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?!