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.

Insights July 11, 2013

I am a certified psychometrician. I have another Masters degree in reading and language disorders. I have a PhD in organizational leadership. I am trained and skilled in conflict resolution. I am unusually kind and loving toward animals, all animals. I am pretty sensitive and decent to human beings as well. Can anyone help me understand how I can shriek myself hoarse, until I see stars, and verbally abuse the man I have been married to for 45 years, the father of my children? I understand his disorder. I realize he cannot help what he has become. I even have enormous empathy for his feelings of loss.....and yet..... I would really like to know and understand the size of anger that happens to me under certain circumstances...why do I want to leave him standing in traffic when he cannot learn or remember no matter how many times he's shown or how recently I've demonstrated, for example, showing him how to buckle his seat belt in the car. Not only can't he remember, he complains in such a way that he has decided it's all my fault. No matter what has happened, he self protects into "I told you that would happen.." So it's really all my fault. I think I must have been a princess all my life. Although I certainly have had the requisite amount of self esteem and the typical self centeredness that comes with that, I thought I had always been pretty sensitive to others and their needs. Maybe not. Maybe I have really been a codependent type martyr and only nice for what I could manipulate out of it for ME. Because I remain enraged at what has befallen both of us with this disease and I rail about it every day. Out loud.

Dreams and Nightmares June 23, 2013

He used to leave me breathless, running behind him, trying to keep up. He didn't mean to. He was absentminded, even then. His mind churning and considering, planning, thinking. Admiring the glories of color and substance on our long walks. Long, intimate conversations, not always about deep thoughts, but always dreaming, planning, sharing. I would complain that he needed to stop whistling and slow down! I would plead with him to notice that I couldn't comfortably keep up and couldn't engage well in our conversations, his long legs and restless energy making a mockery of my efforts. Oh how I wish I could run along behind him again! How I could hear that irritating whistle! Now, he shuffles aimlessly, tiny little three inch steps at a snail's pace. No whistling, no coherent language left. He mostly sits, stooped over, his eyes closed, his seat growing damp with the mindlessness of urine. He gets angry when I try to engage him in activity--this man who loved to walk!! He complains of fatigue if he has shuffled behind me in a grocery store for less than an hour. He gets irritated if I ask him to do anything at all, complaining exactly like he used to when he carried probably more than his fair share of our load.

I AM a doctor! June 23, 2013

I am running an unlicensed nursing home. I work full time here. Unpaid. No time off for bad behavior. One cat has kidney failure and needs subQ fluids given in a drip. Another has a thyroid disorder which currently is controlled by medicine which takes constant monitoring and blood checks to make sure we are actually controlling the thyroid and not killing her liver and/or bone marrow. One dog needs medicine to control anxiety and another to prevent bladder stones, to which he is prone and has had two surgeries to correct already. The other dog is essentially worry free, though she gets painfully constipated and needs help and watching. Then there's the old guy. He has no conscious language left. It no longer stops him from discourse efforts of course, but he makes absolutely no sense. And he has no idea what language means when he hears it. He no longer can safely do anything at all for himself. Wiping his bottom, washing his hands, brushing his teeth all require someone else's efforts if germs and dirt are to be cleaned away. I remain mad as hell about him, partly because he looks like my husband, and I can't stand that my husband is now some kind of pathetic dork. But also I think anger remains my safe go-to emotion rather than the screaming grief that actually consumes me.

Baby Steps

It's a wasteland of waste products and treatment. It's a miasma of mess. It's a folklore wolf land with rotten teeth and constant growling. You know what's way harder than wiping someone's bottom, who doesn't understand simple commands like bend over, like washing all the bed linens...and I mean ALL the linens, duvet, cover, pillows and their covers, comforter, both sheets, and pads every single day? It's doing all those things when you yourself are sick or not feeling well. All the good intentions, the new techniques learned in therapy, most of the kind thoughts are lost in the despair that you will never have a moment to yourself to rest, to recover, to pamper yourself to wellness. Never, that is, until you do have that time, and he is no more, and you are then suffering but also overwhelmingly guilty about those feelings. You know what's even harder than that? When you have had a long day of doing all that, and you yell out to him as he is about to flush his socks down the toilet, and he turns to you with those lost brown eyes and says wistfully, "Do you really hate me that much?" I find myself supremely accident prone lately. A broken foot, a chipped tooth, a cut lip, scratches galore, and bruises everywhere. I am dropping things, breaking things, pinching my fingers and stubbing my toes. Everyone does some of these occasionally. I am a study in constancy of accidents. Is it fatigue? Desperation? Depression? Self loathing? I spoke to a new therapist who was direct and helpful. Somehow in a few sessions with her, I could internalize the truth that we are not good at everything, that "it takes a village" reflects that we need each other. She also short circuited my "yes, but's" related to getting help for his care and I actually have those plans started. A very kind woman has started coming on occasions when I need relief and beginning in September will be coming on a regular basis. I have decided that I can no longer save money for when I can no longer take care of him by myself physically. I am already at the place where I cannot take care of him alone, emotionally. I am going to loosen the purse strings with the hope of relieving the heart strings and finding my husband again. I leap forward to an unknown future where my carefully squirreled away pile of nuts may not last or be enough. But I am alive now and in need now, so I leap in faith.

On the Breath

Something has happened to me. A primal scream ago I was losing my mind to grief. I had wrapped myself in insane levels of anger and was shaken with shame for my behavior toward the sweet soul of my lifelong partner. Somehow, some way, like a crab scuttling over the dark sands of the ocean floor, a small hope came sideways, slipping into the corners of my mind. It might be what is referred to as "acceptance" in this grief arena. An enormous weight has lifted from my heart, just ever so slightly, but in the weight of grief, any amount of relief is magnified in size and power. I am so grateful. Within this past week, I hit some kind of wall. My personal "yawp", as Walt Whitman would say. I was reduced to actual primal screaming. As I visited the various professionals I had made plans to see while home--the dentist, the doctors--a pattern of response came clear to me. They all witnessed our behavior and suffering and said the same thing. It was time to make various plans. Our neurologist said directly that it was time to look into a place for care that wasn't our own home. I was desperately grateful for the straight talk I heard from her and from the other professionals. It's not that I am ready to make plans quite this extreme yet, but it was somehow comforting to hear seasoned, experienced professionals acknowledge the degree of loss. Small, but huge, benefits ensued. Suddenly, though it was still irritating to tend to the chores of complete responsibility for another adult, my rage abated. My heart feels like it is daring to melt just a little, though I am aware that I will be vulnerable to more pain that way. At this point, pain is preferable to the agony of disappointment I have felt in myself, in my own inability to live up to my image of myself as a kind person. One major dilemma for caregivers is just this thing...our judgement of ourselves as we struggle to be more than what we are. This journey started with the drama of new loss, with an almost insincere grief (looking back) which was actually denial I think now. Following that came the growing realization of what we were into, and the full scale mourning and wailing. I got desperately tired of crying. Gradually my defenses came out in anger and in that valley I have been struggling for over a year. I think, and hope and pray, that I am coming out of that valley into acceptance. I know from experience in this journey that nothing is clear or complete in these stages. I will fall into fits of despair and will most certainly experience monumental anger. But I do feel a kind of peace this week that feels like a change, albeit small, but a seismic shift in my own mental well being. His sister called tonight and as I searched for things to tell her that I know she would enjoy hearing and that would make her happy, I told her about our new grandson. I shared with her that whenever I wanted to see Stew smile, all I had to do was show him the latest picture of the baby and he would light up inside and smile his old big smile. She started to cry and told me she was so desperately grateful that he had someone to love him so well and to take such good care of him. A few days ago that would have made me feel terrible as it was in such contrast to my own judgement of my care. But today it made me both surprised as I hadn't thought of that action being a kindness and also happy that I could make two wonderful people happy by my actions!

Requiem

Alzheimer's is killing me. For all I know, it has begun its insidious tortuous path within my own neurological network. Certainly it is taking its exacting toll on my general health in stress, enormous stress in dealing with my patient. I used to call him my husband but that was long before he turned into a very bad acting toddler, with no empathy or awareness of his destructive power. Who requires constant, vigilant care, who is incontinent and has lost any idea of how to clean any part of himself. Who puts nothing in his mouth without my direct involvement...liquid, food, or medicine...who puts on or off no item of clothing without my help. Thus he has become my patient. Strange choice of words as I have NO patience with this patient. I think a stranger would take better care of him emotionally. I am bankrupt emotionally. I actually can't stand this any more and find myself literally pulling out my hair and screaming as loud as I can, no words, no message, just feral screaming with all my lung power. Of course it makes no difference except to make him sad in the moment...but he forgets it quickly. I don't. It is changing me. This journey is killing who I thought I was. I thought myself a kind person, a person who likes to help, a nurturer. I was so wrong. If a worthy goal in life is to learn ourselves, I guess I am becoming successful. But boy is it a shocker to see traits in yourself you would never allow in your conscious thought as part of you. And to find missing what you assumed would be there. Alzheimer's is killing my image of me. My daughter has witnessed a few lesser breakdowns of mine and observed that it was like Jekyll and Hyde. That my behavior was not normal for me. I beg to differ. The behavior she witnessed, the screaming fits are the new real me. We might have to hold a wake and a funeral service in the near future of the death of who I used to pretend I was. Few might come. However, even I wouldn't come to the funeral of the person I am becoming.

Fool's Gold

I am a clown. A certifiable circus freak. A bearded fat lady, wolf boy, fraud. A deceiver, a fool. I hand out wisdom and suggestions like nuggets of gold found in the Colorado streams of my mind. Two young neighbors came to my door, separately today. One was struggling with what she desperately wanted that she saw others getting, and is out of her reach. Another is struggling with newly discovered serious mental health issues. I took them into my home and warmly panhandled my advice. My sage homilies. Not two hours later a recent immigrant came to my door asking for such advice, as she had mined at this profitable stream before. Eureka!! Her pouch was filled with treasures of ideas as well. I prepared meals to take to church for distribution for the homeless. I called an ailing friend to make plans to visit, so she could enjoy looking forward to a little something. (Oh yes, this prospector is righteous as well!) And I am a complete and utter fraud. I know nothing about what to do for myself. Nothing. I find myself shrieking nonsensical things like, "what makes you think you can wear pajamas?!" And, "why are you looking for what isn't lost?" Sometimes I fear I might actually be losing my mind. My old cats continue to decline, reflecting the gradual departure I am living through. My son's girlfriend--whom I love--left him again, as he can't make the kind of commitment that is reassuring enough for her. Another body blow of loss. I can dress the part and wear the hat and talk a good game for others. But I can't deliver. Not for myself. Not for him. I know not how to alleviate this terrible pain and I can't stand the feelings of constant and complete loss.

Roller Coasters

I spent three days in hell. Thoroughly spent. Unable to cope in a healthy way with his total cognitive loss. And I mean the kind of loss that thinks wiping your butt after pooping is accomplished by polishing your knee. But somehow, with lots of reaching for good friends and a therapist, I once again reached a kind of stasis. Now, I have learned through experience that just when you relax your vigilance with this disease, bad stuff happens. Sure enough. After a fairly nice day of not feeling my own raging anger, and after the honeymoon glow of absence of anger, he erupts in huge paranoia , rage, and distrust of his own....over nothing that can be seen by a rational mind. This whipsaw effect of going from my own mind blowing rage stage, to a kind of acceptance and calm, only to be blindsided by his huge rage two days later is unsettling. This time I remained reasonably calm and we had another fairly pleasant day. As we sat on the couch, he remarked, "Oh, do you watch this show too?" I answered yes, and my first thought was that maybe he had already seen it during the day, while I was taping it. But something felt odd. I turned off the TV and asked him who I was. He pondered for a moment, then said he wasn't sure but he thought I was probably a teacher. The rest of the evening we spent with his remembering people we had known briefly and casually thirty some years ago, but his memory of our relationship never returned. He told me he thought I was a wonderful person but that was all he knew. I would like more balance in my life and I can sure do without the ups and downs of the vagaries and vulgarity of Alzheimer's. But the irony and unfairness of memory is awful. He remembers a man we met maybe five times, thirty seven years ago but can't place the woman he has lived with for forty five years. Sigh.....

Of the Feline Persuasion

I have two old cats, both of whom are nearing their end and unwell. One has a thyroid condition; the other kidney failure. Both suffer from a seizure disorder though my kidney cat is much worse (and a few years older). My oldest cat also is deaf and has dementia. She forgets where her litter is and forgets that she has been fed. She still gets pleasure from sleeping in the sunshine all day and sleeping on my head all night. She does not appear to be suffering. Dealing with the nursing and loving duties for these old friends is increasingly hard work involving administering meds and subcutaneous fluids, but nothing I can't handle. More importantly I know what is needed, what to look for when my help just isn't enough...when it's time to give them the ultimate gift of love that we are unable to give to our human companions. But in this medical facility that used to be my home, we are also mired in the miasma of Alzheimer's. Last night he asked me if I had a husband and where I lived. He thought I was a wonderful person but didn't know more about me than that. Guessed that I was maybe a teacher. (He often thinks we are in a school.) My son suggested that maybe he was asking because he was interested and wanted to date or even marry me!) The next morning he wanted to know who all the people were in the house during the night. (There was no one.) He still didn't know who I was. For all my rage, this kind of loss taps into a very deep well of sadness. This is real loss.

Reverie

My mom grew up in a house full of siblings, at least four of them big boys. She often would escape into her beloved books and would find a reclusive spot like the corner of the attic and stay out of everyone's way and commune with her own thoughts. We laugh about how we resist being like our parents, even deny similarities through our teen years. As we mature, we recognize and even sometimes appreciate those traits we find in ourselves that are uncannily like our parents'. It is so with me. Escape is what I yearn for. An attic is what I seek, with a trap door that opens only for me. I am overwhelmed with my anger at our circumstance and the degree of dumbness with which we are now dealing. I scream, but alas there is no attic, no book available. The mess, the pain, the problem is still standing right there, no matter what I say or do, how loud I yell or how compassionate I try and fail to be. There is no one else to fix it.

Nuts

Like an attention deficit little squirrel, my mind races at night. My body begs for sleep, but that critter disallows any such nonsense. Miles to go. Miles to go. Why do I act this way? Why does he act this way? Oh wait, I know why he acts this way. Why do I react to his acts this way? And on and on. A major problem for me is the total unpredictable nature of this disease. I just get adjusted--sort of--to some particularly outlandish behavior and another starts up. And I mean immediately upon any kind of accommodation on my part. Very smart and insightful people have assured me that my own behavior is well within normal range. That this is extremely tough and dealing with it 24/7 can break anyone. Add to that the yogic (and the therapy) learning to love oneself, even the parts you don't like, because ALL of you--good and bad--make up your total package. All your behaviors and experiences create the person you are, and you have a model for understanding. You would think. But models don't seem to help. I actually shouted this out loud the other day, "One of us needs to die soon! It should probably be me as you are at least sweet natured. I am not." And I am not. I am absolutely, nails on blackboard, screeching livid! I remain fiercely angry with him for being sick and helpless. I yearn for the grace to release the anger and just love and care for him the best I can.

The Sound of Wings

There is an adage that teaches us to be kind to others for we know not the burdens they carry. Oftentimes we know not the burdens WE carry ourselves. Random kindness and understanding, handed out before you even realize you need it, is very healing. We went back to the neurologist for his routine checkup and before I knew what was happening, she had whisked me into the social worker while she examined him. I found myself proclaiming such despair, sharing deep loss that continues to pound away at my psyche. It surprised me that I was still suffering so keenly, so sharply, as I have been at this for some time and thought I was making 'progress'. I suppose 'progress' isn't about the lessening of the suffering, but maybe about acceptance of one's lot in life. My husband used to grow flowers...lush, mad explosions of color and exotic shapes. The house smelled like compost for weeks and dirt covered his body from between his toes to inside his ears. He got into it. He would grin from ear to ear, his music--both great and trivial--blasting in his ear buds, sweat running down his back, his hands thrust joyfully into the dirt. Now he stares blankly into his deserted yard, the colors gone to black and white, the lush explosions a mere wisp of memory. Every now and then we still get a single blossom in a random location, obviously having forgotten that it had been forgotten. Its little perky face a tease, a postscript for the master gardner who had intended to tend it all along. He used to look into the yard and see possibilities and color matches. He would exclaim, "I'll never get it all done! There's too much to do!" Now I have to guess what he sees as he turns his eyes to the yard. Does he see the devastation in his mind reflected back at him in the abandoned yard? I look over the landscape of our life and reflect often upon the loss of color and shape and depth. It will be up to me to reshape my life's yard and bring color and hope and springtime back again.

Empty chairs and empty tables....

September 12, 2012 The long dark tunnel, echoes of light and forgotten days. Moments of exquisite pain, the empty togetherness of nobody home. It is much lonelier to be with someone who isn't there, than to be by yourself. I can hear my heart beats. I can watch my thoughts form and tumble out of my head and spill all over my face. I yearn for my loved ones. I am alone. September 25, 2012 What a simple learning. When I am with another adult, I feel so much better and am so much kinder to him. Is it because I yearn for adult, unimpaired company? Alone is isolating. I don't know. I do know that I was at my wit's end and my sister's visit saved my bacon. He was still crazy and lost, but somehow, in her company, I was concerned for him and helpful. Why oh why can't I do that on my own? Again, I don't know, but I can use this knowledge to help us both. September 28, 2012 Jigsaw puzzles. Life is all about finding the edges and putting patterns together to create understanding. October 7, 2012 If my grief moves through me like the tides, with reasons and rhythms of its own, then despair cycles through me with the rising and settling of the sun. Each and every day, as the day ages and shadows grow longer, my keening gets louder. It is only in my mind so far, but I fear I shall soon be shrieking out loud. There is such a resolute, singleminded aloneness in darkness. The only thing that has made life here, alone with him, bearable is the sunshine. Have you ever danced on the head of a pin? Watched a single droplet of water sizzle on a hot pan? October 11, 2012 Remember all that lamenting about the slowness of this loss? The changes that moved like glaciers, steadily, inexorably, creeping over eons down into the cesspool of dementia? That carved out of the landscape of personality, the characteristics that used to be there? Leaving great lakes of confusion and agitation? Suddenly that great ice floe of horror has been sliding fast, very fast, and it scares me to death. October 12, 2012 Me: I am so sorry I am not kinder to you. I am so sorry I get so frustrated and upset. Him: I think you do great. There has got to be a way to find our way home. I wish I could be a better person and get more done. I have to get home. I know that. October 27, 2012 Gethsemane: "I think I'll just kill myself," he said after not being able to express himself. "Oh?" I responded, "how are you going to do that?" "I dont know," he admitted. "But I feel like that would be best." Yesterday he forgot how to tie his shoes. That sounds like, "yesterday, I went to the store." Such a small thing. But such a huge thing. This morning I found him naked in his bed, his PJs in a puddle of pee on the floor with his diaper and a trail of urine leading into the bathroom. It doesn't require a Sherlock's help to write the back story. His Parkinsonian palsy is worse too. This man, who used to leave me scrambling like a puppy to keep up in our long walks, his 6 foot frame and longs legs making a mockery of my efforts to walk alongside of him, now shuffles aimlessly along, the distance behind me growing greater with each step.