Thursday, May 31, 2012


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.

Saturday, May 26, 2012


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:!


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.