Saturday, December 24, 2011

On Dogs

This is a picture of the current dog exploring a crop of mushrooms (that you cannot see) of a variety which she hasn't encountered before.  All rights reserved.

This time of year my thoughts turn naturally to dogs.  I got my first dog for Christmas in fourth grade.  She was a mid-size poodle, white, so of course I named her Fifi.  I had her until sometime in the summer.  My dad used to come and get me on Sundays.  My mother began to insist in her irate way that I take Fifi with me on Sundays.  This wasn't really fair to Fifi or to my dad whose plans did not include looking after a dog.  If we were not visiting various relatives, we were cruising around and going to beaches, woods, museums, and restaurants.  Dogs were not welcome in many of those places.  And I knew it was not safe to leave a dog in a hot car.  I took Fifi with us one Sunday.

My mother wanted me to take Fifi along the following Sunday and I refused.  Saying no to my mother over anything was dangerous.  When I came home that evening, Fifi was gone.  This resulted in  tears (also dangerous when it came to my mother).  I broke down and cried and cried.  She then told me a lie.  She said she had given Fifi to my great grandmother.  Sometimes at night I would go to bed and picture Fifi roaming the streets of Newark cold and lonely and afraid.  At any rate, I never saw Fifi again.  We went to visit my great grandmother the following Christmas.  When I asked repeatedly where Fifi was, my mother told me to shut up.
Since I've been grown and on my own, I've always had at least one dog and at least one cat in the household.

My dad also remembers a childhood dog.  The dog he remembers was a largish sort that was very protective of the kids in his house.  That dog was actually his father's dog but he was much loved.

sapphoq on life

Friday, December 23, 2011

Free falling with Lewey Body Dementia

My dad has been dealing with Lewey Body Dementia for about ten years now.  He is staying nearby in an assisted living place.  I see him almost every day.  In the course of the past year, we have shared many memories.  We have also talked about politics, dogs, and family.  I really cherish this time with my dad.  I never ever thought that he would be living up here.

Through our time together-- whether it is spent at the V.A. waiting for medical appointments, in a local diner, or just sitting in his room watching him speak with the Bill Collector of the Month over the phone-- I've gotten to really know my dad better than I ever had before.  Although his Lewey Body Dementia has robbed him of his former life and a marriage, the fundamental of who my dad is shines on through his battered brain.

Lewey Body Dementia is not the same as Alzheimer's .  The two dementias are quite separate but can co-exist.  There are some important differences.  Alzheimers does have a genetic component and there is at least one form that specifically runs in families.  Lewey Body Dementia does not.  The course of Alzheimers is relentless, steady, and able to be staged.  Lewey Body Dementia cannot be staged.  Any of the symptoms can occur at any time during the course of the disease process.  Also, folks with Lewey Body Dementia will often evidence a wide range of skills and deficits on any given day, which can vary from day to day.  It is unfair to lump Alzheimers' folks and Lewey Body Dementia folks together in one nursing unit.  The folks with Lewey Body Dementia are not as mobile for as long as the Alzheimers' folks are.  There can be more Parkinsonian-like features because of the involvement of the brain stem with Lewey Body Dementia Lesions.  The largest similarity that I've found is that both conditions are utterly disruptive of a life.  Dementia splits up families, pits caregivers and loved ones against each other, and frequently impoverishes the sufferer.  More information, and more accurate information can be found at the Lewey Body Dementia Association website.
Here is the link: .  Any mistakes in the description above are my own.  I am a daughter of an aging parent who has Lewey Body Dementia.  I am not any sort of expert.  Anything I express here is not intended to take the place of medical advice.  What I offer here is anecdotal only at best.

And yes, I am a daughter of an aging parent with Lewey Body Dementia.  As painful as it has been for me to bear witness to the times when confusion and frustration take over my dad's thinking, it is far more painful for him.  Dad knows he has Lewey Body Dementia (most days).  I am losing one person, someone that I've always held dear to me in my heart of hearts.  My dad is losing everyone.  But meanwhile, there is still a bunch of living to do.

sapphoq on life

Sunday, August 28, 2011

Hello from Hurricane Isabel

Nope, I haven't written in awhile.  This time I make no promises about being "back" or how often I will update.  My promises have become void, my word dishonorable.  So I will not offer any false promises this time or guarantees that I may not able to fill.

Dad is now installed in a second assisted living adult home.  The owner of the first one he lived at for a few months had asked the State to initiate closing, since he could not keep up with a necessary list of corrections. Dad and I looked at three places during the first seven days after he was told that he (and the other folks living in home #1) would have to move within a month.  The nice guy from the state gave me the names of the two places around here that were top scorers on State Inspections.  I selected a third to look at as well.  The third place was an adult home specifically for veterans.  The place was run down, which was rather unfortunate as the concept was excellent, and so Dad rejected it.  The second place was a bit of a drive out in the country "next to the chickens," Dad said.  The place Dad chose was smaller than the home that was closing-- room for twenty folks rather than seventy-- but also well-kept and beautiful.  Here was an activities calendar that was not entire fakery.  Here was a true feeling of home and appetizing smells wafting through from the kitchen.  Dad was accepted.

Dad panicked a bit after hearing that he was accepted.  Suddenly he wanted to see several more places.  He didn't want to leave until he absolutely had to.  I wanted him out of there as soon as possible as already staff was quitting.  The day came and Dad was packed up.  Husband and I moved Dad to his new room in his new assisted living place.  We moved his stuff up the elevator (equipped with a chair for sitting in should someone wish it while using the elevator) and into his rectangular room with a view of some very large pines out his window.  We ate lunch and left Dad for his first day in the new place.

Dad settled in.  Within the week, he was talking about his observations of his house mates-- a couple had also landed in the same place Dad had so there were a few familiar faces-- and staff and board members. The board members were all (and remain) actively involved in the day-to-day affairs of the house.  Dad quickly became comfortable with the sea of middle-aged ladies who came to visit almost daily.  He was instrumental in getting a new flag for the house and he began to help take care of the beautiful flower gardens outside.  He also insisted vehemently to the staff that feeding the local squirrels bread was equivalent to encouraging mice to visit.  He often went outside and picked up the pieces of bread that someone had scattered around the lawn, replacing them with peanuts at the base of one tree from his own stock of foodstuff.  When staff told me what Dad was doing, I smiled and said he was correct about the bread.  During the summer, I often arrived to find Dad watering the flowers or inspecting the leaves of the old cherry tree or delivering nuts to the squirrels.

Being involved with the garden suits Dad.  His dad had a gardening/landscaping/mowing business.  Dad had helped with this venture as a teen.  As a small boy, Dad lived with his family on a truck farm during the Great Depression.  Dad remembers the chickens.  There were chickens on the farm-- and later there were chickens in their backyard in town.  Dad also had homing pigeons as a boy.  Two of Dad's brothers went into landscaping after their stints in the Armed Forces.  So growing things and small animal husbandry are "in the blood," to use a quaint turn of phrase.

There have been unsettling times too.  It took awhile to get the medication right for Dad's (now confirmed) Lewey Bodies Dementia.  There have been days when Dad has wanted to drive, travel, relocate to non-assisted living, not take any medications, or focus on government conspiracy topics.  Even now, Dad still wants a job part-time.  And there are other days where the old Dad shines through his dementia.  And other days, the majority of days, where Dad does not appear to be a stranger to me because of his neurological decline.  On most days we smile and laugh and talk about the state of the world over coffee at the local diner or on a ride to the V.A. for a medical appointment.

Dad has endeared himself to the staff at the house because of his sense of humor, his ability to calm one old lady in the midst of her violent verbal outbursts, his neatness and care to his appearance.  One night the electricity failed in half of Dad's bedroom.  He quietly took the elevator to the basement, found the circuit breaker, inspected the electrical system and correctly diagnosed a problem (which he alerted the maintenance man to the next morning who called the electrician immediately to fix it), but then could not find his way back out of the basement.  Dad knocked on the walls a bit saying, "Help, I'm down here" until an alert night person heard and retrieved him.  He would sit with the one old lady in the midst of her agitation, talking to her over and over until she calmed down.  And he retains the ability to shower and shave and somewhat organize the belongings in his bedroom.

The other day, Dad remarked to me that he wanted to help the mayor run for re-election.  "But Dad, she's a Democrat," I told him, knowing that he remains a staunch Republican.  "That can change," he replied.  And indeed, Dad is registered to vote and is looking forward to going to the polls for the next election.

I am slowing acclimating to Dad's fluctuating neurology, accepting that he will die and that the dementia has left its' mark on his being like pock marks or a permanent unappreciated tattoo.  And although these things explain part of my absence, it does not explain all of it.  The rest of it has to do with the fatigue that is generated by my brain injury, my inability to extend myself emotionally while being with Dad during his final days, my increasing preoccupation with the computer art type things that I have been creating from my photographs, my own frustration when I think about all the things I have yet to do during the time I have left here on this sojourn.

And so, I hit the "publish post" button and retreat once again to my window where I am watching the rain and high winds of the latest hurricane.  I am impatient with the necessity of staying inside today.  I long for my deck where I sit studying the birds who visit my feeders (and a few individual birds who visit me!) while my old dog snoozes nearby.  The news is bad.  Ten people have died because of this storm along the eastern seaboard already and it ain't over yet.  My own spirit is lousy with restlessness.

sapphoq on life

Sunday, May 15, 2011

Taking the "Fun" out of Dysfunctional

To my first half-sister, I remember you when you were a baby. You had a little sky blue dress and a head full of brown hair. You were cute. And I loved you. When you were seven and I was seventeen, I was torn from the life I knew with you and our mother and your dad/my step-dad. It was the second beating and far worse than the first one. Our mother and your dad/my step-dad had shown up at the church I'd been attending drunk. Our mother dragged me out of the church on my knees, flung me down the steps. The people in the church began praying, loudly storming the gates of their heaven on my behalf. I could hear the church people as I was being forced into the car. The beating began in the car. Our mother sure could pack a punch. At home the beating continued. I can still hear our mother saying to your dad/my step-dad, "Hit her, T. Hit her." as she handed him the umbrella she had retrieved from the hallway. She was exhausted and needed him to continue the beating for her. The lights went on in the neighbors' house and just as quickly extinguished. My screams were that loud. The next morning, an elder of the church took the only meaningful action that anyone there that night had. He called my father.

My dad called me the next morning. It was a Monday. My dad begged me to come live with him. I said yes. The second beating had been much worse than the first. (I had the scars on my knees for years after). After the first beating, I comforted myself with the mistaken belief that this wouldn't happen again. But it did happen again. And so, right after our mother left for work I began to pack in secret. Over the course of the next three days, I took as much of my stuff out of the house as I could.

During that time, I lost track of you in my memory. In my memory, I cannot bring forth any accounting of your whereabouts. I'm pretty sure that you were left sleeping at home when our mother and my step-dad left the house in a drunken rage. Your grandparents lived upstairs so you would have been safe enough. Were you sleeping downstairs or upstairs? My guess is that you were sleeping downstairs. I was sleeping upstairs in your uncle's bedroom while he was in prison. Did you wake up during any of the commotion? Did you sleep right through it, or pretend to sleep right through it afraid that you would be next? Did you tell yourself that I was bad, that I deserved it?

You told me once-- many years later-- that you have no memories of your own childhood until senior year in high school. You remember being thrown down the cellar steps because you were refusing to practice the piano. You told me that you had thought that was "normal." I don't know what you went through after I left the household. I had to leave for my own safety. Did you become the target that I had been? I had a fantasy about rescuing you for several years after I had to leave. During my visits through the end of your high school years, you didn't seem to want rescuing. You did write me once about going to a concert and taking your first acid trip. I don't remember what I wrote back to you. I do know your letter shook me to the core and that I did write back. I had found recovery from my own addiction at that time. Your letter scared me. You were only fourteen. I was twenty-four.

There was your first wedding. I decided not to attend. I didn't feel that I would be safe there. Years later, there was my wedding. You and my other half-sister met for the first time. You are ten years younger than I am. She is twenty-five years younger-- my dad and his third wife's child. You don't know each other. You aren't related to each other. I don't know what happened at my wedding. Both of you were bridesmaids. You hated each other. Both our mother and my father indicated to me separately that neither of you wanted a copy of the picture that the photographer took of the three of us.

Your dad/my step-dad got older. He had a heart attack. I went to see him at the hospital. He thought he was going to die. In that hospital bed, he made amends to me. He didn't die then but the amends stuck. (Our mother to this day will not admit to our history). Years passed. Your dad/my step-dad had Addison's, developed Parkinson's. Began failing. He died. Our mother called me on the telephone two weeks after he was buried to tell me. (I found out later that she had "allegedly" called my aunt directly after he had died and told my aunt that she had told me). I was left out of the obituary that the on-line volunteers found for me later. I signed the on-line guest-book. I live, dammit. Your dad/my step-dad was important to me and I miss him. He wasn't my dad and can never be my dad. But he was my step-dad. And you are still one of my half-sisters.

You got married again, had a couple of kids, moved far away. Made something of yourself in your community. The last time I saw you was at Gramma's funeral, holding your little boy in your arms. You shunned me, ignored me. I needed my dad, demanded that he come to the funeral. After all, he had known Gramma and had loved her too. Perhaps that was the reason for our mother not telling me about your dad's/my step-dad's death, I don't know. I can only guess.

I talked with our mother on the phone on Monday. It was a polite but nice conversation. I do not need her to acknowledge our history together. Through the years, hope changes and my hope had changed. Our mother and I have been like two women waiting for a bus, seeking some sort of conversation and perhaps a tiny connection. And on Monday, I thought whatever healing was able to happen between us had. I misjudged her sense of vindictiveness, her need for revenge.

On Tuesday your second husband died. On Thursday, our mother called our aunt and asked her to tell me that your second husband had died. By Thursday it was too late to arrange for a plane. I scoured the internet for your address so I could send you a bereavement card. I did not find out the arrangements until last night-- courtesy of the internet once again. I looked up your address on Google Earth, saw your home and your neighborhood. Flew past the place you work, the downtown stores, the bay. It was not by my will that I am absent from the viewing today and the funeral tomorrow. All of those things are not really for the dead. We do those things for the living, for those left behind. I would have liked to have been there for you and for your kids. But we have become strangers. (Our mother sure knows how to take the "fun" out of dysfunctional). I am crying on the inside.

Tomorrow I will send you the card I got for you. It is the proper thing to do. My dad says it is and my husband concurs. I wish for you comfort from your family, friends, community. I hope your children will make it, grow up to be compassionate human beings and without any history of the traumas that you and I have both experienced separately. It is many years later, little half-sister. You are a grown woman with a family of your own and a dead husband. I am much older than seventeen now and you are much older than seven. I was not able to rescue you and for that I am truly sorry. Goodbye little sister.

sapphoq on life