The Real Deal

Loss and fear. I have written pretty words and intriguing plays about it here in these pages. I have brought out my muse and showed her off. I have played at understanding loss. I have been acting out a play of my own, with fear and anger as the leading actors. I had no idea. The police have brought him home twice now. The first time did not bring fear as he was just trying to take a walk and talk to people in the middle of an afternoon. Of course no one could understand a word he said, so in their kindness and concern for him, they called the police. It did generate my next stage learning, however, that this event marked the very last time he could be left alone--at all--even for a few minutes. It also was a strong indicator that I needed to act on a care scenario that involved socialization for him. But last week the state police had to look for him---at 3:00am--with searchlights along the shores of Lake Michigan--in 30 degree weather. Now THAT is abject fear. He had gone to bed and when I joined him an hour later, he was gone. My mind simply could not grasp that he had walked out the door with me sitting in the room. I looked in every room and closet at least three times and under beds before I grabbed my coat fast and headed in the direction I could only guess he might go. My sister ran toward the lake and I jumped on my bike, and in the dark, went up the road. Around several bends in that road, I came upon a few people standing together. We live on the tip of a sparsely populated peninsula, so what are the odds that one of those people standing there, at that late hour, would be a state policeman? They all acknowledged they had seen someone, so all of us continued the search. The trooper asked me to ride with him in his car so I could handle the search light on the passenger side of his car while he used the one on his side. We went up driveways to the high parts of the dune so we could see most of the way to the water--nothing. I requested that we go further along the road, as my instinct about him was that he would keep going up that road. As we crawled along, using those big searchlights, the trooper, with his young eyes, spotted him. He had gone up one of those long driveways and was standing in the woods, up against a pine tree. He couldn't explain, of course, why he had gone out, although he had lots to say about his adventure....he thought it was a beautiful night and he had encountered amazing creatures to admire. I think he was sleepwalking, which is a common event for Lewy Body sufferers. Lately the Lord has been heavy handed with me in showing me his presence, and Lord knows, I need it. I would never have found him without the specific help I got that night. There was no moonlight available, and it was the kind of dark that matches the kind of quiet that you only get along these majestic shores. My instincts remain strong but both my eyesight and hearing are not what they used to be. I simply would not have found him, and he could not have found his way back. So once again, whoever you are--great spirit--thank you for the overt care in sending such an improbable gift in the middle of a terrible night for me. I know I don't deserve it, and I keep getting it anyway. Powerful lesson in that.

Freedom

Entitlement. That's my problem. I guess I always figured I deserved happiness. That somehow good things would come to me and the horrors I saw others go through were, albeit awful, not going to happen to me. How do we become entitled to happiness? I suppose from magnificent good fortune. But all that good fortune sure doesn't prepare you for the reality, which sooner or later, bites us all in the ass. I simply can't stand the horror show we are living. I want desperately to be living with my daughter and her husband--who want me!--but it is becoming clearer by the day that I don't have that freedom. I am just sick that my grandson has grown his chubby thighs and extra round cheeks without my testifying to them. I saw a magazine in a doctor's office recently showing a young woman in flight--it looked as though she were diving off the bow of a great ship. The graceful arc of her body, the clear blues of the sea and the sky, the perfect whites of the few clouds above her all contributed to the sensation of freedom. I can't get that image from my mind. I want to be that girl. And he is miserable. Which breaks my heart. He doesn't know exactly what's wrong, but he senses it is somehow his fault and he definitely senses my despair. So I am miserable and despairing and guilty of making him feel bad about that. I am not flying gracefully off the bow of a beautiful yacht or watching my newest grandbaby thrive and grow. What or where in the world is the answer to that? I am in new and unknown territory, remember, as I am spoiled rotten by my former good fortune. I don't know what to do, but entitlement or not, feeling like this is awful.

Thursdays with Jeanne

I start my day with an apparition at the foot of my bed, mumbling incoherently. I lift one eyebrow tentatively, just to make sure there is no blood or obvious mess or injury. As I slowly make my way out of my blessed retreat, the apparition vanishes. I stumble in the dark doing morning things, feed and medicate my old cats, make coffee, start breakfast. I go back upstairs and check on my Casper and he is fast asleep, curled easily on his side as if he has not been making early morning visits at all. I remain the most disappointed in myself. The screaming self pity is almost paralyzing. Oh, I go through the motions, but the joy in my life gradually leaks out, leaving me a shell, an apparition myself. I yearn for my babies...the grandkids whose presence is an actual antidote for the malaise that is life's end game. I can't seem to find the energy to do even simple things that would help. I am not curled on my side, giving up, mind you...I visited a day care center yesterday and endured the heartsick routine of filling in forms and filling in the outer world on the mindless, numbing loss that is our life. I am seeing a new therapist, but I always feel better when I am out and alone for a minute, so she only sees me that way. I talked to a neighbor who is caring for her mother with Alzheimer's about sharing duties on occasion. We spoke energetically about my bringing him with me to stay with her mother when she has a meeting and her bringing her mom to stay with him when I have an appointment. We smiled brightly and promised to be in touch. Then we both returned to our own homes and closed the door, overwhelmed at the prospect of handling two people with this disorder at the same time. My friend agreed that I could bring him to her on an occasional Thursday while I try to go back to yoga. I told her I would pick up dinner after yoga for the three of us. That way we could visit a little also. So the efforts are there, sort of, but the joy continues to leak. Late summer's beautiful weather is such a gift and it adds to the sadness that I can't seem to reach out and enjoy it. I talk about it and stand for moments with my face in the warm sunshine. I sit on my porch and breathe deeply the gentle air. But something is sorely missing... I go through the motions at home. I recognize the needs and the efforts required to address them. I am witnessing the journeys of others and the suffering. My friends' poor health, my family's challenges. I feel as though I am becoming a ghost. A cardboard cutout of myself. going through all the proper motions. but no one is home.

Transitions

The thoughts have now left with the language. Words have long been transposed but they are now chased ferociously by thought, which can't seem to get out of his head fast enough. I want to hold him tight and yell into his ear, "This is not a contest!" You don't have to send your thoughts out of your head so fast! Please slow down!" A good day is when he smiles a little and sends a good morning message in his own strange code, the anxiety lessened,the worst of it a vague and constant confusion. Nothing is quite right and people and places keep changing on him. But he is generally amiable and easy to get along with. But the bad days--holy terror ride Batman! Yesterday started out as a medium day--lots of confusion and general disquiet, but no overt problems, at least none that I addressed, even to myself. Lately I have been struggling to go on with my own life, to make decisions and plans that reflect that not only is he not well--I AM! In one of our last sessions before she died, my therapist urged me to remember --in the throes of caretaking--that I was not sick. So I may very well have overlooked some warning signs in his behavior in order to honor my own need to make a few simple plans and follow through with them. All I know is that after an afternoon of light shopping and eating out for lunch, all hell broke loose on our way home. We were cruising along, within 5 miles of home, surfeited and (I thought) happy, comfortably comatose from the sugar load of the ice cream cone adventure which had ended our outing. He suddenly began shouting from the back seat. He was angrily gesticulating and demanded to be let out of the car at once. He appeared to be in full blown paranoia and very, very angry with me. I was enormously grateful for the child proof locks on the car and prayed lustily that they would work, as they had not been tested before. He kept trying to open the door and to get out, even though we were in a busy street with traffic. The car episode is of course terrifying, but even more upsetting to me was the appearance of that size rage, completely out of the blue and with no apparent trigger.

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.

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.

Karma

Apparently I "choose to suffer." My former shrink tried to teach me that suffering is a choice. I think she was referring to that yogic practice of 'staying in the moment'. Yogis believe that suffering is found in the train trip to the past and the obsession with the future. If you stay in the moment, you can find it to be suffering free. Don't know about you, but my moments can make me suffer pretty good. It is heart breaking and wrenching to watch someone you love fade away, filled with anxiety and angst.
In literature Altzheimer's is frequently referred to as "the long goodbye." Here in this house, it is and it isn't. I suppose this loss is longer than a car accident which can take someone immediately, but it feels really fast. After the initial strangeness of diagnosis and the stages of denial settled down, I peered over the top of that particular nasty pudding, and he was gone. A skinny old version, a stand-in clone, an apparition less fun and lots more trouble had taken his place. That feels fast, sudden.
And in other ways it is a grinding, never ending assembly line of pain and loss. Like Lucy Riccardo, I am dropping and breaking most of what I am dealt.
So one of the many painful things I am learning is that I am not good at this. I remain obsessed with my own losses and not enough about his! I am already worn out emotionally, and though I yearn for a nice waltz, I fear we have just begun this polka.
And we appear to be dancing separately.

Alice

This rabbit hole is deep and scary. I actually tired myself out from being so angry this evening. I retreated into my computer, a familiar escapist behavior for me in times of stress and/or boredom, both of which I have been struggling with lately. I have been working harder than ever but am grossly and hugely BORED! Can one be grief stricken, enraged, AND bored at the same time? Apparently so.
As I was uncharacteristically quiet and withdrawn, he began to talk. It was rambling and strange, of course, and made very little sense. But I began to hear patterns in his thinking. He asked where my house was and if I had children. He asked if I had ever gone to Taft school (where he had gone and returned to when grown, as its principal.) I explained that I had not gone there as a child but had returned to run an adult training program there when the elementary program closed. He got very excited and told me that his wife would be very tickled to hear that as she had done that too! When I explained that I WAS his wife, he replied that he knew that. He then asked me if I had a husband. His easy assumption of diverse beliefs fried my rational circuits enough that I couldn't keep quiet about it. I told him that if he KNEW I was his wife, he had to stop talking about me as if I were someone else. I slipped a little further down the hole.
Later that night, he came from the bathroom and gave me a big kiss. I told him that it confused me that we were kissing since he wasn't sure who I was. He replied, "Don't worry about it. I like you as much as anyone else around here."

The Looking Glass

Last night scared me. Not physically, as in immediate danger. But I had a ping of fear that I wouldn't be able to do it after all, to handle it. After the hysteronics settled and I coached myself out of the personal effrontery of the barrage of personal insults I was getting, his unbridled paranoia set in. Each time any well intentioned loved one inquired...you know, those who actually want to know, not the social version of the questions, he was so near me I couldn't actually discuss how bad it was. Although he never lets me out of his sight, I am, apparently, the cause of all these terrible things that were happening.
....and then.....
tonight was lovely.
He was personable and had no serious paranoia episodes. Isn't it funny that one can judge a "good" day from a "bad" day by the degree of paranoia? Tonight he kept checking the furnace room as he deemed some scrub buckets to be too close to the hot pipes. He earnestly pleaded with me to accompany him to do the checking on everything. Even after we had thoroughly checked and made sure nothing was touching said pipes, he would meander back in there to check. He ate the sandwiches I had left for him while I ran out for an hour to yoga. He remarked about how good they were. Usually he eats nothing and if he does, he doesn't remember nor remark upon them in any way. As I helped him dress for bed, I was pleased that he had brushed his teeth on his own. So strange...to be so pleased over the degree of loss.

Thin ice

I happily announced to the neurologist that we were planning a Greek cruise, a great adventure to celebrate our mutual retirements, our combined 80 plus years of hard work. A cruise to historic places for my old guy to enjoy his passion for history and foreign travel, and my need to be pampered...someone to cook and move us around from place to place. A perfect plan. He took off his glasses and got quiet for a moment. Then he said, "Get travel insurance. Get it now." This I did not expect. I thought maybe a social response like, "Good for you", or even an "Atta girl!" Perhaps some tips on what to expect and/or how to handle some things. But not that stern, direct command.
After he had referred us to a specialist on memory loss, I experienced that same strange sensation. As I asked questions, I caught the looks and slight glances among the specialist and her aides in the room. They all knew something I did not.
There is a ton of literature out on early memory loss. There appear to be lots of support groups available for early onset memory loss (the young). There are meetings to attend and lectures to learn from. There are handouts and social gatherings and internet sites. When this disease progresses to "moderate to severe", the support 'swarm' evaporates. You can call the 'hot line'. That's it. You can get "assisted living" information from them, for example.
It began to dawn on me what everyone was knowing that I was not. I was about to be dropped into a free fall of behaviors and responsibilities that I could not know about until I was there. Sort of like childbirth. No one actually tells you what it will be like or what to expect. Women all keep that information to themselves with knowing glances to each other at baby showers.
In memory clinics, the specialists look at each other that way.

Mirror Images

He is more creative than I. I am more imaginative. He is color blind. I am inexperienced in design. His doodles used to look like actual people. Mine look like stick figures and geometric patterns. I suspect now, looking back, that his insistence on order and pattern according to his own preconceived notions, were more about OCD and control than his artistic inclination. I know I did not care enough about how anything looked to fight much about it. I only drew the line at function. If something met our needs, I liked it. If it interfered with our family's life style or health, I put up a fight. One old days' fight used to go like this: (him) "Our lawn looks like crap. If you don't care about what it looks like, I do! We need to get Chemlawn here at the very least." (me) "We are raising living creatures here, not grass. Children and dogs! not grass! I don't care enough about what it looks like to poison the environment we live in!" The disagreements were not always so clear and I didn't always have such a 'saintly' position on things. Sometimes I just wanted to have a say, an opinion that wasn't treated like absolute insanity. (I didn't understand OCD yet, so took such treatment personally.)
The sad thing now is that he no longer cares much about what anything looks like. He only cares about staying within "stalker space" of me, the living oracle of all knowledge...unless there's a man around, any man, but especially one in a truck, any truck. He repeats, at least three times, anything I say, even small requests like, "brush your teeth". His language competence is so poor now that he really has lost the nouns (and verbs). "Brush your teeth" may as well be, "jump off the bed." Complicating that is his growing loss of confidence in acting solely and without direction. Throw in a goodly amount of the always present anxiety and the increasing panic brought on by the disease process and you can just imagine these small steps in our house turning into major events.
Now I can choose the beds we use and the colors on the wall. I can cancel Chemlawn and buy anything I want (as long as we can afford it.) Isn't it ironic that I should yearn for some kind of disagreement? Some feist, some resistance to my choices? I would give a lot just to hear him say again, "How can you stand that color in this room? Let me show you how it should look."

Blind fish

I have been talking about anger a lot in these journal entries. It is the largest single topic, I think, of all the vagaries of this dark journey. Now I wonder if maybe I am not stuck on one of those 'stages of grief' plateaus. I know anger is easier for me than grief. I would much rather fight and try, than give in to the deep well of sadness that lurks below our mental feet, like a vast underground pool housing those fish that are born without eyes, as there is no light in their world. There is little light in our world at the moment. It takes monumental effort to ferret out some small joyful thing, to celebrate any kind of positive action. Every single thing I try and do with him brings the fear and anxiety response. Every single positive behavior is matched by his relentless, debilitating darkness. The problem is that I can't let this negative energy wash over and beyond me. It goes right through me and on the way, sucks a little more of the light from my soul, leaving me less than I was and more and more depressed. It also makes me mad that it's happening and that I can't seem to get a handle on it. Maybe part of the problem is that it's changing fast, too fast to learn new coping skills certainly, in order to keep up. In any case, the rage continues unabated. I would like to know when I can look forward to at least the 'bargaining' stage, if not acceptance. I really need to treat him as I would a child. I mean, I need to drop all expectations of behavior so that I am not continually slapped in the face with the reality of it all, and not newly enraged over our circumstance.

He spent the day yesterday trying to cut, bend, or fold a cardboard box destined for the recycle bin. I spent the day trying to be supportive and non judgmental...supplying only a gentle reminder or finding a tool, or making indirect suggestions. I was benign, neutral, mildly friendly, and trying desperately not to take over or literally take it from his hands. I wanted him to have something to do that would appear to be of help (I didn't care if the box made it to the bin). His response to my NOT taking it over was to assume I was mad at him! As the day progressed, his responses got more and more agitated, until he yelled at me that he felt as if he were going to vomit and why was I so mad at him to be making him do this.

I am totally confused by this disease. How do we plan or develop coping skills for dealing with a gradual loss of someone's mind? I am not as well equipped as the blind fish. I am used to light in my world and am having great trouble finding my way.

I love him.

I have abandonment issues. I suppose it started with the death of my father when I was an infant. (I still yearn for a model for the grey green eyes that stare back at me in the mirror.) The subsequent shifting of relationships and places of residence didn't help with this obsession. We had a big family and the various family members I invested in seemed to gradually fail and die. Of course everyone dies in time, but for some reason I have indulged in the "magical thinking" that these events were somehow related in a causal manner to me!
The loss this year of my therapist fits right into this strange phenomena. She taught me so much. She helped me be kinder to myself and to accept the things I didn't like about myself. She helped me see that everything about each of us, all the shame and the the things we don't like about ourselves, make up the whole. In other words, we wouldn't be who we are without ALL of what we've been. Very important stuff. But it didn't help her from being associated with someone who would, of course, see her demise. (magical thinking at work!)
I act like a fishwife around him. I have finally reached some equilibrium about having to do everything, to be responsible for EVERYTHING, but now I have to deal with doing everything over again. He 'helps' by taking everything out of the suitcases after I have finally packed and planned our needs, for both of us. Have to do it all over again. He 'helps' by bringing the garbage can back into the garage---full---before the garbage man has come. Have to do it over again.
So it's back to the fishwifery behavior for me, and the subsequent tears and apologies. My therapist would say, after these confessions, "You love him."
That I do. And he is gradually abandoning me, through no fault or desire of his own. This is hard.

Weight lifting

Heavy. Constant pressure on top the shoulders, sometimes on top the head. Relentless. Never ceasing. Like a waterfall...seemingly innocuous, yet deadly in its constancy.
It isn't easy being old. It takes steady efforts to be optimistic as joints freeze up and ache, as peers leave this world around you, as the long, colorful patchwork of your life looks endless...but stretches behind you, not in front. It is daunting to realize the count of your earthly days is way smaller in the future than in the past. Yet we persevere. If we are lucky, we parlay that wisdom into increased kindness, understanding, empathy to those around us. We realize that most of our personal crises just aren't important.
Mornings are our most difficult. I try cheerfulness, but it is most often greeted with a kind of morbid paranoia these days. Example: (me) "Well, good morning! You got all dressed by yourself! That's wonderful!" (him) "Yeah, well, I know you. I'll be dead soon." Try as I might, I feel the weight, the burden, the grey of our days settle around my shoulders like a familiar, unwelcome guest.

My shrink is dead. Long live my shrink.

I met my first ever therapist about four years ago. I was wary and not at all sure this kind of action would be any help for me but thought it might be a nice diversion..a sort of internal, masturbatory journey, a self centered kind of celebration of me. I warmed to the process at first. I got to talk endlessly about myself, my stories, my own personal history, and someone listened! She wasn't waiting to tell me her stories as we do in our friendships. She just listened and asked occasional questions. She also interspersed germane suggestions and insights and kept my threads as I wove the tapestry of who I am for her. I was surprised when our time was up and mildly offended that she could stop this process on a dime, and, albeit gently, decidedly show me the door. I was hooked. As I left her office that first visit, she said gently, "You know what I would really like to hear next time? I would like to hear what you didn't talk about. Your husband."
There it was. Needless to say, the next session was dominated by my wailing. I voiced my greatest fears to her that afternoon, that I was in fact losing him. Over the next few years I grew to depend on those sessions. Not only was it a safe place to face my fears, to get reassurance that my inadequacies were human, but also to get actual help in the form of referrals and planning. We were a team.
I left in November to stay with my daughter for a few months. A couple weeks into our visit, I got the news that my therapist had died. The word 'stunned' is all I can come up with, but it is completely inadequate. This kind of loss is debilitating. I thought so many things, many of them crazy. My therapist was holding all my secrets and she died. All I know is that I told her stuff I have told no other living soul. It made me feel better, much better. But she died. From the weight of it. At our last session together, she told me that kind of thinking is called "magical thinking". I find it some serious self centered behavior. A wonderful woman, a really bright light in the world is gone...suddenly, shockingly, and somehow, it's all about me.