Avoiding humiliation is the core of tragedy and comedy.~John Guare
Do I laugh at the absurdity of the situation, or cry at the unspeakable sadness?
Tuesday, August 11, 2009
Hanging on
Avoiding humiliation is the core of tragedy and comedy.~John Guare
Do I laugh at the absurdity of the situation, or cry at the unspeakable sadness?
Sunday, February 15, 2009
Hello, Operator
Conversation should touch everything,but should concentrate itself on nothing
~Oscar Wilde
~Oscar Wilde
I spoke to Daddy on the phone yesterday. Weird, but in a nice way.
I called there accidentally, thinking I had dialed my brother's house. Not too unusual since both he and my parents have the same phone exchange. When my brother's girlfriend answered the phone and told me he was in the shower, I wasn't surprised. When she asked if I wanted to speak to my father I was floored.
It turns out that I had inadvertently had called my parents' house. My brother was having plumbing issues, so he was showering at Mom & Dad's. Mother was at church. Daddy was sitting there when she answered, so I talked to him on the phone for a bit.
I haven't spoken to him on the phone in, quite literally, years. Above and beyond the Alzheimer's, he is as deaf as a stump. He had a hearing aide for a while, but it broke and hasn't been replaced. That's another whole story. Suffice to say, this was the first phone conversation we have had in longer than I can remember.
What amused me is that I am not hearing well, either. I've had cedar fever allergies that morphed into a raging ear infection, complete with fluid behind my eardrums. I can't hear out of my left ear for love or money, and only a bit out of my right ear.
So we chatted, mostly about nothing. He was having a snack before dinner, and when I asked what he was going to have for dinner he told me "Cheese Doodles". I suggested that something more would most likely be served, and he answered that he didn't know about that, since no one had told him anything about more food. I told him I was home baking a cake, and he asked me to bring him a piece. He asked where I was living, and when he heard I was 1600 miles away he said, "Well, I guess you won't be here tonight, then". Marvelous! A glimpse of Daddy's humor, not quite lost yet.
It was fun for both of us, and it made me happy. Some days are good.
I called there accidentally, thinking I had dialed my brother's house. Not too unusual since both he and my parents have the same phone exchange. When my brother's girlfriend answered the phone and told me he was in the shower, I wasn't surprised. When she asked if I wanted to speak to my father I was floored.
It turns out that I had inadvertently had called my parents' house. My brother was having plumbing issues, so he was showering at Mom & Dad's. Mother was at church. Daddy was sitting there when she answered, so I talked to him on the phone for a bit.
I haven't spoken to him on the phone in, quite literally, years. Above and beyond the Alzheimer's, he is as deaf as a stump. He had a hearing aide for a while, but it broke and hasn't been replaced. That's another whole story. Suffice to say, this was the first phone conversation we have had in longer than I can remember.
What amused me is that I am not hearing well, either. I've had cedar fever allergies that morphed into a raging ear infection, complete with fluid behind my eardrums. I can't hear out of my left ear for love or money, and only a bit out of my right ear.
So we chatted, mostly about nothing. He was having a snack before dinner, and when I asked what he was going to have for dinner he told me "Cheese Doodles". I suggested that something more would most likely be served, and he answered that he didn't know about that, since no one had told him anything about more food. I told him I was home baking a cake, and he asked me to bring him a piece. He asked where I was living, and when he heard I was 1600 miles away he said, "Well, I guess you won't be here tonight, then". Marvelous! A glimpse of Daddy's humor, not quite lost yet.
It was fun for both of us, and it made me happy. Some days are good.
Sunday, January 25, 2009
Preparing
A man's dying is more the survivors' affair than his own.~Thomas Mann
Daddy is dying.
Alzheimer's is called "The Long Goodbye" and with good reason. We have been saying our goodbyes, in various fashions, for years now
I was having a conversation with my friend, a sister of my soul, the other day. She was startled when I told her that I really don't ever want to return again to my "home" state. She knew my Christmas trip was distressing. but thought for sure that I would want to see my father again before he dies.
She doesn't/can't understand that Daddy is already dead for me. I have already said goodbye to him. That his body lingers has little or no meaning for me. This is not cruel, nor callous, nor unfeeling. On the contrary, my heart is broken.
The reality is that the months and months I spent with him last year were when I said goodbye to my dad. I spent good, solid, real time with him. He knew me, and we shared so many moments, and made so many memories. It is time and memories that I will be eternally grateful for.
His poor, frail body remains. He is no longer "living" in any meaningful sense of the word. He exists. His heart pumps, his lungs expand and contract. His mind is lost within the tangles and plaques of this horrid disease.
I will be heartbroken when his body finally gives up, but............I am ready.
Alzheimer's is called "The Long Goodbye" and with good reason. We have been saying our goodbyes, in various fashions, for years now
I was having a conversation with my friend, a sister of my soul, the other day. She was startled when I told her that I really don't ever want to return again to my "home" state. She knew my Christmas trip was distressing. but thought for sure that I would want to see my father again before he dies.
She doesn't/can't understand that Daddy is already dead for me. I have already said goodbye to him. That his body lingers has little or no meaning for me. This is not cruel, nor callous, nor unfeeling. On the contrary, my heart is broken.
The reality is that the months and months I spent with him last year were when I said goodbye to my dad. I spent good, solid, real time with him. He knew me, and we shared so many moments, and made so many memories. It is time and memories that I will be eternally grateful for.
His poor, frail body remains. He is no longer "living" in any meaningful sense of the word. He exists. His heart pumps, his lungs expand and contract. His mind is lost within the tangles and plaques of this horrid disease.
I will be heartbroken when his body finally gives up, but............I am ready.
Tuesday, December 30, 2008
Blue Christmas
The most important work you and I will ever dois within the walls of our own homes.
~H. B. Lee
I went "home" for Christmas. I hadn't seen Daddy in six months; an eternity in Alzheimer's. I was nervous and stressed beforehand, dreading what I would find at the other end of the plane ride. A very wise friend asked me why I was so apprehensive about seeing my father. I replied that I was afraid he wouldn't recognize me. My friend's response was "Well, YOU know who HE is, don't you? And you know who he was." The thought stopped me in my tracks.
I DO know who he is, and I know who he was. That's what hurts so much. Such a wonderful, vibrant, loving man to be brought to the place he is now just destroys me.
No, Daddy didn't know my name, at least not most of the time. He certainly recognized that I belonged to him, but he obviously couldn't connect my face to my name. It's like that with everyone, now. He's lost a lot more communicative language; his verbal abilities have severely declined over the past months that I've been away. He is mostly incontinent now, and his bed changing many mornings. He is impossibly frail -- a tiny, shrunken, fragile soul who looks as if a halfway decent breeze would knock him over. Mother still gets frustrated and yells at him, talks down to him, and refuses to cater to him. Pisses me right the hell off, too.
Wednesday, December 17, 2008
Going "Home"
“Where we love is home, home that our feet may leave, but not our hearts.”
Oliver Wendell Holmes
Oliver Wendell Holmes
I have been away from Daddy for 5 1/2 months, ever since I moved 1600 miles away from "home". I came to this place in July; it is now December. Tomorrow I am getting on a plane to go back "home" for Christmas. I use the quotation marks intentionally.....while I am truly HOME here, in this beautiful, magical place I have chosen, my family still considers my home to be where they are. Sigh.
So why am I so conflicted about this trip? Why am I sitting here, 12 hours before my flight, dreading the fact that I am leaving? Part, I know, is that I am happy here, and productive, and free to be the me I have always been meant to be. A larger part, though, is having to see Daddy. And Mom.
Daddy's illness has always caused me emotional and mental pain. That pain escalated over the past winter, until by spring I was almost insane with it. Tonight, I feel the pain as a physical manifestation -- my stomach aches, and I have a real pain right in the area of my heart.
I know, intellectually, that Alzheimer's is a progressively degenerative disease. I've certainly seen first-hand how he has gotten worse and worse over time. I think I am sick now because I am afraid to see how the illness has ravaged him in the months since I've been gone.
I know his memory is worse, and I know he is now fairly incontinent. I am sure he is more frail, I am sure he is less verbal. These things I am fairly sure I can cope with. I can probably even cope with Mom's negativity and criticism. I will only be there for a few days, after all, and I am a a grown woman.
If I am honest, I must admit that what is knocking me out right now is the possibility that Daddy may not recognize me. The thought terrifies me. Even though I spent so much quality time with him last winter and spring, and said my goodbyes to him in my mind, I know my heart will break if I get there and he doesn't know who I am.
Life is hard.
Friday, August 22, 2008
Into the dark.....
The gods had condemned Sisyphus toceaselessly rolling a rock to the top of a mountain,
whence the stone would fall back of its own weight.
They had thought with some reason that
there is no more dreadful punishment
than futile and hopeless labor.
~ Albert Camus
It all comes down to one word: avoidance. I have not wanted to travel into the despair again. That's it in a nutshell.
Maybe it's time for me to put on my big-girl panties and deal with it. This festering abcess in my heart really needs to be lanced. Maybe this will help me get there.
I spent 8 months, from October through July, living near (and partially with) my parents, caring for them over the winter. I spent most of my waking life with them, and some nights as well. It was good, and the right thing to do, not just for them, but for me as well. It gave them the physical assistance needed to cope on a daily basis: I helped cook, clean, shop, and get them to doctor appointments. I organized a lifetime of photographs and gave my mother companionship she sorely needed. I tried desperately to make their living situation better, even if only in small ways.
What do I say about it? How do I condense those 8 months into a chunk of information and emotion that can be easily comprehended? I have no clue. Maybe it's like eating an elephant: you go about it one bite at a time.
I didn't write all winter because I couldn't. I was living the experience too intensely, and living the experience too alone, living the experience too locked away. I didn't have the strength or the courage to write what I was living; it was too much, like looking into a bright light that blinds you. I need to stop my mental laziness. Guilt has been nibbling at me for quite a while, and I know I need to address things before they build and grow out of control.
Control......I just realized I wrote that famous word. It is all about control, keeping it, losing it, needing it. Accepting things that are beyond your control. Being self-righteous about it in pig-headed fashion. All of that, and more.
Let me deal with Mom's control issues first. That will be easier for me, since it is a bit less personal. Mother needs to control everything and everybody in her life. This is central to her personality; it part of her core. I am not judging her for it; far be from me to do so. I have more than a few issues with the subject myself. However, her life has turned into a surreal version of "The Emperor's New Clothes", and she truly doesn't see that the emperor is naked.
One of the objectives was to show her, by my being there, that the time had come to get help in the house, be that help in the form of a home health aide, visiting nurse, PT/OT for Daddy, or a combination of services. Naive woman that I was! All my presence did was allow my mother to keep the fragile, wobbly walls of her "reality" propped up a bit longer. I enabled her denial to roll along unchecked. (yes, that's AA/Al-Anon speaking; that stuff is not for this discussion)
Mom's convinced that she is "doing it all" and doing it well. The reality is that she is NOT doing it, except maybe minimally. Their house is a metaphor for what her life has become: everything is neat, and in it's proper place, so things look fine.....at least until you look closely. Then you see the dirty windows and soiled carpets. Open a closet and you'll see the accumulation of "stuff" that has been allowed to collect. Breathe deeply and you will smell the sickness and despair that permeates the house.
A light bulb burns out, and it becomes an event. If the garbage is put out before dinner you will hear about it, since that is not how things are done there. Ice cream at 9PM, grocery shopping Thursday morning, and a cocktail at 5PM. Rigidity reigns supreme.
What's the problem with it? Several. First and foremost, my poor Daddy. He is incapable of bathing himself, so she must help him shower now. It is extremely difficult and far too taxing for her to do, but hey....control, control, control! Thus, he only gets a shower twice a week. Consequently he smells badly. Not just basic body odor, but as he has become incontinent he now smells of urine as well. The indignity of it is outrageous. An aide would keep him clean, yet she refuse to allow an outsider into her home. Just beautiful.
Quick tangent: one Saturday evening, while she was at church and I was with Dad, he had difficulty in the bathroom and needed to be showered. I had to call James to come and shower the excrement off his father, while I mopped floors, walls, and his walker and washed his soiled laundry. James and I both got through it and didn't cry until the work was finished, but cry we did. How could we not? Again, the indignity is outrageous.
The other issue I have is the blatant exploitation of myself and my siblings. Where do you draw the line? Can you draw the line? How do you draw the line? Of course we want to help and be supportive, but at what point do you stop helping and become a broken crutch? We are all broken and bleeding, and she doesn't see it. She is trapped inside the walls of her own pain and suffering, and will not relinquish enough control to let in any light. And so, we cope, individually and as a group. Or we try to, each in our own way.
Maybe it's time for me to put on my big-girl panties and deal with it. This festering abcess in my heart really needs to be lanced. Maybe this will help me get there.
I spent 8 months, from October through July, living near (and partially with) my parents, caring for them over the winter. I spent most of my waking life with them, and some nights as well. It was good, and the right thing to do, not just for them, but for me as well. It gave them the physical assistance needed to cope on a daily basis: I helped cook, clean, shop, and get them to doctor appointments. I organized a lifetime of photographs and gave my mother companionship she sorely needed. I tried desperately to make their living situation better, even if only in small ways.
What do I say about it? How do I condense those 8 months into a chunk of information and emotion that can be easily comprehended? I have no clue. Maybe it's like eating an elephant: you go about it one bite at a time.
I didn't write all winter because I couldn't. I was living the experience too intensely, and living the experience too alone, living the experience too locked away. I didn't have the strength or the courage to write what I was living; it was too much, like looking into a bright light that blinds you. I need to stop my mental laziness. Guilt has been nibbling at me for quite a while, and I know I need to address things before they build and grow out of control.
Control......I just realized I wrote that famous word. It is all about control, keeping it, losing it, needing it. Accepting things that are beyond your control. Being self-righteous about it in pig-headed fashion. All of that, and more.
Let me deal with Mom's control issues first. That will be easier for me, since it is a bit less personal. Mother needs to control everything and everybody in her life. This is central to her personality; it part of her core. I am not judging her for it; far be from me to do so. I have more than a few issues with the subject myself. However, her life has turned into a surreal version of "The Emperor's New Clothes", and she truly doesn't see that the emperor is naked.
One of the objectives was to show her, by my being there, that the time had come to get help in the house, be that help in the form of a home health aide, visiting nurse, PT/OT for Daddy, or a combination of services. Naive woman that I was! All my presence did was allow my mother to keep the fragile, wobbly walls of her "reality" propped up a bit longer. I enabled her denial to roll along unchecked. (yes, that's AA/Al-Anon speaking; that stuff is not for this discussion)
Mom's convinced that she is "doing it all" and doing it well. The reality is that she is NOT doing it, except maybe minimally. Their house is a metaphor for what her life has become: everything is neat, and in it's proper place, so things look fine.....at least until you look closely. Then you see the dirty windows and soiled carpets. Open a closet and you'll see the accumulation of "stuff" that has been allowed to collect. Breathe deeply and you will smell the sickness and despair that permeates the house.
A light bulb burns out, and it becomes an event. If the garbage is put out before dinner you will hear about it, since that is not how things are done there. Ice cream at 9PM, grocery shopping Thursday morning, and a cocktail at 5PM. Rigidity reigns supreme.
What's the problem with it? Several. First and foremost, my poor Daddy. He is incapable of bathing himself, so she must help him shower now. It is extremely difficult and far too taxing for her to do, but hey....control, control, control! Thus, he only gets a shower twice a week. Consequently he smells badly. Not just basic body odor, but as he has become incontinent he now smells of urine as well. The indignity of it is outrageous. An aide would keep him clean, yet she refuse to allow an outsider into her home. Just beautiful.
Quick tangent: one Saturday evening, while she was at church and I was with Dad, he had difficulty in the bathroom and needed to be showered. I had to call James to come and shower the excrement off his father, while I mopped floors, walls, and his walker and washed his soiled laundry. James and I both got through it and didn't cry until the work was finished, but cry we did. How could we not? Again, the indignity is outrageous.
The other issue I have is the blatant exploitation of myself and my siblings. Where do you draw the line? Can you draw the line? How do you draw the line? Of course we want to help and be supportive, but at what point do you stop helping and become a broken crutch? We are all broken and bleeding, and she doesn't see it. She is trapped inside the walls of her own pain and suffering, and will not relinquish enough control to let in any light. And so, we cope, individually and as a group. Or we try to, each in our own way.
Thursday, June 26, 2008
Coming to the Surface
Nobody has ever before asked
the nuclear family to live all by itself in a box
the way we do.
With no relatives, no support,
we've put it in an impossible situation.
~Margaret Mead
the nuclear family to live all by itself in a box
the way we do.
With no relatives, no support,
we've put it in an impossible situation.
~Margaret Mead
I have not written a word here since November. It is now nearly July.
My objective had been to write intensely over the winter. That didn't happen. Winter gave way to spring, and spring to summer, and I am only now revisiting this work of mine. I could find reasons and make excuses, but like most things in life it has been a multi-faceted issue.
A friend told me the other night that when the thoughts were ready, the words would come. Perhaps that is true. Perhaps now my thoughts are ready, or are becoming ready. At any rate, here I am. I need to continue. Time is running out.
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