On Being There

Being there.

That phrase distills the nature of support for one’s elderly parents to its essence. Once the years close in and the elderly find less reason and energy to venture forth, being available to them, whether by phone or in person, is the best way to show your love for them. (Note that I did not mention e-mail or instant messaging or internet webcams. For my parents, at least, these means of communication are not part of their lives. Eventually the elderly will be able and willing to use these avenues to keep in touch, but they do not deliver the same personal contact as the phone or the face-to-face.)

My mother called me last night to discuss various items, but the most important facet of the discussion was the discussion itself. Early in the telephone conversation, I detected the strain and stress in her voice. After allowing her to speak at length, engaging her in further conversation despite her suggestion I had better things to do, the tension in her voice was gone, and we had both relaxed and passed beyond the “what needs to be done” stage to the “what’s going on” stage. Obviously every person should be so gracious as to allow his mother the time to speak – my mother happens to speak a lot. Sometimes, though, it is the obvious that bears repeating. The simple act of listening and giving your time to an elderly parent is in itself restorative. And your parent is genuinely appreciative of this, at some level.

I know that one of my brothers has the knack of upsetting my mother when he speaks with her via telephone. He has her interests at heart and is all too willing to help, but he apparently does not recognize the inherent value of a pleasant conversation. In this case, it is a matter of understanding my mother, who is stubborn at times, but values the process of the discussion. When something needs to be done, you cannot simply tell her to do it, you must get her to see your point of view – otherwise you are wasting your time. I suspect this is often the case with the older crowd, set in their ways and, in their opinion, well-versed in the ways of the world.

My father used to tell a joke, the punch line of which has transmuted into a family folk saying – “Don’t try to teach a pig to dance. It will only frustrate you and irritate the pig.” It is perhaps only a more folksy way of saying you cannot teach an old dog new tricks, but it indicates that you need to know the intrinsic capabilities of those you are dealing with. And the old dogs do have their limitations. As in most arenas, when dealing with elderly parents you do what you can.

The notion of being there is somewhat different for my father. Phone conversation has become untenable, stripped of the visual cues you need to effectively discuss anything with Dad. In his case, we find ourselves regularly visiting in the hopes of actually making a connection. This is not a given, whether you spend one hour or seven with him, but seems to be a matter of random chance. When my father is in a semi-lucid state, there are the rewarding glimpses of his personality and the person we knew our entire lives. Even so, these are genuinely short glimpses of late. The window of opportunity is very small, so you must be on guard for your chance. My brother – the one who has the ability to make my mother hang up the phone – makes it a point to tell my father that he loves him during these windows of true contact. John will seize those moments and make the most of them. He has a list of what he wants to say (I love you, I forgive you, please forgive me, etc.) He has a plan for these moments. Most of us respond to these opportunities as they arise, but do not actually have a plan. We attempt to use them to make a connection, prolong our relationship with our ever-fading father, but we do not really use them to make peace, to wrap up our relationship.

I think my brother’s approach is better. You can view the situation of speaking with a parent in the latter stages of Alzheimer’s in the same way that you would approach any opportunity that only extends itself for short bursts of time. You plan ahead to view a solar eclipse. You set a camera on a tripod to catch the right moment in time. You watch intently for the time to make your move in sports competition. My father is rapidly slipping into the latter stages of Alzheimer’s disease. His diction is typically clear, but unrelated to the exterior world. His brain is working on something we cannot see or often guess. But there are the windows of clarity still. They are short, they are random, they are unpredictable, but they are there. The only way to take advantage of these windows is to plan ahead, to plan what to say, to keep things simple and unmessy and straightforward and distilled to the essence of our relationship, which is loving and caring for one another.

And the only way to accomplish this is by being there.

To My Father, in the Memory Unit

To my Father, in the Memory Unit at Fox Hollow

Thoughts whisper and beckon
Just beyond reach
Memories linger
On the edge of recognition
Faces fade, then meld
Into something familiar
But unrecognizable
Until the world is daily anew
And confusing
As in the first days
Of your life.

Vague notions of a past
Before this morning began
Flit past the window
While you stare through the glass
Wondering where you are
Spending your days
With meandering thoughts
That do not even make sense
To you
Even less to those people
The ones who surround you
Caring but distant
These are the last days
Of your life.

Synapses fire
In random succession
Thoughts parade by
Trying to connect
They remain isolated
And isolated, they wither
Rendered impotent
By the lack of completion
They trail off, a sentence left hanging
Without a satisfying conclusion
Your logic fails you
Your words fade away
These are the final days
Of your life.

Cognitive misfires
Obsessive delusions
Misconceptions
Daily confusions
Too much sadness
Descent into madness?
Questioning God
And the heavens above
Seeing your family
Feeling the love
That bridges the chasm
Between your past and your present
The only feeling
Truly transcendent
That lingers on clearly
Like a dear old friend
As people become strangers
As you near the end
Of your daily struggle
To make sense of your world
The one true constant
Of your life.

You may have forgotten
More than you know
But others share your memories
Keep them alive
Relive the good times
Of your life.

You may have forgotten
People that you know
But we are your memories
We are alive
Your family lives
The legacy
Of your life.

A Visit to Fox Hollow

Today I saw my father for the first time since he was released from the hospital two weeks ago, a stay during which the family agreed to stop the aggressive medication regimen he had been on. Since his return to the Memory Unit at Fox Hollow, I had heard from other visitors that his behavior was more erratic, his thoughts and speech less clear than even a month ago. So I went down to Pinehurst NC to see for myself. I brought my elder daughter Cindy along, bribing her with the opportunity to hang out with her favorite cousin Katie in Durham. And the opportunity to skip a day of school.

When we walked into Fox Hollow, ambling through the hallway between the elderly denizens, we both felt very young. My father was sitting in a wheelchair, watching something on the television in the common room area of the Memory Unit. Yawning. He smiled to see me and shook my hand. I pointed to Cindy, he smiled, and asked her name. After she told him, he said he had been kidding, but I suspect he was not. We were not able to hold a very coherent conversation. Essentially, each sentence my father spoke tended to peter out before reaching a conclusion, and each sentence was entirely independent and, from my viewpoint, unrelated to the sentences immediately preceding and following. It seemed very difficult for him to speak with me.

Then Charlotte, his regular AOS caregiver, who spends mornings with him Monday through Friday, and with whom, essentially, he has more interaction than any other person, walked through the door. Dad lit up, smiled, held out his hand, asked where she had been, what she was doing, and if she would marry him. She answered all of these questions, and I abandoned Cindy with her grandfather to get a quick update from Charlotte as she delivered a supply of very large diapers to my father’s room. He had been getting to physical therapy for his legs every morning, and it took a full two hours due to his lethargic pace. But he made this effort in her presence. She was upbeat about the PT, and we discussed finally getting a handle on the rate of diaper use and arranging a regular delivery from a supplier.

After Charlotte left, my father returned to his rather less enthusiastic vocalizations with me. He reverted to seemingly random comments. Most of these were apparently attempts at sorting out a problem; his mind would be trying, in fits and starts, to analyze something, and his words were his disjointed conclusions. Everything from the grab rail in the bathroom to the fabric of my jacket triggered this type of comment. What I never seemed to trigger, though, was the type of genuine focus that my father demonstrated when a female of interest walked into the room, whether it was Cindy, Charlotte, or my mother.

So I am left with the conclusion that I, third son from the father, do not quite rate any more. Although my Dad recognizes me, and seems to appreciate my visits, his mind does not rise to the occasion and put forth its best efforts when I walk in the door. That level of mental exertion is reserved for women in general, and the important women in his life, more specifically. I do not feel personally slighted, of course, because this is apparently a manifestation of the Alzheimer’s and my father’s brain prioritizing what to use its remaining capacity to focus on. I feel like I have slipped a little bit into the periphery of his consciousness, though, perhaps sooner than I expected – although I cannot say I consciously anticipated this happening.

Once again I am left with the feeling that my father’s disease has progressed more quickly than anticipated. He stayed in his wheelchair this weekend, although I know he walks for PT with Charlotte. My own exertions with assisting him in getting in and out of the wheelchair to use the bathroom were very strenuous, even when I employed the aid of “T”, the very large fellow who works afternoons at Fox Hollow (I call him Mister T in deference to his scary size (nice guy, of course)). During one of these extended operations in the bathroom, though, it became very clear to me that we had made the right decision to “place” Dad in a care facility. There was no way my mother could deal with him in his current condition – it would have required two round the clock care givers, not just one – unless they were all the size of T. And if he were at home, he would not have been able to attend the cheese and cracker social in the non-locked-door side of Fox Hollow, with its soulful sing-along of Amazing Grace and other familiar tunes. And we would not have appreciated his loud singing at home as much as the residents of the senior living facility.

My mother and I were discussing all of these events during the weekend, and how we make choices and press on with life. You can try to second-guess the decisions you have made dealing with Alzheimer’s, the choices in moving, medical treatment, placement in a facility, but you can never know how alternative courses of action would have turned out. Maybe better, maybe worse. My father’s sisters recently began visiting more regularly, and after we decided to stop some of his medications, became very concerned and wanted to have a nurse in Ohio talking to our AOS case manager, Jennifer, etc. What they did not try to do was voice their concerns directly to those of us who had been dealing daily with my father’s afflictions and making the hard decisions of the past several years. We, his wife and his children, realize they are reacting emotionally to his worsening condition, and we are obviously willing to maintain a dialogue with them regarding his care, care which has fallen upon us to insure. What we are not willing to do is suffer second-guessing of our long-debated decisions regarding the life of our father and his eventual death. Nothing in the painful process of dealing with Alzheimer’s comes easily nor is any decision made lightly. For someone who has sat on the sidelines during the gradual decline of a loved one to insinuate those who have been carrying the burden of care are somehow in the wrong is reprehensible. It is a difficult enough journey when you naturally find yourself second-guessing your decisions, it does not need to be made that much more difficult by others doing so.

Just A Few Thoughts

My father’s brain works mightily to convey thought. Unfortunately, it more closely resembles an engine with only one cylinder firing than a well-oiled machine. He strains to retrieve words. He strains to make and voice the connections between his thoughts. To the observer, the logic is partial and fleeting, but his synapses only randomly obey their master, and his meaning must be second-guessed, buried, as it is, beneath layers of inefficacy and forced inarticulateness. With patience and concentration, however, his logic can be discerned. Sometimes.

My father flew jets in the Navy and then went on to government and private sector work in the defense industry. He prided himself on his analytical abilities, on his proclivity for detailed and thorough and thoughtful analysis of complex issues. He reveled in his talent to deconstruct problems and synthesize solutions. Smart man. Alzheimer’s disease has managed to corrupt the connections in his brain, though, and refuses him the satisfaction of cogent thought. His pride and joy has been taken from him, wresting away a large element of his self-worth and personal concept of his own identity. I imagine this is in itself depressing. Very.

Shorn of his long held concept of himself, it is no wonder that my father at times exhibits stark confusion. He forces himself to reign in the fear associated with these moments, gradually realizing where he is, who he is, hopefully who others are. Like the first few moments as one awakens from a dream, he faces the curious dilemma of having to establish what is real and what is fantasy. Like the awakened sleeper, he gradually becomes aware of what is around him. Unlike the fortunate sleeper, though, he does not come to the eventual awareness of being fully awake. His world is informed by confusion throughout the day. I often wonder what his dreams are like. I must ask him some day. Soon.

Consensus

Today my father was released from the hospital. He is going back to the Alzheimer’s wing of the assisted living facility Fox Hollow, but during the course of the past few days his life has been changed.

Last week, he was doing well adjusting to life in the Memory Unit, and seemed to be better off than he was even at home. After suffering a few successive falls in his room, though, he wound up in the hospital with an IV in his arm for dehydration. When he left this week, returning to his “home” at Fox Hollow, he had been taken off a number of medications, including insulin, and hospice care was arranged to begin immediately. This change in his care was not an easy decision for his family, my mother, siblings, and me, but this point in his steady demise from Alzheimer’s was inevitable. What caught us off guard was the rapidity with which we reached this point.

Alzheimer’s is essentially a terminal illness. There is no stopping it. It can be slowed and ameliorated, but, unless something else kills you first, it will drop your mental activities to something resembling the status of “brain dead.” To most people, this is the end of life, whether your body is still ticking or not. “Brain dead” means your brain stem, responsible for the most basic of your bodily functions, is not functioning properly – often it fails to regulates breathing, the lungs stop working, and the brain then dies from lack of oxygen. Brain dead refers to irreparable damage to the brain. Alzheimer’s also causes irreparable damage, but it accrues gradually.

Contrasted to brain dead is being in a vegetative state. A vegetative state is an ongoing lack of response to stimuli, although the person might have his eyes open (as opposed to a coma, where the person’s eyes are closed). This state might be temporary for some, but for an Alzheimer’s patient, it can be expected to be permanent. Many times my father told us he did not wish to continue living as a “vegetable.”

Which brings me back to my family’s decision this past week. Despite the reassuring way in which he settled in to life in the Memory Unit, Dad is going downhill fast. His doctors have aggressively tried to mitigate the onslaught of the disease, but his Alzheimer’s has progressed more rapidly than we ever expected. Whenever I discussed his condition with professionals in the health care industry, their initial comment was typically “he’s so young” (he is now 77). Certainly, to me, the difference in his health over the past 15 months, since my return to the US, is staggering, and heartbreaking. The doctors assure us he will continue to decline at this pace.

The option our family chose for my father was to cut back on the medications he was receiving that dealt with his long term ailments. Doing this would bring his body in line with his brain – in other words, he could be expected to deteriorate physically as his brain function receded. This will supposedly result in his death sooner than is medically possible, but before he becomes brain dead, or, hopefully, before he becomes, in his word, a “vegetable.” This decision is completely aligned with all guidance my father provided us when he was able to do so coherently, and with what we believe is in his best interest.

So how do I feel about saying yes, let us hasten the death of our father? Perplexed, at one level, that this juncture came so soon, but relieved, on another level, that I can foresee an end to his pain. Sometimes, when I speak with my father, I can see the confusion and frustration in his face as he struggles to make coherent conversation. Some days he does well, and I can follow what his mind is trying to convey. Other days, not so much. But always I am thinking about the mental capacity he once had, and what a major part that played in his life. I know he is too. Although he puts a brave face on it (lately decrying the driving statutes in NC and scheming to rewrite them), this is depressing for him.

On his good days, I have to second-guess our decision to “let him go.” But the good days are numbered, according to the medical professionals, and we need to enjoy them while we can, because, despite our fervent hopes or prayers, Dad’s mental faculties will continue to deteriorate until his personality, the man we have known for our entire lives, is gone. And then confusion reigns. And death is not unwelcome.

Foreward (first written, posted late)

Today I signed the agreement to put my father into an Alzheimer’s care facility. I would like to say it had been a long and tortuous path to this event, but it all seems to have happened very quickly. One year ago I asked my father to sign a general power of attorney form for me. He was very worried at that time that my mother would put him away in an insane asylum and take all of his money. I have a feeling that next week he will be thinking that she got away with it.

Alzheimer’s is a vicious little shit of a disease. It manages to steal away your loved one before you have a chance to say goodbye. Then it leaves behind a body, like a molted shell of an insect, eerily familiar on the outside but vacant. Of course, it is a gradual process, and daily contact can make it nearly imperceptible, until it crashes in on your awareness as quantum recognition of what has been lost. And then there is the constant hope, the quintessential human emotion, which paints the bleakest horizon a slight bit lighter than it can be. Maybe today will be better. Maybe. But eventually tomorrow will be worse, and the unrelenting certainty of that is what you want to ignore, what you want to avert your eyes away from, and the stark truth of Alzheimer’s. No one gets better. No one recovers. Everyone either eventually slips away into a personal haze or dies before they make it there.

At this point I think I would rather die. Alzheimer’s scares me. Flying off aircraft carriers at night and zipping between unseen mountains in the dark with another 20-something-year-old sitting next to me did not scare me. Mountain biking on the edge of sheer cliffs doesn’t scare me. Having teenagers doesn’t scare me. But this disease does. I believe I now understand what the old writers meant when they said someone felt a sense of dread. I dread Alzheimer’s.

But to every nasty foreboding ugly dark cloud there is a slight tinge of silver on the edge, barely visible unless you squint, at least at my age. In the case of my father’s plight, it is my family. This latest bout of hardship has brought us closer together. It is the first time we have had to stand together and face the gradual demise of one of our own. My three brothers and two surviving sisters did have to go through the wrenching loss of my oldest sibling, Mary, and her son, Robert, the eldest of the grandchildren, some 7 years ago. That was a sudden, brutish, senseless loss, the result of a teenage driver driving like a teenager. It was then that I saw that my family could come together and share some moments that were meaningful and bonding despite the overbearing sense of grief. Not everything that happens at a funeral is sad. The fellowship can be transcendent and affirming. You might feel a little guilty, but there is something to be enjoyed in those gatherings of dark-clad mourners.

A funeral, though, is a moment in time, a generally agreed upon time to air out the grief, to exchange the commiserations, and to shed the tears. It is over in a few days. The grieving, of course, can last the rest of one’s life, but the catharsis is the funeral or the wake or the spreading of ashes or the memorial service for the ones who never returned home. Although the pain and grief like to hang around, there is a sense of closure, at least in the physical sense – you will not see this person again. You buried him, you spread her in the Atlantic or in her rose garden, or you accepted the fact that they were victims of a sinking ship/exploding jet/collapsing skyscraper.

When you have to go face to face with the person you are grieving over, though, there is no sense of closure, though you are already feeling the loss. It is a bizarre twist in the panoply of grief – you sense the loss but you cannot say goodbye, because, hey, there sits your loved one, inside their shell of familiar flesh, behind uncomprehending eyes. I used to wonder what it would be like to lie in a coma, with people going by everyday, throwing out your thoughts to them, demanding they talk to you, but unable to move, unable to get their attention, unable to help yourself. Trapped in your body. Now I wonder what it is like to have Alzheimer’s. Will there always be a measure of recognition that you have lost something, but you are not sure what it was, unable to coherently think it through? Trapped in your brain. I do not know which is a worse fate, and I hope to never find out. I also used to have a fear of being buried alive, but at least that is something for which the “Worst Case Scenario Handbook” or Part Two of “Kill Bill” can prepare you. No one recovers from Alzheimer’s and writes a how-to manual. I suppose it would be a best seller though.

Standing by peaceful waters, near my parent’s home in Orange Beach, Alabama, on an island prophetically called Ono, barely a year ago, I was one of the uninitiated, hopeful, dismissive onlookers, with no real clue how quickly my father’s mental condition would deteriorate. Of course, that is one of the unknowable parameters in the world of dementia, but it sure seems as if we were hit with a worst case scenario. Since then, though, I have learned that the basic symptoms of the disease started long ago, and were manifest during the two years I lived in England and only briefly saw my parents one Christmas holiday. I suppose one of the huge lessons for me has been that you better spend quality time with the old folks. They could be unreachable before they decline physically.

My brother is a lawyer. He thinks like a lawyer and speaks like one, although he does not live his life the way I think lawyers generally do, in my narrow minded bigoted perspective. Hey, there’s a reason for all of those lawyer jokes. Anyway, his approach to this entire devolution has been predictable, trying to get a lot of information, sifting through it all, weighing alternatives, encouraging discussion, lots of discussion, input from all parties, and more discussion, then making decisions and taking action. I suppose his formula is at least as effective as mine, which is to withdraw emotionally, grit my teeth when required to take action, and effectively sliding into depression. Not the most admirable of plans, but there it is. At least it didn’t drive me to drink. Well, except for last weekend.

The various reactions, actions, and emotions of my siblings and mother were predictable. There is a lot written about the relationships in a family, how they are carried throughout life, playing out in a recurring pattern. This seems to be true, from my experience. Each of us fills a role, fulfills expectations, and contributes in his own way. The lawyer makes sure we cross the t’s and dot the i’s. The distant, world-traveling engineer picks out courses of action that are technically correct for lesser issues, but do not display a wide knowledge of the situation. The youngest brother has a different perspective, worries about things I do not, and talks more than I consider necessary when making his points. I keep quiet and listen, as that has become my role, until I find no one is saying what I really feel needs to be said and need to end one of our interminable conversations.

The females are predictably more emotional about all of this. My mother is distraught over the loss of her husband and companion of 55 years. She is an old school wife, she feels like she should have done better, could’ve somehow improved the situation over the years, and is reluctant to let hope slip away. My oldest sister is in heaven, looking down on us, and, perhaps for the first time since her tragic demise, happy that she is not going through this with her siblings. The sister in California feels close to impotent, although she has been a constant comfort to her parents and a leader in the decision making process. The sister in North Carolina is the closest geographically, and perhaps closest to our mother. She sees the placement of the old man in a care facility as necessary to insure the health of our mother. Which it is. To her, though, it is a moral imperative. To me, it is a consideration, which makes me callous I suppose.
So here we are, the typical dysfunctional family. With the obvious shortcomings we all have, there are the opposing strengths. Between the six of us siblings, there is a super-human endowed with all of the traits necessary to make humane and correct decisions and act responsibly on behalf of both of our parents. The trick is organizing the many-limbed superhero. Electronic communications make this process possible, and I believe we will make our father proud in how we handle this situation. That is, once he stops resenting our placing him in what he will consider an insane asylum, and also assuming that he recognizes us as his children. Those are basically the two things for which I am hoping.

John Prine has a song, “Souvenirs,” in which he cannot forgive the various things that rob him of his memories, of his childhood, his loves, and his family. I hate Alzheimer’s, for it always brings me tears, and I cannot forgive the way it robs me of my souvenirs, and my father. I want to taunt Alzheimer’s, say, “My name is Steve Dapogny. You killed my father. Prepare to die.” That does give the impression that I am angry. Yes, I am. I have several stages to go through before I reach acceptance.

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.

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.