Why Today Is Different

What carries us when the day is different, harder than it has ever been before?

Making the trip to see my father is often tiring. He has advanced Alzheimer’s and is living at a facility for folks with dementia who have become too aggressive to be cared for safely elsewhere. The staff are highly skilled, patient and caring, often light-heartedly making the residents smile. Still, the six hours of driving and the ache of seeing how the disease is affecting him usually leave me a little weary at the end of the day.

Not today. Today the trip is exhausting.

Often Dad doesn't know who I am. And that’s okay. I don’t need him to know who I am. I want him to be free from suffering, and I cling to the hope that his forgetfulness allows for present-moment-contentment, or at least some freedom from feeling frustrated about something none of us can stop or reverse. When he doesn’t know who I am, I hope and imagine that a moment of walking arm in arm with another or drifting off to sleep with someone holding his hand gives him some pleasure.

Not today. Today when I touch his arm and say, “Dad,” he turns and looks at me. His whole face lights up, and he says, “Oh!” with real recognition.

He’d been shuffling around the room in navy sweat pants and a grey t-shirt, white socks gliding along the tile floor. Always in motion, more agile than most, several inches shorter than I am, shrinking but still wiry strong. He never could sit still for long, always needed to be doing, moving, working.

I touch his hair, white and sparse but well trimmed, stroke his cleanly shaven cheek. As he ages his face seems to collapse like a balloon that is slowly losing air. He must be feeling generally calmer- the staff do not push haircuts or shaving on anyone if they are irritated or resistant. I stroke his arm, take his hand and tell him I love him. Usually he is content to let me walk or sit with him.

Not today.

Today there is something he wants to tell me, something he needs me to understand. “Real. . . . everyone was. . . . where. . . . ladder. . . I don’t. . . ” His tone is urgent. Mini-strokes robbed him of words even when comprehension was better. Sometimes I can tell by his intonation and gestures that he is trying to make small talk, asking about the drive or the weather.

Not today. Today, he struggles with the words, his eyes filling with tears.

I have only seen my father cry once- fifty years ago, when I was eight. On that day, Lassie, the collie who had been his only companion growing up in an impoverished and brutal household, had been hit and killed by a truck on the highway. My father wept at the side of the road. He was thirty. I remember feeling frightened and protective at the same time. 

I feel the same now. I tell him it’s okay. I keep my tone calm. Usually, he is quickly distracted, his attention drawn to exploring some sound or movement in the room.

Not today.

Today there is something he has to tell me, a window of recognition and a need to communicate thrashing against the barrier of a brain that will not give him the words. I move closer and rub his shoulders. I keep looking into his eyes- blue-grey like mine, transformed to green when either of us wear that colour, his favourite. He watches me. “I don’t. . . .” I wait and will my heart to understand what he wants to tell me. It has been months since he has said a complete sentence.

Not today.

Today, he backs up a little and tears spill from his eyes following the lines on his weathered face. Leaning forward he speaks, wrestling each word into being in an impossible act of will. His voice rises, the words becoming a wail of terror and anguish: “I don’t know who I am!”

I step closer. He leans into me, trembling, sobbing. I hold him. Somehow I speak, squeezing words past the sharp rock that has formed in my throat, making myself breathe, keeping my voice steady. I don't know if he understands me or even hears me- he will no longer tolerate wearing his hearing aids- but I pour my heart into my words. “You’re my father. You are Don House, and you’re my father. It’s okay Dad.” My throat closes.

My father has always had the greatest respect for and faith in my social work training and my work with groups and individuals. I can feel how recognizing me has ignited both his anguish and his hope. He is asking me for help, is hoping I will know something that will help him make sense of what is happening to him. And I would give anything to be able to do so.

Not today.

Today I worry that recognizing me has actually made it harder on him, although the nurse tells me he regularly goes through a wide range of emotions pretty quickly. Even today, in between moments of tears and hugs, he wanders away and is happily preoccupied with movement at the end of the hall, or a sound from the dining room.

People who know about my Dad regularly tell me with great conviction that Alzheimer’s patients are working through past life karma, are souls who have chosen the disease to learn something, are truly content in a reality closer to the divine. I understand the need to make sense of something so horrible, the desire to seek or offer comfort by claiming as true things we simply cannot know.

Not today.

Today, my father's plaintive wail pulls me to stay with what I can know. Today, I am with him in his anguish, and later, on the drive home I will remind myself that I do not know whether he will remember or re-experience this heart ache and confusion three minutes after I am gone, whether he has felt it before or will ever feel it again. Today I accept this sliver of comfort from the vastness of what I cannot know.

Today, driving home, I let the tears quietly stream down my face, and I offer a prayer fueled by the ache in my chest: "Help him. Please. Help him."

Today I ask Love to carry us both, because there is simply nothing else I can do.

Oriah (c) 2012

Leaving Normal

Each time I cross the threshold, I know I must leave behind my ideas of “normal,” but it takes me a few minutes to let go, to relinquish the familiar in an effort to avoid emotional vertigo. Resistance is futile and painful, like muscle being pulled from bone.

Someone has painted the inside walls of the dayroom to look like the outside of a log cabin- a two dimensional porch, bright green grass and ambivalent flowers depicted close to the floor. Initially I find it garish, jarring, but with the natural light coming in through several windows in the room and the mental confusion of the residents, I can see how they might actually be comforted by the illusion of being outside, in front of a cottage, on a warm summer day.

Even after all this time, I look for the man I knew- the one with a ready smile, and quick, sure, energetic movements; the one who, just two years ago, would hug me so tight when I arrived at or left my parents’ home that all the air would be expelled from my lungs; the one who was always moving and doing, chopping wood, cutting grass, tending the garden, clearing snow from the driveway. . . .

I see him now, my father- smaller and greyer than he was, slowly making his way around the room in an oversized mismatched sweat suit and someone else’s shoes. He will no longer tolerate hearing aids or glasses. I approach slowly, not wanting to startle, struggling to leave my impossible hopes behind.

I touch his arm and he looks into my face. Recognition and confusion pass over his features like clouds crossing the sun. I speak quietly, deliberately relaxing my body to fit into the pace of his world. He does not understand my words but responds to my tone and body language. Realizing that I am not asking something of him that he may not be able to understand, he relaxes. I walk with him, following his lead, sitting when he does, stroking his arm, touching his face.

My soothing tone and movements are not just for him. Inside, a part of me is screaming in protest. This younger self arises each time I visit this place, filled with grief and rage at the cruelty of the disease (Alzheimer’s) that is shaping my father’s life. Part of me is having a hard time accepting that there is nothing more to be done, that this is beyond our control. I softly touch the skin on the back of his hand- fragile, translucent parchment- to say to myself and to my father- “It’s okay. This is what is. We can be with what is. We can love in the midst of all of the conditions over which we have no control. Breathe.”

And slowly, as I find a calm centre, I slip across the border from the world's ideas of “normal” to being with what is. Here, now, a smile,or a moment of connection and tenderness outweighs all other priorities or plans, all the "normal" measurements of accomplishment.

Other residents come up to me. Some try to talk, others just sit close. One woman moves continually, incessantly calling out random syllables- “La, la, la, la, ya, ya, ya, ya . . .” Suddenly she stops in the middle of the room and, looking at the rest of us with a surprising and momentary gaze of clarity, says emphatically, “THIS is NOT working!” Soft laughter ripples around the room. One of the staff gently takes her arm to walk with her and says, “No Gladys, it’s not. But it’s okay.”

And I think about all the groups of people thought of as being outside “normal,” somehow less a part of the world or daily life: those who are physically or mentally ill or injured (my chronic illness has often put me outside “normal;”) the very old or very young (and I think of being home with babies and feeling disconnected from the hustle and bustle of “normal” life;) in an affluent society- the poor and homeless; those whose beliefs are radically different than ones expressed in the media; those whose colour, size, appearance or sexual identity does not fit the dominant cultures’ mould. . . . . 

And I realize just how much life is happening outside “normal,” and I wonder how our notion of “normal”- what is seen as ideal- could be expanded, gently stretched to include the real, to hold all that is alive, breathing, feeling, sensing.

Or perhaps there really is no “normal” against which we need to measure ourselves or our lives- a process that too often results in shame and disappointment.

Because the truth is, there are no conditions that put us outside love. And that’s a reality I am willing to embrace in every moment.

~Oriah (c) 2012

(Note: for those who do not know- my father has advanced stage Alzheimer's and is a small ward in a mental health facility for those with dementia who have become too violent to be safely cared for elsewhere. My father was never a violent man, but in the latter stages of the disease he has injured several people. Most folks stay there for a few months so the staff can discern triggers for aggressive behaviour and residents can return to being cared for closer to their families. Dad has been here for a year. His violent outbursts follow no discernable pattern and often appear to have no external trigger. The care is truly wonderful, although I admit I wondered on my first visit if the staff were all on valium. They were so relaxed, consistently moving and speaking very slowly. Of course, what they know is that folks who are not able to understand much in their environment are hyper-alert to and potentially triggered by the slightest tension in others. I am deeply grateful for the tender care they offer my father. They are truly earth angels.)