I feel myself changing with every passing day. I feel myself slipping away, and know I will be forever changed by these events that I have no control over, yet am responsible for…being held accountable for.
I don’t want to be this person anymore. The person who has to take care of this. The person who has to put my father in a nursing home. Who has to clean him. Who has to lift him from a wheelchair to the toilet and back again. I don’t want to be the person who tells him over and over that he is sick, that he is never going home again. Who asks, “Do you understand what I have said? Will you remember what I have told you?” And to look into hollow eyes, eyes that are counting on me to make it alright…again.
I don’t want to be this person anymore. The person who has to take care of this. The person who has to keep telling my mother that she has Alzheimer’s, and that it is getting worse and she will never get better. Who has to take her home, car, and independence away from her. Who has to take her to court to establish guardianship over her. Who has to figure out where her money is and how she will live the rest of her life. Who says, “You have to let me help you now. You can no longer live on your own.” Only to be yelled at and told to go to hell…everyday.
I don’t want to be this person anymore. The person who has to take care of this. I think about staying in bed in order to avoid dealing with it all. About not answering the phone when it rings. About not taking care of them anymore. About running away from home. But, everyone is counting on me. And, it feels like even God is watching me.
Yet, even under the watchful gaze, the loneliness of the experience is inexplicable…complicated…numbing…opaque. Sometimes I don’t even feel I have the strength to reach out and make contact, even when I know it would ultimately help me, save me. I buried my face in my husband’s neck tonight, smelling the shaving cream on his skin, feeling the warmth of his skin, listening to him breathing. I shut my eyes as tight as I could, until all I could see was black rectangle with a lighted aura. An escape route…but only for that brief moment. The phone rang. And, it started again. “Mom, Dad has not disappeared. He is in the nursing home. Yes, you saw him today, I took you to see him this afternoon. I'm sorry you don’t remember, but he is OK. No, please, don't cry...” I don’t want to be this person anymore. The person who has to take care of this. Is God watching me?
Wednesday, December 3, 2008
Is God watching me?
I have difficulty thinking about my mother's situation without thinking about the last years of my father's life. Her Alzheimer's meant that I had to take on the responsibility for his life...mostly against both of their wills. (This was during the angry years of her Alzheimer's progression, so everything was a battle that left me with scars and her unaware of anything.) The following reflects my feelings last winter and spring. Loneliness...a consistent part of my experience. And, a constant internal litany of questions, "Did I do all I should have? Did I step in soon enough? What else should I have done?..."
Wednesday, November 19, 2008
Forever the bearer of bad news
The caller ID shows that it is her calling again. The fifth time in the last 1/2 hour. Sometimes I answer, sometimes I ignore it...but, regardless, I have a sinking feeling. My mother doesn't remember that my father is dead, just that he is gone. She calls me to find out if I have heard from him, if I have news about him, if she can see him...if he has left her, and do I think she can get him back. Sometimes she'll sort of remember, "Is he one of the people who died recently?" But, that's rare.
My approach from the beginning of this phase of her disease was to follow the path of least resistance. For example, if she told me she hated where she was living, I'd tell her that I understood and that I'd be over in the morning to talk about it. By morning, the need to talk it over had faded. But, when it came to my father's death, the path of least resistance was unacceptable to me. My response to all of her questions about him is always the same -- 5 to 10 times a day, every day of the week -- "Do you remember that he died last June? All of our family came to pay their respects. You have the flag presented to you at Fort Logan in your glass cabinet..."
Forever the bearer of this devastating news, I listen as she relives his death over and over again. And in her reliving, I feel my own numbness slowly enveloping me...replacing my grief with an emptiness that's worse than the grief. "I'm so sorry, Mom. Is there something I can do for you?" But, I know there isn't.
As I type this, I see her name come up again on the caller ID. From the other room, I hear my husband answer the phone. Silence. Then, "Yes, do you remember that he died last June?..."
My approach from the beginning of this phase of her disease was to follow the path of least resistance. For example, if she told me she hated where she was living, I'd tell her that I understood and that I'd be over in the morning to talk about it. By morning, the need to talk it over had faded. But, when it came to my father's death, the path of least resistance was unacceptable to me. My response to all of her questions about him is always the same -- 5 to 10 times a day, every day of the week -- "Do you remember that he died last June? All of our family came to pay their respects. You have the flag presented to you at Fort Logan in your glass cabinet..."
Forever the bearer of this devastating news, I listen as she relives his death over and over again. And in her reliving, I feel my own numbness slowly enveloping me...replacing my grief with an emptiness that's worse than the grief. "I'm so sorry, Mom. Is there something I can do for you?" But, I know there isn't.
As I type this, I see her name come up again on the caller ID. From the other room, I hear my husband answer the phone. Silence. Then, "Yes, do you remember that he died last June?..."
Wednesday, October 29, 2008
Not alone, but alone
I'm starting with an acknowledgment that I am not alone in my attempt to gently navigate through an alternative reality brought on by Alzheimer's. Over the last few years, I've met countless people who are caregivers to a parent stricken with this disease. It is helpful to know that I am not alone...yet, I am.
I am an only child, and am solely responsible for the care and well-being of my mother. Up until four months ago, I was also responsible for my ailing father. His death in June changed everything. For the previous year I had been almost exclusively focused on his failing health. I was well aware that my mother's Alzheimer's was progressing, but my father's needs were complicated, immediate, and time-delimited (he died of lung cancer). After my father died I noticed -- was available to notice -- my mother's memory of much of our lives together as a family dissolved. Maybe it was because of my father's death that it seemed to happen so quickly.
A few days after his death, I was alone with her in her apartment in the assisted living facility. I was relating a story that a dear friend had shared with me about my father after hearing of his death. I hadn't cried in front of her at all, in my vigilant attempt to protect her and to quickly "normalize" her environment. But, as I shared my friend's story, I was overcome and finished the telling while looking at my lap. When done, in that moment, I knew that this wonderful story about my father's gentle spirit would illuminate her foggy existence long enough for her to connect with me. Tears running down my face, I looked at her...no emotion, no acknowledgment, no connection.
I was alone.
Although I am in community with other's who have similar stories, each of our experiences are unique and personal. Many of us are lucky enough to have supportive spouses, children, and friends...I know I am. Yet, it is a lonely experience as we daily mourn the version of a life that we shared with our parent. I lost my father, and -- in a way -- lost my mother.
I wonder if she feels alone too.
I am an only child, and am solely responsible for the care and well-being of my mother. Up until four months ago, I was also responsible for my ailing father. His death in June changed everything. For the previous year I had been almost exclusively focused on his failing health. I was well aware that my mother's Alzheimer's was progressing, but my father's needs were complicated, immediate, and time-delimited (he died of lung cancer). After my father died I noticed -- was available to notice -- my mother's memory of much of our lives together as a family dissolved. Maybe it was because of my father's death that it seemed to happen so quickly.
A few days after his death, I was alone with her in her apartment in the assisted living facility. I was relating a story that a dear friend had shared with me about my father after hearing of his death. I hadn't cried in front of her at all, in my vigilant attempt to protect her and to quickly "normalize" her environment. But, as I shared my friend's story, I was overcome and finished the telling while looking at my lap. When done, in that moment, I knew that this wonderful story about my father's gentle spirit would illuminate her foggy existence long enough for her to connect with me. Tears running down my face, I looked at her...no emotion, no acknowledgment, no connection.
I was alone.
Although I am in community with other's who have similar stories, each of our experiences are unique and personal. Many of us are lucky enough to have supportive spouses, children, and friends...I know I am. Yet, it is a lonely experience as we daily mourn the version of a life that we shared with our parent. I lost my father, and -- in a way -- lost my mother.
I wonder if she feels alone too.
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