(The following is a reconstruction of the experience which I can only imagine. I am trying to see and describe a world experienced by my loved one who has Alzheimer's. Each hour is a day to him. He navigates by no existing sextant. His is a journey of sighted sightlessness. It is here, in this situation, where it is so necessary to ask the Angels and God's good hand to gently usher one with this disease and their caregivers in the right orientation. I pray: "Adjutorium nostrum in nomine domini qui fecit caelum et terrum." Our help is in the name of the Lord who made heaven and earth. Psalm 123)
My eyes open. It takes me a moment that drags into minutes. I am unfamiliar with this room. My heart speeds up. My legs do not cooperate well. I get them from off the bed. I am wearing pajamas. Do I keep these on? I hear noises around me. My eyes focus on a switch on the wall. A light switch. I wonder if my mother is ok? It seems like long since yesterday when I last saw her. Then my hand moves upward reaching for the switch. I need more light to see where I am.
My legs are old legs but I am me. Athletic. I always was called "jumping" cause I run with a hop. Why are my legs old? My heart speeds. Up. A balance problem. I steady myself and my legs seem weighted down to make them move in a shuffle. Not sure if this is a trick; a dream? I am in a room with a big mirror. Seems like hours standing before this face I know has to be me but is not me. Where is me? Who is me? My wrinkled hand reaches for a comb. I see a tube. I open the tube. I put the creamy white hair cream with a minty smell on the comb. I comb my hair with it.
I guess I stay in these clothes but I have a pair of pants by the bedside. Are they mine? Will I upset anyone if I put them on? Do I put them on over what I have on? My heart races. I must sit and rest. I am tiring myself out thinking and deciding my next purpose. My eyelids seem like lead. I lay back on the bed with my legs hanging over the side in case I have to get up quick. Have to be ready to get up for work; cannot be late for work.
[30 minutes pass]
I see him. That guy that's always here. The door opened a little. I see a face and the eye looks at me. Who is it? Do I ask for help? What is this room? How long have I been asleep? My mother. Where is she? I need to get ready to go to mother's house. Time to get up and see who's looking. It's that guy.
[The guy speaks.]
"Hey dad, it's me Tom. I was just looking in on you to see if you are ok." the man says. I know he is Tom but who is Tom. I know his name, but who is he? Why is he? How come he is here in my room? What room is this? I have to go home to mother. Where is the other guy that looked into my room before? How many people are here? Are there others?
He says the coffee is ready and it's a beautiful morning. Morning? I just went to bed. Isn't it night? If it is morning, I have to go to work. Work. Cannot be late to the guys in the shop. My legs are heavy. I make it to the mirror. I see a face different from my face. Is that a window with some old man looking at me? My heart races. I will not let this upset me. Candy. Need to wet my mouth. I pop it in my mouth and it soothes my mouth and my head. A song is in my head. I hum it. I hum it. I put the pants next to the bed on. They barely fit. Shoes. There are two. Which one on which foot? Not that hard. I put on the shoes. I put on a jacket over my shirt I am wearing on the bed. Warm. I feel warm. I walk out into a hallway I've not seen before but on second thought, it is familiar. Round the corner and smell coffee gurgling; noise on the TV screen. I see pills on the table. My hand pulls me to the pills. Tom is there with a glass of water. I guess I take the pills with water. He has a cup of coffee. that cup of dark hot coffee. I should be going to work but maybe Tom is part of my carpool. I sit, I drink my coffee. My eyelids are lead filled. Mother is waiting for me. I here voices in the background and I cannot move as if I'm asleep but I can hear them talking that I am forgetting mother died. Mother is real. She is calling me. I reach for coffee and can't seem to pick up the cup. What is this happening? It seems like I have been sitting here for days. Time to go to work. Where is the woman in the wheel chair? My old friend. She might be in the room with the closed door. Dora. My friend, Dora. I'll go look for her later. Have to go check on mother.
It has been a real struggle to come up with these thought patterns. I imagine these are a little more coherent than what actually might be the actual pattern of thought of my loved one. Pattern. That is a key word that the person with dementia lacks. Recognizable patterns. For the caregiver, it is truly an adventure into a jungle filled with the unseen lions and tigers of surprise that spring out of nowhere; or is it "knowhere? These wild thoughts are real. They spring out of a long past that precedes a "nothingness", a "vacuum". A rush of adrenaline fills their bodies as they grapple with the same tigers and lions; but they are the ones which the animals bite into first as we the caregivers "remind" them as best we can the part of their mind that has been systematically erased - the part of their mind that would have kept them out of this jungle in the first place. And all the techniques in the world do not prepare an individual caregiver for this smorgasbord of interpersonal skills and diplomacy. How deep is the loved one in the shadows of the jungle? How much "memorex" must be used to remind them so they don't feel incompetent or inadequate?
I suppose I write all of this as kind of a release for me. It is a kind of catharsis as my own life has been reduced to the rudements of living as a companion with my loved one who is lost in the jungle. I also write it because I am reminding myself that I too can wander into this jungle someday; and I hope there is someone to be there with, however much "memorex" tape it takes for them to rip me out of the past and into now.
The "walk into now" implies so much at all different human levels, intellectual, practical, cultural, spiritual, psychological, etc. etc. Most importantly, the "walk into now" should be a routine we form knowing that the base of who we are as children of God is our immortal soul. The soul is like that little black box on an airplane that is there to help explain what happened when something goes wrong with the airplane. Even from the bottom of the deepest ocean, these little black boxes have the most important essences of the craft. The soul is the true recording of the most elementary of components of our immortality which continue on existing after the "craft of our minds and bodies" have crashed: In this black box is our sense of God, our habits in relation to the craftsman, the God whos very self is burned onto our souls, deeper than our DNA that will one day die and be the stuff of ashes. In that box is a flashlight and a sonar that beeps through the deepest depths with a ping of where we are and who we are so that even in my most confused state, hopefully, I will be found in the deepest of oceans or the darkest of forests. Found by someone filled with Gods love in sufficient amounts that allow me to rediscover peace and security by these angels. In that peace, I will be able to make the sign of the cross, and finger the rosary and say "my Lord and My God" during the consecration at Mass while surrounded by the bluster of forgetfullness and chaos that also will someday disappear. When even these are gone, who I am will outlast it all. I will be able to sense that when such peace is present, nothing in the heavens, above the heavens, in the earth and below the earth, nothing needs to be remembered except Him and me together -- sitting in the same pew, sleeping in the same bed, drinking the same coffee on a bright windless morning in Spring.
Perhaps the key is to live life "walking into the now" every day. Walking into the kitchen to have my "daily bread". Recording into the black box of my soul the gravations of the song I sing with my God as a child might hum a zippideedoodah tune, "my oh my what a wonderful day." while sucking rhythmically on a hard candy. And for those who are caring for a loved one already within the ravages of the jungle, don't forget to sing a tune with your loved one, thus, allowing them to know that the very tune or the act of humming it is a thread, the connection, very easily looked over, but nevertheless, the connection to the fact that he or she is loved by their craftsman and by us.
My eyes open. It takes me a moment that drags into minutes. I am unfamiliar with this room. My heart speeds up. My legs do not cooperate well. I get them from off the bed. I am wearing pajamas. Do I keep these on? I hear noises around me. My eyes focus on a switch on the wall. A light switch. I wonder if my mother is ok? It seems like long since yesterday when I last saw her. Then my hand moves upward reaching for the switch. I need more light to see where I am.
My legs are old legs but I am me. Athletic. I always was called "jumping" cause I run with a hop. Why are my legs old? My heart speeds. Up. A balance problem. I steady myself and my legs seem weighted down to make them move in a shuffle. Not sure if this is a trick; a dream? I am in a room with a big mirror. Seems like hours standing before this face I know has to be me but is not me. Where is me? Who is me? My wrinkled hand reaches for a comb. I see a tube. I open the tube. I put the creamy white hair cream with a minty smell on the comb. I comb my hair with it.
I guess I stay in these clothes but I have a pair of pants by the bedside. Are they mine? Will I upset anyone if I put them on? Do I put them on over what I have on? My heart races. I must sit and rest. I am tiring myself out thinking and deciding my next purpose. My eyelids seem like lead. I lay back on the bed with my legs hanging over the side in case I have to get up quick. Have to be ready to get up for work; cannot be late for work.
[30 minutes pass]
I see him. That guy that's always here. The door opened a little. I see a face and the eye looks at me. Who is it? Do I ask for help? What is this room? How long have I been asleep? My mother. Where is she? I need to get ready to go to mother's house. Time to get up and see who's looking. It's that guy.
[The guy speaks.]
"Hey dad, it's me Tom. I was just looking in on you to see if you are ok." the man says. I know he is Tom but who is Tom. I know his name, but who is he? Why is he? How come he is here in my room? What room is this? I have to go home to mother. Where is the other guy that looked into my room before? How many people are here? Are there others?
He says the coffee is ready and it's a beautiful morning. Morning? I just went to bed. Isn't it night? If it is morning, I have to go to work. Work. Cannot be late to the guys in the shop. My legs are heavy. I make it to the mirror. I see a face different from my face. Is that a window with some old man looking at me? My heart races. I will not let this upset me. Candy. Need to wet my mouth. I pop it in my mouth and it soothes my mouth and my head. A song is in my head. I hum it. I hum it. I put the pants next to the bed on. They barely fit. Shoes. There are two. Which one on which foot? Not that hard. I put on the shoes. I put on a jacket over my shirt I am wearing on the bed. Warm. I feel warm. I walk out into a hallway I've not seen before but on second thought, it is familiar. Round the corner and smell coffee gurgling; noise on the TV screen. I see pills on the table. My hand pulls me to the pills. Tom is there with a glass of water. I guess I take the pills with water. He has a cup of coffee. that cup of dark hot coffee. I should be going to work but maybe Tom is part of my carpool. I sit, I drink my coffee. My eyelids are lead filled. Mother is waiting for me. I here voices in the background and I cannot move as if I'm asleep but I can hear them talking that I am forgetting mother died. Mother is real. She is calling me. I reach for coffee and can't seem to pick up the cup. What is this happening? It seems like I have been sitting here for days. Time to go to work. Where is the woman in the wheel chair? My old friend. She might be in the room with the closed door. Dora. My friend, Dora. I'll go look for her later. Have to go check on mother.
It has been a real struggle to come up with these thought patterns. I imagine these are a little more coherent than what actually might be the actual pattern of thought of my loved one. Pattern. That is a key word that the person with dementia lacks. Recognizable patterns. For the caregiver, it is truly an adventure into a jungle filled with the unseen lions and tigers of surprise that spring out of nowhere; or is it "knowhere? These wild thoughts are real. They spring out of a long past that precedes a "nothingness", a "vacuum". A rush of adrenaline fills their bodies as they grapple with the same tigers and lions; but they are the ones which the animals bite into first as we the caregivers "remind" them as best we can the part of their mind that has been systematically erased - the part of their mind that would have kept them out of this jungle in the first place. And all the techniques in the world do not prepare an individual caregiver for this smorgasbord of interpersonal skills and diplomacy. How deep is the loved one in the shadows of the jungle? How much "memorex" must be used to remind them so they don't feel incompetent or inadequate?
I suppose I write all of this as kind of a release for me. It is a kind of catharsis as my own life has been reduced to the rudements of living as a companion with my loved one who is lost in the jungle. I also write it because I am reminding myself that I too can wander into this jungle someday; and I hope there is someone to be there with, however much "memorex" tape it takes for them to rip me out of the past and into now.
The "walk into now" implies so much at all different human levels, intellectual, practical, cultural, spiritual, psychological, etc. etc. Most importantly, the "walk into now" should be a routine we form knowing that the base of who we are as children of God is our immortal soul. The soul is like that little black box on an airplane that is there to help explain what happened when something goes wrong with the airplane. Even from the bottom of the deepest ocean, these little black boxes have the most important essences of the craft. The soul is the true recording of the most elementary of components of our immortality which continue on existing after the "craft of our minds and bodies" have crashed: In this black box is our sense of God, our habits in relation to the craftsman, the God whos very self is burned onto our souls, deeper than our DNA that will one day die and be the stuff of ashes. In that box is a flashlight and a sonar that beeps through the deepest depths with a ping of where we are and who we are so that even in my most confused state, hopefully, I will be found in the deepest of oceans or the darkest of forests. Found by someone filled with Gods love in sufficient amounts that allow me to rediscover peace and security by these angels. In that peace, I will be able to make the sign of the cross, and finger the rosary and say "my Lord and My God" during the consecration at Mass while surrounded by the bluster of forgetfullness and chaos that also will someday disappear. When even these are gone, who I am will outlast it all. I will be able to sense that when such peace is present, nothing in the heavens, above the heavens, in the earth and below the earth, nothing needs to be remembered except Him and me together -- sitting in the same pew, sleeping in the same bed, drinking the same coffee on a bright windless morning in Spring.
Perhaps the key is to live life "walking into the now" every day. Walking into the kitchen to have my "daily bread". Recording into the black box of my soul the gravations of the song I sing with my God as a child might hum a zippideedoodah tune, "my oh my what a wonderful day." while sucking rhythmically on a hard candy. And for those who are caring for a loved one already within the ravages of the jungle, don't forget to sing a tune with your loved one, thus, allowing them to know that the very tune or the act of humming it is a thread, the connection, very easily looked over, but nevertheless, the connection to the fact that he or she is loved by their craftsman and by us.
Tom, you should write a book... no, you should write books!!! Thank you for sharing this!
ReplyDeletethank you Casosiwi for the kind thought. Blessings to you for taking the time to read my ramblings. dtom
Delete