Wednesday, November 28, 2012

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

26 comments:

  1. Your book, The Invitation, literally saved my life 10 years ago when it was one of the things that gave me the strength to endure depression and a longer period in hospital. I've recommended it, given it as a gift, talked about it ever since to anyone whom I felt could gain the same support from reading it - over and over - as I did.

    Oriah, I don't know what to say or how to help. I 'm not even sure it means anything, because we are, at least on the surface, strangers to each other. For whatever it's worth then, I can only say that right now I truly and dearly wish I could - somehow - stand with you ... in the centre of the fire.







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    1. Ulrik, somehow having written the story and having it received and held by others does bring some ease. Thank you.

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  2. Beautiful Oriah. So touching. I have aging parents too and although they are both lucky to still be in good physical and mental health, I am noticing the first small changes. As if something that always seemed as solid as a rock (the illusion that our parents will always be there for us and will never change) is slowly beginning to soften and to transform...

    I can only imagine how hard it must be to see your father in this state of mind and I am sending my love and heartfelt compassion to both of you!

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    1. Thank you. And yes, it is like the ground beneath our feet dissolving.

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  3. Oh Oriah... you touched a place in me that has been dormant -- or perhaps I put it away -- while my own father struggled with Alzheimers and passed a year and a half ago. We waked him exactly one year to the day that he entered an assisted living facility only to be quickly transferred to a nursing home in an attempt to "contain" his sundowning. An extraordinarily painful year and, honestly, I thanked God for the infection that took him when it did so he didn't have to endure the pain of being robbed of his memory... something he had expressed he did not want to happen when his mind and body were healthy. Wishing you peace during this difficult time for you and your Dad.

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    1. One of the difficult things is that my father is very fit, even at 80. He has had this disease for at least 6 years and I look at him and know that he could last physically another decade. It`s then that I cannot wish for him to have more moments of lucidity when he is in agony knowing what he has lost. But it is not up to me- or anyone else- it will take its course. Good to held in other`s thoughts.

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  4. Oriah, sending you a huge big warm hug and tons of LOVE. Asking the angels to hug your Dad, too, and comfort him and make him feel better in "his world". I don't have any wise words to share really because there simply are no words which could make your heart ache any better.
    When my Dad had another stroke and he lay there in the hospital bed and I didn't know if he could really hear what I'm saying and he couldn't talk and answer me, I held his hand and told him about all those memories I had of him and me. I talked about the good times and I also told him about the bad times when I felt lonely and abandondend by him. He started to cry and tried to speak but nothing came out. Tears were running down his cheeks and he clasped my hand. Our eyes locked for a moment and I told him that I love him. I guess that's all we can do, tell them how much we love them despite all the stuff that sucked sometimes. I needed to do it for ME, not only for him, to say the things I did. Maybe just talking to him will ease your pain and heartache a little bit, too. Sending you so much LOVE and fairy-beary-big-hugs xox.

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    1. Sabine, that must have been so hard- and yet, I am so glad for you and your father that you were able to speak to him of it all and tell him that you loved him.

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  5. Oriah, this is such a wonderfully written piece about the anquish of this illness, and the courage and love that carries you through it. I hope it can be shared to a wider audience. I recently turned 70 years old. Where did the years go, I wonder. I remember the cancer of my father, the asthma of my mother, and the devastation to her body that was caused my the medicine she had to take and it's effect that eventually took her life. I was with them both when they died. Sometimes living is not easy, because there are heartbreaking changes in all of us, there is loss. Sometimes I am overwhelmed. Then I read something like you piece today and I draw strength and courage. Recently, in one of my moments of prayer/contemplation, I offered thanksgiving for this long life I have had and for any days remaining. A very clear thought came into my mind "Make it count."

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    1. Writing the story has helped me- writing really is my primary way of sorting and praying. And sharing it with others is one small way I hope to make the hard stuff count, by sharing experiences that may cultivate the strength we need to live open-heartedly :-)

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  6. Blessings be to you and your father. My heart bleeds for you both. I wish him the peace he deserves and I wish for you the continuing strength you will need to watch the downward spiral of your beloved father. Oriah, you give us so much of yourself. I hope you can take strength from the love and respect I feel for you.

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  7. Reading this piece, I thought of the Maya Angelou quote: “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

    I am not suggesting this is relevant in any sort of literal way - as you point out, you do not know whether he will remember any of what he felt three minutes after you left, whether he has felt it before or if he will ever feel it again.

    But I can't help but wonder about the nature of memory. I am no Alzheimer's expert, but it would take a lot to convince me that a person's love is utterly "forgotten" the moment someone with Alzheimer's moves on to another place in their psyche.

    I'm not sure I'm expressing what I want to say well enough -- perhaps I am talking about a visceral memory, not cognitive. Not to go Pollyanna on you or anything, just that I have a very deep faith in the power of love, and the places it can reach, and reside, outside the realm of cognition -- in the conventional sense of the term, at least.

    What touched me about this story is the incredible beauty of your love for him, and how fortunate he is to have you.

    Jesse

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    1. I think you're right Jesse- about love that has been there and continues reaching through somehow, on a viceral level- sometimes I know this is true, and at other time I can only hope and pray it is. And still. . . sometimes it does not feel like enough- which is only to say I must face (once again) the limitations of being human, of not being able to control some things, even when it matters so much. Thank you for your support and your insight- it helps :-)

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  8. As others have shared from their love & respect of you & your past writings (like The Invitation et al), I, too, have been touched through the years by your words of invitation, challenge, inspiration & integrity. Thank you. As one who watched and was honored to be a part of watching my father as he struggled with Parkinson's, there's a depth of tragedy to watch one so vital and yet so challenged...I hold you both close in my thoughts as you face each day you are so privileged to have...and send you peaceful, loving energy to embrace what is~

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    1. Thank you Brenda, "a depth of tragedy" it is indeed- and yet, part of this life we are given. Life is still good, even when it is hard.

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  9. Trust, Oriah

    The "soul" does know. Your dear father does know that you love him, that you are there. Isn't that all that really matters? Your presence is the most powerful thing you have to offer. Trust.

    Blessing and my love to you,

    Fritz

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    1. Thank you Fritz- I appreciate the thought and kindness in your comment but to answer your question re: Isn`t that all of what really matters- I would have to say, in all honesty- no. The hope that he feels loved is important but it does not distract from my hope for him to be free from the suffering that I saw on this trip- the anguish and confusion of not knowing who he is, awareness of the loss of the life he knew and loved. Love can soften the edges of suffering and I hope it does for him- but still the suffering matters and I cannot and would not stop hoping for relief for him. :-)

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  10. So beautiful and moving. My father suffered the same thing, similarly, and I found it so strange (cruel, even) that of all his siblings, he, the only one to even graduate high school, much less become a physician, had Alzheimer's. Working through past life karma makes sense to me.

    As I read your post, I went back to my own experience visiting my father and how hard it was to see him unable to express himself. When he was well, he was opinionated, vociferous. The gift for me was that it put me in touch with pure love--visiting him was not about discussing events and minutae, it was about being there at a core level, a heart level. We don't often get to do that, just "be there". He passed four years ago, although he is very present in my life in many important ways. "the vastness of what I cannot know"--yes, and a concept I am going to meditate on today. Thank you for this sharing.

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    1. Thank you Carol. So sorry to hear so many in your family have suffered from this difficult disease. I neither believe nor disbelieve in past lives or karms (which, let`s face it- requires clear defining that is often lacking when folks use the word) although I worked in a mystical system that did posit multiple lives. My problem with the past life karma explanation (aside from our inability to know this) is that it`s. . . .too easy, a way to reassure ourselves that the universe is fair and meritocratic, that horrible things are doled out fairly. Aside from not knowing, I suspect part of what we have to live with is that difficult, painful and challenging things can and do happen to good people. Ah, how
      we want it all to be `fair.`:-)

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  11. Thank you for this beautiful, honest sharing. My mother died 2 weeks ago. She had Alzheimer's and had been living with me for the last 2 years until about 6 weeks ago. I had care givers come in to provide her care but then her increasing agitation & violence made it necessary to move her into a Alzheimer's Adult Family Home. Watching her struggle was so very difficult and yet, moments of Amazing Grace would appear. She died of a sudden, overwhelming infection. She was complete and ready. About 3 weeks before she took her last breath she looked clearly into my eyes and said... "I think I know a way out".

    I know she was facing and slaying her shadows. I also know she was not 'alone'. Blessings on your & your fathers Journey...

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    1. Leonie, thank you for this- it gives me hope that my father will find his own "way out" whether that is by leaving this life or finding a place of peace in his own mind. You must be very. . . . tired. May you rest deeply now that your mother is at peace. Blessings, Oriah

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  12. Sending much love to you and your dear father. My mother suffered multiple strokes over the last 6 years, with the last one rendering her completely immobile, with limited eyesight and no speech. She was held hostage in a body she cared for so well for the last 18 months, and each visit I had with her would leave me feeling heavy in the heart; as most of us feel when nursing, visiting and loving someone dear who is suffering something so difficult to see. I spent her last night with her recently, and it was a long and difficult night as she struggled with every breath. Your words from the Invitation carried me through "I want to know if you can sit through pain, mine or your own, without moving to hide it, or fade it, or fix it" which I repeated like a mantra in my head as I soothed her forehead and wiped away the blood. I wanted her to know I can and I would. Today there is a great sadness at the loss of my mother, but equally the bittersweet relief that she is no longer bound by the shackles of her body. In some small way I feel your conflict, struggle and pain, and wanted to thank you for sharing your words which helped me cope with mine. Much love.

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  13. Pen, I am so sorry for your loss and for what your dear mother went through. Thank you for writing- I take strength from knowing that you were able to do what I hope I can do for my father- to just be with him when I am able to be there, no matter what he is going through.

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  14. You put into words what I cannot and I thank you for it. My father passed 3 weeks ago from cancer. He also had dementia but still had moments of clarity. My family was "fortunate" in these moments to tell him we loved him very much. It is comforting for us to know that he was spared the anguish and suffering that advanced dementia brings. Thoughts of comfort to you on this deepfully emotional journey.

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    1. Ranger, so sorry for your loss. Your comment helps me see Dad's moments of lucidity as not just a curse (as they seem to cause him so much anguish) but also as moments when I can clearly tell him that I love him and be with him in a way that has meaning to him. Hard. Thank you for your thoughts of support.

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