Monday, September 29, 2008
This isolation I saw is different, it is present whether others are with her or not, it has crept into her and pulled her away from the world she lived in, the world she connected with, the world she loved. Her new world is internal. It holds her old memories, having stolen her more recent ones. Her memories of her childhood, her young adult years and her marriage to my father. These memories, which are more vivid and reliable than her surroundings, keep her company in her isolation.
My attempts to pull her from this world for simple conversation or even to watch a movie were only minimally succesful. I gave up after a few attempts. The struggle too painful for her, for me. As a result my weekend was one of isolation as well. Not something I'm accustomed to.
Hurricane Kyle was supposed to arrive in Maine this weekend. It changed course and we were left with rain, steady and persistent. It reflected our weekend.
Saturday, September 27, 2008
Michelle's excitement whenever her grandfather arrived, her leaps into his lap, the shadow she became as she wound her way around his long legs, her insistence that he sit with her, that he was hers and the rest of us could fend for ourselves had faded for me. This note brought that back. What a lovely gift to receive, not just the memory but the ability to open my eyes and see history repeat itself with our grandchildren. To see the adoration in their eyes as they cling to their grandfather, to me.
When Michelle walks down the aisle of our church (in 29 days!), the same aisle I walked down, the same aisle my sister walked down and the same aisle my mother walked down, there will be a candle on the altar. In the flame of that candle will burn the memory of those we loved. No, not loved, love. Those we love who, even in their absence, remain with us.
Friday, September 26, 2008
I balance those words with my inability, no not inability, my unwillingness to leave the hospital early today when she needed me. She needed me and I could have gone to her, I would not have lost my job, in fact I didn't accomplish much after I knew she was alone. Alone and waiting. Waiting for me to help her. Because she wasn't hurt, she hadn't fallen, there was no real emergency I chose not to go to her. She was safe. I was selfish.
I should care about the debate and on some level I do, I am concerned about our future. But tonight it is my mother's future that consumes me and as I help her into bed, look into her eyes I see what I fear the most. I see that she knows. She knows on a deeper level than I can imagine that her future holds more time like today, time when she will need help, when she will have to rely on others even more than she does now. With all she has forgotten, I hope she'll forget that when she needed me today I wasn't here.
Wednesday, September 24, 2008
On his day off today he went to see my mother. By himself. Just to check on her. The man I've been married to for 34 years, this man who to this day when we are with my mother does not call her by name, simply looks at her and talks, went to check on her because he knew she was alone and that worried him. So he went to see her.
It's such a small thing, a visit. Time taken out of a day to be with someone. Say hello, how are you, share small talk. That's what my mother does now, small talk. When he arrived she was on the couch reading, so he stayed for a little while, gave her a few miniature candy bars from the cupboard then went home. No big deal, he told me.
She's still talking about it tonight, this 'no big deal'. This unexpected visit from her son-in-law in the middle of the day. His day. His day to spend however he wanted to spend it and he chose her. Chose her with candy (the fact that the candy was hers to begin with is irrelevant!).
While he was with her I was at a celebration. A celebration of patients who have overcome obstacles and won. Patients, people who fought to walk, to talk, to live. People who struggled. What they talked about was not how great it felt to win, to beat the odds, but how important the little things were and are. How they didn't do it alone. Couldn't sustain it alone still.
There weren't many dry eyes around the tables of that celebration today. Tears of joy, of thanks, tears of sympathy and even those of victory. For me, tonight, when my tears come, and they will, they will be a mix of all those things, all those emotions, but mostly they will be shed in thanks. Thanks for all the little things, the small things that might seem like no big deal, but in truth are everything.
Monday, September 22, 2008
One thing my sister and I are known for is laughter. We have a sense of humor that rivals many. Our mother told us once during a shopping trip that she never worried about being separated from us in a large store because all she had to do was wait a minute and our laughter would direct her to us. We come by our humor rightly, our parents raised us on theirs. Dry, spontaneous and quick with a comeback our father could crack the veneer of any serious occasion, and often did. Mom's humor, a bit more reserved, appears now at the most unexpected times, like when the paramedics asked if she knew who the President was (her answer a safe one..."Why? Don't you?" quickly followed by "He's in trouble!") or after looking at my new necklace, handmade in Africa..."you could probably send it back".
While there is still the spark of humor in her it has faded and she jokes with us less and less. I miss that. Conversations between my sister and I and even the family in general carry less laughter these days and of all the things I miss, our laughter is at the top of the list. Which brings me to my point today, the point of a ridiculous thought that brought with it laughter, rich strong 'church giggle' laughter.
Like her father before her, my mother loves sweets. Cookies, cake, pie, candy, the form irrelevant, she loves it all and we often find candy wrappers in the pockets of her sweater, jacket or slacks. Sweets bring her pleasure so we bring her sweets.
I bought a bag of candy corn, those syrupy sweet yellow, orange and white triangles that herald the arrival of fall and, I must confess, tempt me beyond reason. We ate them throughout the evening last night, passed the candy dish between us. (When I helped her to bed and returned to the dish I was embarrassed to see how little was left and pledged abstinence for myself for the next week to make up for the amount of sugar I ate in one sitting.)
The lights turned out I climbed the stairs to my old room with its small bed and noticed a piece of candy corn on the stairway landing. Thinking of the nightly toy pick up at our house I scooped it up and continued my climb. A few stairs up and another piece of candy, more stairs, more candy. Much like Hansel and Gretel I picked my way along the candy path to my mother's room where the last piece of candy rested on the threshold.
As I threw the candy in the wastebasket I couldn't help but smile, which led me to giggles, which led me to laughter. All by myself, in my little bed in my mother's house I held my sides and pictured the candy trail, the trail that led me to my mother's room. Blazing that trail I pictured a bunny in full Halloween regalia leaving candy corn droppings in his wake.
In the light of day this morning the Halloween Bunny wasn't as comical as it was the night before, but my memory of laughing about it, of the pure joy of the humor and the trail of those candy pieces surfaced throughout the day and made me aware of how fortunate we were and are to have the ability to laugh, the ability to still find humor. Even though we may have to dig deeper for it, we still seek it out and take comfort in it when it is found. I know we will laugh again, share those moments together when our mouths open and joy spills out, spills out and rises above us, carries through the air and helps our mother find us.
Sunday, September 21, 2008
This relationship, this intertwining of lives that mothers and daughters share runs deep among us, molds us, shapes us into the women we are and the women we will become. We open our mouths and our mother's words flow out, we look in the mirror and are surprised when our mother looks back at us, then turn to our daughters and hope they hold some understanding of the amazing people they are. Hope we have given enough to them so they will carry it forward, to their daughters as our mothers carried it to us.
I shared my story this weekend, my story of pain and loss, my story of the darkness of dementia, the fear my sister and I share with each other and with our daughters. I shared my story with writers who live their own version of this life, this loss and in the sharing of it lived once again with guilt and shame. Neither directed at my mother, both directed at me. At me and my relief of this weekend, this weekend 'off', this weekend away from my mother's house, her photo albums and her words, the limited vocabulary that is hers now. The vocabulary that shrinks each day, word by word, letter by letter.
From the windows that open on Deer Isle, the windows that open to the sea and salt air, the view is breathtaking. From the window that opens into me, opens to the guilt and shame, the view isn't so great.
Wednesday, September 17, 2008
Her gift to me is time. Time to slow my pace, time to remove myself from the frenetic pace and responsibilities that have become my life and sit with her as she recounts her time, her pace, her life. It is easy to see this gift on this day.
I see her gift and I am grateful for it, today. My challenge now is to keep her gift in sight when I am there, when it is my turn again to pack my bag, leave my home and family and sit at her house and hear the same stories, look at the same pictures and want to go home.
Tuesday, September 16, 2008
My joys come in all shapes, sizes, colors, sound and time. From the obvious, my grandchildren as they tumble out the door of their bedroom into my arms, to the less obvious, morning air my husband and I call "Idaho mornings", a morning with air so crisp and clean it begs to be touched, to be walked in, to be inhaled. Air we shared together on an Anniversary trip out west that we recall with joy. Memories that surface and let us relive the intensity of that journey.
There is joy in my days, though at times I have to search for it, move all the junk aside and purposely seek it. Sometimes I find it readily and on those days I hold it close and move through the work of the day, or night with a lighter burden. Other days it takes longer to find, maybe not find but recognize. I'm working on the recognition part.
I treasure these moments, moments when I recognize the beauty of my life, the good fortune I have, the family I have, the friends I have and realize that it has become easier for me to acknowledge what is meaningful, what I value, what I hold most dear. It could be my age, our 50s are supposed to bring us wisdom afterall, and maybe that's it, at least part of it. I think it has more to do with loss. With having something disappear, something I loved, something I still do love. Not something...someone. Little pockets of joy can brighten your whole day.
Sunday, September 14, 2008
The lead story in the Maine Sunday Telegram today tells the tale of this child and how a sniper's bullet shattered her skull and left such damage that after multiple surgeries in Iraq she was left with a dangerously unprotected brain. A situation that could end her life with a bump to the head.
This little girl now rests in our hospital, my hospital, under the expert care of two of the finest surgeons in Maine. Knowing their work as I do I suggest that they stand out farther than just Maine in their expertise, skill and dedication to their patients. And for the hospital itself, the donation of time, services and compassion are unsurpassed.
With that being said, as the Director of a mission team and participant for many years in medical mission work I have to question the long lasting results of bringing patients from other areas of the world to our hospitals for treatment. How much better is it to bring our services to them? To bring our skills, our equipment, our physicians and nurses and therapists to their hospitals to teach. To train the doctors and nurses there to care for their people and let them train the next generation of health care workers how to replace the missing piece of a child's skull, how to surgically repair a hole between the chambers of a heart (a relatively common birth defect), how to repair the damage of birth, accident or war.
While I commend my hospital and its physicians for the work they are doing, the restoring of this child, I grieve for the others who will not have access to the privilege of health care. Those who will rely on the hospitals, physicians and nurses of their country who may not have access to the education that will allow them to provide this level of care. I grieve for the doctors and nurses who know the skills exist but are at a loss to attain them through accident of where they exist in the world, the political walls that prevent education.
I look at the pictures in the paper today and while I celebrate the success of this child, of this family and their eventual reunion I can't help but feel overwhleming sadness at the missed opportunity for even greater successes if our physicians had traveled to an area in the world where they could have shared their knowledge and skill with others in their profession. Shared through teaching many who could then teach many more who could then teach many more and on and on, in exponential growth. Think then of the numbers of children and adults who would be saved. Give someone a fish and they eat for a day. Teach someone to fish and they eat for a lifetime.
Saturday, September 13, 2008
Today she focused on her photographs. I marvel at the fact that she has almost all of her pictures in albums. Hundreds of them in dozens of albums. It doesn't matter that you go from her childhood to my grandchildren with the flip of a page, at least they are in albums. I never know which picture will capture her attention, Walter spiking the punch at an Anniversary party ("and he didn't drink"), Barbara and Thelma at the piano ("something was funny") or her parents ("wasn't my father handsome?"). Today it was my son ("wasn't he cute?"). I cannot look at the picture again. His smile reaching out from the page, a smile I haven't seen in a while now, now that he's chosen to to live his life without us. Chosen to separate from us. Her gift to me is that she doesn't ask where he is, how he is, why he is not here when all her other grandchildren and great grandchildren share her days. Somehow, on some level she must know not to ask, not to touch that pain. I don't know what I would say if she did ask, how to explain to her what I don't understand myself.
Today is filled with my attempts to hold on to people and times that are unable to be held. People move in their lives, at their own pace. A pace I am out of step with, either just ahead or just behind. A look forward, I lose. A look back, I've lost. If I had time I would simply stop looking and find my own pace, my own timing. But I don't have time, not today. Today I have my mother's time and with that time we look to the past, a past that is filled with people and places and events and joy and tears and love. It could be alot worse.
Friday, September 12, 2008
It occurs to me that through this blog, through this internet 'outing' of my story, I inadvertently exposed my family to the public, left the windowshades up in our living room so everyone can look in and watch our life without our knowledge, without permission. But I granted permission, without consent of my mother or my family I granted permission for the world to watch us lose her. I'm not sure how I feel about that. Selfish? Probably. My mother knows nothing of my public exposure of her. Is this yet another betrayal?
While I wonder how many more ways I will find to betray my mother I read your posts, your e-mails, listen to your voice mails (I've saved several and listen to them over and over) and remind myself that what you say isn't how sorry you feel for us, what a shame it is that this has happened to my mother, our family, but what it was like when it happened to you, what scares you as you look into your future and see yourselves walking the path we now walk. You talk to me of comfort, of the burden shared, of the relief that the emotions, the fears and worries you feel are common among those who take this journey. What I hear from you is "don't stop".
I did not intend to lead the way. This is not a sojourn I volunteered for and would shed it immediately if given the choice. I don't particularly admire the way I handle things or relish the thought of more to come, the thought that it will get worse, that we will lose even more of our mother before we come to the end of this. Those thoughts are too big a burden, too much to hold through the busy days of work faced with the problems of health care in crisis or in these quiet hours of the weekends at my mother's house. But while I did not choose this, it is mine. Mine to handle, to hold. I have no choice. The sheer magnitude of that thought alone both bolsters and weakens me. Raises me up and brings me to my knees.
And so we walk this together. My family now, others before us, more to follow. We hope and we pray and we lean on each other and learn from each other. We hold fast to the memories we have knowing they may be soon lost or like others, long held. But either way we walk together with strength and dignity, humor and compassion and along the way shed a multitude of tears that sometimes cling to our throats, sometimes flow freely in the quiet of the night or worse yet, appear at inopportune moments. Regardless of when they surface, my tears will continue, will fall when the need is there, when the loss becomes too large. In that way I will honor my mother not betray her.
Wednesday, September 10, 2008
They listened in the hospital cafeteria when the cashier couldn't remember who co-starred with Gene Kelly in the movie Singing In the Rain. They shook their heads at the guesses: Judy Garland, Julie Andrews, Doris Day, and agreed with me that even though I didn't know the answer, I knew those were wrong. My mother grew up with the movies. She and her friends went to the theater every week and pined for the greats, Nelson Eddy, Betty Davis, Clark Gable. Penny and I joked that our husbands would have to pass a Gone With the Wind trivia test before we would be allowed to marry them. My father agreed to name me Bonnie but drew the line at Bonnie Blue. (Thanks, Dad!) Melanie was choice number two. I was almost a teenager before I watched the movie and discovered I was named for a spoiled child who died at the age of four. Probably a good choice, I'm no Melanie.
And so they walked with me then, up to my office, and held my hand as I dialed Mom's number and asked the question so I could put my mind at ease. Solve one problem that was simple. One problem that didn't involve the technicalities of health care or the hospital or the complexity of meeting the needs of critically ill patients while balancing the business side of the work we do. One that involved nothing more than the name of an actress.
I think it was only my sister's hand I felt in mine after I hung up the phone and googled Singing In the Rain....it was Debbie Reynolds.
Tuesday, September 9, 2008
We celebrate a milestone in our family. Our grandson Brandon has turned six and so we celebrate in the usual cake and ice cream way with our off key voices raised to him and his baby sister mesmerized by the candles. We celebrate with pizza for supper, his half eaten on his plate so he can sit near his presents, ready, anxious. We take our celebration to my mother's house, to her dining room with the butterflies on the wallpaper, the plates with the names and pictures in bright colors, all places of our father's journeys, business trips where he thought of us, of her and brought her these china memories.
With less than three weeks to their wedding Joel and Kelley come to share Brandon's time, to be part of his day. They stand with us and sing and as I watch my nephew he becomes the six year old with Osh Kosh overalls and matchbox cars in his pockets. The memory visceral. We tell Kelley the story of another birthday, a birthday with a Dukes of Hazard cake on this table. Her soon to be cousin Lacey initiates her into the family ice cream scooping debate and Lacey's son and daughter watch her, watch us and learn more about who we are, who they are and where it all fits.
And through it all there is music, not the radio, not an album from the collection stored in the 'hi-fi', but real music from the piano, a player piano that requires a player to pump the pedals that scroll the music that moves the keys. The kids dance, I sing the words that are printed along the scroll and Mom's feet tap without hesitation to the notes. I look at the pictures that rest on top of the upright and there is our father, at the piano with us.
Tonight it is my sister's turn for the memories of our family to swirl through the house for her. Her turn to hear the echoes of our childhood and allow them to lull her to sleep. Her turn to be surrounded by the silence that will come after the presents are opened, after the candles are blown out, after the ice cream has melted into the frosting. Hopefully, with the echoes stirred the silence won't be as strong and she will sleep.
Monday, September 8, 2008
But we have good news today. There should be an opening in Assisted Living within a month. Maybe sooner. Maybe before the weddings. Maybe between them. The translation of that is that another family will soon suffer the agony of moving their loved one to the next level of care, a Nursing Home or maybe heaven? How do we put that aside and think of ourselves and our desire to return to 'normal'? Is there normal once dementia arrives?
One of my staff members asked me today if I was tired, she said I looked tired. She quickly said she didn't mean to be uncomplimentary seeing as I'm the boss, but she doesn't usually see me look tired like this. I smiled (only a smile, I was afraid if I laughed it would become maniacal and never stop) and told her yeah, I was a little tired.
So I am at home tonight, my husband sound asleep in our room, my grandchildren tucked into bed, my daughter downstairs on the phone and our house is quiet. Not like the quiet of my mother's house, this quiet is a content quiet, a quiet that predicts the preparation for the next day at work, at school, at daycare. The quiet at my mother's house is there because the sound has been stolen. I am terrified of silence.
Sunday, September 7, 2008
So tonight I have made my mother feel bad. I have forced her to come face to face with her dementia, and it is ugly. I can't think of anything worse I could do in the course of a day. I am willing to bet I am not alone, that there are many daughters and sons out there who have done the same and are as ashamed of their behavior as I am. In this instance, there is no safety in numbers, no assurance that if all these other people have done the same thing it can't be that bad, it must be expected. I am willing to bet the literature labels it a 'normal stress response'. Trust me, there is nothing normal about it.
In October my sister and I will each gain a family member. For her, a daughter-in-law, for me a son-in-law. These weddings come with all the joy and fanfare befitting the expansion of our family. For Penny the addition of Kelley a joyous occasion, for us the welcome of Jay no less joyous but truly a technicality because he long ago became one of our own. Regardless of who is joining which segment of our family, both events are formal affairs with all the trimmings. Trimmings that require details and errands and follow ups and appointments and last minute work. What can not wait until the last minute is a new dress for our mother, so today we shopped.
We knew we were in trouble as soon as we walked into the store and she said she had to sit down. A chair near the dressing room came in handy...handy for her as my sister and I walked back and forth with dress selections. A selection made it was into the dressing room, again no easy task but once accomplished I led our mother out to my sister. In the mirror I saw my mother, not as she is now, but as she was. Whole. Beautiful. Draped in dusty rose chiffon that encircled her waist and streamed to the floor. My sister saw her, too and we swallowed the lumps in our throats together as we faced all that we have lost.
My sister stood behind our mother, looked in the mirror at her and reminded her that she always used to say that one day she wanted a dress that had long sheer sleeves. "I did?" She faded from us again as she moved back to the chair in her new dress.
These are the moments when the world collapses for me, the moments when there is no escape from the reality of the disease, the course of our path that steals her from us. We have watched others travel this journey, some with grace, others with anger, and try to find our way. We rely on the love and friendship of our families, our husbands and children, our in-laws and lifetime friends and can't imagine how anyone lives this without faith. We cherish the moments we have her with us, the moments like the one today when we saw her in the mirror and steal ourselves against the knowledge that these moments have become fewer and will become fewer still.
But in October Grammy Lois will have her moment in her new dress with the sheer sleeves and she will walk down the aisle at the weddings of her grandchildren and everyone will know that our family is there, sustained by our love for each other and our love for her and we will welcome our new family members with open arms and create new memories together.
Saturday, September 6, 2008
My sister and I share this bed now. Not on the same nights, but it is shared space. Our space, sacred space that we sleep in with one ear open, one ear trained on our mother's room just as we did when our children were babies. An ear that will wake us to sound, any sound. A cough, a moan, our name. The sound we fear the most, the sound of her falling. We have not heard that sound but we know it exists.
If there is an up side to this disease, this silent erosion of a person, the erasure of our mother, it is that unpleasant events are soon forgotten. The five hours on the hardwood floor of her bedroom, the fall the next day that blackened her eyes, her face, her arms, her hips. The month of July spent in the hospital, Rehab and then the Nursing Home. The fall that brought us, my sister and I, back to this house, to my old room, this twin bed.
We are back but we are not alone. Much of the village that raised us, our children and now our granchildren still stands with us as we walk together. Walk as other families walk, slowly, gently toward the quiet. The quiet that steals from us. The quiet that removes one word at a time from our mother. The quiet we are helpless against.
It is quiet in my mother's house this morning. Quiet that contrasts sharply with the sounds of my house, my husband awake long before the rest of us, our grandson gliding into his mornings with sweet smiles and a gentle voice, our granddaughter slamming into hers with her mother's dread of morning clearly embedded in her genes and our daughter following them down the stairs, eyes almost open as she referees the start of the day.
If I relish this quiet, take time and wrap myself into it, is it a betrayal? Have I become the enemy's consort? Have I sided with the thief who steals my mother from us? These are the thoughts the quiet allows to surface. Thoughts that remain hidden behind the noise of the day, the noise of life, the noise of the creation of memories.
Hurricane Hanna will arrive today. I hope she is loud.
Friday, September 5, 2008
Memories like that are precious to me now. The more common the better. Somehow it is those simple moments, those times with my mother and father, my sister, our family friends, all those simple events that make up a life. Those memories we worked so hard to create and to hold onto. Those memories now live with me but elude my mother. They have escaped her grasp and vanished into the depths of dementia. Daily I am aware of another piece of my past, another piece of my family that has disappeared and I grieve for the parts of my family that no longer exist.
At the other end of the day I work to create memories with my grandchildren, these most amazing children who live with us and enthrall me with their simple presence, their mere existence causes me to marvel at the wonders of the world, the universe, the miracle of their lives.
I live the sandwich. I am the peanut butter and jelly, the egg salad and sandwich spread. My mother is one slice of bread and my children and granchildren are the other. My husband rests somewhere in between, with me.