Nuts

Like an attention deficit little squirrel, my mind races at night. My body begs for sleep, but that critter disallows any such nonsense. Miles to go. Miles to go. Why do I act this way? Why does he act this way? Oh wait, I know why he acts this way. Why do I react to his acts this way? And on and on. A major problem for me is the total unpredictable nature of this disease. I just get adjusted--sort of--to some particularly outlandish behavior and another starts up. And I mean immediately upon any kind of accommodation on my part. Very smart and insightful people have assured me that my own behavior is well within normal range. That this is extremely tough and dealing with it 24/7 can break anyone. Add to that the yogic (and the therapy) learning to love oneself, even the parts you don't like, because ALL of you--good and bad--make up your total package. All your behaviors and experiences create the person you are, and you have a model for understanding. You would think. But models don't seem to help. I actually shouted this out loud the other day, "One of us needs to die soon! It should probably be me as you are at least sweet natured. I am not." And I am not. I am absolutely, nails on blackboard, screeching livid! I remain fiercely angry with him for being sick and helpless. I yearn for the grace to release the anger and just love and care for him the best I can.

The Sound of Wings

There is an adage that teaches us to be kind to others for we know not the burdens they carry. Oftentimes we know not the burdens WE carry ourselves. Random kindness and understanding, handed out before you even realize you need it, is very healing. We went back to the neurologist for his routine checkup and before I knew what was happening, she had whisked me into the social worker while she examined him. I found myself proclaiming such despair, sharing deep loss that continues to pound away at my psyche. It surprised me that I was still suffering so keenly, so sharply, as I have been at this for some time and thought I was making 'progress'. I suppose 'progress' isn't about the lessening of the suffering, but maybe about acceptance of one's lot in life. My husband used to grow flowers...lush, mad explosions of color and exotic shapes. The house smelled like compost for weeks and dirt covered his body from between his toes to inside his ears. He got into it. He would grin from ear to ear, his music--both great and trivial--blasting in his ear buds, sweat running down his back, his hands thrust joyfully into the dirt. Now he stares blankly into his deserted yard, the colors gone to black and white, the lush explosions a mere wisp of memory. Every now and then we still get a single blossom in a random location, obviously having forgotten that it had been forgotten. Its little perky face a tease, a postscript for the master gardner who had intended to tend it all along. He used to look into the yard and see possibilities and color matches. He would exclaim, "I'll never get it all done! There's too much to do!" Now I have to guess what he sees as he turns his eyes to the yard. Does he see the devastation in his mind reflected back at him in the abandoned yard? I look over the landscape of our life and reflect often upon the loss of color and shape and depth. It will be up to me to reshape my life's yard and bring color and hope and springtime back again.

Empty chairs and empty tables....

September 12, 2012 The long dark tunnel, echoes of light and forgotten days. Moments of exquisite pain, the empty togetherness of nobody home. It is much lonelier to be with someone who isn't there, than to be by yourself. I can hear my heart beats. I can watch my thoughts form and tumble out of my head and spill all over my face. I yearn for my loved ones. I am alone. September 25, 2012 What a simple learning. When I am with another adult, I feel so much better and am so much kinder to him. Is it because I yearn for adult, unimpaired company? Alone is isolating. I don't know. I do know that I was at my wit's end and my sister's visit saved my bacon. He was still crazy and lost, but somehow, in her company, I was concerned for him and helpful. Why oh why can't I do that on my own? Again, I don't know, but I can use this knowledge to help us both. September 28, 2012 Jigsaw puzzles. Life is all about finding the edges and putting patterns together to create understanding. October 7, 2012 If my grief moves through me like the tides, with reasons and rhythms of its own, then despair cycles through me with the rising and settling of the sun. Each and every day, as the day ages and shadows grow longer, my keening gets louder. It is only in my mind so far, but I fear I shall soon be shrieking out loud. There is such a resolute, singleminded aloneness in darkness. The only thing that has made life here, alone with him, bearable is the sunshine. Have you ever danced on the head of a pin? Watched a single droplet of water sizzle on a hot pan? October 11, 2012 Remember all that lamenting about the slowness of this loss? The changes that moved like glaciers, steadily, inexorably, creeping over eons down into the cesspool of dementia? That carved out of the landscape of personality, the characteristics that used to be there? Leaving great lakes of confusion and agitation? Suddenly that great ice floe of horror has been sliding fast, very fast, and it scares me to death. October 12, 2012 Me: I am so sorry I am not kinder to you. I am so sorry I get so frustrated and upset. Him: I think you do great. There has got to be a way to find our way home. I wish I could be a better person and get more done. I have to get home. I know that. October 27, 2012 Gethsemane: "I think I'll just kill myself," he said after not being able to express himself. "Oh?" I responded, "how are you going to do that?" "I dont know," he admitted. "But I feel like that would be best." Yesterday he forgot how to tie his shoes. That sounds like, "yesterday, I went to the store." Such a small thing. But such a huge thing. This morning I found him naked in his bed, his PJs in a puddle of pee on the floor with his diaper and a trail of urine leading into the bathroom. It doesn't require a Sherlock's help to write the back story. His Parkinsonian palsy is worse too. This man, who used to leave me scrambling like a puppy to keep up in our long walks, his 6 foot frame and longs legs making a mockery of my efforts to walk alongside of him, now shuffles aimlessly along, the distance behind me growing greater with each step.

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.