Freedom and Locked Doors

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.