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.