Tuesday, September 16, 2014


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....


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.


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.


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.