I returned home this morning from driving my daughter to school. Shortly thereafter the phone rang. It was my brother John, who had driven down to Pinehurst late last night, as we had received word that my father's condition was worsening. Luckily, he and my mother had both spent the entire night at Fox Hollow by my father's bedside. Dad passed away peacefully at about 0530. I had been asleep at home, but I had actually woken up about that same time, and had looked over at the clock, because it was earlier than usual for me and still dark out. I went back to sleep at that point, but my father, as my brother put it, "just got up and left the room."
I have no doubt he was happy to leave that room and its inherent restrictions behind him. We are all happy as well that he is no longer bound by the limits of the Alzheimer's wing at Fox Hollow, Pinehurst NC, an unlikely spot for my father to have lived out the last months of his life. 20 January 1930 - 28 March 2008.
Here is what I wrote to myself upon arriving home from Fox Hollow last time I was there, the last time I would ever see my father alive. This is my elegy.
The blinds on the windows
Allow the sunlight
To brighten the floor
But not the mood
In the room.
The smiling faces frozen
In binding photo frames
Exude good cheer
That goes unnoticed
By my father.
There is an inevitability
To the disease
Terminal, frightening, certain
His thoughts a mystery
I sit quietly.
Medications suspended
Naught but a death watch
He has faded away
Ready for the end, he and I
Having already grieved.
Once he was a pilot
Alone, unafraid, courageous
He has soared to the heavens
And now, again, he will be
In God’s hands.
Friday, March 28, 2008
Friday, March 14, 2008
Maybe it runs in the family . . .
I was down in North Carolina last week. Ostensibly I was there to gather up tax documents so I could file my parents' 2007 taxes for them - they really did have an uncomplicated tax year. Standard stuff except for the $75,000 or so in medical expense exemptions. The only silver lining I could find from having to deal with that kind of crushing expense was that they had more exemptions than income, so they got their taxes back this year. And hey, that makes them eligible for the President's tax rebate, so they can go stimulate the economy by buying more adult diapers.
Of course, I was there as well to look in on my father and see how he was doing. On Saturday he was pretty well out of it, at least in the afternoon after I rolled into Pinehurst. I did get to talk to Rod, his caregiver, for a while, getting his perspective on the care Dad was receiving from the Fox Hollow staff. On Sunday morning Dad was a bit more alert - Sandy had been there in the morning but was no longer bringing him coffee - but he gradually faded off after some abortive attempts to speak to me. So after that I had to leave without really connecting at all that weekend.
The reason I was leaving town was to bring my mother up to her sister's funeral in Maryland. My aunt had had Alzheimer's as well, and passed away at the age of 83, or 5 years older than my father. I had managed to lose touch with my aunt and uncle, who were not more than 30 miles or so away, on the other side of "the Potomac Ocean" as my cousin calls it. I knew my aunt was in failing health, but I had not bothered to reinsert myself into their lives, so I had not seen her for years before she passed away. Nevertheless, I felt comfortable arriving for her funeral service and spending the majority of the day with my many cousins and their families. We were raised not so far apart, and spent many a Thanksgiving day together.
My path had crossed with those of disparate members of their family over the years, but we all got busy raising our own families, I suppose. Spending a day celebrating the life of my aunt, a wise and gentle soul, and mourning their loss felt a bit like foreshadowing. Here was a family, people I knew fairly well, dealing with the loss of a parent to Alzheimer's. It was almost like practice,a dry run (although my eyes were not dry), and it was also good training. They had been smart enough to make many preparations for the inevitable, hashing out the details for the funeral and internment well in advance. And they had been gracious enough to suggest I call them with any questions regarding such decisions. A family I had all but ignored for some years taking me to their bosom again. That felt good, even if it was a funereal day.
So my next visit to Pinehurst, NC will involve the maudlin details of funeral planning. It has been difficult to get my mother going regarding these decisions, and I have been sympathetic, but after last weekend I feel like we better gird our loins and lay out our plan. My approach is to broach a subject with my mother several times before actually trying to make any headway on it. So much of the day to day activity when I am in NC has become unpalatable. For my entire family, for my mother, and I have to believe for my father. There is the sense of being on hold, of a hang fire, when you can't really move on mentally, but must exist in the slow motion present that drags on and on, and you have to force yourself to do what is necessary. The next big step in this process will be the death of our father, the passing away of my mother's husband of 50+ years. Preparations must be made.
The logistics of this suspended animation have required a steady cash flow. Luckily we were able to finally sell our parents' old house. Unfortunately, it was down to two-thirds the original asking price due to the market decline of late. Nevertheless, that provided for a fixed annuity that will provide an income stream and ameliorate my mother's decline in income when my father passes away. Since the NC house was paid for, though, we needed to put a mortgage on it to free up cash to cover the $10,000 or so it costs each month to keep my father in the assisted living facility with the extra care we feel he requires. If his condition worsens, he will need to go to a nursing home, with similar overall costs. My parents had arranged fairly well for their retirement, but had not foreseen these kinds of expenses. It is a brutal arithmetic when you hit this stage of life.
So the logistics and the finances keep us occupied. Wading through my mother's mail keeps us consternated. And I have to say that visiting my father keeps me somewhat depressed. But after visiting with my relatives, just spending a day's time with my brave uncle and his close family, I see that this period of waiting, this time of suspension, bonds the family together and prepares them for the inevitable. It is a sore loss when someone you love dies, but being given the chance to prepare for it can be a saving grace.
Of course, I was there as well to look in on my father and see how he was doing. On Saturday he was pretty well out of it, at least in the afternoon after I rolled into Pinehurst. I did get to talk to Rod, his caregiver, for a while, getting his perspective on the care Dad was receiving from the Fox Hollow staff. On Sunday morning Dad was a bit more alert - Sandy had been there in the morning but was no longer bringing him coffee - but he gradually faded off after some abortive attempts to speak to me. So after that I had to leave without really connecting at all that weekend.
The reason I was leaving town was to bring my mother up to her sister's funeral in Maryland. My aunt had had Alzheimer's as well, and passed away at the age of 83, or 5 years older than my father. I had managed to lose touch with my aunt and uncle, who were not more than 30 miles or so away, on the other side of "the Potomac Ocean" as my cousin calls it. I knew my aunt was in failing health, but I had not bothered to reinsert myself into their lives, so I had not seen her for years before she passed away. Nevertheless, I felt comfortable arriving for her funeral service and spending the majority of the day with my many cousins and their families. We were raised not so far apart, and spent many a Thanksgiving day together.
My path had crossed with those of disparate members of their family over the years, but we all got busy raising our own families, I suppose. Spending a day celebrating the life of my aunt, a wise and gentle soul, and mourning their loss felt a bit like foreshadowing. Here was a family, people I knew fairly well, dealing with the loss of a parent to Alzheimer's. It was almost like practice,a dry run (although my eyes were not dry), and it was also good training. They had been smart enough to make many preparations for the inevitable, hashing out the details for the funeral and internment well in advance. And they had been gracious enough to suggest I call them with any questions regarding such decisions. A family I had all but ignored for some years taking me to their bosom again. That felt good, even if it was a funereal day.
So my next visit to Pinehurst, NC will involve the maudlin details of funeral planning. It has been difficult to get my mother going regarding these decisions, and I have been sympathetic, but after last weekend I feel like we better gird our loins and lay out our plan. My approach is to broach a subject with my mother several times before actually trying to make any headway on it. So much of the day to day activity when I am in NC has become unpalatable. For my entire family, for my mother, and I have to believe for my father. There is the sense of being on hold, of a hang fire, when you can't really move on mentally, but must exist in the slow motion present that drags on and on, and you have to force yourself to do what is necessary. The next big step in this process will be the death of our father, the passing away of my mother's husband of 50+ years. Preparations must be made.
The logistics of this suspended animation have required a steady cash flow. Luckily we were able to finally sell our parents' old house. Unfortunately, it was down to two-thirds the original asking price due to the market decline of late. Nevertheless, that provided for a fixed annuity that will provide an income stream and ameliorate my mother's decline in income when my father passes away. Since the NC house was paid for, though, we needed to put a mortgage on it to free up cash to cover the $10,000 or so it costs each month to keep my father in the assisted living facility with the extra care we feel he requires. If his condition worsens, he will need to go to a nursing home, with similar overall costs. My parents had arranged fairly well for their retirement, but had not foreseen these kinds of expenses. It is a brutal arithmetic when you hit this stage of life.
So the logistics and the finances keep us occupied. Wading through my mother's mail keeps us consternated. And I have to say that visiting my father keeps me somewhat depressed. But after visiting with my relatives, just spending a day's time with my brave uncle and his close family, I see that this period of waiting, this time of suspension, bonds the family together and prepares them for the inevitable. It is a sore loss when someone you love dies, but being given the chance to prepare for it can be a saving grace.
Friday, February 1, 2008
Denial? Check. Anger? Check. Fear? Check. Grief? Check. Acceptance?
Denial? Check. Anger? Check. Fear? Check. Grief? Check. Acceptance?
Last weekend I went to North Carolina, ostensibly to see Dad. The main reason was because I had not been down there since the holidays. The secondary reason was to attend a meeting with a financial planner. The tertiary reason was actually to visit my father. This hierarchy is a little embarrassing to admit, but there you have it. I feel as if I am not able to maintain a decent grasp on the reality of the situation my parents inhabit unless I am actually face to face with it myself on a regular basis. That is what brings me down each time.
Being face to face with my father is a different matter. Last visit, back in the supposedly joyous days of late December, our interaction was very limited. At some points my father’s eyes were blank – I am sad to say that they reminded me of the eyes of a goat, which you can look into but see no sense of recognition or intelligence or awareness. Of course, my father displays all of these characteristics, at times, but that blank look caused an existential shudder somewhere deep inside each time I saw it.
Until I found myself looking into that void exhibited by my father’s heretofore windows to the soul, I believed I had been through the first four stages of personal loss. I thought I had actually made significant headway in the grieving department, as discussed in a prior entry, and was well on my way to acceptance. Even when I left Fox Hollow in the waning days of 2007 I believed this.
During my latest visit, though, my father’s eyes never clouded over. He stared off into space sometimes, but he appeared to be contemplating something, somehow, somewhere. I picked up a digital photo frame in his room, the type that runs a slideshow of pictures, and held it in front of Dad and narrated the photos to him. Perhaps the interval was too short for him to grasp the context of the photos, but he meekly looked at them and listened to me and gave no real indication that he recognized most of what he was seeing. Most of the time. The way he did indicate to me he recognized the pictures for what they were was by crying – and they were not tears of joy. I think when his mind recognized something, when the image was strong enough to rouse his memory, it made him sad rather than happy. Whatever joy was associated with the people or places in the image was overridden by the sense of loss he must have been feeling. When the photos were of my family traipsing around Europe, he meekly stared, but when the photos were from his old house on the water by the Gulf of Mexico his eyes teared up and he was sad.
My father is definitely in the Grief stage of his illness. There is a lot written on the stages and eventually people are hopeful that they will reach Acceptance of their fate. I do not see how the brain afflicted by Alzheimer’s can ever reach that state. The confusion inherent in the disease works against any semblance of serenity. The uncertainty imposed by the damage to the memory leads to self-doubt and frustration. With that backdrop, it seems highly unlikely that an Alzheimer’s patient will ever be afforded the self-awareness to reach the acceptance of their disease and impending death. Hence, until the brain is nearly completely shot and the body is simply operating at only the most basic level, the Alzheimer’s patient must be caught in the Grief stage. So much is lost to them, both realized and unrealized, that the sense of loss must be overwhelming – loss of freedom, loss of places and people they know, loss of vocabulary, loss of memory, loss of awareness. When the recognition of this loss trickles into their consciousness, it must be depressing. Agonizingly so.
The caregivers from AOS, helping out at Fox Hollow, had mentioned this crying tendency for the past several months, but my father had not exhibited this response in front of me before. I assumed it was because of my naturally buoyant personality that the tears had not flowed before, but perhaps I overestimate my effervescence. When I try to consciously empathize with my father, imagining the situation in which he is trapped, I find myself wanting to cry as well. Although he has family and friends in attendance and there is a regular supply of (no-sugar) cookies, he has lost most of what he held dear in the world. His own abilities, mental and physical, have abandoned him, and there is no way back for him. There is no hope of recovering his life by working hard or analytically planning a strategy that will end-run his illness. It is a damn sad situation. And he is sad. And he has a right to be. And if he finds a way to acceptance, he is a much much better man than me.
Last weekend I went to North Carolina, ostensibly to see Dad. The main reason was because I had not been down there since the holidays. The secondary reason was to attend a meeting with a financial planner. The tertiary reason was actually to visit my father. This hierarchy is a little embarrassing to admit, but there you have it. I feel as if I am not able to maintain a decent grasp on the reality of the situation my parents inhabit unless I am actually face to face with it myself on a regular basis. That is what brings me down each time.
Being face to face with my father is a different matter. Last visit, back in the supposedly joyous days of late December, our interaction was very limited. At some points my father’s eyes were blank – I am sad to say that they reminded me of the eyes of a goat, which you can look into but see no sense of recognition or intelligence or awareness. Of course, my father displays all of these characteristics, at times, but that blank look caused an existential shudder somewhere deep inside each time I saw it.
Until I found myself looking into that void exhibited by my father’s heretofore windows to the soul, I believed I had been through the first four stages of personal loss. I thought I had actually made significant headway in the grieving department, as discussed in a prior entry, and was well on my way to acceptance. Even when I left Fox Hollow in the waning days of 2007 I believed this.
During my latest visit, though, my father’s eyes never clouded over. He stared off into space sometimes, but he appeared to be contemplating something, somehow, somewhere. I picked up a digital photo frame in his room, the type that runs a slideshow of pictures, and held it in front of Dad and narrated the photos to him. Perhaps the interval was too short for him to grasp the context of the photos, but he meekly looked at them and listened to me and gave no real indication that he recognized most of what he was seeing. Most of the time. The way he did indicate to me he recognized the pictures for what they were was by crying – and they were not tears of joy. I think when his mind recognized something, when the image was strong enough to rouse his memory, it made him sad rather than happy. Whatever joy was associated with the people or places in the image was overridden by the sense of loss he must have been feeling. When the photos were of my family traipsing around Europe, he meekly stared, but when the photos were from his old house on the water by the Gulf of Mexico his eyes teared up and he was sad.
My father is definitely in the Grief stage of his illness. There is a lot written on the stages and eventually people are hopeful that they will reach Acceptance of their fate. I do not see how the brain afflicted by Alzheimer’s can ever reach that state. The confusion inherent in the disease works against any semblance of serenity. The uncertainty imposed by the damage to the memory leads to self-doubt and frustration. With that backdrop, it seems highly unlikely that an Alzheimer’s patient will ever be afforded the self-awareness to reach the acceptance of their disease and impending death. Hence, until the brain is nearly completely shot and the body is simply operating at only the most basic level, the Alzheimer’s patient must be caught in the Grief stage. So much is lost to them, both realized and unrealized, that the sense of loss must be overwhelming – loss of freedom, loss of places and people they know, loss of vocabulary, loss of memory, loss of awareness. When the recognition of this loss trickles into their consciousness, it must be depressing. Agonizingly so.
The caregivers from AOS, helping out at Fox Hollow, had mentioned this crying tendency for the past several months, but my father had not exhibited this response in front of me before. I assumed it was because of my naturally buoyant personality that the tears had not flowed before, but perhaps I overestimate my effervescence. When I try to consciously empathize with my father, imagining the situation in which he is trapped, I find myself wanting to cry as well. Although he has family and friends in attendance and there is a regular supply of (no-sugar) cookies, he has lost most of what he held dear in the world. His own abilities, mental and physical, have abandoned him, and there is no way back for him. There is no hope of recovering his life by working hard or analytically planning a strategy that will end-run his illness. It is a damn sad situation. And he is sad. And he has a right to be. And if he finds a way to acceptance, he is a much much better man than me.
Thursday, January 10, 2008
On Grieving
So there we were, squared off across the table, the emotional side of the family over there, the more guarded side of the family aligned with yours truly. At the far end of the table was a psychologist and grief counselor, Kevin or Keith. And, on the speaker phone from China, was our brother Bob, who really does not fit into any family characterization other than “unique.” I suppose he would have sat at a different table.
I am an introvert, and I am not publicly emotional. To some I would appear stilted, even stunted emotionally, but I am not. And I have come to grips with my father’s impending demise. Still, there we all were, to discuss the process of grieving. Although it seemed to me to be a rather formal means of discussing a rather personal topic, it was important for our family to discuss this and make clear that we would indeed “be there” for each other to assist in the grieving process.
Family members tend to revert to specific “roles” when they get together as adults. My brother the lawyer arranged this meeting. He believes in meetings and counseling. My siblings and I all assumed our roles (I am a “listener”) around the tables, to some degree, and I believe overall this was a beneficial meeting. The psychologist’s description of the many ways that people grieve, and the many different time tables, was of the most value to me, as I know from past experience that I do not spend a lot of time grieving right away, but tend to dole out grief in measured bursts, staggered at intervals that I can handle. Since I am fundamentally unable to handle a lot of grief at once, this tends toward a long period of grieving. But I already knew that. Now I know that’s OK. The others discussed what is important to them. Largely, I came away with the awareness of needing to support my mother more than ever, and to keep in touch just as much with my siblings after Dad’s demise as during the time we have been managing his illness.
I am thankful my brother instigated the meeting, and that we were all available to attend. Perhaps this would have been a good idea when our older sister Mary died in a car crash six years back, when I was just about convinced we were all dysfunctional because the grieving processes were varied and many, and that I must have been doing something wrong since I could not relate to how the others were handling things.
While I was in the Navy, a dozen of my friends died. All while flying, usually while flying into the ground, but sometimes the water. And all were avoidable accidents, mishaps, not war time losses. Considered “aircrew error” except for the F-14 that disintegrated when its afterburner blew up instead of igniting. My sister and my nephew died in a sudden car crash, an accident for which they were blameless. These were all losses that happened suddenly. The death watch for my father is a different situation. It is a slow motion mishap, the kind you can see coming from a mile away and brace yourself for the impact. So there is time to prepare, and, although you cannot avoid it, you can prepare yourself for it. The wise will take the time to make these preparations while they have the chance.
I am an introvert, and I am not publicly emotional. To some I would appear stilted, even stunted emotionally, but I am not. And I have come to grips with my father’s impending demise. Still, there we all were, to discuss the process of grieving. Although it seemed to me to be a rather formal means of discussing a rather personal topic, it was important for our family to discuss this and make clear that we would indeed “be there” for each other to assist in the grieving process.
Family members tend to revert to specific “roles” when they get together as adults. My brother the lawyer arranged this meeting. He believes in meetings and counseling. My siblings and I all assumed our roles (I am a “listener”) around the tables, to some degree, and I believe overall this was a beneficial meeting. The psychologist’s description of the many ways that people grieve, and the many different time tables, was of the most value to me, as I know from past experience that I do not spend a lot of time grieving right away, but tend to dole out grief in measured bursts, staggered at intervals that I can handle. Since I am fundamentally unable to handle a lot of grief at once, this tends toward a long period of grieving. But I already knew that. Now I know that’s OK. The others discussed what is important to them. Largely, I came away with the awareness of needing to support my mother more than ever, and to keep in touch just as much with my siblings after Dad’s demise as during the time we have been managing his illness.
I am thankful my brother instigated the meeting, and that we were all available to attend. Perhaps this would have been a good idea when our older sister Mary died in a car crash six years back, when I was just about convinced we were all dysfunctional because the grieving processes were varied and many, and that I must have been doing something wrong since I could not relate to how the others were handling things.
While I was in the Navy, a dozen of my friends died. All while flying, usually while flying into the ground, but sometimes the water. And all were avoidable accidents, mishaps, not war time losses. Considered “aircrew error” except for the F-14 that disintegrated when its afterburner blew up instead of igniting. My sister and my nephew died in a sudden car crash, an accident for which they were blameless. These were all losses that happened suddenly. The death watch for my father is a different situation. It is a slow motion mishap, the kind you can see coming from a mile away and brace yourself for the impact. So there is time to prepare, and, although you cannot avoid it, you can prepare yourself for it. The wise will take the time to make these preparations while they have the chance.
Dying or Not
I have read that older folks often die around the holidays. I have not written for a month due to the “holiday” season in December and the many distractions it brings. Not the least of the distractions was my father and the several times we were told that he was near death. At times it appears the hospice people are crying wolf, with each and every decline in health regarded as a harbinger of his demise, but he has physically rallied on these occasions, his body staving off the insults of pneumonia and low blood sugar and low blood pressure and medication withdrawal.
In one sense, this is exasperating. After all, we have removed the “life prolonging” medications from his regimen because we do not wish him to reach a fully vegetative state, basically allowing his body to fail along with his mind. This is in accordance with his strict guidance on the matter, made clear to us years ago. Although I do not wish my father to die on any given day, I know he, the he I knew for my entire life until very recently, did not relish the thought of living on in a severely diminished mental capacity. Although there are occasional glimpses of his personality, the Alzheimer’s disease has progressed more rapidly than anyone expected or the doctors could explain. The simple rapidity of his degradation by the disease has been staggering to us, and perhaps the overarching impression of his illness. Things happen fast. Dad did always want things to move quickly, though, so maybe his innate impatience has hastened his demise.
In a different sense, we are not quite ready to say our final goodbyes to our father. I feel like I will not have a chance to really connect verbally with him again – he does not know who I am anymore. There are the occasional moments of lucidity, but I am afraid these are occurring less and less all the time. And I do not seem to be there when they occur. Or they occur because there is a woman in the room but I am not a woman, so there you have it. So I feel like a lot of my grieving has already taken place. I am sure there will be more, but I have moved beyond denial and anger, and, although I still am depressed by it all, I am in that acceptance mode now. My father will die, and, I believe, soon. But he has always been a bit confounding, so I am not putting any money down on a particular month.
I was down in Pinehurst early in December, with my three children and our dog. My father was pleased to see the kids initially, and we chatted about nothing in particular, or particularly intelligible, our first night there. After that, though, there was not much real interaction, and my father was very unresponsive, even when I brought in my Labrador at the same time as Sandy the care-giver brought hers. Two big black dogs would have gotten quite a response from him a month earlier. I did not see my father again until shortly after Christmas. He had caught pneumonia, rebounded, and hung on during the interim, but he was truly vacant sometimes while I was there. Again, over a matter of weeks, his baseline mental health had declined perceptibly. Alzheimer’s is not very subtle.
In one sense, this is exasperating. After all, we have removed the “life prolonging” medications from his regimen because we do not wish him to reach a fully vegetative state, basically allowing his body to fail along with his mind. This is in accordance with his strict guidance on the matter, made clear to us years ago. Although I do not wish my father to die on any given day, I know he, the he I knew for my entire life until very recently, did not relish the thought of living on in a severely diminished mental capacity. Although there are occasional glimpses of his personality, the Alzheimer’s disease has progressed more rapidly than anyone expected or the doctors could explain. The simple rapidity of his degradation by the disease has been staggering to us, and perhaps the overarching impression of his illness. Things happen fast. Dad did always want things to move quickly, though, so maybe his innate impatience has hastened his demise.
In a different sense, we are not quite ready to say our final goodbyes to our father. I feel like I will not have a chance to really connect verbally with him again – he does not know who I am anymore. There are the occasional moments of lucidity, but I am afraid these are occurring less and less all the time. And I do not seem to be there when they occur. Or they occur because there is a woman in the room but I am not a woman, so there you have it. So I feel like a lot of my grieving has already taken place. I am sure there will be more, but I have moved beyond denial and anger, and, although I still am depressed by it all, I am in that acceptance mode now. My father will die, and, I believe, soon. But he has always been a bit confounding, so I am not putting any money down on a particular month.
I was down in Pinehurst early in December, with my three children and our dog. My father was pleased to see the kids initially, and we chatted about nothing in particular, or particularly intelligible, our first night there. After that, though, there was not much real interaction, and my father was very unresponsive, even when I brought in my Labrador at the same time as Sandy the care-giver brought hers. Two big black dogs would have gotten quite a response from him a month earlier. I did not see my father again until shortly after Christmas. He had caught pneumonia, rebounded, and hung on during the interim, but he was truly vacant sometimes while I was there. Again, over a matter of weeks, his baseline mental health had declined perceptibly. Alzheimer’s is not very subtle.
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