Red Pony Farm: A journey in motion

The Meeting

I sat on the vinyl sofa across from the nurses station. I was early for the meeting. I looked through the pile of magazines on the table beside me. Nothing current, all old news. I thought about reaching for the newspaper on the nurses desk just as one of the inmates clients who was walking past stopped to browse it. I watched the peeping canaries in their cages and I noticed that I had nothing to do with my hands and that I wanted something to occupy my mind other than thinking about what I was feeling. My facade of calm was only skin deep at best as I smiled a greeting to the bent over woman with the watering can, fetched for her by one of the women behind the counter, as she moved slowly past me to the ivy on the table further down the hallway and stuck her finger in the soil to check the dryness. Why do I have so much trouble being in this place I wondered? The social worker and the head nurse come out of the family room with another woman. I imagined that she was a relative of one of the clients and that they had just gone over the results of her family members semi annual evaluation. The social worked apologized and said that they would be 10 minutes more before starting the meeting with me. I smiled and said that would be fine. It didn't feel very fine. I rearranged myself on the squeaky sofa. The woman with the perfect white curls had finished browsing the paper, she folded it neatly, laid it on the counter top and disappeared behind a windowless door nearby. A picture of her hung just above the room number plate on the wall beside the door. I looked across the lobby at the large locked double doors with their little slits of window and the key pad with its rotating code. Always a combination of 1, 3, 7, and 9. Looking out the little windows onto the hallway I saw workers and visitors passing freely. I tried to forget the way it smelled in there. I tried to sit there on that side of the locked doors and relax. Because after all I can get up and punch in the code anytime I want and walk away into the open air. My father can not. I saw him as I came through those doors moments before, back to to me and seated at one of the dinning room tables. I didn't want him to see me. I was too far away at any rate thankfully. I felt ashamed at feeling that way. I never know what sort of uncomfortable-ness awaits every encounter with him now. Will I be his sister today? Will one of the workers ask him, "oh now who could that be coming to see you today Bob?" and will he smile shyly and say, "That could be my daughter." No, not likely. That hasn't happened since thanksgiving. I am most often his sister and he wants to know about the folks. My insides squirm when I tell him stories about their travels and that yes they are still up at the Falls. It is hard to lie to my father. But it makes him so happy to hear. I have been told that to correct him and remind him that his parents are dead these 40-50 years can take him right back to the first moment of raw grief. I have seen it and the resulting mental conflict that ensues. It's not pretty, though if anyone can handle it with grace and dignity it is my father. But I know my father and I can see the pain in his eyes. Two little tear drops from an ocean of hurt. It happened just last week on St. Patrick's day when a man at his table at dinner wanted to know how I was related to Bob. I should have said, "I'll let him tell you" But I took the chance. I said, "that's my father." My father looked at me. I knew instantly that I had been Edna Frances not Edna Leigh. The shock of anguish behind the deep brown eyes was deadened by the 50 units of insulin and the new blood pressure medicine. but I saw the stumbling confusion overcome him and for the rest of the visit he was depressed over so much missing information and not being able to make the necessary connections. I am still my fathers little girl. I still have so many old needs that are hard to set aside. I can tell my intellectual brain to grow up and I can act out every detail of how I need to be now. But there are reactions that my body feels, vibrations that resonate through my psyche and shake my core. My father is locked up and dieing. Shriveling up and bent over. He cannot find his own room anymore without assistance. They must watch him or he upsets folks by walking in unexpected. He cannot dress or wash or manage his own elimination of water. I look at the clock. Five more minutes. It seems like an hour. And then he's coming. Bowed over his walker and moving slowly. He sees a nurse coming towards him and starts to dance to the big band music coming from the dining room. Moving his shoulders to the beat he takes deliberate exaggerated steps grinning at her from ear to ear. She dances a step or two with him and hoots as she goes about her chores and he continues on to where I am sitting and waiting and getting ready to pretend that it's just a dandy day here in this smelly prison for dieing people. He smiles broadly in greeting and goes through the painfully slow maneuverings that will align him with a spot on the sofa next to me and lowers himself carefully into it. He greets me warmly always. I am always someone important to him. Why should it matter so much who that someone is? Seeing this face makes him happy. But, I grew up invisible in the shadow of my dead sister and some part of me still longs for recognition on my own behalf. When Dad was still living on his own but getting forgetful he decided to go through all his photo albums and label everyone. It was a great idea. And I should have helped him. I looked through them after he moved in with us some time later and discovered that I was labeled as my sister in every photo but one. It's too late for all that now. I want to let it go. There will be no time for chit chat this day, anyway. The locked doors burst open and suddenly there are children. My dad is blissfully pleased to see children. The woman who does the crafts hour brings her kids and they have come prepared to make Easter bunnies for each of the clients doors. Dad is all for going where ever the kids go and after some effort of rising, and giving me the kiss and hug I require, he is shuffling back towards the dining room. It's good to leave him happy. I couldn't help thinking later of those kids, the craft lady, the nurses, the staff, and the social worker. Most of them there everyday all day. They don't see it as I do. They have created a world where people like my dad can live safely, happily, and as healthfully as possible. And it is working. It is a place full of living. They see my dad as suffering ailments but they also see him as happy, and fun loving and they are glad to know him and glad that his is there with them.

I know my problem is fear. fear of ending up locked in a cage. Fear of my father dieing and never having known me at all. I hope I get over it enough to continue to find ways to enjoy my fathers company before it's too late. They told me that he is moving to the 3rd floor--full nursing care. It's a huge step in the long decline. But he'll have more freedom they say. He can wander anywhere any time he likes. I just hope there will be kids.

Fathers Day

Gina, one of the women who work on Dad's floor at Springbrook, is also Kelly's sister. Kelly also works there, on another floor, 3 12-hour days a week. Gina is so in love with Dad. She says she sure wishes she could find a man like him. He takes his hat off at the dinner table. He is always courteous. He is always doing something to make her laugh. They still make him use the walker. He will pick it up and pretend it is a two fisted machine gun and rat-a-tat-tat a nurse when he is reprimanded. He dances and flirts with the ladies--always in the most respectful way. They feel sorry for him because his family has abandoned him. They deal with a lot of less than ideal patients. People one can understand not wanting to be with. The world is full of all kinds. I was blessed with one of the best. Gina can't for the life of her get over it. He's the most wonderful guy , why am I not there every day or at least every other?  I am putting words in Gina's mouth. David has told me that this sort of conversation is common however. I tell him they are right. I don't visit much. I tell him I stay away because it means the nurses will give him special treatment. I say this in jest--making light of the situation but still being truthful in my avoidance of broaching a difficult issue. A talent I learned from my dad.

I called him on Father's day. I wanted to go in. I told myself I was going in. I told myself I was going to call Gina to ask her what I could get him for a gift. I didn't. I stayed too busy with the horses and trimming bushes and then Taylor called and said she had a free hour and a half and could she come help with something. I said Dove needs more attention. Just what she wanted to hear fresh from a 3-4 hour Natural Horsemanship clinic with Roxie Pony who refused to moved in a circle period. Dove was very good and Taylor was very happy.

I went through all the motions, got a lot done, but did not out-run the guilt. That dragon nipped my heels with its flaming breath all day long. I finally stopped long enough to call at 7:PM. He didn't know who I was. I said, "Edna Leigh". That worked for a minute and then he wanted to know, "You say you're my sister?"  His sister, Edna Frances, has been dead 8 years. I never mention that fact anymore. I told him I was his daughter. That confused him a bit more, "Well anyway, it sure feels natural somehow to talk to you, seems good" 

"That's all that matters," I said jovially, "It sure must be a nuisance having to deal with memory loss like that," I added with sincere empathy.

"Oh it's miserable, it sure is."

I was so preoccupied with keeping my heels un-charred all day long that I forgot to call my son and wish him happy first fathers day.

The yard looks great. A bit empty, Laking colors.

Advice on Dreams Versus Reality

Someone was asking if other Alzheimer's patient caregivers had to deal with not being able to distinguish between dreams and reality and I offered this brief affirmation:

Oh boy do I remember the Dreams Versus reality scenario.

After a rough night of dreaming and Dads not being able to get back to  'now'  I'd have to smile reassuringly and explain that no such fight happened and give him a big hug,  tell him he was just dreaming and that I understood how amazingly real some dreams could be. It didn't always work. So, sometimes I had to admit to some outlandish spat and apologize so being so harsh and give him a big hug and we'd make up. Other times he felt like he needed to be forgiven for something he dreamed and was so sure really happened, then I would tell him I loved him and of course he was forgiven--and give him a big hug. Many days when he woke very agitated I would need to repeat this process every couple of hours--as he would forget we'd been through it. (One nice aspect--lots of chances for practicing ones responses)

On days like that I would have to remind myself that I could only do what I could do--and it was OK to call for help and or give up when I reached my limit.

Big hugs are always great medicine. Be sure to get some for yourself too!

Practical Issue

Taking Keys: Winter 2003

Something I Posted on an Alzheimer's forum that seemed to be useful to a woman in this position:

I would like to address Alzheimer’s and driving, since I suffered most over this issue with my Dad:

Driving is such an important thing for a man, especially an 83 year old man who has driven since he was 12 years old owned his own cars since high school and has never gotten a moving violation. It was all he had left after the POA and giving up living independently. I rode with him often; let him drive us to get groceries and whenever I had to make a short trip. I was devastated the first time he forgot the 'stop for school buses' rule and I had to react for him. He was always in denial about it--I guess because it didn't make sense to him either he would never accept that it happened. It is so very hard! But it is always a losing battle to argue with them--so very stressful on ones emotions. He was also speeding everywhere--way out of character. He would pull up to an intersection a few miles from home --he's lived in this area all his life--and say, "Now this looks really familiar . . . " but I would have to tell him which way to go. At this point I talked to the folks in the support group in our town and was told I had to take the car away. They said I was just kidding myself thinking I could save an accident every time from the passengers side of the car, and that it was only a matter of time before he hurt himself, me and, or someone else. The next day at the grocery store parking lot, watching the children run to catch up with their parents, darting around parked cars, and leaping curb stones. I knew they were right, at any moment he could forget something vital. I had him try to drive my car the next day. He couldn't figure out how to turn it on and sat there fumbling with the shifter and nobs and then finally sat still looking out the windshield and said he guessed he'd better not. Then I realized he had been driving on autopilot and anything new was just too much for him.

His doctor told me that he could write to the state and have Dad's license pulled. I knew he would continue to drive without it so I removed the car. One night it went "to the shop for repairs but was so far gone it would cost way too much and my brother was selling it for him." Creative story telling if you will.

Fallen Oak Tree: Slow death with Alzheimer's

     May 2004:

Along one of my favorite paths through the wood a young maple mercilessly bent by a burden of ice six years ago creates a twelve-foot tall arch overhead.  This tree has,  in a determined attempt to live, sent it's branches straight up to the sky forming what looks a bit like railings on a very long squirrel sized foot bridge.  Just a few feet away stands the broken remains of a mighty oak.  A tree that has stood forever beside a moss covered stone wall watching things freeze and thaw, bloom and fade,  grow and die.  It watched the fields become a woodland,  watched the harvests of hay fade into harvests of trees and the machines get bigger and louder.  With it's massive trunk split since the beginning of time it was not in danger of being cut down.  It's gnarled branches swept in twisting arches out and slowly upward as if it had all the time in the world and was in no hurry to leave the rich life of the forest floor,  where animals graze and hunt and humans wander past.

It was there to see the wild turkeys disappear and then return again and it lived to trace my years as I passed beneath it's limbs. It heard me giggle from my father’s shoulders and watched as I built a raft to float across the bog.  It listened to all the stories I imagined or read,  the endless details of my dreaming,  the sobs of my broken hearts,  my changing voices,  the voices of my friends,   and the voices of those I never knew.  It heard the names of everyone I've ever loved or despised and recorded all these things within the rings beneath it's bark.  It has reached far through time and it's roots run deep through the fertile ground.  It has lost many branches over the last decade.  Huge limbs have broken and left holes where the rain soaked deep into it's core--creating hollows where birds built their nests.

One of those moss covered limbs,  fifteen feet long with graceful stepped curves is now a jump on my cross country course. My two sons impressed me one day by hefting it onto their shoulders and moving it fifty or so feet, over the stone wall and through the under brush, to where I first began my jump course after the last tree harvest. That limb is at least thirty inches around on one end It must have weighed many hundreds of pounds.   

During the same ice storm that bowed the young maple over the path a smaller oak branch came down, pinning the maples spire to the ground.   Last week in the wind the largest half of the old oaks split trunk came crashing down.  I stepped onto it and climbed it's enormous elbow to look down into the remaining seven or eight feet of hollow trunk still standing.  What a treasure this would have been to discover as a child I thought. I would have hidden all my treasures inside that trunk.  It would have been my secret place.  I wouldn't have thought much about the living tree then,   or about things dying. I sat down on the broken end leaning against the tall stump and looked out across the wood,  out across the path where the last mighty limb lay dieing. It's graceful curves meandered across the trail and twelve feet into the under brush, a moss covered stream of bark.

It's too huge to move. The orchard manager who drives his tractor from the orchard past this old oak to his home around the corner will cut it up with his chain saw,  as if it were just something in his way.  I wished it could stay right where it is.  I could jump over it on horseback.  I could climb up and sit here and be eight years old again any time I want.  I could sit here and listen to all the stories and sounds of all those years seeping from the ends of the broken limb.  I looked at the limb for a long moment. I saw the leaf buds that would never open on the few shoots of tender new growth reaching up from the great carcass and I saw the beginning of death.  Death happens slowly to trees.

Sometimes death happens slowly to people too.  This old old tree was ever focused on living.  With it's hollow trunk and increasing brokenness it still took what strength it could muster and sent out new green shoots toward the sun and prepared leaf buds to open and drink in more life.  I never really thought about that tree until it lay there dieing,  sprawled out across my path.  And there I sat atop it, triumphant life above the fallen beast.  I took pleasure in remembering it's life,  the parts I witnessed and the things I imagined.  I thought of my father whose shoulders I rode through these trails,  from whom was passed the love of the woods and an appreciation for the natural world. 

My father is dying slowly like the oak tree,  his memories and skills breaking and falling away like dead branches,  irreparable,  scattered on the ground.  He is not focused on living.  He is ready to die.  At the end of each day he hopes he will awaken to find himself  "sailing out through the great beyond".  He says he will swoop down over our house in a flaming comet. He asks God every night to take him to heaven and every day he wakes and he tells me, "I guess God is not listening to me.  He doesn't want me either."  How many ways can I tell him that I do want him?  Why will he never hear me and believe?  I look at him and I see death.  Am I looking into a mirror?  Does he know that I am lying?  Does he also know that I desperately wish I was not telling a lie?  I am not good at caring for my dying father.  It's harder work than I imagined.  Maybe I should do the unthinkable and move him into a nursing home.  People there would know how to sit with him while he eats. I can't stand the noises he makes.  They would know how to listen to the heavy sighs,  the same words over and over,  how to answer the same questions again and again.  They would not care that they are invisible to him.  They would not have this long history of not having been seen by him. I can't fight the urge to not answer anymore.  I can't stop the searching for new ways to answer that will be remembered.  I can't help crossing the line into what feels like insanity and then running away. Maybe he wouldn't want to die if there were no one running away from him. I am selfish.  I want to do what feels best to me,  the right thing that will make it easy for me to be triumphant life above his grave one day finding pleasure in remembering his life,  his stories.  I want him to be full of life or to be gone.  None of this in between stuff.  It's messy.  I don't know how to comfort him. I can't. 

Every once in a while he remembers the car I have taken away.  I,  his evil captor with my  "damnable Psychology"  As he puts it, with my twisted stories of how he has "this Alzheimer’s",  and who also he reminds me, "knows perfectly well that I can drive a darn sight better than these stoops that go flying by doing fifty or better."  During those times he plans his escape. He says he will have a friend take him to find his car in the middle of the night and he will drive west to a far coast where I will not find him.  "There are lots of places to be between here and the west coast you know."  A glimpse of life,   tender shoots of new growth with their tiny leaf buds reaching toward the sun.  I don't know if they will ever open.