My father’s brain works mightily to convey thought. Unfortunately, it more closely resembles an engine with only one cylinder firing than a well-oiled machine. He strains to retrieve words. He strains to make and voice the connections between his thoughts. To the observer, the logic is partial and fleeting, but his synapses only randomly obey their master, and his meaning must be second-guessed, buried, as it is, beneath layers of inefficacy and forced inarticulateness. With patience and concentration, however, his logic can be discerned. Sometimes.
My father flew jets in the Navy and then went on to government and private sector work in the defense industry. He prided himself on his analytical abilities, on his proclivity for detailed and thorough and thoughtful analysis of complex issues. He reveled in his talent to deconstruct problems and synthesize solutions. Smart man. Alzheimer’s disease has managed to corrupt the connections in his brain, though, and refuses him the satisfaction of cogent thought. His pride and joy has been taken from him, wresting away a large element of his self-worth and personal concept of his own identity. I imagine this is in itself depressing. Very.
Shorn of his long held concept of himself, it is no wonder that my father at times exhibits stark confusion. He forces himself to reign in the fear associated with these moments, gradually realizing where he is, who he is, hopefully who others are. Like the first few moments as one awakens from a dream, he faces the curious dilemma of having to establish what is real and what is fantasy. Like the awakened sleeper, he gradually becomes aware of what is around him. Unlike the fortunate sleeper, though, he does not come to the eventual awareness of being fully awake. His world is informed by confusion throughout the day. I often wonder what his dreams are like. I must ask him some day. Soon.
Friday, October 19, 2007
Tuesday, October 16, 2007
Consensus
Today my father was released from the hospital. He is going back to the Alzheimer’s wing of the assisted living facility Fox Hollow, but during the course of the past few days his life has been changed.
Last week, he was doing well adjusting to life in the Memory Unit, and seemed to be better off than he was even at home. After suffering a few successive falls in his room, though, he wound up in the hospital with an IV in his arm for dehydration. When he left this week, returning to his “home” at Fox Hollow, he had been taken off a number of medications, including insulin, and hospice care was arranged to begin immediately. This change in his care was not an easy decision for his family, my mother, siblings, and me, but this point in his steady demise from Alzheimer’s was inevitable. What caught us off guard was the rapidity with which we reached this point.
Alzheimer’s is essentially a terminal illness. There is no stopping it. It can be slowed and ameliorated, but, unless something else kills you first, it will drop your mental activities to something resembling the status of “brain dead.” To most people, this is the end of life, whether your body is still ticking or not. “Brain dead” means your brain stem, responsible for the most basic of your bodily functions, is not functioning properly – often it fails to regulates breathing, the lungs stop working, and the brain then dies from lack of oxygen. Brain dead refers to irreparable damage to the brain. Alzheimer’s also causes irreparable damage, but it accrues gradually.
Contrasted to brain dead is being in a vegetative state. A vegetative state is an ongoing lack of response to stimuli, although the person might have his eyes open (as opposed to a coma, where the person’s eyes are closed). This state might be temporary for some, but for an Alzheimer’s patient, it can be expected to be permanent. Many times my father told us he did not wish to continue living as a “vegetable.”
Which brings me back to my family’s decision this past week. Despite the reassuring way in which he settled in to life in the Memory Unit, Dad is going downhill fast. His doctors have aggressively tried to mitigate the onslaught of the disease, but his Alzheimer’s has progressed more rapidly than we ever expected. Whenever I discussed his condition with professionals in the health care industry, their initial comment was typically “he’s so young” (he is now 77). Certainly, to me, the difference in his health over the past 15 months, since my return to the US, is staggering, and heartbreaking. The doctors assure us he will continue to decline at this pace.
The option our family chose for my father was to cut back on the medications he was receiving that dealt with his long term ailments. Doing this would bring his body in line with his brain – in other words, he could be expected to deteriorate physically as his brain function receded. This will supposedly result in his death sooner than is medically possible, but before he becomes brain dead, or, hopefully, before he becomes, in his word, a “vegetable.” This decision is completely aligned with all guidance my father provided us when he was able to do so coherently, and with what we believe is in his best interest.
So how do I feel about saying yes, let us hasten the death of our father? Perplexed, at one level, that this juncture came so soon, but relieved, on another level, that I can foresee an end to his pain. Sometimes, when I speak with my father, I can see the confusion and frustration in his face as he struggles to make coherent conversation. Some days he does well, and I can follow what his mind is trying to convey. Other days, not so much. But always I am thinking about the mental capacity he once had, and what a major part that played in his life. I know he is too. Although he puts a brave face on it (lately decrying the driving statutes in NC and scheming to rewrite them), this is depressing for him.
On his good days, I have to second-guess our decision to “let him go.” But the good days are numbered, according to the medical professionals, and we need to enjoy them while we can, because, despite our fervent hopes or prayers, Dad’s mental faculties will continue to deteriorate until his personality, the man we have known for our entire lives, is gone. And then confusion reigns. And death is not unwelcome.
Last week, he was doing well adjusting to life in the Memory Unit, and seemed to be better off than he was even at home. After suffering a few successive falls in his room, though, he wound up in the hospital with an IV in his arm for dehydration. When he left this week, returning to his “home” at Fox Hollow, he had been taken off a number of medications, including insulin, and hospice care was arranged to begin immediately. This change in his care was not an easy decision for his family, my mother, siblings, and me, but this point in his steady demise from Alzheimer’s was inevitable. What caught us off guard was the rapidity with which we reached this point.
Alzheimer’s is essentially a terminal illness. There is no stopping it. It can be slowed and ameliorated, but, unless something else kills you first, it will drop your mental activities to something resembling the status of “brain dead.” To most people, this is the end of life, whether your body is still ticking or not. “Brain dead” means your brain stem, responsible for the most basic of your bodily functions, is not functioning properly – often it fails to regulates breathing, the lungs stop working, and the brain then dies from lack of oxygen. Brain dead refers to irreparable damage to the brain. Alzheimer’s also causes irreparable damage, but it accrues gradually.
Contrasted to brain dead is being in a vegetative state. A vegetative state is an ongoing lack of response to stimuli, although the person might have his eyes open (as opposed to a coma, where the person’s eyes are closed). This state might be temporary for some, but for an Alzheimer’s patient, it can be expected to be permanent. Many times my father told us he did not wish to continue living as a “vegetable.”
Which brings me back to my family’s decision this past week. Despite the reassuring way in which he settled in to life in the Memory Unit, Dad is going downhill fast. His doctors have aggressively tried to mitigate the onslaught of the disease, but his Alzheimer’s has progressed more rapidly than we ever expected. Whenever I discussed his condition with professionals in the health care industry, their initial comment was typically “he’s so young” (he is now 77). Certainly, to me, the difference in his health over the past 15 months, since my return to the US, is staggering, and heartbreaking. The doctors assure us he will continue to decline at this pace.
The option our family chose for my father was to cut back on the medications he was receiving that dealt with his long term ailments. Doing this would bring his body in line with his brain – in other words, he could be expected to deteriorate physically as his brain function receded. This will supposedly result in his death sooner than is medically possible, but before he becomes brain dead, or, hopefully, before he becomes, in his word, a “vegetable.” This decision is completely aligned with all guidance my father provided us when he was able to do so coherently, and with what we believe is in his best interest.
So how do I feel about saying yes, let us hasten the death of our father? Perplexed, at one level, that this juncture came so soon, but relieved, on another level, that I can foresee an end to his pain. Sometimes, when I speak with my father, I can see the confusion and frustration in his face as he struggles to make coherent conversation. Some days he does well, and I can follow what his mind is trying to convey. Other days, not so much. But always I am thinking about the mental capacity he once had, and what a major part that played in his life. I know he is too. Although he puts a brave face on it (lately decrying the driving statutes in NC and scheming to rewrite them), this is depressing for him.
On his good days, I have to second-guess our decision to “let him go.” But the good days are numbered, according to the medical professionals, and we need to enjoy them while we can, because, despite our fervent hopes or prayers, Dad’s mental faculties will continue to deteriorate until his personality, the man we have known for our entire lives, is gone. And then confusion reigns. And death is not unwelcome.
Wednesday, October 3, 2007
Foreward (first written, posted late)
Today I signed the agreement to put my father into an Alzheimer’s care facility. I would like to say it had been a long and tortuous path to this event, but it all seems to have happened very quickly. One year ago I asked my father to sign a general power of attorney form for me. He was very worried at that time that my mother would put him away in an insane asylum and take all of his money. I have a feeling that next week he will be thinking that she got away with it.
Alzheimer’s is a vicious little shit of a disease. It manages to steal away your loved one before you have a chance to say goodbye. Then it leaves behind a body, like a molted shell of an insect, eerily familiar on the outside but vacant. Of course, it is a gradual process, and daily contact can make it nearly imperceptible, until it crashes in on your awareness as quantum recognition of what has been lost. And then there is the constant hope, the quintessential human emotion, which paints the bleakest horizon a slight bit lighter than it can be. Maybe today will be better. Maybe. But eventually tomorrow will be worse, and the unrelenting certainty of that is what you want to ignore, what you want to avert your eyes away from, and the stark truth of Alzheimer’s. No one gets better. No one recovers. Everyone either eventually slips away into a personal haze or dies before they make it there.
At this point I think I would rather die. Alzheimer’s scares me. Flying off aircraft carriers at night and zipping between unseen mountains in the dark with another 20-something-year-old sitting next to me did not scare me. Mountain biking on the edge of sheer cliffs doesn’t scare me. Having teenagers doesn’t scare me. But this disease does. I believe I now understand what the old writers meant when they said someone felt a sense of dread. I dread Alzheimer’s.
But to every nasty foreboding ugly dark cloud there is a slight tinge of silver on the edge, barely visible unless you squint, at least at my age. In the case of my father’s plight, it is my family. This latest bout of hardship has brought us closer together. It is the first time we have had to stand together and face the gradual demise of one of our own. My three brothers and two surviving sisters did have to go through the wrenching loss of my oldest sibling, Mary, and her son, Robert, the eldest of the grandchildren, some 7 years ago. That was a sudden, brutish, senseless loss, the result of a teenage driver driving like a teenager. It was then that I saw that my family could come together and share some moments that were meaningful and bonding despite the overbearing sense of grief. Not everything that happens at a funeral is sad. The fellowship can be transcendent and affirming. You might feel a little guilty, but there is something to be enjoyed in those gatherings of dark-clad mourners.
A funeral, though, is a moment in time, a generally agreed upon time to air out the grief, to exchange the commiserations, and to shed the tears. It is over in a few days. The grieving, of course, can last the rest of one’s life, but the catharsis is the funeral or the wake or the spreading of ashes or the memorial service for the ones who never returned home. Although the pain and grief like to hang around, there is a sense of closure, at least in the physical sense – you will not see this person again. You buried him, you spread her in the Atlantic or in her rose garden, or you accepted the fact that they were victims of a sinking ship/exploding jet/collapsing skyscraper.
When you have to go face to face with the person you are grieving over, though, there is no sense of closure, though you are already feeling the loss. It is a bizarre twist in the panoply of grief – you sense the loss but you cannot say goodbye, because, hey, there sits your loved one, inside their shell of familiar flesh, behind uncomprehending eyes. I used to wonder what it would be like to lie in a coma, with people going by everyday, throwing out your thoughts to them, demanding they talk to you, but unable to move, unable to get their attention, unable to help yourself. Trapped in your body. Now I wonder what it is like to have Alzheimer’s. Will there always be a measure of recognition that you have lost something, but you are not sure what it was, unable to coherently think it through? Trapped in your brain. I do not know which is a worse fate, and I hope to never find out. I also used to have a fear of being buried alive, but at least that is something for which the “Worst Case Scenario Handbook” or Part Two of “Kill Bill” can prepare you. No one recovers from Alzheimer’s and writes a how-to manual. I suppose it would be a best seller though.
Standing by peaceful waters, near my parent’s home in Orange Beach, Alabama, on an island prophetically called Ono, barely a year ago, I was one of the uninitiated, hopeful, dismissive onlookers, with no real clue how quickly my father’s mental condition would deteriorate. Of course, that is one of the unknowable parameters in the world of dementia, but it sure seems as if we were hit with a worst case scenario. Since then, though, I have learned that the basic symptoms of the disease started long ago, and were manifest during the two years I lived in England and only briefly saw my parents one Christmas holiday. I suppose one of the huge lessons for me has been that you better spend quality time with the old folks. They could be unreachable before they decline physically.
My brother is a lawyer. He thinks like a lawyer and speaks like one, although he does not live his life the way I think lawyers generally do, in my narrow minded bigoted perspective. Hey, there’s a reason for all of those lawyer jokes. Anyway, his approach to this entire devolution has been predictable, trying to get a lot of information, sifting through it all, weighing alternatives, encouraging discussion, lots of discussion, input from all parties, and more discussion, then making decisions and taking action. I suppose his formula is at least as effective as mine, which is to withdraw emotionally, grit my teeth when required to take action, and effectively sliding into depression. Not the most admirable of plans, but there it is. At least it didn’t drive me to drink. Well, except for last weekend.
The various reactions, actions, and emotions of my siblings and mother were predictable. There is a lot written about the relationships in a family, how they are carried throughout life, playing out in a recurring pattern. This seems to be true, from my experience. Each of us fills a role, fulfills expectations, and contributes in his own way. The lawyer makes sure we cross the t’s and dot the i’s. The distant, world-traveling engineer picks out courses of action that are technically correct for lesser issues, but do not display a wide knowledge of the situation. The youngest brother has a different perspective, worries about things I do not, and talks more than I consider necessary when making his points. I keep quiet and listen, as that has become my role, until I find no one is saying what I really feel needs to be said and need to end one of our interminable conversations.
The females are predictably more emotional about all of this. My mother is distraught over the loss of her husband and companion of 55 years. She is an old school wife, she feels like she should have done better, could’ve somehow improved the situation over the years, and is reluctant to let hope slip away. My oldest sister is in heaven, looking down on us, and, perhaps for the first time since her tragic demise, happy that she is not going through this with her siblings. The sister in California feels close to impotent, although she has been a constant comfort to her parents and a leader in the decision making process. The sister in North Carolina is the closest geographically, and perhaps closest to our mother. She sees the placement of the old man in a care facility as necessary to insure the health of our mother. Which it is. To her, though, it is a moral imperative. To me, it is a consideration, which makes me callous I suppose.
So here we are, the typical dysfunctional family. With the obvious shortcomings we all have, there are the opposing strengths. Between the six of us siblings, there is a super-human endowed with all of the traits necessary to make humane and correct decisions and act responsibly on behalf of both of our parents. The trick is organizing the many-limbed superhero. Electronic communications make this process possible, and I believe we will make our father proud in how we handle this situation. That is, once he stops resenting our placing him in what he will consider an insane asylum, and also assuming that he recognizes us as his children. Those are basically the two things for which I am hoping.
John Prine has a song, “Souvenirs,” in which he cannot forgive the various things that rob him of his memories, of his childhood, his loves, and his family. I hate Alzheimer’s, for it always brings me tears, and I cannot forgive the way it robs me of my souvenirs, and my father. I want to taunt Alzheimer’s, say, “My name is Steve Dapogny. You killed my father. Prepare to die.” That does give the impression that I am angry. Yes, I am. I have several stages to go through before I reach acceptance.
Alzheimer’s is a vicious little shit of a disease. It manages to steal away your loved one before you have a chance to say goodbye. Then it leaves behind a body, like a molted shell of an insect, eerily familiar on the outside but vacant. Of course, it is a gradual process, and daily contact can make it nearly imperceptible, until it crashes in on your awareness as quantum recognition of what has been lost. And then there is the constant hope, the quintessential human emotion, which paints the bleakest horizon a slight bit lighter than it can be. Maybe today will be better. Maybe. But eventually tomorrow will be worse, and the unrelenting certainty of that is what you want to ignore, what you want to avert your eyes away from, and the stark truth of Alzheimer’s. No one gets better. No one recovers. Everyone either eventually slips away into a personal haze or dies before they make it there.
At this point I think I would rather die. Alzheimer’s scares me. Flying off aircraft carriers at night and zipping between unseen mountains in the dark with another 20-something-year-old sitting next to me did not scare me. Mountain biking on the edge of sheer cliffs doesn’t scare me. Having teenagers doesn’t scare me. But this disease does. I believe I now understand what the old writers meant when they said someone felt a sense of dread. I dread Alzheimer’s.
But to every nasty foreboding ugly dark cloud there is a slight tinge of silver on the edge, barely visible unless you squint, at least at my age. In the case of my father’s plight, it is my family. This latest bout of hardship has brought us closer together. It is the first time we have had to stand together and face the gradual demise of one of our own. My three brothers and two surviving sisters did have to go through the wrenching loss of my oldest sibling, Mary, and her son, Robert, the eldest of the grandchildren, some 7 years ago. That was a sudden, brutish, senseless loss, the result of a teenage driver driving like a teenager. It was then that I saw that my family could come together and share some moments that were meaningful and bonding despite the overbearing sense of grief. Not everything that happens at a funeral is sad. The fellowship can be transcendent and affirming. You might feel a little guilty, but there is something to be enjoyed in those gatherings of dark-clad mourners.
A funeral, though, is a moment in time, a generally agreed upon time to air out the grief, to exchange the commiserations, and to shed the tears. It is over in a few days. The grieving, of course, can last the rest of one’s life, but the catharsis is the funeral or the wake or the spreading of ashes or the memorial service for the ones who never returned home. Although the pain and grief like to hang around, there is a sense of closure, at least in the physical sense – you will not see this person again. You buried him, you spread her in the Atlantic or in her rose garden, or you accepted the fact that they were victims of a sinking ship/exploding jet/collapsing skyscraper.
When you have to go face to face with the person you are grieving over, though, there is no sense of closure, though you are already feeling the loss. It is a bizarre twist in the panoply of grief – you sense the loss but you cannot say goodbye, because, hey, there sits your loved one, inside their shell of familiar flesh, behind uncomprehending eyes. I used to wonder what it would be like to lie in a coma, with people going by everyday, throwing out your thoughts to them, demanding they talk to you, but unable to move, unable to get their attention, unable to help yourself. Trapped in your body. Now I wonder what it is like to have Alzheimer’s. Will there always be a measure of recognition that you have lost something, but you are not sure what it was, unable to coherently think it through? Trapped in your brain. I do not know which is a worse fate, and I hope to never find out. I also used to have a fear of being buried alive, but at least that is something for which the “Worst Case Scenario Handbook” or Part Two of “Kill Bill” can prepare you. No one recovers from Alzheimer’s and writes a how-to manual. I suppose it would be a best seller though.
Standing by peaceful waters, near my parent’s home in Orange Beach, Alabama, on an island prophetically called Ono, barely a year ago, I was one of the uninitiated, hopeful, dismissive onlookers, with no real clue how quickly my father’s mental condition would deteriorate. Of course, that is one of the unknowable parameters in the world of dementia, but it sure seems as if we were hit with a worst case scenario. Since then, though, I have learned that the basic symptoms of the disease started long ago, and were manifest during the two years I lived in England and only briefly saw my parents one Christmas holiday. I suppose one of the huge lessons for me has been that you better spend quality time with the old folks. They could be unreachable before they decline physically.
My brother is a lawyer. He thinks like a lawyer and speaks like one, although he does not live his life the way I think lawyers generally do, in my narrow minded bigoted perspective. Hey, there’s a reason for all of those lawyer jokes. Anyway, his approach to this entire devolution has been predictable, trying to get a lot of information, sifting through it all, weighing alternatives, encouraging discussion, lots of discussion, input from all parties, and more discussion, then making decisions and taking action. I suppose his formula is at least as effective as mine, which is to withdraw emotionally, grit my teeth when required to take action, and effectively sliding into depression. Not the most admirable of plans, but there it is. At least it didn’t drive me to drink. Well, except for last weekend.
The various reactions, actions, and emotions of my siblings and mother were predictable. There is a lot written about the relationships in a family, how they are carried throughout life, playing out in a recurring pattern. This seems to be true, from my experience. Each of us fills a role, fulfills expectations, and contributes in his own way. The lawyer makes sure we cross the t’s and dot the i’s. The distant, world-traveling engineer picks out courses of action that are technically correct for lesser issues, but do not display a wide knowledge of the situation. The youngest brother has a different perspective, worries about things I do not, and talks more than I consider necessary when making his points. I keep quiet and listen, as that has become my role, until I find no one is saying what I really feel needs to be said and need to end one of our interminable conversations.
The females are predictably more emotional about all of this. My mother is distraught over the loss of her husband and companion of 55 years. She is an old school wife, she feels like she should have done better, could’ve somehow improved the situation over the years, and is reluctant to let hope slip away. My oldest sister is in heaven, looking down on us, and, perhaps for the first time since her tragic demise, happy that she is not going through this with her siblings. The sister in California feels close to impotent, although she has been a constant comfort to her parents and a leader in the decision making process. The sister in North Carolina is the closest geographically, and perhaps closest to our mother. She sees the placement of the old man in a care facility as necessary to insure the health of our mother. Which it is. To her, though, it is a moral imperative. To me, it is a consideration, which makes me callous I suppose.
So here we are, the typical dysfunctional family. With the obvious shortcomings we all have, there are the opposing strengths. Between the six of us siblings, there is a super-human endowed with all of the traits necessary to make humane and correct decisions and act responsibly on behalf of both of our parents. The trick is organizing the many-limbed superhero. Electronic communications make this process possible, and I believe we will make our father proud in how we handle this situation. That is, once he stops resenting our placing him in what he will consider an insane asylum, and also assuming that he recognizes us as his children. Those are basically the two things for which I am hoping.
John Prine has a song, “Souvenirs,” in which he cannot forgive the various things that rob him of his memories, of his childhood, his loves, and his family. I hate Alzheimer’s, for it always brings me tears, and I cannot forgive the way it robs me of my souvenirs, and my father. I want to taunt Alzheimer’s, say, “My name is Steve Dapogny. You killed my father. Prepare to die.” That does give the impression that I am angry. Yes, I am. I have several stages to go through before I reach acceptance.
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