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I'LL NEVER SAY GOODBY
The heartbreak of Dementia
WHEN YOU BECOME A MOTHER YOU GIVE YOUR HEART AWAY, AND IT NEVER BEATS FOR YOU AGAIN.
She sits alone, her frail form dwarfed by the over-sized chair. Her shoulders are slumped and she leans precariously to one side. Her gray head has dropped forward and her softly folded chin rests between collar bone and breast. Her eyes are closed in sleep and she makes sounds that are words only in her mind. Her name is Stella, but if she knew where and when she was, she would tell you to call her Maxine.
"...SOMETIMES DREAMS ARE WISER THAN WAKING." Black Elk, Oglala Sioux, ca. 1932
September 15, 2000
I dreamt that Mother died. It was after the funeral and I was in her house, surrounded by family members. I smiled as I walked past them all on my way to the living room, where I sat down crossed legged on the floor, facing the sliding glass doors that led to the patio. I sat there and looked at all the tiny nick- knacks that hung on the glass by small suction cup hooks. Small, silly garage sale finds she considered worthy of her favor for some reason. Not unlike the people scattered through the days of her life. Little treasures... her life was made up of little treasures, each one valuable simply because she found pleasure in it.
Then I wept, my heart aching for the treasure I had lost.
The house in my dream, the patio doors and the nick- knacks, were all creations of my dream, symbolic of my mothers fondness for collecting things she thought were pretty or valuable. My mother had not lived in a house of her own for over two years. She was in a nursing home during the last two years of her life...not because we wanted her there, but because of family circumstances at the time, there was no alternative.
Those two years were agonizing and heart wrenching. At the end of each visit, she would ask to go with me; and I would have to tell her that she needed to stay because someone else was coming to see her. It was a lie that lived only moments for her, but for me it lived on as I sat in my car and cried...and swore at the unfairness of life.
I watch her...this December woman, and remember all the seasons that have come and gone. My mind fills with images...snapshots of time...bits and pieces of a life. I see a happy young woman in the 40's, anticipating her future. I see the curls in her dark hair, and the light in her eyes when she laughs - a pretty, slender, feisty girl, who never meets a stranger; and who would rather dance than eat. She dreams of being Ginger Rogers. I see the joy she experiences in the family she treasures, and I see her gentle spirit become a lioness to protect them. I see her so often give herself away to rescue a fallen soul, and I see her sacrifice everyday to keep her children safe; and too soon I see the times her heart is shattered and the light beginning to dim in her eyes. I see her struggle to understand the collapse of her happy world, and the loneliness that enters her heart. Still, even in those times I see her strength as she tries to carry the weight of a life far too heavy for her delicate soul. Then year by year I see her slip away from the present and step back to happier times - to the people she loved when she was young and happy.
As I sit and watch this disappearig woman, I wonder at the miracle of life, and the blessings that can be found in tragedy. My December woman has found the land of Once Upon A Time, and in her mind, even as she sits sleeping, she is herself once more - the young woman with curls in her dark hair, dancing with the man she loves, and the light of her soul shining from her eyes as she laughs.
I watch her with such love and longing, that I hardly know where she ends and I begin. All I can do is cry - for this woman is my mother.
Thirty two days later. October 17, 2000
My mother is dying. How did this time come so soon? I am not ready for her go! How do I give up the light that shines in her eyes when she looks at me? How do I give up the smile she gifts because she is happy to see me? How do I give up the feel of her small frail hand in mine as we sit and talk about loved ones who have passed on as though they are about life as usual? I want to know that I can fix her hair, paint her nails, and bring her little gifts tomorrow, and the next day, and the next...
I want to scream in protest...I want to take her in my arms as I would a child - hold her close to my heart, and whisper words of comfort as I rock in time to the memory of long-ago lullabies. But I can't because of all the tubes; so I just hold her hand, smooth her hair, and caress her forehead...tell her things I'm not sure she hears or understands. I kiss her, and believe that my love for her seeps through into that other place that holds her in silence. I pray for a miracle - I pray for release - but mostly I just cry out to God in wordless agony, not knowing what to pray for, except for Him to notice her...my mother.
He knew she was there all the time; but I wanted her for myself...whole, the way she used to be. I wanted life to rewind and undo what had been done, so I would not hurt.
Love is often a selfish thing, blinding us to it's ultimate fulfillment
MY MOTHERS LEGACY
This humble effort to honor my mother on Mothers Day is still more about me than her, but then as I said earlier, it is often hard to distinguish where I begin and she ends. There is a special bond - connection - between mothers and daughters. Even in the worst of relationships.
My mother had two children -both girls. I am the oldest by four years. My experience with my mother is different in some ways than that of my sister, yet we shared a similar relationship with her, and we both lived in that unique and mystical connection to her; so what I have written could be my sisters' words as well.
I discovered over the years, and through the loss of my mother, how deep and profound the bond that connected us is, and the strength it possess. It is a bond that survives the worst times in our relationship - the rubble of anger, the pain of disappointments, and the despair of rejection. I have and will always love my mother, in-spite of her short comings, her failures, and her mistakes.
My mother was not perfect, but she was dedicated,even after mental illness robbed her of the ability to be the mother that her heart had demanded her to be. There were some hard times, and I am ashamed to say that I failed her in many ways, because I could not understand that horrible place that had claimed her mind. But the bond we shared, overcame the moments of insanity ( we both experienced); and our love for each other forgave and healed every hurt. I never wished for another mother. She was always at the center of my heart, the voice in my head, and the vision I had of myself. Even when I hated her - I adored her. She was the person I needed most to approve of me, and the only person I knew - without a doubt - who would always love me unconditionally.
I am now experiencing that unique and mystical bond with my daughter. The following is a personal note I sent to my daughter for her birthday, along with a little gold flip flop charm. I wanted to share with her the ways in which we will always be part of each other; and let her know that this special connection and unity is a gift...a gift that will not fade with time, but will only grow stronger over the years.
"This little charm reminds me of you...cute, feminine, comfortable, and unpretentious. It also reminds me of our relationship , and the similarities we share."
"...When we are little girls we play dress up in our mothers clothes and shoes. When we are grown up we find ourselves living in them. Not literally, but in so many ways we become our mothers. We take her with us when we travel our own lives. Our personalities, bodies, character, mannerisms, always reflect something of the woman who came before us. A wise woman will build on the positive things, and somehow overcome the negative. You my daughter, are a wise woman."
"I look at my hands and feet and I see my mother. I look at your hands and feet and I see me."
LESSONS IN LOVE
My mother instilled in me a reverence for God, although we we did not belong to any particular church, and seldom attended church services. But she taught me what I needed to know, and demonstrated that reverence in her life. The "golden rule," was not just a nice saying, but something to be lived. She taught me that it is more blessed to give than to receive, not by reading to me from a book, but by opening her home to those needing a place to stay, or a place to be safe...by feeding someone who was hungry, and by sharing what little she had, and not asking more of life than she needed. She taught me how to be a woman, a wife, and a mother, by the way she filled those positions. The way she mothered helped me to see the awesome responsibilities in being a mother, the extent to which a mother must be willing to sacrifice, and the depth of love she must possess in order to do all those things.
Although my mother has passed from this life she is still with me. Each morning as I slip on my shoes, I see my mothers feet. When I reach out to some task, or to comfort someone, I see my mothers hands; and when I look into the mirror - more and more I see my mothers face. I thank God for these visual connections, and reminders. Over the years I have come to realize that I am not just my mothers daughter - I am her legacy.
And my daughter is mine.
Mother, this dream is for you, with love always
OTHER PLACES TO GO FOR MORE INFORMATION
(1) Dealing With Dementia http://www.ncpamd.com/dementia.htm