I nearly gave away the code to the exit door last week. To leave the Memory Unit at Fox Hollow, you need to punch in the correct five digit code and press *. A little green light will light to let you know you have entered the code correctly, and the door will unlock. If, however, you are inattentive to the lights and forgetful of the code, a buzzer will alert the nearby staff that someone is attempting to open the door without the proper code entered. So, when the buzzer went off, I quickly piped up that it was just me and went back to the nursing station to ask for a reminder of the proper way to extricate myself from the Unit.
As I loudly said “So, the code is 7-7-…” I was promptly hushed and told that I would need to be more discreet with the code. There were several residents within easy earshot and, despite appearances, they were likely to be listening on our conversation. One woman, in particular, was considered a flight risk (“wander” is the correct verb in the Unit). She was sitting strategically close to the door of the office, I noticed. On her account, they had to regularly change the door code.
On that afternoon, I eventually made my way out of the Unit to the car and went on my way, free to go where I would. The residents of the Unit are not free to do so on their own. While this certainly makes for safer streets in Pinehurst, NC, it is a restriction on personal freedom Americans usually only encounter after breaking the law. Once my father used the term “inmates” when speaking of his fellow residents, but I changed the subject, as I did not wish to validate that term. He had railed against my mother locking him away, back when his mental capacity was less suspect, so I knew he had a real concern of being “locked up.” He did not seem to notice this facet of the Unit protocol, however, perhaps because he was unlikely to go off walking very far without assistance anyway.
That door, though, was a very real indicator of his status in society. His placement in the Unit required a Tar Heel State form signed by his doctor, indicating his affliction with Alzheimer’s, his legal lack of competence, and his status as a wander risk. That piece of paper, the FL-2, was the sine qua non of his placement, without his stated understanding or acceptance, behind a locked door.
My father’s fear of being “locked away” was grounded in his childhood experiences. His mother suffered from depression when he was young, and she was locked away in a sanitarium for three years. His recollection of the place consisted of horror stories not uncommon in the first half of the twentieth century, including straitjackets and lobotomies and bars on the windows, inmates howling at night, and barren hallways walked by zombies with barren eyes. Not pretty. Not entirely accurate in its day, and certainly not typical of he care given to the tortured victims of psychiatric disease today. But it was a very real mental image to him, something that I had never heard from him until less than a year before we needed to place him in the Unit. When Alzheimer’s claims chunks of brain and memory, what is often left is the deepest roots of the personality, including, in my father’s case, this deep seated fear. Coincidentally, his desire to charm “the ladies” was also left intact.
The Unit, luckily, in no way represents the mental image my father had feared. There are no bars. You can actually leave the Unit, under supervision. You can go for a drive, go out to lunch, go to a doctor appointment. But not by yourself. And that locked door is there to insure you do not wander off and endanger yourself or anyone else. Pinehurst, NC, seems to have more than its share of traffic accidents without the help of the Unit residents.
Still, it is an infringement on one’s freedom to be in the Unit. However pleasant they might make his stay, and however surreptitious the restriction, there is a clear sense of control the staff have over my father. He views it in the same way as he views his recent hospital stays – being told what to do and when to do it. In the past year, though, this is essentially the same pattern he has kept while at home – he was told when to get up, eat, take medications, inject insulin, exercise, bathe, and go to bed. Although much of the routine was couched in deferential language and he was afforded some level of input, he lived under a relatively tight regimen that helped to control his manifest symptoms and ailments. The Unit was a change of locale, but only a modest change in this routine. The overarching discrepancy between the two is the absence of my mother from the picture.
My mother was the constant companion and attendant my father relied upon, physically and emotionally. Despite the AOS caregivers being there eight hours of each day, the ultimate responsibility for my Dad staying alive rested on my mother’s shoulders. The wear and tear on the primary caregiver for an Alzheimer’s patient is well documented in the book “The 36-Hour Day.” One of my father’s doctors quoted us the statistic that 50% of these primary caregivers die before the patient, worn out and stressed out and eventually terminal. This was the major reason the doctors pushed for placement in a facility when they did – they saw that my mother was rapidly losing weight and becoming less and less effective. Placing my father was a means of protecting my mother. She was none too happy to do it herself, but the sense of inevitability grew on her, as well as the rest of us, and the logic of taking better care of both of them by separating them, after 55 years of marriage, became clear to us all.
The price of this care is the limited freedom of my father and the separation of the spouses – don’t even get me started on the financial costs. A movie is in the theaters right now, “Away from Her,” that deals with marital separation, dementia, and the awkwardness of this situation for all involved. I have not seen the movie, but I am sure it would depress me. I think that the sense of separation for the Alzheimer’s stricken spouse might be easier to take. The patient will eventually adjust to his new surroundings and, as more and more memories recede, the sense of loss will diminish. For the healthy spouse, the memory of what was will live longer, and hence the sense of loss. Eventually the Alzheimer’s patient may not recognize or remember his own spouse, despite daily visits. That is obviously a tougher row to hoe for the healthy spouse.
This is the sort of complication that keeps you constantly second-guessing your actions when trying to aid your parents in this time of their lives. What really is best for them? Our family felt that it was important for my mother’s health to place my father in the Unit, but will that really prove to be the case? Will the mental strain of separation be worse than the physical stress of caregiving? It is a judgment call we made. I think because my parents’ marriage was not of the “soul mate” cuddly variety, we have made the right choice. They lived mentally apart for over a decade, and I think the decline of my father’s health brought them back closer again. Once my mother gains a little weight and establishes her own rhythm and schedule again I think she will flourish despite the separation from her spouse. For some people, though, this separation will prove even more traumatic. I shudder to think what it would be like for me, as my wife is my long time best friend, fellow traveler, and, for lack of a better description, “soul mate.”
The separation of spouses in this manner is a study in opposites. For one, it is a restriction of freedom, for the other, it frees them from the daily demands of caregiving. For one, options decrease, for the other, options increase. As with most things in life, there is a yin side in the Unit and a yang side in the larger world, extending even beyond Pinehurst, NC.
That is how I reconcile the decision to restrict my father’s freedom. As a family, we decided this was the best course of action. With his power-of-attorney, I signed the admission forms. But philosophically, I see the placement of my father in the unit as a matter of give-and-take, a zero-sum balancing of the freedom available to both of my parents. While my father loses some of his, my mother regains hers, which she had sacrificed in service to his needs. She sacrificed enough, and needs her life back. I know that my father, my analytical father of several years ago, would see the elegance of this solution.
Second attempt at this topic:
The lack of freedom does not mean as much as the lack of circulation. When you can’t walk very far the option to do so is less consequential. If it tires you out to walk down the hall for lunch, is it really all that important that the other direction is blocked?
In the Memory Unit at Fox Hollow, in Pinehurst, NC, there is a locked door. Like a roach motel, the residents can go in, but they cannot go out, unless they know the code that opens the exit door. The staff tries to keep that code out of the hands of the residents. Security leaks, however, necessitate the occasional changing of the five-digit code. Security leaks like me.
After pressing the code incorrectly, the door would not open for me, and a warning buzzer alerted the staff that someone was trying to get out in a non-prescribed manner. I confessed immediately and went to the manager’s office to retrieve the correct code for the second time. I said, apparently too loudly, “So, the code is 7-7-…” Several voices shushed me, and in lowered voices made it clear that although the walls did not have ears, the residents did. I looked out of the open doorway into the large common room the residents use as their lounge. A couple sat together, facing the door. They were silent, but looking at me. Another woman, a well-coifed white-hair of diminutive stature, sat nearby in an armchair, well within eavesdropping distance.
I was informed the closest resident was indeed a snoop, always on the prowl for the code, and well versed in escape. She was the reason the code was regularly changed, and she was indeed sitting close by to garner information from loose-lipped visitors such as myself. The staff was nice enough to reiterate the code entry process and let me out of the Unit. The listless residents could only watch as I left them behind.
That is the lot of the Alzheimer’s patient at the Unit. They have been “placed” there, with a legal document from their document stipulating that they do not possess the legal competence to make their own decisions. It is a bit of a legal limbo, as they can actually leave the Unit under supervision, but not on their own. They are able to go into the other part of the Fox Hollow complex, the Assisted living side, and mingle with the residents, taking part in activities, but they eventually must return to the lock down of the Unit.
That locked door represents the limitation of the most basic of freedoms that American citizens expect and take for granted. Although this is a benign situation, the Unit offers private rooms with TV, telephone, snacks, and activities, there is no getting around the loss of freedom involved. Fortunately, the typical resident of the unity is not overly agitated about this. Perhaps this has something to do with their medications, but in the case of my father it has a lot to do with his physical limitations. He can walk short distances with his cane, but a walk to the far end of the long corridor running the length of the facility and back is at the far end of his endurance. So the physical space allowed the residents of the Unit is more than adequate for his normal activity level.
This lack of freedom is not too harsh a measure for my father because he is at the stage of Alzheimer’s where it does not impact his daily routine too much. Until recently, he spent the majority of his time in his house, on a regimented daily schedule, with medications and meals carefully timed, insulin before lunch and dinner, diabetic diet needs met, and eight hours daily of Aging Outreach Services caregivers available to assist him and speak with. The transition to the Unit is in its second week. He has had the same general routine, just in a different locale, with the same caregivers dropping in on him. The major change is that my mother has not been there for him – she has feigned illness and been ill as well, staying at home and visiting my sister.
We decided that if my father was worried about my mother’s health, he would be less agitated about his surroundings and he would not blame my mother for putting him “away.” He has said repeatedly over the past year that my mother wants to put him in an asylum and take all of his money. Of course, now he is placed in a facility that nobody would call an asylum, and the bulk of his money will be spent for his care at the Unit. And he is not blaming my mother. We will eventually have to explain to him that he will be staying and living at Fox Hollow, but we hope he will become acclimated to, if not enamored with, the Unit.
When it becomes clear to him, if it ever actually does, that he will be a long term resident of the Unit, he might resort to blaming my mother and decry his placement as being locked up in an asylum. You never know. To date, though, he is aware that the people there are all very pleasant to each other, that there are activities he likes to do, and that the food can be pretty tasty. I doubt that he will be able to reconcile that reality to his long-standing image of an insane asylum, replete with straitjackets and howling at the moon. So there is hope that experiencing the Unit before acknowledging the long term nature of his stay will lessen any backlash after he is told.
Still, those of us on the other side of the Unit door note that infringement on his freedom. We are making a lot of decisions for him, in concert with my mother and his doctors, because he is incapable of doing so. That is the essence of the Alzheimer’s decline. The patient gradually becomes less capable of making decisions and others around him will pick up the slack. Eventually, all decisions of importance fall in the lap of the caregivers. It is a mantle few welcome, I suppose, but as it is a gradual process you are given a chance to get used to the concept. Placement into a care facility, however, is a quantum leap in the normally gradual nature of the developments, and marks a departure from the overarching norm of living in one’s own home.
The step to institutionalized care is unnerving for anyone. Spending a mere day in the hospital rattles most people. Simply put, confinement chafes. And having “strangers” around is always weird.
I have lost train of thought. Yin and yang, balance of freedoms for spouses.
Tuesday, September 25, 2007
First Vist to Fox Hollow Memory Unit
Today I visited my father in the “Memory Unit” of the Fox Hollow Assisted Living Community in Pinehurst, NC. An unlikely place for my father to wind up his life, but there he is. North Carolina, and Pinehurst, in particular, played no part in my father’s life, other than the occasional interstate trek across the Tar Heel State. And the odd visit to my sister’s home in Durham. When he moved to NC he was on the verge of losing the cognitive ability to make a responsible decision about his own future, so we helped him, along with my mother, reach that particular conclusion to relocate to Pinehurst.
It was closer to the average child, drivable in less than 7 hours by four of the six (California and Asia being a bit more distant), reasonably temperate, closest to my sister (which got it my vote), and basically across the street from all required medical services, as opposed to an hour-plus drive from every required medical service. Pinehurst was not as picturesque as the waterfront home my parents left behind on the Gulf of Mexico, but it was a damn sight more amenable to their needs. Still, this move was a rather odd development in their lives. It was not planned on their part, it was not a dream of theirs to be in NC, and it was wholly brought about by the pressure of the family to move themselves from their hurricane magnet of a house to a more benign environment.
So, were we right to do so? Did the benefits outweigh the costs of the move, of the upheaval in the lives of my mother and father? We think so. Even if the move exacerbated my father’s dementia, perhaps accelerating his Alzheimer’s development, the improved care, for both of my parents, more than offset that negative. It might by presumptuous and arrogant to push one’s parents into such a move, but there comes a time when old folks may not be able to act in their own best interests. And that becomes the crux of the relationship between elderly parents and their offspring. The children can find themselves in a position better suited to drive decisions that must be made regarding the well-being of their parents. It is a role reversal, truly, wherein the role of mentoring and oversight is taken over by the younger generation.
Once the average person simply buried his parents, who succumbed to illness or the vagaries of the elderly. With the advent of gerontology and medicines that control the ravages of time, though, many people are being kept alive longer, and, in the case of Alzheimer’s patients, are being kept physically alive even as they are mentally dying. My father signed a Health Directive, luckily, one year ago, specifying his wish to not be kept alive by extraordinary means, and placing the determination of this status in the hands of my sisters. This type of directive, or “Do Not Resuscitate” order, is becoming commonplace, but it deals with purely physical matters. I suppose if my father was legally brain dead we would honor his wishes and not allow artificial life support. The disease he is suffering from, however, will not leave him brain dead. Alzheimer’s will gradually destroy his mind, but there tends to be something of a person left inside, and you have to wonder what is going on inside his head even as his ability to control bodily functions declines.
In the old days, as they say, these people would be unable to fend for themselves, would be a drag on a subsistence level household, and would succumb to their disease relatively quickly. Some Inuit tribes in Canada would abandon the decrepit elderly and move on, leaving them to die of exposure and starvation. Generally, though, the average lifespan was shorter in the past, and many people never lived to the age where dementia and Alzheimer’s disease now strike. The fact that Americans are living longer makes them more likely to fall prey to the diseases of the brain. The larger number of people experiencing these diseases makes it more likely you will know someone who is afflicted. In typical American fashion, as the likelihood of Alzheimer’s increases and looms on the horizon for the Baby Boomers, there is an outcry for research into finding a cure for the disease. No one wants to be the last person diagnosed and untreated for Alzheimer’s.
Which gets me to my point. There is a possibility of getting these dread diseases. You should not focus all of your attentions on this possibility, but a little planning can go a long way. After seeing how this sneaky disease blindsided my family, it is obvious that some consideration of the possibility of Alzheimer’s striking my father could have helped us act more quickly. The spouse of an Alzheimer’s patient tends to hide the symptoms of onset, either ignorant of what they are or unwilling to face the truth. This head-in-the-sand reaction is apparently prevalent and understandable. Losing your spouse in slow motion to the disease is a sad lot, and denial can buy you time until you are forced to accept it. This might lessen the early impact on the life of the patient and his spouse, but ultimately it masks the developing problem and can prevent some meaningful discussion taking place before it is too late.
Because eventually it will be too late, as that is the nature of the disease. My father was an analytical person. He told me so several times today – in fact, that he still is. His current condition, however, precludes making a sound analysis of his life, his situation, and his illness. Although he is aware that his cognitive abilities are declining, in his already progressed deterioration, he is unable to discern how far his mental faculties have declined. In other words, with the brain power he has left, he cannot make an accurate judgment of where he is on the spectrum of mental acuity. He wanted to drive when it was obvious to everyone else that he was mentally unfit for the task. He claims to making grand plans when he is actually suffering from dementia. It is a heart rending thing to watch, and it appears to be inevitable once the disease starts to progress.
And that is why I will make myself some semblance of a plan if I feel that Alzheimer’s might become my personal diagnosis. This does not require minute detail, simply the outline of what is to be done. In my father’s case, my mother and he were stuck in limbo, dealing with daily decay but not doing much about it. The intervention of their children resulted in their successful relocation, but it was very stressful for all involved. With some foresight, some actual rational thought as opposed to wishful thinking (“we’ll never move from here” (our second story walk-up on a little island in hurricane country an hour from medical facilities)), this evolution would have been much less stressful, especially for the children who spend their time second-guessing pushing their parents in these matters. So, that’s an ideal to shoot for – a contingency plan. When you are retired you ought to have the time to come up with one in case your retirement daydreams do not pan out. And after what my family has been through this past year, I hereby promise my kids I will not leave them in the situation where they must make all the decisions with no guidance whatsoever from my (currently) rational analytical self.
So there they are in NC. The Tar Heel State. A nice place to visit, but I personally abhor Pinehurst for what it is to me. Pinehurst is a place we evacuated my parents to, the place my father will likely spend the rest of his days in the “Memory Unit”, nice as it is, and gradually decline to death. There are a lot of active oldsters thereabouts, plenty of people with energy and a sparkle in their eyes, who perhaps need some assistance to get the most out of the days they have remaining to them. With Alzheimer’s, though, it is unclear to me what it is that my father gets out of the days that are still ahead of him. There is still a hint of his personality left, and the occasional burst of lucidity that gives you false hope, which you can enjoy together and take home with you as a keepsake, a meager portion of what once you took for granted, but the person who was once my father is gone. His body is inhabited by a portion of the man he was, and for that I am grateful, but the long gradual descent into Alzheimer’s is essentially a protracted, irreversible, and painfully long goodbye.
So what of the DNR, or the Health Directive? Should I buy a piece of an iceberg from the Inuit and send him off to sea, in a frozen version of a Viking funeral, cracked off from the ice shelf by global warming? Is the intersection of global warming and Alzheimer’s somehow a fitting end to man’s time here on earth?
Less plaintively stated: At what point are we keeping our father alive with extraordinary means?
On the lighter side:
I visited my father in the Fox Hollow “Memory Unit” today. That is their euphemism for the Alzheimer’s wing of the Assisted Living Facility. We decided to “place” our father in a “facility” due to the continued slide into dementia, the decline of my mother’s physical health due to the toil of caring for my father, and the none-too-subtle urging of his doctors. So, Dad has been here since Monday noon. I arrive Thursday afternoon.
I sign in at the front desk after walking through the front foyer of elderly types awaiting rides. Some doze, some are lively, some say hello. I smile at the old people. Say hello. Make my way down to the Memory Unit door.
I suppose I need a nickname for the Memory Unit. “The Unit” is a bit bland. The “MU” is weak. “The Home” has negative connotations amongst the elderly but everyone can invoke a mental image when you say that. My father has a deep seated fear of insane asylums or loony bins or psycho wards, so those terms, incorrect as they all are, are definitely off limits. He is in the “West Wing” of the building, so that is a little catchy, given the TV show and the supposed import of the location, but I currently and probably forever will hate politicians, so I find that unpalatable. I reach the door without deciding upon a name for the Memory Unit. Perhaps they really did look at all the alternatives.
The door opens normally from the outside – to exit, however, you need a code. I crack the door and peek in to make sure there are no potential escapees loitering nearby. I have learned to be suspicious of anyone near the door into such a place, and I want to spare myself the potential embarrassment of running down a fugitive from the . . . Memory Unit.
The only resident I see upon entry through the door is my father. He is leaning on the doorway into the nurse’s station, demanding a snack. He has always been big on snacks. The most basic attributes of an individual seem to stay with Alzheimer’s patients, so this is putatively positive although possibly annoying for the staff. I stand behind him for a few minutes to observe how he is interacting with the staff. Since the nurse, Tanya, deals with Alzheimer’s patients daily, she is very professional but not unsympathetic with him, and eventually several packs of potato chips arrive and a cup of cranberry juice. He is glad to see me, and smiles, but I perceive a bigger smile when the chips arrive.
After chatting for a while about his new digs, my father claims to have tried over and over to get the organ against the wall to work. I step over and note that it is unplugged. The administrator of the Unit promises to get it moved over to a nearby socket, despite my warning that my father will likely try to play something on it. He has already joined in with the devotional singing group, loudly, so Dee, the manager, smiles and says that they actually encourage that kind of behavior.
Eventually my father shows me his room, although there is some difficulty recognizing it. Outside each room is a small window box with mementoes and photographs to help the residents locate their rooms. There are two small A-4 Skyhawk aircraft models and some family photos outside my father’s room. He notes one of the A-4’s.
Inside, the room is large enough but rather Spartan, as the family did not wish to make it appear, yet, that this was going to be a long term stay at the Unit. My father tells me the people are all very nice here.
“What is this place?” he asks.
“It is an assisted living facility,” I say.
He nods. He has a television and a VCR/DVD player with the wires connected incorrectly, so I am unable to get a video to play.
Morra, one of the caregivers from Aging Outreach Services, arrives, with her seven-year old brother and sister in tow. “I had to baby sit,” she says. She is young, attractive, and does well with my father, who likes to talk to young, attractive women. He also enjoys the kids, who are very patient and well-behaved.
Dinner is served pretty early in the day in the Unit. I sat between my father and another resident, Betty, who exchanges pleasantries but does not really converse with us. The food seems pretty good, although I do not eat anything. Eventually I hand off to Morra and go try to fix the VCR. Once I figure out the wiring, everything works, and I feel like perhaps I have accomplished something.
After dinner I let Morra go, as the kids seem a bit antsy and they have not eaten dinner yet. So then my father and I discuss life. He is adamant that I get to the bottom of the doctors plot to keep my mother in the hospital We have lied to him, telling him that my mother is in the hospital for a few days for some tests – that is the premise for him having to be in the Unit. He assures me his analytical mind senses a disconnect in what he is being told. Perhaps we have underestimated his cognitive abilities. Perhaps not. He restates his displeasure with the doctors several times, proclaims his confidence in my ability to get to the bottom of this all and find out if they have any plan at all, etc. Over and over. Again.
Eventually I leave him to his own devices, with an Alfred Hitchcock movie beginning in the common room. I get let out by the nurse, who punches in the code. I walk into the relative normality of the Assisted Living part of the building, then out to the night air which, although drizzly, is most welcome. I drive to my mother’s house and have a pleasant home cooked dinner with normal conversation, as if we were in a different world than my father. Which we were.
On Friday I went to the county court house and registered the AL powers-of-attorney for my parents with NC. Now I was legal to act on their behest in the Tar Heel State. For a mere $85. I was not asked for any identification, but the younger of the two women there was very attractive, in a very young sort of way, so I did not mind. The other woman there was older, almost Pinehurst old. I assumed she had procured the lovely window treatments in the office.
I walked into the Assisted Living Facility, which I will call ALF, with a torchiere lamp over my shoulder. My father’s room had seemed a bit dark, so I brought the lamp that was behind his big brown recliner in the house. We felt that bringing in the recliner at this point would clue my Dad in to the length of his stay in the Unit. The standard gauntlet of elderly women were there in the foyer.
“Hey, that’s a nice lamp.”
“I could use a lamp like that.”
“Why don’t you bring that up to my room?”
I felt like a piece of meat. Only the wolf whistles were missing. I suppose they would’ve whistled if they had had their teeth in.
As I entered my Dad’s room, I found him napping on the bed and Charlotte, from AOS, by his side. My father is very fond of Charlotte and she has grown fond of him over the course of the past year. We have been lucky to have such attentive assistance. Now that he was in full time care, though, in the Unit, we would have to gradually phase Charlotte out of the picture, so that my father would get used to the Unit staff. Charlotte told me her plan to begin decreasing her time with him, and when he awoke, groggy as all get out, she had the Unit staffers assist him with his toilet visit. It took him the entire proceeding to come to grips with where he was.
I sat with Dad at lunch. Betty was semi-conversant.
“How are you today, Betty?”
“Oh, about as good as can be expected in a place like this.”
I did have some iced tea. I forgot I had driven so far south, though, and the sweet tea almost gagged me on the first sip. I wondered how sweet tea affected my Dad’s diabetes, but sweet tea is a God-given right down in NC, so I suspect asking for unsweetened tea for the old man wouldn’t do much good. Dad loved the soup. Betty stomped off eventually, but Dad did not care as they gave him ice cream for dessert. That made his day.
After lunch I called my Mom so she could speak to my father. She told him she was coming home from the hospital but that she had to avoid stress, so Dad could not come home quite yet. After my father hung up the phone, he picked up the stuffed Labrador on his lap (“Tom had this custom made to look precisely like my dog”), kissed it on the nose, and said “We’re going home.”
I took a deep breath. “Dad.”
I explained to him that Mom had to avoid stress, and that he caused a lot of stress to her when he was home. Not intentionally, but taking care of him had taken its toll. Which was true.
He looked at me and said that if that was what the doctors said Mom needed, then he would stay put if it would help Mom.
I breathed out. “Great Dad.”
This was from the guy who had 30 minutes earlier asked me to procure a gun to shoot the doctors.
I spoke with various staffers that afternoon about various details of my father’s schedule. Just before leaving, though, I told my Dad I would be right back, and went to the far end of the ALF to make a barber shop reservation (that beard was getting shaggy). It was closed, but when I came back into the Unit, my Dad looked surprised, and happy, to see me. As if I hadn’t just been there. Hm. I took leave of him when I handed him a pack of Fig Newton cookies, which he had swiped off a desk but I had swiped back. He shoved it into his mouth, dropping crumbs down his belly and on to the floor. There were crumbs in his beard, but I was on a timetable, and, after all, there were staff there to deal with such problems.
It was closer to the average child, drivable in less than 7 hours by four of the six (California and Asia being a bit more distant), reasonably temperate, closest to my sister (which got it my vote), and basically across the street from all required medical services, as opposed to an hour-plus drive from every required medical service. Pinehurst was not as picturesque as the waterfront home my parents left behind on the Gulf of Mexico, but it was a damn sight more amenable to their needs. Still, this move was a rather odd development in their lives. It was not planned on their part, it was not a dream of theirs to be in NC, and it was wholly brought about by the pressure of the family to move themselves from their hurricane magnet of a house to a more benign environment.
So, were we right to do so? Did the benefits outweigh the costs of the move, of the upheaval in the lives of my mother and father? We think so. Even if the move exacerbated my father’s dementia, perhaps accelerating his Alzheimer’s development, the improved care, for both of my parents, more than offset that negative. It might by presumptuous and arrogant to push one’s parents into such a move, but there comes a time when old folks may not be able to act in their own best interests. And that becomes the crux of the relationship between elderly parents and their offspring. The children can find themselves in a position better suited to drive decisions that must be made regarding the well-being of their parents. It is a role reversal, truly, wherein the role of mentoring and oversight is taken over by the younger generation.
Once the average person simply buried his parents, who succumbed to illness or the vagaries of the elderly. With the advent of gerontology and medicines that control the ravages of time, though, many people are being kept alive longer, and, in the case of Alzheimer’s patients, are being kept physically alive even as they are mentally dying. My father signed a Health Directive, luckily, one year ago, specifying his wish to not be kept alive by extraordinary means, and placing the determination of this status in the hands of my sisters. This type of directive, or “Do Not Resuscitate” order, is becoming commonplace, but it deals with purely physical matters. I suppose if my father was legally brain dead we would honor his wishes and not allow artificial life support. The disease he is suffering from, however, will not leave him brain dead. Alzheimer’s will gradually destroy his mind, but there tends to be something of a person left inside, and you have to wonder what is going on inside his head even as his ability to control bodily functions declines.
In the old days, as they say, these people would be unable to fend for themselves, would be a drag on a subsistence level household, and would succumb to their disease relatively quickly. Some Inuit tribes in Canada would abandon the decrepit elderly and move on, leaving them to die of exposure and starvation. Generally, though, the average lifespan was shorter in the past, and many people never lived to the age where dementia and Alzheimer’s disease now strike. The fact that Americans are living longer makes them more likely to fall prey to the diseases of the brain. The larger number of people experiencing these diseases makes it more likely you will know someone who is afflicted. In typical American fashion, as the likelihood of Alzheimer’s increases and looms on the horizon for the Baby Boomers, there is an outcry for research into finding a cure for the disease. No one wants to be the last person diagnosed and untreated for Alzheimer’s.
Which gets me to my point. There is a possibility of getting these dread diseases. You should not focus all of your attentions on this possibility, but a little planning can go a long way. After seeing how this sneaky disease blindsided my family, it is obvious that some consideration of the possibility of Alzheimer’s striking my father could have helped us act more quickly. The spouse of an Alzheimer’s patient tends to hide the symptoms of onset, either ignorant of what they are or unwilling to face the truth. This head-in-the-sand reaction is apparently prevalent and understandable. Losing your spouse in slow motion to the disease is a sad lot, and denial can buy you time until you are forced to accept it. This might lessen the early impact on the life of the patient and his spouse, but ultimately it masks the developing problem and can prevent some meaningful discussion taking place before it is too late.
Because eventually it will be too late, as that is the nature of the disease. My father was an analytical person. He told me so several times today – in fact, that he still is. His current condition, however, precludes making a sound analysis of his life, his situation, and his illness. Although he is aware that his cognitive abilities are declining, in his already progressed deterioration, he is unable to discern how far his mental faculties have declined. In other words, with the brain power he has left, he cannot make an accurate judgment of where he is on the spectrum of mental acuity. He wanted to drive when it was obvious to everyone else that he was mentally unfit for the task. He claims to making grand plans when he is actually suffering from dementia. It is a heart rending thing to watch, and it appears to be inevitable once the disease starts to progress.
And that is why I will make myself some semblance of a plan if I feel that Alzheimer’s might become my personal diagnosis. This does not require minute detail, simply the outline of what is to be done. In my father’s case, my mother and he were stuck in limbo, dealing with daily decay but not doing much about it. The intervention of their children resulted in their successful relocation, but it was very stressful for all involved. With some foresight, some actual rational thought as opposed to wishful thinking (“we’ll never move from here” (our second story walk-up on a little island in hurricane country an hour from medical facilities)), this evolution would have been much less stressful, especially for the children who spend their time second-guessing pushing their parents in these matters. So, that’s an ideal to shoot for – a contingency plan. When you are retired you ought to have the time to come up with one in case your retirement daydreams do not pan out. And after what my family has been through this past year, I hereby promise my kids I will not leave them in the situation where they must make all the decisions with no guidance whatsoever from my (currently) rational analytical self.
So there they are in NC. The Tar Heel State. A nice place to visit, but I personally abhor Pinehurst for what it is to me. Pinehurst is a place we evacuated my parents to, the place my father will likely spend the rest of his days in the “Memory Unit”, nice as it is, and gradually decline to death. There are a lot of active oldsters thereabouts, plenty of people with energy and a sparkle in their eyes, who perhaps need some assistance to get the most out of the days they have remaining to them. With Alzheimer’s, though, it is unclear to me what it is that my father gets out of the days that are still ahead of him. There is still a hint of his personality left, and the occasional burst of lucidity that gives you false hope, which you can enjoy together and take home with you as a keepsake, a meager portion of what once you took for granted, but the person who was once my father is gone. His body is inhabited by a portion of the man he was, and for that I am grateful, but the long gradual descent into Alzheimer’s is essentially a protracted, irreversible, and painfully long goodbye.
So what of the DNR, or the Health Directive? Should I buy a piece of an iceberg from the Inuit and send him off to sea, in a frozen version of a Viking funeral, cracked off from the ice shelf by global warming? Is the intersection of global warming and Alzheimer’s somehow a fitting end to man’s time here on earth?
Less plaintively stated: At what point are we keeping our father alive with extraordinary means?
On the lighter side:
I visited my father in the Fox Hollow “Memory Unit” today. That is their euphemism for the Alzheimer’s wing of the Assisted Living Facility. We decided to “place” our father in a “facility” due to the continued slide into dementia, the decline of my mother’s physical health due to the toil of caring for my father, and the none-too-subtle urging of his doctors. So, Dad has been here since Monday noon. I arrive Thursday afternoon.
I sign in at the front desk after walking through the front foyer of elderly types awaiting rides. Some doze, some are lively, some say hello. I smile at the old people. Say hello. Make my way down to the Memory Unit door.
I suppose I need a nickname for the Memory Unit. “The Unit” is a bit bland. The “MU” is weak. “The Home” has negative connotations amongst the elderly but everyone can invoke a mental image when you say that. My father has a deep seated fear of insane asylums or loony bins or psycho wards, so those terms, incorrect as they all are, are definitely off limits. He is in the “West Wing” of the building, so that is a little catchy, given the TV show and the supposed import of the location, but I currently and probably forever will hate politicians, so I find that unpalatable. I reach the door without deciding upon a name for the Memory Unit. Perhaps they really did look at all the alternatives.
The door opens normally from the outside – to exit, however, you need a code. I crack the door and peek in to make sure there are no potential escapees loitering nearby. I have learned to be suspicious of anyone near the door into such a place, and I want to spare myself the potential embarrassment of running down a fugitive from the . . . Memory Unit.
The only resident I see upon entry through the door is my father. He is leaning on the doorway into the nurse’s station, demanding a snack. He has always been big on snacks. The most basic attributes of an individual seem to stay with Alzheimer’s patients, so this is putatively positive although possibly annoying for the staff. I stand behind him for a few minutes to observe how he is interacting with the staff. Since the nurse, Tanya, deals with Alzheimer’s patients daily, she is very professional but not unsympathetic with him, and eventually several packs of potato chips arrive and a cup of cranberry juice. He is glad to see me, and smiles, but I perceive a bigger smile when the chips arrive.
After chatting for a while about his new digs, my father claims to have tried over and over to get the organ against the wall to work. I step over and note that it is unplugged. The administrator of the Unit promises to get it moved over to a nearby socket, despite my warning that my father will likely try to play something on it. He has already joined in with the devotional singing group, loudly, so Dee, the manager, smiles and says that they actually encourage that kind of behavior.
Eventually my father shows me his room, although there is some difficulty recognizing it. Outside each room is a small window box with mementoes and photographs to help the residents locate their rooms. There are two small A-4 Skyhawk aircraft models and some family photos outside my father’s room. He notes one of the A-4’s.
Inside, the room is large enough but rather Spartan, as the family did not wish to make it appear, yet, that this was going to be a long term stay at the Unit. My father tells me the people are all very nice here.
“What is this place?” he asks.
“It is an assisted living facility,” I say.
He nods. He has a television and a VCR/DVD player with the wires connected incorrectly, so I am unable to get a video to play.
Morra, one of the caregivers from Aging Outreach Services, arrives, with her seven-year old brother and sister in tow. “I had to baby sit,” she says. She is young, attractive, and does well with my father, who likes to talk to young, attractive women. He also enjoys the kids, who are very patient and well-behaved.
Dinner is served pretty early in the day in the Unit. I sat between my father and another resident, Betty, who exchanges pleasantries but does not really converse with us. The food seems pretty good, although I do not eat anything. Eventually I hand off to Morra and go try to fix the VCR. Once I figure out the wiring, everything works, and I feel like perhaps I have accomplished something.
After dinner I let Morra go, as the kids seem a bit antsy and they have not eaten dinner yet. So then my father and I discuss life. He is adamant that I get to the bottom of the doctors plot to keep my mother in the hospital We have lied to him, telling him that my mother is in the hospital for a few days for some tests – that is the premise for him having to be in the Unit. He assures me his analytical mind senses a disconnect in what he is being told. Perhaps we have underestimated his cognitive abilities. Perhaps not. He restates his displeasure with the doctors several times, proclaims his confidence in my ability to get to the bottom of this all and find out if they have any plan at all, etc. Over and over. Again.
Eventually I leave him to his own devices, with an Alfred Hitchcock movie beginning in the common room. I get let out by the nurse, who punches in the code. I walk into the relative normality of the Assisted Living part of the building, then out to the night air which, although drizzly, is most welcome. I drive to my mother’s house and have a pleasant home cooked dinner with normal conversation, as if we were in a different world than my father. Which we were.
On Friday I went to the county court house and registered the AL powers-of-attorney for my parents with NC. Now I was legal to act on their behest in the Tar Heel State. For a mere $85. I was not asked for any identification, but the younger of the two women there was very attractive, in a very young sort of way, so I did not mind. The other woman there was older, almost Pinehurst old. I assumed she had procured the lovely window treatments in the office.
I walked into the Assisted Living Facility, which I will call ALF, with a torchiere lamp over my shoulder. My father’s room had seemed a bit dark, so I brought the lamp that was behind his big brown recliner in the house. We felt that bringing in the recliner at this point would clue my Dad in to the length of his stay in the Unit. The standard gauntlet of elderly women were there in the foyer.
“Hey, that’s a nice lamp.”
“I could use a lamp like that.”
“Why don’t you bring that up to my room?”
I felt like a piece of meat. Only the wolf whistles were missing. I suppose they would’ve whistled if they had had their teeth in.
As I entered my Dad’s room, I found him napping on the bed and Charlotte, from AOS, by his side. My father is very fond of Charlotte and she has grown fond of him over the course of the past year. We have been lucky to have such attentive assistance. Now that he was in full time care, though, in the Unit, we would have to gradually phase Charlotte out of the picture, so that my father would get used to the Unit staff. Charlotte told me her plan to begin decreasing her time with him, and when he awoke, groggy as all get out, she had the Unit staffers assist him with his toilet visit. It took him the entire proceeding to come to grips with where he was.
I sat with Dad at lunch. Betty was semi-conversant.
“How are you today, Betty?”
“Oh, about as good as can be expected in a place like this.”
I did have some iced tea. I forgot I had driven so far south, though, and the sweet tea almost gagged me on the first sip. I wondered how sweet tea affected my Dad’s diabetes, but sweet tea is a God-given right down in NC, so I suspect asking for unsweetened tea for the old man wouldn’t do much good. Dad loved the soup. Betty stomped off eventually, but Dad did not care as they gave him ice cream for dessert. That made his day.
After lunch I called my Mom so she could speak to my father. She told him she was coming home from the hospital but that she had to avoid stress, so Dad could not come home quite yet. After my father hung up the phone, he picked up the stuffed Labrador on his lap (“Tom had this custom made to look precisely like my dog”), kissed it on the nose, and said “We’re going home.”
I took a deep breath. “Dad.”
I explained to him that Mom had to avoid stress, and that he caused a lot of stress to her when he was home. Not intentionally, but taking care of him had taken its toll. Which was true.
He looked at me and said that if that was what the doctors said Mom needed, then he would stay put if it would help Mom.
I breathed out. “Great Dad.”
This was from the guy who had 30 minutes earlier asked me to procure a gun to shoot the doctors.
I spoke with various staffers that afternoon about various details of my father’s schedule. Just before leaving, though, I told my Dad I would be right back, and went to the far end of the ALF to make a barber shop reservation (that beard was getting shaggy). It was closed, but when I came back into the Unit, my Dad looked surprised, and happy, to see me. As if I hadn’t just been there. Hm. I took leave of him when I handed him a pack of Fig Newton cookies, which he had swiped off a desk but I had swiped back. He shoved it into his mouth, dropping crumbs down his belly and on to the floor. There were crumbs in his beard, but I was on a timetable, and, after all, there were staff there to deal with such problems.
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