Respite

I was beaten up. My kids asked me how I felt when I reached New York, the old guy safely stashed in an assisted living facility for Alzheimer's patients. I thought about the question for a few minutes as I was unused to considering my own condition, being pretty swallowed up in ascertaining his. "I feel beaten to a pulp. Pulverized. Done in. Cooked," was my reply. I hadn't realized the toll it takes to care unceasingly for another person since my babies were small. Of course with babies you get lots of rewards in smiles and gurgles and watching their growth. This is the mirror image of that process; the dark underbelly of slow destruction. With this, you get snarls and mood swings and taken for granted and also, somehow, forgotten! I remain the lady who fixes the lunch and finds the pj's. I was in pig heaven in New York. I was working pretty steadily there too, but was primarily responsible for myself and no one else. I did a lot for my kids and loved on my new grandson as much as possible. I got tired but it was very very different. The relief of not being responsible was overwhelming and I have learned, first hand, that I cannot do this alone. Every time anyone mentioned this fact (apparently clear to everyone else, but not to me), I was always reticent as he is not bedridden and has no needs yet that I am physically unable to meet. But I DO need respite and sweet relief from the nagging duties and worries and conflicts. I find his dark cloud of anxiety very heavy to bear for me as well as he. By the time I got home, I actually had been missing HIM, my partner, my husband. I was ready to come back and much more healthy about assuming my duties. I watched him walk down the hall toward me at the assisted living place. When he saw me, he stopped suddenly and shouted, "I don't believe it!" He toddled to me, grabbed me up in a big bear hug, and whispered in my ear, "This is the best day of my life!" Now THAT was a great greeting! When we had finished hugging and kissing, I took his hand and asked him to show me his room and said that we would pack him up and go home. He stopped again, turned toward me and said with a note of wonder in his voice, "Can we?!"

Darkness

May 6, 2012 My friend once told me that her divorce was "unclean"; that is, she couldn't grieve the loss as she would the death of a spouse. I am witnessing the death of my spouse which is taking a very very very long time. It's sort of like watching someone you love become consumed by rust, rather than the merciful speed of clean flames. There is nothing clean about this process, either physically or emotionally. You have to become a marathoner even though your every training has only been in the sprint department in order to survive. Another friend, whose husband is going through the same process, said this: "Every day is the same. Every day is different." Such insight. It is monotonous, boring, and isolating. It makes me escape the burgeoning joys around me..the springtime promises of fresh clean air, of new life springing forth from mother earth and new mothers of every species. Even in our own family I am witnessing the gestation and impending birth of new life, and yet..the darkness of the slow, steady loss is still compounding my thoughts and imprisoning me in my own mind. The newness that happens every other day or so, the changes that dispel actual monotony, are negative...the newness of continuing, relentless loss.

Stages and Changes

March 24, 2012 Something has happened within me. I hope to God it is that I have moved on in my stages of grief. Yes, I know it won't be a linear path and that I will probably dip down again. But somehow, beginning last week, I started feeling better. Certainly not pleased that my partner is suffering but aware that this is a long trip and I had better wrestle what happiness we can find, right. now. Stewart s neurologist ordered a "test" called a "sleep deprived EEG" for him yesterday. it involved staying up all night...both of us! If you had carefully contrived an adventure designed specifically for the two of us to fail, this would be it. When we had traveled a year ago, he became significantly paranoid with the jet lag. I did suffer...I was ok until about 3:00am but then started to falter badly. Stew, on the other hand, was incredible! He was alert and supportive of me trying to rest some. He watched TV and remarked upon some of the stories he was following. When we got to the hospital at 7:00am, he walked around the waiting room, whistling and looking at the plants and magazines. I, on the other hand, sat in a chair with my head lying on the backpack in my lap. We had reasonable conversation. March 28, 2012 Happy. I couldn't figure out what that feeling was. Things just feel easier. I am much kinder. (others keep telling me that I am plenty kind, but this isn't easy, that no one is perfect, that I am only human.) But I know how much I love this man and what he means to me. And I know the depths of kindness I have within me for him, some of which I had been withholding, probably through anger. So I have always known how much better I could be if I allowed myself to be. I helped care for both my parents when they were sick and dying. It wasn't a picnic for sure, but we banded together as a family and it felt like an honor to be included and involved. I even had a sort of mystical experience while bathing my mother after she had soiled herself. There I was, washing her bottom, and a spiritual blessing washed over me in those moments....it felt a great blessing for me to be able to help...especially this woman, my mom, who had card for me like this her whole life. It made me sad to witness the decline and loss but happy to be able to provide comfort with dignity and respect. It made me happy to do it, not bipolar. Obviously spouses are a whole balliwick of their own. We have no generational sense of order in their loss. These guys have relinquished the rule book and are, in fact, abandoning us. So with spouses, you have to put in your rage time before the natural compassion can bubble up to the service. For about a week now, I have been pleasant as his caregiver and he has been pathetically grateful. Hugs are spontaneous, sincere and frequent. Why oh why is this so difficult most of the time?!

Seductions

March 20, 2012 Hope is a deadly thing. As the season warms, the air softens, blooms dare nod to each other a bit, tentative in the warmth following the cool nights. The barest hint of a sweet scent wafts in the porch screen and into our senses on evening walks, causing us to stop abruptly to revel in the old friend, long absent in the icey winter just past. His seasonal affective disorder eases slightly, as does mine. Last week he had about three days of almost normal. Now, we are generous in the use of that word, "normal", but he was pleasant company. Once he told a small joke. A couple times he kidded with me. Small things, to be sure. But way more than we had been getting. My old friend, denial, was witness to these subtle changes and oh so quick to leap back into action. It is so hard to resist the pull, the seduction of small improvements. Instead of just enjoying the time, I leap into old habits of thought. Unfortunately this makes me mad all over again as the relentless nature of the disease brings us right back to the real present...his standing and awaiting direction, every moment, for every action. Hope is brutal that way. Just when I think I am resolved and resigned to what my life has become, small hope blooms and beckons like a springtime flower bud. When it is nipped and altered, I am whipsawed back to reality. My sister and I spent the summer one year, helping my father die. We kept preparing nutritious meals for him and then laughing and crying together over the foolishness of that effort and questioning each other about why we were not just offering whatever he liked and/or wanted, regardless of food value. Something about that experience seems parallel here. Hope is dangerous, but unstoppable.

Transitions

He lurches now upon rising. Not headlong, but listing side to side as if he is maneuvering slanted decks on a ship tossed on rough seas. The primal instinct to find the bathroom remains but what to do with ANY of the plumbing--his own or the ceramic fixtures--eludes him. I am not what I used to be. I am tentative and tired. I don't explode into joy and happiness; I peer around the corner from the other room and peek at it, study it, consider it. I can't find my peace place. Home is lonely and sorrowful. Away is difficult and tiring. Travel is weariness, not adventure. Where oh where has my adventure song gone:!

Oleo

I have been making short entries in my diary lately rather than sitting at the computer and logging actual journal entries. The following is a collection of those entries which are trying to be in chronological order. They are a rambunctious collection of ideas and feelings, so we will see how it goes. Jan 28, 2012 I think I have impulse control issues. I can blurt out the most outrageous things, sort of in the interest of levity. My son says it's characteristic of me to simplify the language of horror, in order to better deal with it, to reduce some of its power. For example I refer to my therapist who died as "dead Ellen". It sounds disrespectful and frankly, probably is. But that loss is so deep, I can't quite NOT try to introduce levity into the formula of horror. Feb 2, 2012 He only does the opposite of what I say. He insists on going to the mailbox. I don't ask him to go. I say, "please do NOT put up the flag." It goes up. I say, "that flag should not be up." He says, "but you told me to put it up." I can't exactly trust to say the opposite of what I mean! Feb 8, 2012 I start my day with singing with a grandson on the way! I end my day with laughter with my granddaughters at play! I sizzle in the middle and muddle in the twix, And reach and coax and placate. Yet nothing brings him back. Feb 25, 2012 "The deeper the sorrow, the less tongue hath it," my friend, Blu, quoted the Talmud for me once. So so so true. I have had to dredge up old posts and notes to put on my blog for a while now. But this one is timely, albeit short. I have tried womanfully to conjure up some anger, some respite from this heart wrenching sorrow. It is so blessed hard to watch someone you love creep towards their gradual final loss....the daily insults, the daily obscenities. Tonight, he totally forgot how to use the toilet, and horror of horrors, he knew it. As he lay grieving, I could find no shred of anger to armor myself behind. As I put him to bed, I kissed him and told him it was but a big dumb bowl and of no importance. We would be just fine. Feb 27, 2012 Someone once said, "Truth is a battle of perceptions. People can only see what they are able to accept." I am learning some important stuff and am feeling better. I assume one is causal to the others. This lesson has permeated vast lockers of the dressing room of my mind. I am in there checking for my towel, when this new thought resonates. I am not sick! I am not dead! My life cannot wait for the future to begin. My life is NOW! Also, my old guy can't sit on the couch and be done. He may have to do that some time. He may have to do that soon. There are certainly things he can no longer do. But there are most certainly things he CAN do. And these various things are things we both MUST do, both singly and together. There might also be anguish and fear when we attempt to do some things differently, like separate for periods of time, as much as two to five weeks at a stretch. I think we were inadvertently becoming joined at the hip and classically co-dependent. Thinking of having real time just with myself gives me such a breath of fresh air and hope for renewal to care for him the way I actually want to. And finding outlets and places for him to find the stimulation and socialization he needs, is a huge relief, for, as the good Lord knows, I am not so good at that gig. Mar 19, 2012 Our life is full of beginnings. We are hard up for any endings. He starts sentences but cannot end a single one. He stalls on words and as he wrestles with his lost language, the original thought in his brain flees, hiding masterfully behind the encroaching tangles and weedy plaques that are Alzheimer's. I pick up a new behavior as I feel it might help, and then fail to follow through. The exhaustion that accompanies the care of a six foot toddler effectively undermines the best of intentions. He enjoys church; he remembers and recites the Lord's Prayer! But the ordeal of dressing and eating and pill taking sap energy for both of us, and we seldom can make the arbitrary timeline for morning church services.

Tsunamis

Tides are a natural rhythym of earth's water flow...the pull on our great bodies of water as we spin around the sun and the moon circles us in ever dizzying dance moves. The great waters move in and out with thoughts of their own about where they go and when and why. My grief moves through me as a natural huge body of pain, ebbing and growing with a mind of its own about when it comes and when it slows and why. I feel the weight of life's pain as I live longer and experience more. It isn't exactly depression. I have felt depression's pull, which is darker and deeper and pulls in a much sharper downward expression. This is brightly colored with reds and purples and fushias of torture. One after another has pounded on the shores of my psyche. I have been losing good friends lately, one after another, three of them this year. But in the beginning it was my mom, dying in proper order, without fuss or suffering, classy, pointing the way. I put off the shrieking voices in my head about her loss as I felt obliged to honor her memory, her stoic, and God fearing soul. On the shelf that pain went, to be honored and examined, but not to be screamed about. Then my husband, my partner, my other half. Not physically gone, leaving his body behind and the sound of his voice, just as a special kind of torture. But gone, nonetheless, his vacant staring eyes in the face of grief, my body aching for his to hold me as he always would, as he always did, but no, not any more. At the most, patting my hand lightly, aimlessly, guessing that he used to say or do something, but not able to conjure up any reasons or ways. My small dog who snatched up my heart completely, allowing me to focus on something warm and sweet. He yapped and jumped and licked my face on Sunday afternoon and was dead by Monday morning. My new friend, my shrink, who really understood me, who stood witness to the depths of my despair and my guilt, and still found me worthy. Gone in her youth, her children motherless, her patients lost. My ethereal grand dog, the greyhound, pressing her body into mine while I cried, her face in my chest. Playing with her old playmates on Sunday and dead by Tuesday morning. Wave after wave, despair and keening in the air, colors vivid and loud. This is not the music of depression. This is grief, overwhelming and unending, crashing on the shores of my heart, carving pockets and pools of despair in my soul. I have had great blessings in my life and continue to find luck in family and friends. I guess with great fortune in love, comes great pain in loss.