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.

The Key of G

I love music. I forget to play it as I should. Especially now. You know, soothe the savage beast and all. And I don't mean he is the beast, in case you wondered.
Last night the house sparkled and a Bach's collection of works for the organ rumbled throughout. Lights were dimmed and flowers were fresh. As I dressed my real life dolly, my six foot Raggedy Andy, he kept asking what time they were coming and exactly what their names were. He also was specific about what he wanted to wear; I hope I found it.
I tried desperately to keep up with the steady stream of needs, while getting finger foods ready for the oven and jumping in the shower myself. He sat and asked, while I did last minute preparations, so I gave him jobs. He tried to open a bag of nuts, a bag of mixed chocolates, a box of flatbread crackers. He couldn't manage any of those. His strength is waning, and they are making packaging a lot tougher these days to get into. But I suspect there was more to it than that.
The women in my book club are retired teachers from Taft, the school where he retired from as its principal. As our friends came in, he sparkled like the house. He gathered each in his arms and kissed everyone. He sat in the circle of women as we discussed the latest book we'd read, never thinking of leaving the room, as he wasn't part of the book club. No one in the circle, including me, would ever have thought of asking him to either.
He was charming and offered a few memories from his childhood as they were relevant in the discussion. His language, of course, was in his own "Japanese", but not one of the people in that circle of women acted as though he hadn't made perfect sense.
When it was time for everyone to leave, he got up and got his own coat on, found a flashlight in the place we keep our emergency flashlights, (an amazing feat for any of us, by the way, to actually find anything in that space) and asked to help each of them to their car.
Several of these wonderful women whispered in my ear that they were amazed and hadn't known what to expect, but it wasn't this charming behavior. I slipped a little further down that rabbit hole I have been discussing. I felt as though I had been lying to everyone or at least exaggerating. We had a similar experience when visiting our neighbors the week before. We shared dinner with them and a group of their friends, and then shared a bible study session. These sweet people included him lovingly as well, and he opened and blossomed under the warmth of their attention.
It is very important to realize that he does lighten and brighten in the face of loving, social stimulation. This is a very sociable man and he has been as isolated as I have been for much too long.
I think I will put the Bach back on.

Jekyll & Hyde

I love the sun. It's peeking out from March's fast moving cloud cover, hinting at something better coming. The air is still brisk...cold enough to turn your exposed skin to toe-cicles, or finger-cicles, whichever you have been foolish enough to leave uncovered. The sun warms the inside parts of me which have been yearning for its attention all winter. I feel easier and yet in some ways more tense. The changing weather affects me as does my own journey experience. I am much easier with him but he is much worse. I suspect those two things are related. As his behavior gets more bizarre, I react in a more maternal way, less like a partner who has been stood up.
Last night we went to a small party to celebrate my brother's birthday with him. There was a nice crowd and good food and conversation. Stew brightened visibly with the social stimulation and I felt free. I drank a little too much, uncharacteristic of me...but it felt good! I thoroughly enjoyed the discussions, the social exposure, the fun. I also enjoyed the feeling that he was happy and watched over without my direct involvement. Freedom.
When we got home, he went immediately into his latest behavior, which mimics a seizure, or an over stressed nervous system. It might be a result of the latest drug we are trying; it might be a result of over stimulation; it might be a natural part of the progression of this disease. But he shakes as if he's having a seizure and becomes very agitated. He searches manically for something that is not missing, that he can't describe or explain. I have learned to help him dress for bed and to get him there quickly, as his ability to climb stairs and even to walk is impaired severely in this condition.
I feel whiplashed by the contrasts in my own emotional state. I have often described these feelings as being "bi-polar". I am not, of course, actually bi-polar, but the severe mood swings so easily affected by his condition, our environment, the weather, all seem to mimic what I have heard of this condition.
I am getting more tense over the degree and speed of change I see in his condition. The decline in his ability to figure out how to dress and undress and use the toilet are harbingers of impending negative change in the stage of the disease. But I am heartened by the softening of my attitude toward him that seems to accompany these changes.
I have managed to be very angry at my partner in life because his behavior indicated a kind of leaving me. It is finally becoming very hard to muster up any anger with someone who is this lost.

Ninjas

You know that warrior stuff I spoke of before? That force, that fight in me? I suppose some of that is true, but I am disappointed in myself. My incapacitated husband loves me better in his own limited way than I do him. Oh, I feed him and monitor pills and give him showers and dress him and field myriads of questions all day long....also field myriads of lost objects all day long, some lost in the house, but lately, lost only in his mind. I even muster some good grace about it all, but mostly it's a brusque, "really?" type response to his crazy responses. (I use the word crazy to describe his pouring coffee on his cereal in the bowl instead of milk, for example.)
But as the day grows and my fatigue sets in, my patience thins to nothing. Now I know that this man, the one who thought CPR involved sucking and not blowing, the one who faints at the sight of blood, who couldn't change a diaper, would be terrible in my role. I would probably die in his care if it were reversed. But he would love me, and he would do everything he could think of to help me.
I, on the other hand, would be voted most likely to produce a good looking patient. He will be clean, showered, shaved, teeth brushed, mouth guard in. He will be fed very healthful foods high in the current rage regarding Altzheimers' cures (right now it's coconut oil.)
I fascinates me that I am so much better at this role than he would ever have been, and yet, I know I would be proud of him and I am not of me. He would have done a lousy job, and it would have been a better job than my superb efforts.
Because he wouldn't resent it. He would just love me.
My shrink said an important thing to me tonight. She said I couldn't wait to live my life until after he was gone. I needed to live right now. After I got over the despair of actually talking of such circmumstance, I began to think.
Maybe I should put together a model of care that would meet both our needs right now. Maybe we should start with a model not unlike the coop preschools. Everyone participates in the care and pays according to what they can't provide in effort. That way caregivers would not be isolated and patients wouldn't be either! We could probably use space for free...Altzheimers association spaces, churches....maybe even some oversight might be provided by Altzheimers personnel. I can see it growing into a halfway house type thing so that caregivers can take turns getting away.
I see the image and dream the dream.
I remain too exhausted to begin.