Fool's Gold

I am a clown. A certifiable circus freak. A bearded fat lady, wolf boy, fraud. A deceiver, a fool. I hand out wisdom and suggestions like nuggets of gold found in the Colorado streams of my mind. Two young neighbors came to my door, separately today. One was struggling with what she desperately wanted that she saw others getting, and is out of her reach. Another is struggling with newly discovered serious mental health issues. I took them into my home and warmly panhandled my advice. My sage homilies. Not two hours later a recent immigrant came to my door asking for such advice, as she had mined at this profitable stream before. Eureka!! Her pouch was filled with treasures of ideas as well. I prepared meals to take to church for distribution for the homeless. I called an ailing friend to make plans to visit, so she could enjoy looking forward to a little something. (Oh yes, this prospector is righteous as well!) And I am a complete and utter fraud. I know nothing about what to do for myself. Nothing. I find myself shrieking nonsensical things like, "what makes you think you can wear pajamas?!" And, "why are you looking for what isn't lost?" Sometimes I fear I might actually be losing my mind. My old cats continue to decline, reflecting the gradual departure I am living through. My son's girlfriend--whom I love--left him again, as he can't make the kind of commitment that is reassuring enough for her. Another body blow of loss. I can dress the part and wear the hat and talk a good game for others. But I can't deliver. Not for myself. Not for him. I know not how to alleviate this terrible pain and I can't stand the feelings of constant and complete loss.

Roller Coasters

I spent three days in hell. Thoroughly spent. Unable to cope in a healthy way with his total cognitive loss. And I mean the kind of loss that thinks wiping your butt after pooping is accomplished by polishing your knee. But somehow, with lots of reaching for good friends and a therapist, I once again reached a kind of stasis. Now, I have learned through experience that just when you relax your vigilance with this disease, bad stuff happens. Sure enough. After a fairly nice day of not feeling my own raging anger, and after the honeymoon glow of absence of anger, he erupts in huge paranoia , rage, and distrust of his own....over nothing that can be seen by a rational mind. This whipsaw effect of going from my own mind blowing rage stage, to a kind of acceptance and calm, only to be blindsided by his huge rage two days later is unsettling. This time I remained reasonably calm and we had another fairly pleasant day. As we sat on the couch, he remarked, "Oh, do you watch this show too?" I answered yes, and my first thought was that maybe he had already seen it during the day, while I was taping it. But something felt odd. I turned off the TV and asked him who I was. He pondered for a moment, then said he wasn't sure but he thought I was probably a teacher. The rest of the evening we spent with his remembering people we had known briefly and casually thirty some years ago, but his memory of our relationship never returned. He told me he thought I was a wonderful person but that was all he knew. I would like more balance in my life and I can sure do without the ups and downs of the vagaries and vulgarity of Alzheimer's. But the irony and unfairness of memory is awful. He remembers a man we met maybe five times, thirty seven years ago but can't place the woman he has lived with for forty five years. Sigh.....

Of the Feline Persuasion

I have two old cats, both of whom are nearing their end and unwell. One has a thyroid condition; the other kidney failure. Both suffer from a seizure disorder though my kidney cat is much worse (and a few years older). My oldest cat also is deaf and has dementia. She forgets where her litter is and forgets that she has been fed. She still gets pleasure from sleeping in the sunshine all day and sleeping on my head all night. She does not appear to be suffering. Dealing with the nursing and loving duties for these old friends is increasingly hard work involving administering meds and subcutaneous fluids, but nothing I can't handle. More importantly I know what is needed, what to look for when my help just isn't enough...when it's time to give them the ultimate gift of love that we are unable to give to our human companions. But in this medical facility that used to be my home, we are also mired in the miasma of Alzheimer's. Last night he asked me if I had a husband and where I lived. He thought I was a wonderful person but didn't know more about me than that. Guessed that I was maybe a teacher. (He often thinks we are in a school.) My son suggested that maybe he was asking because he was interested and wanted to date or even marry me!) The next morning he wanted to know who all the people were in the house during the night. (There was no one.) He still didn't know who I was. For all my rage, this kind of loss taps into a very deep well of sadness. This is real loss.

Reverie

My mom grew up in a house full of siblings, at least four of them big boys. She often would escape into her beloved books and would find a reclusive spot like the corner of the attic and stay out of everyone's way and commune with her own thoughts. We laugh about how we resist being like our parents, even deny similarities through our teen years. As we mature, we recognize and even sometimes appreciate those traits we find in ourselves that are uncannily like our parents'. It is so with me. Escape is what I yearn for. An attic is what I seek, with a trap door that opens only for me. I am overwhelmed with my anger at our circumstance and the degree of dumbness with which we are now dealing. I scream, but alas there is no attic, no book available. The mess, the pain, the problem is still standing right there, no matter what I say or do, how loud I yell or how compassionate I try and fail to be. There is no one else to fix it.

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.