light possible, with hope and the details that supported that hope. Ben was strong and young, he was getting the best care possible, we were with him day and night. Telling the story to them helped me reframe it for myself. And it was all true, as true as my fear.

Even in regular day-to-day life, I've found this to be a helpful technique in gaining perspective. During stressful times, telling your story from a different angle - in the third person or from a different time frame can truly help one get a grip on the complex reality of it.  "It was a strange year, full of change and confusion ..." or "She sometimes wonders if she can make it to Friday, much less to old age." A bit dramatic, yes, but somehow seeing myself as a character in an un-folding story, or an actor in the middle of a movie, helps me see that more is coming that I don't know yet, and that I have a hand in shaping at least a part of the tale. 

This is the key, I think. To somehow get yourself to wondering what will happen next, instead of dreading what you most fear. Curiosity instead of cringing. One interesting thing about life is that we never know the ending. And as comforting as it might be to have someone whisper to us what happens next, what kind of life would that be? We need possibility in all its limitlessness - we need the capacity to realize hope, even in the darkest times.

Pema Chodron was one of my guides during that hard time and still. "The gloriousness of life and the wretchedness of life need each other. . . We can become quite arrogant whenever everything is going our way." Wretchedness, and even the depression that sometimes follow, is the muck we work with to create something interesting at least, if not always beautiful. We have to find a way to open up to "the whole thing," she says.

I think we must have an innate capacity to do this. The anniversary of the terrorist attacks of September 11 falls during these holy weeks too. This tenth anniversary seemed to me to focus less on politics and more on individual and communal loss, and love for one another. Watching footage from that time and listening to the immediate commentaries, what you heard from the "(wo)man on the street" is not the rhetoric we heard from our leaders justifying retaliation. What we heard was heartbroken grief at the immensity of the loss of human life and wondrous gratitude and love toward the people who reached out to one another that day. You hear deep pride in our resiliency, and in our ability to suffer great loss and open up instead of shut down. A glass of water to a stranger, a held hand, and "are you okay" echoing all over the blasted cities and rippling outward.

Because it is possible to let sorrow and grief and shocking twists of fate soften us, I want to believe in it as a way forward. It is hard to stay there, as we saw post-9/11 and as we witness in other tragedies. There is choice in there someplace - to cringe and harden or to reach out and wonder. From my current vantage point in middle-age, I can tell you that on a personal level it is an ongoing struggle that does not get easier. But it does get interesting, more so with each year. And that is why all anniversaries are worth celebrating, or at least observing - the ones obviously life-giving like a birthday, and the ones that continue to shape a life, which are often hugely difficult at the time. It is so big, so complex, so difficult, and so beautiful. C'est la vie. In late summer, I am reminded to keep my eyes open wide, seeking wonder, giving gratitude.  

The obligation is very great and moves two ways. The old have an obligation to be exemplary, if they can–and since nobody can be completely exemplary, they also have an obligation to be intelligent about their failings. They’re going to be remembered in one way or another, so they have an obligation to see that they’re remembered not as a liability or a great burden, but as a help. And of course the young, the inheritors, have an obligation to remember these people and live up to them–be worthy of them. So it’s an obligation that goes both ways, and it’s inescapable. Once you become involved in this sequence of lives, there is no way to escape the responsibility. You inherit, and in turn you bequeath an inheritance of some kind. 

- Wendell Berry

I am heading to Colorado this week, helping move my parents to Texas – a place they lived for many years before they retired. My mother will live in an apartment down the road from the nursing home where my father, suffering from "profound dementia," will spend the rest of his life. This situation is a far cry from the happily retired life they were living only a few years ago – skiing in the winter, hiking in the summer, entertaining friends, visiting grandchildren.  My father seems lost, my mother beside herself.   

His decline has been like the proverbial downhill snowball – starting with tiny, confusing changes in his behavior, gaining speed as he struggled with delusions, and then quickly burying his ability to function independently as he forgot how to pay the bills, to read a book, to tie his shoes. The last Sunday crossword puzzle he attempted rested, partially finished, on the table next to his chair for months after he quit trying.

When he became incontinent and started wandering confused in the hills around their home, my mother felt it was time for him to get round-the-clock care, although we all had mixed feelings about it to the end. It was remembering something my dad had asked of us years ago that finally tipped us over the edge - that we promise to place him in a nursing home if he ever became as lost and dependent as his own mother was at the time. I know my "old dad" would want this.  I want to honor this clear wish of his, even more than I want to indulge my own desire to find a way to keep him home.

Never an "easy-going" man, he was – anyone would say it – a good man, an honest man, a hard-working man. He grew up during insecure times - the Great Depression followed by World War II. His father was overseas during the war years and was a troubled man at home, taking out his own insecurities on his only son. Older relatives marveled at what a responsible and conscientious boy my father had been, traits that stayed with him throughout his life.  As a father, he seemed to see himself primarily as a "provider" and spent long hours at work. It took me way too many years to realize that this was his way of loving us – to work hard to make our lives easier than his had been.

He is still loving us, I believe. As confused as he is, as slow and as helpless, he is kind, compliant, usually quiet – clearly not all there, but seemingly at peace with it now.  He's made this much easier for us than it might have been. While he was dumbfounded when he was told he could no longer drive, he transitioned to the passenger side with a fair amount of grace.  He was patient with us when our reality suddenly diverged so distinctly from his, allowing us to bring in firewood from the shed, but keeping a sharp lookout for the mountain lion he had "seen" raising her cubs in there. Only once did he really break down within earshot, heartbreakingly, to a friend: "Please help me, Larry; I am so lost!"  Mercifully, that realization seems to have passed.

I cannot begin to imagine what it's like to no longer be able to trust your brain to interpret the world accurately for you – to see mountain lions that aren't there, to believe that John Wayne is your new roommate, or that Oliver North is arranging one last B-52 flight over Russia for you and your crew (oh, why could he not have delusions of Gandhi?). How else do we know the world except through what our brain interprets for us?

Yes, he is lost.  But some of his most essential qualities remain - the courage, the stiff upper lip, the love in his voice when he calls me "honey," the protective impulses of the good father. These sweet remnants will go too, we are told, as our father continues to wander away, body and soul. But take everything else, this disease cannot take our love for him. We have known and loved him through most of his "manifestations": young father (he was 23 when I was born!), sometimes absent provider, adventurous retiree. We can only keep loving that good man now, and backward through time to the child that we didn't know but whom he may most resemble at this point. He will not be lost to us.   

[photo: my parents on the road to Silverton, summer 2008]

When I was a little girl, my grandmother remarried (my grandfather died when I was eight). Her new husband, Rudy, was German and introduced us to all kinds of interesting things like bloodwurst, stollen, and herbal tea. Whenever I smell a chamomile teabag I am transported back to those sweet days of learning about a different culture from a different grandfather. Rudy, who never had children of his own, became the great-grandfather my children knew and loved before he died - in a sauna on a cruise ship at 90.  

Anyway, I grew chamomile during the late winter and early spring on our south-facing front steps and later in window boxes. It's delicate ferny leaves and tiny daisy-like flowers are now beginning to fry to a crisp. So I am harvesting the last of them. I'm going to try re-potting them, cutting them back and putting them in a shadier area to see if they will somehow survive the summer. I'm not optimistic. 

But I will drink a cup (or two) of tea to them. A tablespoon of fresh or a teaspoon of dried flowers, steeped in boiling water, with a bit of honey makes one sweet cup. And it tastes like 1970, in my mother's kitchen.

Chamomile tea is supposed to be good for anxiety, stomachache, pms, headache, and insomnia. I should plant more next year.