Journeys

I find myself at sea, tossed gently among the pearls of the South Pacific islands. The air is gentle and smells vaguely of jasmine or gardenia, even out at sea. I feel rested and relaxed, an unusual feeling for me these days. As always, after the second guessing and the resistance, I am always always glad to go, to be free, to adventure. This is what we should both be feeling. The flip side of this pleasure is the bad twin of sorrow...for him not to experience this and for me not to have him. "Everything is the same. Everything is different." Wisdom from a friend whose husband just died from this disorder as she described her days. These days he sits and stares, down at his hands, the floor, his lap. He fingers restlessly the edges of his pants, his bib, his fingers curled as if they hold something precious. He scrapes his spoon slowly over his plate, imagining gourmet meals and gooey, delicious concoctions, though there is nothing there yet. What do those vacant blank stares see? Those formerly warm, shoe button eyes, I called them....turned to dark discs of no one home. He asks tonelessly, in muttering gibberish, about the animals he sees, when there are none. My raging has abated somewhat and my actual sadness has increased. Dare I trust that I am gently sliding into the acceptance of this nightmare? I seem better equipped to figure out his needs, and mine, these days. I am planning for my own life, my respite, my fun. I am trying to care for him in such a way that he can find some pleasure in what is left of his days. Our daughter made a collection of her music and got him large acoustic earphones with which to listen. He shuffles around the house, his ears encased in the huge earphones, an occasional grin breaking through the Parkinsonian lack of affect. He will mutter, if you catch him grinning, "My daughter!"

Blind Side

I thought I was angry. I was. I thought I was done. I was. What I didn't expect was the force of love, the strength of our tie, the longing for what we were. He is still here, but these waves of grief feel new and are huge. Perhaps it is the daily grind relief I get from my new helper; maybe it is the sudden intense interaction I am getting from all the palliative care workers who have been in and out of our house. Whatever it is, I am freer to feel the loss and to appreciate this man...not for what the witch Alzheimer's has left behind so far, but for the positive beam of love that my husband has directed at me for 50 years. I looked into his lost, dear, familiar face after dinner tonight and the anger melted away. I took him gently into an embrace. He clung to me, lost still and shaky, but there, as he always has been. Tonight, from the fog of dementia and the stumbling steps of Parkinson's, he returned from his bed to tell me that he loved me. He loves me. He can't put on shoes, and he can't brush his teeth, and he can't wipe his bottom, but his love for me is still evident to him. The lessons here are gigantic. I haven't figured them all out, let alone mastered anything, but they are clear to me. Love is everything. I guess it always has been.

The Great Wall

China or not, I have hit it. It is monstrous and it is final. I can't do this any more. I have no control over my emotions. Perhaps I waited too long to seek help, to put my own oxygen mask on in this bumpy ride, but in any case the rarified atmosphere of poopaloosa has finished me off. I am no sissy when it comes to waste management. Poop and I have been on intimate terms my entire life, through lots of children and all kinds of animals. But the final straw feeling of your life partner un-developing, unraveling skills and controls in reverse order that we learn them from birth to maturity trumps all that. It felt real final to me when we began that part of this journey in August of this year. My daughter's best friend in high school was murdered by a serial killer in their senior year of high school. A freak horror show of a coincidence which took the life of a dear and talented girl and changed the lives of all of us forever. My daughter had put her trust in this relationship going forward into the next stage of life together. Her sister, my youngest child, was so traumatized by it she developed serious panic and claustrophobic traits which haunted her into her adult life. At Holly's memorial service we stayed close to her parents as we didn't know a lot of others and felt closest to them, most LIKE them. Frankly it gave our daughter comfort to be near them also, as if she were somehow near Holly herself. At that service Holly's dad kept manically stating, over and over again, how everything would be exactly the same. That he would come see all the kids' plays at school, that nothing would be different. Each time he said it, it came out clearer and louder and made the sensitives among us cringe more and more. We all knew that NOTHING would EVER be the same again, for him or for any of us there. We all also understood the kind of pain that would have to cloak itself in that kind of full metal jacket bravado and denial. It is this kind of bravado I have been dealing with in myself. The truth is I don't think I have an entire year in me before I need full time all the time help for him. I am cooked now. I am done for. I do not have capacity for green eggs and ham my Sam. I will visit a lot and love you if you let me, but I have to go. I have to be free. I must go. For the first time I am thinking these thoughts coherently. I am not just roaring the pain and anguish. Tiny little threads of thoughts, ideas, pre-plans are beginning to form. Unthinkable before now, I wonder actively where I can have him live so his children, all his children, can gain ready access to him. I will not live forever and I will not live very much longer in fact if I dont make some serious changes. For this very time, right now, I am planning more coverage and help for home and more getaway time for me. I feel like a tourist at this wall, peeking over it into the forbidden city. We shall see for how long that works.

Carnival

Come on! Come on! Come on! Get your tickets while they're hot! Experience the most terrifying adventure of your life! Buy now while our special lasts....two lives ruined for the price of one! In the great adventure that is Alzheimer's there are distinct stages of suffering, not to be confused with the actual stages of the disease process, although they are probably related. First there is the thin knowledge that you have a real disease in your family, not just vague suspicions. I use the word "thin" to describe knowledge that is really just facts. At this stage you have no idea at all what you are facing or the crazy tilt-O-wheel into which you have just been buckled. Here you get tons of interventive help....seminars, doctor visits, support groups beckoning, clinical tests galore. You can wear this stage like a badge: look at us! This is a real thing! And it is ours! The attention from professionals is seductive and alluring. It lulls you into the false sense of comfort that somehow you are not alone, and facts aside, you can now deal effectively with whatever comes. And of course active, actual suffering is still only a looming threat on the horizon. In the next stage clinical testing ends pretty much, doctor visits extend to longer periods of time in between, seminars and meetings start to sound repetitive and are no longer very helpful, your person continues to deteriorate at an accelerating pace, and actual suffering increases proportionally. A sneaking suspicion of the violence of this bumper car ride begins to formulate and with it a a raw snarling anger sets in. "Take care of myself?! How the hell am I supposed to do that?!" During the long and bumpy section of this ride, you start to really understand what you are into and up against. You complain loudly and bitterly, to the doctors, to the social workers, to your friends and family, to God. It is no longer fun to wear your badge. We have now entered into a third stage. My cries have resulted in the pronouncement that he now needs "palliative care". This terminology suddenly creates a plethora of visits and intense visitations by another cadre of professionals. Nurses, therapists, social workers and others flood into our home offering suggestions and working on "our issues". The rain delay at the carnival has ceased and the crowds have reappeared. It is also at this stage that I have buckled under the assumption that just because I am able to do all the duties required to care for him, I actually will not survive doing so on my own. A full time person works in our home Monday through Friday, helping me care for him. There are still long stretches of time we will spend in New York with our children and in Ludington enjoying our summer home. These stretches of time loom without planning yet for any kind of help. I am not yet enjoying this carnival but I feel that I am making plans and taking steps that offer improvements in both our lives.

Word August 1, 2013

I love language. I love the sound of words, the alliteration, the musicality. I love the mystery, the puzzle aspect of jumbling symbols together to make extraordinary sense or to simply communicate. Reading and writing are my mainstay, my safety net, my escape. Or rather were those things. I can't concentrate well enough to read. I forced myself to read a book, with my daughter's prodding, and although I enjoyed the book, it was an effort to get through. My issues, not the author's. His language is totally gone. He has vestiges of phrases, more a brain habit than meaningful word patterns. He sits like the oldest tome on the shelf--stiff, yellowed, dusty--some pages glued together and indecipherable, others smeared by mildew and damp. Of course communication is not only through language, but when it's your own most special venue, losing your husband within it is excruciating. His doctor says it's time for "palliative care" and we can stop giving him large pills that are difficult to swallow and to handle. (He sometimes chews them.) Her words startled me a bit and brought me abruptly from my strange new denial place, which looks a lot like my old denial place--anger. The professional pronouncements, when they come intermittently, jolt me into the reality of where we are, and what's happening. I question myself constantly. "Wait! Maybe I oversold the severity of symptoms! Maybe he isn't slipping away that fast! You know my penchant for drama!" Have I misrepresented him to his doctor? Am I hastening his demise by eliminating some of the many pills he's taking? And on and on, down the crazy road of balancing reality, denial, hope, and despair. I am a reader but am also a fighter. It's not germane to me to "be" in the moment of watching my partner become my child. Words can't stop this train, and as much as I enjoy their taste, I can only angrily spit them out on these pages.

Drought July 28, 2013

My bones are picked clean. The buzzards of fatigue and stress, self loathing, contempt have ravaged my skeleton and left no tiny little morsels of kindness, toward myself or toward him. He continues his inexorable slide into the vast emptiness of the Alzheimer's desert. He stands, motionless in that space until directed to sit, to stand, to walk. His shuffling gait getting more palsied, weaker, slower. I scream myself hoarse: at him, at me, at the universe. I scream so loud and so long, I see spots before my eyes. You would think, smart girl that I thought I was, that I would know how awful I will feel about my screaming when he's gone. But you see, I DO know this; I just can't seem to help it. I want to punch something all the time. There are mars and scars and holes in my house bearing testimony to this. It is actually no surprise I am so accident prone. It helps to be with others, not so alone in his care. It helps me monitor my own infantile reactions and gives him someone with a little distance who can be always warm and kind. The only advice I get from professionals seems to be about how to engage him and/or how not to judge myself. I flat don't want to do the former, and cannot possibly do the latter. I want to be free of all this. The constant, never ending need, the waste management, the pitying looks from others, the obvious end of my rope for me. I am sick to death of all of it. I am tired of hearing my own whining. Perhaps that's why I scream.....to hear something different coming from my lips?!

The Abyss July 21

As I move along the inexorable ruler of time, I trust my elders less and less. I yearn to be with younger folks...especially my own family as they have the most appreciation for me. Elders can no longer be trusted to be there. To fool the vagaries of death's sure grip. They will fall off that moving sidewalk of life, right in front of you, right when you need them most. No, they are not to be relied upon. Look to the youth to feel happy, reasonably secure and satisfied. Although their company is not absolutely fulfilling either. They are tentacled to the demands of their own places in time. They must provide. They must oversee their young. They have less actual free time to just be, to live in the moment. Hmmmmmm...the very young then? They are remarkable to be with, to study, to watch develop and learn to think. But it is a singular avocation. They can't return the favor of deep thoughts acquired through experience and over the full spectrum of time's passage. That leaves the peers and when peers sicken and fall over like the elders, it is terrifying. Like a raven's wings, dark and broader than you would guess, a screaming sadness, a grief overcomes me. Perhaps I see a more distinct decline in him, perhaps I am juggling various prescription drugs in my efforts to sleep, to "..knit up the ragged sleeves of time." (sorry, Mr. Shakespeare) Perhaps it's that I started to read for the first time in a long time and the choice, "The Glass Castle," was so bleak and such a vision of strength in someone else's suffering, that mine pales by comparison. Perhaps it is the yawning clutches of death's grip I see in my old cat and occasionally in my beloved grand dog. Perhaps it is the loss of my beloved Aunt, who was so special that at 96 she still had hundreds of people at her funeral, mourning and keening their deep sense of loss, even as they tried to celebrate her long wonderful life, filled with wonder and service to others. It is most likely all these things together. But rulers and ravens aside, I am on a journey of unknowns and I am fighting hard for the faith to see me through.