I am bound to my man of the hills
And he is bound to me.
We lump and bump over stones and stumps
Crags and meadows alike to greet
Wrestle the marmot for his whistling rock
I cling to the moss
He scales the peaks
But we are tethered to we.
My husband has Lewy Body dementia. Probably. No one knows for sure but we are losing him, our daughters and I, we are losing him to a disease that erodes his reason, silences his voice, and plays havoc with his physical abilities.
There are not conclusive tests, except post-mortem, for the diseases that steal cognition. So we think that my father died of Alzheimer’s and we think my father-in-law did so, too.… good, smart, hardworking men whom we loved very much.
I thought that taught us how to bear heartbreak.
Our dads were both in their early 80’s when their symptoms presented themselves. Lincoln was only 66 years old when he first started experiencing episodes of confusion in the middle of the night.
We had settled into a retirement in which we were fulfilling the promises made when we were young, promises to always welcome adventure into our lives and to never hold each other back. Lincoln climbed Mt. Kilimanjaro and then rode his bike from Paris to Istanbul. We walked across England, from the Irish Sea to the North Sea. Together we picked up the travelling life we had willingly abandoned 30 years before, a life we had exchanged for the joys of living and raising our children in a little town ringed by mountains and beribboned by two perfect rivers.
I wander along side my travelling man
And he wanders along side me
A winding road, sirens’ laments
Valleys and vistas and Berber tents
Cactus and cedar, eclipse of the moon
To a slip of a child with a wink of a smile
We speak with our hands, a nod, a grin
He wants to keep roaming
I want to be homing
He wanders along with me.
Once again we loaded the Volkswagen camper and headed out, with no clear plan and no timeline. Several winters in a row we wandered to the southern tip of the Baja peninsula. We free camped in palm-sheltered bays, paddling our kayak to the sound of dolphin breath and the bark of seal colonies. We rocked in a small wooden boat while grey whale momma’s and their babies slipped and rolled around us. We puttered up and down the west coast of Canada and the US, clambering down cliffs to reach isolated beaches, finding humility among giant redwoods and Douglas firs. We sat in solitude beside lakeshore campfires and traced the shorelines of tiny, mountain-ringed lakes in the stunning Chilcotin . We poked about in northern rainforests where eagles filled the sky in numbers too large to count.
Then life slid sideways.
I developed a tremor in my left hand and arm. My left leg began to drag. My left arm did not swing when I walked. I started to stumble. My shoulders became excruciatingly painful. Exhaustion plagued my days and sleeplessness my nights.
My GP ordered a scan of my brain. The scan results came back negative.
I waited to see a neurologist who, after a series of physical tests, told me that I had Parkinson’s Disease. The medication helped right away. That was the good news and the bad. You see, if the medication mitigates symptoms, a Parkinson’s Disease diagnosis is confirmed.
My first waking thought the morning after my diagnosis?
I want to go home.
Home. Not a physical place but a place of being, a sanctuary of the self, inhabited by confidence and hope, in which the world, or at least one’s own small corner of it, makes sense. In an imagined future of walkers and wheelchairs, a frozen gait, a frozen face, and a Swiss cheese brain, there is little hope and no confidence.
Despair can become familiar territory but it is not a groove I want worn into my brain. And so, because I am loved and lucky woman, I learn, in time, to be grateful once again for the abundant joy in my life, the staunchness of our
friends and extended family, the good man by my side, and the strong, compassionate young women our daughters have grown to be. I go adventuring inside my head, in my notebooks, finding inspiration in memory, or a trick of the light on a late winter’s evening.
And now it is Lincoln’s turn. Denial can hold the truth at bay for only so long. Nighttime confusion, panicked awakenings…distressing dreams, critters in the the bed, strangers in the house. Our new car flummoxes him. Our closest friends express concern. HIs doctor prescribes medication. Lincoln tries. He tries so hard. The pills leave him depressed for the first time in his life and they make him physically ill. And no one can assure us that, in the end, they will make one bit of difference.
We make a choice to be as open about Lincoln’s illness as we had been about mine, to not close ourselves off or pretend all is right in our world. I know it will be hard news for people to hear.
I stumble sideways and he catches me in his arms and turns it into a clumsy waltz. I dump my first glass of wine and burst into tears. The second glass spills and this time I laugh and wonder aloud if I can’t pour it, should I be drinking it?
We call ourselves “Shake and Baked”.
I tell him how much I enjoy the hallucinated “others” in our house, the benign strangers who begin to appear in the daytime, in only Lincoln’s vision. He sets extra places at the table and makes them tea. He waits for them to catch up when we hike.
Oh, you would have to know him to see the humour in that.
Those of us who have hiked, skied or biked with him shake our heads at the attentiveness paid these new companions. But they become part of our lives; I find myself asking them to watch over him, to help me keep him safe.
And just when I think I am doing really well, feeling at home within this new reality or, rather, this new sur-reality, Lincoln begins to be confused about who I am.
Do you have a twin? he asks me. You look like my wife.
Who was that who hopped into my bed last night?
And then with such kindness, he peers into my face.
Why are you crying?
I have not yet learned how to bear heartbreak.
I share a canoe with old river man
And he shares a canoe with me
Whitewater foam becomes his home
A tranquil shore with sand for my toes
Onward his paddle
While backwards I dig
That moose in the lilies is much too big!
But we share our boat
We stay afloat
Old river man and me.
Our girls live in a pretty little mountain town, five hours away. They have both found admirable young men with whom to share their lives. And there are grandbabies, two of them, beautiful little boys, one for each family. We have bought a small apartment there… a grandchild just one block this way, another two blocks that-a-way. It is perfect. This is what my brain tells me.
We are in the middle of our first long visit in the new place, a month over Christmas. I know that a permanent move here makes sense, for so many reasons, the biggest of which is the opportunity to be part of our grandchildren’s lives. My heart cannot call this home. Not yet.
I awake to a morning that holds the first bright sun in weeks. I fill my little point-and -shoot camera with picture after picture. Golden light spills slowly over mountain tops and I stand, coffee mug in hand, shivering on a balcony that gives view to a beauty I cannot attempt to describe. Lincoln joins me.
I need a better camera, I say.
Why? he says. It’s all right here.
I will be bound to my man of the hills
I’ll watch his stars from a lower ridge
The canoe will carry us both ashore
The road will bear us onward still
His eyes will shine in a small boy’s face
And tender sunset blessings grace
This bittersweet will be will be
And tethered are we to we.