Deathwatch

He swam valiantly, just his head and small antlers visible above the whitecaps.  Something had spooked him so badly that he had leapt off the end of the pier into the roiling, cold October waters of Lake Michigan and swam straight out as if he could make it to Wisconsin.  He eventually turned and seemed to be headed for land, but whether the currents, or wind, or cold would let him ever find safe harbor again remains an unknown to me, as I couldn't bear to watch.  Any more than I can barely watch my husband struggle as he loses sight of his landfall.  There is a profound, poignant pain in being with him now.  His body is so thin, bony ridges clear where muscle used to soften and hide.  He struggles when I press into him, to say something, anything.  Mostly he just sits, learning to the side, yearning to lie down, to let go.  His once soft brown eyes glassy, unfocused, looking for or at something I cannot see.  His cheek bones so defined and sharp, his knees locked in a Parkinsonian embrace with each other.
I carry a knot of grief in my chest all the time now.  Friends and family try, with the same valor and constancy as the young buck, to keep me headed to shore, but I am uncharacteristically quiet and removed from the normal, regular patterns of life.  Strangely, I am the opposite when I am with him.  Like the clown, I smile all the time.  I keep up a friendly, funny banter for him and for all the other residents and their families with whom I am locked in this dance of death.

Conversations

September 27

He grabbed my hand, hard, and brought it to his chest.  "Wait!  I need to talk to you."  He had not been talking out loud for a week, just mumbling softly on a rare occasion.  I knelt and put my face in front of his gaze, "Yes, my love, I am here," I replied.  "I want to say goodbye to you and to tell you that I love you very much."  Perhaps he recognized that I might be leaving and he meant it literally.  But I took it cosmically and had to take a knee.

October 9

I held him to me and babbled my loneliness.  I told him all about the weekend family wedding I had attended.  I talked about the people I had seen and asked him about who he remembered and who he didn't.  I confessed passionately that I was so grateful that I was no longer mad at him and explained that he had never done anything to make me mad, that it was my own journey.  It was so nice to be with him.  Another gift of assisted living.  He straightened in his chair and looked right at my face.
"Wait!  What is your name?" he asked.  I replied that I was Ann...his Ann.  He smiled broadly and answered, "Well, no wonder!"  It made me so happy to see the dark veil drop, even for a minute, and recognition flood through.  I told him that although his mind forgot me from time to time, I was always there with him and that his heart never forgot me.  He liked that.

Control

I knew I was going to die.  Imminently.  Not the raging, heart stopping terror or fear of dying.  This was a cold certainty.  It felt as if I had come through the raging fear part and settled into a white cold clarity of peace and acceptance.  My husband had taken our small son on a very high, very wild ride at Disney...the kind whose exit is at least 1/2 mile from the entrance, through easily a half million people.  I was carrying an infant and holding onto a toddler, our two small daughters.  As this was before the age of cell phones, I knew if the boys went on that ride, I would never find them again in the melee and crowds.  I asked the  proprietor of the ride if my girls were too small, if it would be dangerous for us to go along.  He assured me it would be fine.  He was wrong.  I knew immediately on the first rise and twist that we would die.  My glasses flew off my face and I clutched my girls to my chest, determined that I should try and save them if at all possible.  We lived.  But in my frightened mind, I had experienced death.
Fear and I have played games with each other my entire life.  Just now, as I maneuver my husband's slow death,  I am finding less to fear.  I am much more outspoken and take on way less roles of support to others than usual.  I refuse to walk on the Alzheimer's walks; I am angry when that association asks for money from me.  I don't plan dinners for visitors or go out of my way to make anyone else comfortable...except him.  It is an unusual position for me, foreign, alien.
Except for situations I see for myself that I can do some good.  Walking through the county fair, I came upon a cow that had twisted herself up in her rope so tightly that she couldn't eat, drink, lie down.  She couldn't even move her head.  Normally I would have worried about the cow and kept going, probably reassuring myself that her owner was nearby.  I have no experience with cows, and find them way larger in real life than you would think from a passing car glimpse of a rural scene.  It never entered my mind to worry.  Here was something I could actually fix.
I pushed a huge cow over with my body....the neighbor, whose greatest interest was chewing my shorts.  I worked hard on the knots but eventually needed to crawl under that cow to untie her from the source.  
I think about that cow a lot.  I smile at my own audacity.  It feels so good to have taken action.  Action that made a difference somehow.

What I did on my summer vacation

This summer I went to Lake Michigan with my family.  There I watched my cat and my husband die. This grief feels fresh.  And heavy.  I am near tears now, again, all the time.  It is now clear to me why I stayed so angry for so long.  It was to avoid this feeling.
I am a voracious reader.  Eclectic taste, driven to absorb others' insights and ideas, I enjoy a good sexy beach book as well as meaningful abstracts that need concentration and creative energy.  All I require is that they be well written.  I don't remember authors  or titles, or even most of the plots, but I absorb directly into my psyche the characters and the author's beliefs.
I haven't been able to read in a very long time now.  Instead I am addicted to gaming, online mostly.  I play video games and word games and puzzles obsessively.  It is mentally demanding enough to require that I not worry or anguish about other things, but doesn't require the kind of attention that a good read does.  Books take me to another world but require some work and an altered consciousness.  Games let me escape the daily grind and pain, without requiring any great expenditures of mental energy.
The beach has expanded in meaning this summer.  Ludington has become about learning how to let go, and let be.

black cat

I scared my cat to death.  My last beloved creature, the last in a very long list of cats, dogs, fish, rodents of various descriptions, birds.  Most brought home by my children and left in the bosom of grandma.  Maggie was not young and enjoyed the same ailments and treatments the rest of us old girls do.  But she was relatively healthy.  Until I did the responsible thing and took her to the vet.  There she snarled and hissed appropriately at their intrusions...until she didn't.  She just stopped.  My best medical opinion is that she stroked out, triggered by the stress of the visit.  Now I know there had to be underlying issues as she endured no more, and possibly less, procedures in this visit than in former ones.  But I think it scared her to death.  I wrapped her up and brought her home, but she never recovered...she stopped eating and drinking.  I put her in the sun on her beloved porch, the hummingbirds hovering just out of her reach, so she could dream of the chase, long ago in her youth. She walked around some, changing from sun to shade, but remained steadfast in her lack of desire for any liquid or nutrition.  I understand in my head, that I have done everything I can think of for her.  But all this dying sucks the joy out of life for me.
It is relentless, the loss.  One of my loves after another.  It is supposed to be a normal part of life, the end game I guess, and we are supposed to grieve.  But wow!  We don't discuss how devastating the grief part is.  Like my ailing husband, I wrapped her up and took her to our lake.  There she (and he!) enjoyed the sun and fresh air for a few weeks.  Then he went back into the hospital and she took her last breaths on her favorite easy chair.  Maggie was one of the sweetest creatures to stay awhile with us.  She shall be desperately missed and forever loved.

Metronome

August 26, 2014

White hot searing empty.  The kids have gone.. The house is quiet.  And clean.  And meaningless.  He continues to not look at me.  He continues to act as though I am not there.  I am so sad and empty as the white hot searing empty of my house.  I sit with him at dinner, in the assisted living place we have now succumbed.  I make pleasant conversation with  the sweetest others--caregivers, families, inmates.  I cannot wait to leave.  My house is so empty.  The revolving door has slowed for a minute, so it should not be too bad.  The Vietnam wall is visiting in the park nearby.  I visited and could not stop crying.  All those young lives...gone..snuffed out...taken violently...row after row,  list after list...and on and on....the losses are turning my eyes into wet marshes of deep sorrow for what might have been, for what should have been.  For all of us.
and yet...
I went back to see him.  As I rubbed his chest gently, I leaned toward his face and said, "I love you".  He answered some social response like, thank you.  I kept gently stroking his chest and added, "and you have always loved me."  This time he kept those soft shoe button brown eyes on mine as he answered, clear as a bell, "That is the truth, and I always will."  He reached up and grabbed my chin, much as he reaches for real and imaginary things.  I exclaimed, "that's my chin!"  He quickly responded, "oh, sorry".  I leaned back into his face and asked, "do you know this face?"  His response was unintelligible.  I added, "do you like this face?"  He answered, again clear as a bell, "I LOVE this face!"
Treasures and tidbits....

Equity

August 23, 2014

I am mad again.  Enraged actually.  Thankfully not at him any longer, but for him.  I am mad at random strangers who walk about in silly shorts, their bellies hanging over their former belt line.  They walk about casually, wherever they want, whenever they want.  No thought of trying to remember who they are, just casually strutting about, enjoying the sunshine and warmth of beautiful summer days.  Their spouses trot along in their own silly shorts, unaware of how precious those moments are.  My old guy has long since lost the beer gut, and in fact weighs less than he did as a beanpole 9th grader.  He struggles to not lean too heavily on his pressure sores and awaits the next intrusive activity, strangers who will wash him, clean his butt, feed him.  He tries to sleep through the waiting, the long leaving, and mostly accomplishes that little bit anyway.  I choke on the sadness when I am with him.  He holds my hand in a Parkinsonian death grip and I struggle with fearing there is a shred of awareness in him of his condition.  The home is bright and clean.  It smells good and the women who care for him are wonderful and personable.  The other patients are a Saturday Night act waiting to be written.  Ken keeps a loud and steady drum beat and horn part going on the table and with his mouth.  Lorraine cries and keens steadily as she wheels her chair around the place, clutching her dolly to her bosom.  June discusses literature with you and then asks for help finding her own room.  Byron keeps a loving banter going, consumed with getting enough milk at mealtimes and inviting all females back to his room and to his bed.  All characters in this tableau and all quite interesting and kind.  The Salvation Army comes every week to preach and to conduct sing-a-longs.  The staff organizes activities every day, like baking and constructing bird houses, bingo, exercises.  There is a stress on sweet treats--sundaes, shakes, ice cream cones, cookies, cakes--and on being together socially for all these occasions.  He is wheeled into and amidst all these affairs, sitting stooped over, drooling incessantly as his swallow reflexes leave him as well.  It is such a strange feeling to enjoy life and family and friends and activities with this subterranean river of grief roiling constantly in my gut, just below the surface.  I want peace for him and for me.  I am not proud of my resentment as I observe other pairs in the blissful ignorance of their own health.  None of this is fair.

Malpractice

July 27, 2014
 I can't stand to be with him and I can't stand to be without him. I start crying when I'm with him and have to leave. I run back to the sunshine and the pool, to sounds of squealing children, to life. there I seek out and yet somehow resent the couples, and the women whose partners are sitting next to them. I can't stand to sit next to him because he is gone. I am turning down social invitations. I want to be alone except for my kids and a few family and friends. I am having heart surgery right now. I have very little issue with the need or reasons, but my rage continues about the particular meanness of it all. The real issue here is the choice of tools. My surgeon is using a spoon. If he were to lay open my chest, clutch my heart tight and fast, and yank it out, I would gasp with the terrible suddenness and assault, but I might be able to heal. With this procedure, he is working through skin, fat, and muscle, slowly and inexorably with his spoon. The dying continues all around me. Ready or not, it comes..all around me. My beloved..and last..cat, my sister in law, who loved me unconditionally and shored me up constantly with her support and gratitude for my loving her brother, my friend's brother, all dropping like flies around me while my partner ebbs away at his own snail pace. This loss, this operation is perhaps the most painful loss of them all, but it is not honored with quick, clean, surgical precision...it is moving like the glaciers, slowly grinding all the gravel of hopes and dreams, all the nuggets of fun and mutual adventure, ahead of it, pounding it all into dust. The spoon, regularly, slowly scooping the joy and pleasure of life out with the remaining life skills. He has forgotten how to walk. He is terrified when we lift him to change dressings or pants, or to move him from his easy chair to his wheelchair. His legs wobble with unfamiliar weakness, his knees bent, all parts forgetting their normal roles, routines of living, and settling into their still, frozen caricatures of death. I still feel a sense of failure and betrayal over my inability to care for him at home. The fact that I cannot care for him at home in his present condition does not allay my persistent belief that I could have done it better and that I owed him that effort. I know that he will die sooner because he is not with me at home. My new learning and hope is that perhaps that is not such a bad thing. Perhaps dying sooner when your heart is being scooped out of you with a spoon is, in truth, a mercy and a blessing.

Goodbye Mr. Chips

July 18, 2014
 He's gone. A gaunt, bony, generally genial facsimile of him roams the rooms and hallways of a long term care facility, picking up treasures and debris, both real and imaginary. Those warm brown eyes unfocused, darting about until the stimulation exhausts them and they close. It is so painful now to be with him. I can't just sit with him as he keeps popping up and wandering off.  Discussion and conversation grind to a halt as his eyes close against the effort of thinking. I rub his back and hold him when he lets me. Last night he said quite clearly that I wasn't quite ever doing what he wanted. I know not what he actually was trying to say, but the implication that he wasn't happy and that I had something to do with it, remains painful. I know better in my mind, but my heart is still sensitive to the insult. I struggle to visit, to remain present, as every cell in my body screams to leave those rooms and run to the sunshine, to avoid the excruciating decline and to choose life...vibrant, moist, messy, delicious life. The letting go. The moving on. The long goodbye requires you do most of the hard work, the heavy lifting of mourning before the actual end of life. It is the strangest mixture of regret and sorrow and longing and remorse and relief to feel the weight of caregiving begin to lift, ever so slightly, from your heart before your loved one dies. I leave him now for long stretches of rest, where I feel all those feelings but also adventure and the tingle of living life of my own. I can't wait to go and yet I feel so full of those feelings, especially sorrow and guilt. I leave him slowly, gently, even as we are together. I feel the small, seismic shift of my attention, my yearning, my interest as my heart begins to withdraw. I feel him slipping down that hole I once vowed so valiantly, so naively to disallow. I feel me looking elsewhere, looking outward, looking away from him. It is most certainly a healthy and appropriate change in me as I would slip away with him down that hole if I did not separate. But the separation, though freeing, is painful. This letting go is like pulling the bandaid off slowly, recognizing that it needs to come off but without the clean, surgical precision of jerking it off fast. This death is gradual, slow, and demands its own rules. Where is the raging against the night, in him and in me?!!!

The Sound of Wings

July 9, 2014
 "They shoot horses, don't they?" The trick, I would suppose, is not to break their spirit. In any animal training, as in child rearing, the purpose is to provide structure and safe limits for the development of character. A wild creature, as a young child, can revert to nature's base behavior without a close bond to a benevolent strong spirit. I feel my own spirit weakening under the relentless assault of loss. When I was nursing my dad in his final days, my mom, my sister and I were trying to hold him up and move him to a transfer toilet. As we moved toward the chair, which was right next to the bed, we all realized--at the same moment--that we had bitten off more than we could chew and that we were going down. It was the most awful feeling. Not only was this dear man, riddled with bone cancer, in extreme pain already, but also we were going to drop him in a heap with us on the floor and break what bones he had left and increase his pain. We looked longingly into each others' eyes, hoping against hope there would be an answer there other than the futility we each felt. Just as we lost our grip, the weight was lifted off our arms and dad was gently and seamlessly laid upon his bed. The door to the house had been locked--we thought-- and none of us had heard anything, but there she was. The hospice nurse. Exactly when we needed her. Exactly where we needed her. I had been looking for a while for his eligibility for hospice care as I remember it fondly with my dad's care. The word alone elicited images of angels and mercy. So when the doctor's resonse was positive...that he was indeed eligible for these services, I thought I would be grateful...and I am...but "hospice". A scary, powerful word. It brought me to my knees. The healthy mind plays serious tricks on us. I suddenly, actually, realized that he was dying. Yes it was over a long course of time, but dying he was. For all my work on anger issues and acceptance, I hadn't ingested that hard truth.

University

June 28, 2014
 I have often said of myself that I am a sprinter, not a marathoner. I cannot tolerate uncertainty well or unfinished business. I tend to rush to conclusions to avoid the pain of long transitions. I get through tough appointments by imagining what a short duration they will be. Alzheimer's allows no such niceties. It has its own nasty, twisted rhythms and demands, without mercy, that you live by its own bizarre timeline. I am being schooled in the fine art of agonizing loss and betrayal, both by my life partner and myself. Everything is stripped away in your own soul and psyche. There is no place to hide. The principal of this school keeps a low drumming knell of the time it itself only knows , and the requirement of your attendance through it all. This taskmaster forces your head into the grindstone, without letting up, without allowing a breath. I have exhausted every aspect of denial and escape known to me. Nothing works. Currently he is housed, once again, in a medical facility for rehab following a recurrent infection. This time he also has an aspirational pneumonia to accompany his UTI. This, says the somber sounding physician of the moment, is a progression of the disease. This, he intones, indicates he is in the final stage of dementia. I don't care. I no longer listen, or run to google, or pick up the ever present books or pamphlets. I no longer go to meetings or seek elder care attorney advice. I do not follow the research or ask questions with scientific overtones. I no longer care. I don't follow the rules either. They put him on pureed food and thickened liquids. I sneak in real food, cut up fine in lots of gravy, butter, sauce and real coke and real strawberry malts. When they leave the room, I feed him. They tell me, as we walk the halls together, "I am sorry. You have to have one of us with you when you walk." I reply they should not be sorry. They should just join us. They often say they can't because they are busy. We keep on walking. They said he was eligible for hospice, so I put him in the car and took him to our lake. He didn't notice or care, but I did. I usually feel as if I am wearing the dunce cap, but I no longer care. They roll their eyes at my non compliance. I smile and keep on going. I may not graduate with honors, but I have learned to dance in the rain.

Garden of Life

The reason we are together for 50 years is that living with him has made me a better person than I am. He sees me as better than I actually am and he lives it...no matter what I say or do or how nasty I sound, he believes who I really am, not how I behave or talk at times. He has always believed in the good person he believes me to be, the good person he always saw, not the person I have always feared I was.  
I don't think I was originally "in love" with this man. Certainly not the way the media has taught us that love is. But I chose him. My biological clock recognized him and I reluctantly followed its yearnings. He was familiar and safe. He was pretty and comfortable. I knew him from another life somehow. I saw him. I leaned into the sunshine of his devotion and have lived in the warmth of that light for my entire life. I have suffered as his gaze grows blank and the light dims, blinks, and goes out. However, even now that I am gripped in shadow, I can still catch an occasional glimmer of that light peeking through the pall of this despicable disease. For respite I struggle in his garden. My fingers grow grey with grime, even inside the protective gloves. They ache as I pull relentlessly against the weeds, the infestations of garden decay. My back is screaming; my knees revolting against the demands placed on them. But without hesitation I continue to dig away at the intruders. It is a release to pit myself against an enemy I can see and I can respect. These weeds have long, strong roots. They thrive in highly unlikely places, small crannies, the sides of the brick path, in minuscule cracks. These weeds are survivors and are to be respected. Not so with the weedy ravages in his mind. This intruder is a savage whose aim is not to thrive but to destroy. I have no respect for its green tentacles that I watch choking the life from his brain. He can barely walk now. He rises only if I pull him up from a sitting position, his legs shaking, his body bent. He eats his tissue, his bib, his empty hands. Those hands remain in tight claw like configurations, grasping imaginary bits of a former life, clinging to what used to be. I pry open his fingers to let him hold a spoon, his tissue. Whatever had been in his hand falls in a trail behind him, unaware of their respective duties, forgotten in the miasma of his mind. I am so sad for him.. I hold him against me as often as I can, soothing as I did my children when they were small. Yet he shadows his caregiver now, not me. I have a funny mixture of responses to that phenomenon. It feels strange to see yet strangely comforting that someone else can make him feel even slightly peaceful and safe.

Specters

The ache is deep. The loss profound. Crying now amounts to bouts of low growls, a kind of gasping, like my guts might be falling out. Way beyond crying loudly, yet quieter. In fact it's more a quiet deep gasping for air, for faith, for strength. He has been hospitalized for a UTI and a subsequent stay at a rehab nursing home..."to recover his strength" before returning home. While he was in the hospital, I visited group homes as I struggled with the fact that he was becoming very difficult to care for at home. I felt the predictable mix of horror and relief as I considered these kinds of options but was not prepared for the actual horror I felt when I visited the homes. I came away determined to try longer to care for him myself. I just couldn't leave him in one of those places. My new resolve was severely tested in the rehab place where the predominant "therapy" for "returning him to strength" meant using strong psychotic and sedative drugs and injections and strapping him in a wheelchair. He left the center weaker than when he entered and barely awake. It took a day but he not only returned to full pre infection strength but also entered an unbelievable renaissance period of almost coherent language and socially appropriate interactions. We thoroughly enjoyed the respite and his company. I tried desperately not to jump on the roller coaster ride of hope, and sure enough, three days later the shadow of my husband replaced this new version. Now as the house quiets and the last of the caregivers leave, I am alone with him. This should be a relief to reclaim our own space, to be alone with each other. It is terrifying. So far he can't get out of his hospital bed but if he does, I have no idea with whom I will be dealing. My own sweet absent minded professor is long gone. This creature, this specter, with snarling fangs and drooling lips, comes at me with fists curled, spitting venomous gibberish into the air. I am afraid of the dark.

Transitions

My chest aches. My heart hurts. I wonder sometimes if my age and lack of diligence about my health is catching up to me. I wonder if I am feeling the beginnings of my end. Hard to figure out because my heart is actually broken. The losses keep rolling in, like the tides, with no respect for the beaches' capacity to tolerate or accommodate them. Inexorably, relentlessly, wave after wave of grief. Eroding the sands of the protective reef around my heart. I was tolerating, if not accepting, the unspeakable horror show of my husband's slow demise, but now my beautiful son-in-law seems to be leaving me as well. My heat aches also of course for my my own baby, his wife, but I feel the pain of his withdrawal personally. Another of the many fine men in my life who always always always leave me. At least that's the life lesson I am drawing from all this. Festive pity party up in here? Absolutely. And yet.....as the season softens into spring and the snow melts away to a cold distant memory, my heart is thawing towards my husband. I find myself not so angry with him any more, though, like the last small mound of dirty snow next to our driveway, I still get irritated and impatient with the ravages of his disease. That one small dirty mound of cold is still present, but no longer rules my heart. I feel the inescapable pull of spring's promise and the renewed sense of life force that the budding season allows. Now I feel more sad for him, for his loss. I have been raging for years over the loss this represents for me, and now as I lean back toward him again, my pain is for him, not me.

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!"