Finally. Let’s hope other scientists follow in their footsteps and make “rare” a marker of the past:

No one would own the data. No one could submit patent applications, though private companies would ultimately profit from any drugs or imaging tests developed as a result of the effort.

“It was unbelievable,” said Dr. John Q. Trojanowski, an Alzheimer’s researcher at the University of Pennsylvania. “It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”

I did not think this day would come anytime soon. When the time came—when the time came for my mom to pass on—I thought I would be not only be accepting and ready but would welcome it with open arms. After a decade with Alzheimers, after two years bound in bed, and after months of barely able to sculpt even a word, I thought I was ready to see my mom breathe her last breath.

But when the end came, the surprise, shock, and sadness were unmistakably there and I was silently urging my mother to keep fighting to breathe. In the end, it was her lungs that took her from this life as most everything else was still running smoothly and strong. She smoked like a chimney, so when she got pneumonia in late April, her diminished lung capacity made it hard for her to breathe, to get the oxygen needed to be present. But I expected a full recovery as she had reacted almost immediately and positively to the antibiotic treatment. She was still physically strong as a horse, for example, during this hospital stay, three of us had to hold her down when we did various tests.

But one day to the next her blood pressure plummeted. Since I was unaware of this, I thought she was just (and finally) sleeping deeply after two days of barely doing so. After 8 hours of barely moving, the nurse let me know that in fact her vital signs were dim as were her chances of living. That evening, I crawled into bed with her for one last night together. Finally the next morning, as I was stroking her face, I witnessed her final breath.

This is what I read at her service.

The Chronicle recently published a piece that drew a lot of attention on the difficulties that female academics with kids face during the first 4-7 seven years of their job when academics are expected to do nothing but produce, produce, and … produce and yet because they have produced children, they can’t produce all that much writing. I don’t share the author’s predicament in that I don’t have kids. But I have had to be an (often long-distance) caretaker for the last 8 years, 4 of which I spent considerable time in PR taking over my mom’s caretaker’s duties.

Although when it comes to female academics and kids there is a lot that can (really must) be done to facilitate a career and motherhood, when it comes to taking care of my mom, being an academic has been an odd and mixed blessing, although it did require me to play with the system self-consciously or else it would have been an early academic death.

When my mom was first falling pretty ill, I was wrapping up my dissertation. Though I was ready (on paper at least) to go on the market, I did not step foot in it. I knew that if I landed a job it would be the end of seeing my mom and since she only had a few years of capacity left, I decided to 1) apply only for one postdoctoral position (that had no teaching and was in NJ making it very easy to fly home frequently) 2) if I did not land it, I would return home to spend time with her, keep on writing but not graduate. If I had started a job right after my dissertation, I would have killed my chances of churning out articles, and worse, not have seen much of my mom.

I was lucky enough to land this postdoctoral fellowship, which was a life savior. I was able to get a heck of a lot of work done that I would never ever would have been able to do my first two years of teaching (kids or no kids) and I spent many months in PR as well. I always encourage graduate students to apply for these positions because the payback is enormous (with the exception of fellowships that require a ton of teaching), even if the applications are really time consuming, more so than applying for jobs.

Though rarely stated in such terms, the first few years of an academic position is not unlike medical residency. It takes a brutal amount of time, not only because of the sheer time you have to work but also because there is so much new to learn and so many different responsibilities to juggle. It is exhiliarting but draining, even disorienting.

But there is one important difference from our medical school counterparts (aside from the blood and guts and gore ): their hell continues throughout the year, while our hell diminishes during the summer when classes end and writing is supposed to dominate your attention. Also since I am not required to be here once classes ended, I am able to leave NYC and spend it back home. I would simply not be able to do this with most any other full time job (unless it involved telecommunting) and for that I am grateful I landed the job I did. Academia, despite its rat race quality, has allowed me to visit my mom throughout the year and summer.

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Over the years—far too many years—I have occasionally chronicled the slow death of my mother, a death of mind, personality, really person that comes with Alzheimers. She has officially had the illness for 7 years now but had symptoms prior to this time, in the form of perceptual disturbances that are the defining feature of the rare type of Alzheimers she has, Benson’s syndrome.

As her illness progressed and we saw her doctors they would always ask: “what other illnesses or health problems does Vera have?” And I would answer “none.” Without fail and almost immediately, the inquiring doctor would respond back “none?” often with a slightly raised eyebrow, the one word uttered not to challenge the veracity of my answer, but used instead to convey another meaning, often bathed in some mixture of compassion and pity. It was an acknowledgement of the future that awaited us, basically stating “with no other illness, this is going to be on heck of long and difficult haul of a life experience,” which has indeed been the case.

However, after nearly two years of being bed bound in a nursing home, physical health problems are now creeping in—and my mother is descending into different type of hell, especially since she can no longer communicate the physical pain she might be in. The words she knows are few: “no” and a few other words (she likes to tell people they are “loco” and indeed I can only imagine how true this accusation of “crazy” is given that we are keeping her alive against her wishes). Her consistent and persistent wailing, agitation and crying do of course communicate the depth of suffering—this being the hardest thing to bear witness to. She does have periods of calm, coaxed in part by the drugs she is given but these are not enough to override the pain she and we feel.

About two months ago, her body started to give, the first problem being a fracture that led to significant internal bleeding and required a blood transfusion and a brace she is still wearing. A few weeks ago when I was visiting her, she basically developed these black and red welts on the bottom of her feet in a manner of two days, so instead of boarding a plane to NYC, I took her to the emergency room and stayed a full week while she was pumped with intravenous antibiotics. At first, doctors thought it might be gangrene, which was mortifying mostly because of all the associations that come with it. The doctors determined that it was not in fact gangrene but that she has a bone infection—technically called osteomyelitis —a tricky condition to treat that requires at minimum 45 days of IV antibiotics.

The hospital/doctors who had originally determined she would stay there for her treatment, changed their mind unexpectedly and announced their intention to ship her to a long-term care facility, which in theory we were not opposed to, except for the fact that it is very far from where my sister lives, and also it is a facility we had not verified for ourselves. On top of it, we knew she had a legal right stay in the hospital (though some doctors informed us otherwise). We preferred the hospital because it is so close to our house, we would be able to hire someone to visit her when my sister is at work, and we suspect that she will have additional complications from 45 days of IV abx so why not stick around and receive treatment and care from the same internist who had been nothing but a great doctor.

The story took a turn toward the surreal when the infectious disease doctor decided to “release her” to her nursing home with a treatment of oral antibiotics, even though every single doctor we saw from the emergency room doctor to the weekend internist who subs for her regular doctor, repeatedly informed us the only treatment is IV antibiotics for at least 45 days, possibly more (which is the normal treatment protocol).
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After a fairly tiring (though exciting) semester of teaching, I have packed my books, lots of files, and other things I Can’t Live Without, and shipped myself via Jet Blue to Puerto Rico where I will spend my summer. My reason for being here is simple: I want to see my mother who continues to live in a state of minimalism at a nursing home with Alzheimers. Coming home is never easy. Seeing her for the first time after an absence of months is especially hard and expect will continue to be as such, so long as I have periods away from her like I do. I never imagined that I would live between two cities as I do, but in general I am grateful I have a job that allows me to bridge these two places.

When I am in NYC, I am so ridiculously busy (being an assistant professor is not unlike being a medical resident and doctor except the tempo slows down during our summers, at least to some extent) that I don’t—for better or for worse—have my mother always perched on my mind. But being here is a different story. Not only do I have to structure my own time (so my mind can wander easily into those nether regions), but the house I stay in is nothing but filled with memories of my mom, most especially from the last 4 years she spent here with Alzheimers

Along with visiting my mom, most of my time will be occupied in front of the computer working on the first draft of my book manuscript, which is due on September 15, 2009, 2 days before my birthday. I think I can hack it given that I have lots of time on my hands and when I get into work mode I can get a lot done.

But the first month or so is going to be really really rough. I always find the transition into “stare at your monitor mode” for the entire day sort of tough. Puerto Rico also has a host of magnetic distractions like the garden and the beach, which I don’t love but in fact adore. I also don’t really associate the tropics/this house/the summer with mental work, but I will spend the next few weeks reversing that association or else I will be in deep trouble!

Right now I am setting up the office, struggling to find the right a/c unit for the space, and in a few days I hope to be writing away…

When I return to PR, my blog tends to lie fallow. Between taking care of the house, outdoor distractions (like the very overgrown garden and the very enticing beach), and most especially visiting my mother, I turn away from the computer, from my analytical mind, from writing. But since we have edged into a new year, I thought I would spend a little bit of time ruminating on 2008, which was one of the most unforgettable for me.

With each passing year, it seems that 12 months bleed right into the next 12 months. But within this swirl, there are a handful of years that retain their sharp edges (1992, 1996, 2005, 2005-2006 are the most memorable). 2008 now sits among those as it is the the year that a tube was placed into my mother’s stomach and soon after she was taken from the hospital into a nursing home without even the chance to say goodbye to the dog who was her steadfast companion and the house, which was her home for over 20 years.

Over the last 6 years while I have not written much about my mother and her Alzheimer’s, I did so fairly consistently with at least 3 entries per year, that is until March 2008 when she was put in the nursing home. Soon after being admitted, I wrote one entry and since then have not had the heart to commit much to words, something of which I am ashamed of and have sworn I would write about at least once before another years passes us by. I don’t have the desire to constantly write about my experiences with her but it seems to be that Alzheimer’s is erased far too often from public view and I would rather not contribute to that type of very pervasive silencing either.

The recipe for my silence has been made up of various ingredients. One was I was just really really busy. Last semester was frenetic so I often did not have an ounce of room/time to think, much less blog about such a difficult situation (and I spent a lot of time going back and forth to PR as well). Another is that I was trying to avoid the heartache that arises when you focus in, with some detail, care and attention, on something that is unavoidably painful. Each time I tried, I ultimately failed and told myself, I would do so later. Finally I was blogging less and less about these types of subjects so it just seemed a little out of place every time I tried to commit something to words.

For me, one of the hardest things to accept—and this probably fed into my silence—is that I played a part in prolonging her life when I know she wanted out (with a capital O U and T). But at the time the feeding tube was placed in her, she was walking and talking and it did not seem right to refuse her food (and I hoped that with some food, she would then start to eat on her own as she can swallow just fine) not to mention that her caretaker (a devout Catholic) and my sister would have never at the time been ready to refuse the feeding tube and I was not exactly quite ready either. Well, what we did not foresee was that 5 days in the hospital did her in and when she left, she could no longer walk, she could barely talk, and yet due to the feeding tube, she gained back the dramatic weight that she had shed over a year so that her body at least looked far more alive than it had been for years thanks to the steady stream of nutrition being slowly pumped into her body.

I just know she would not want to be alive under these conditions and yet at this point, there is not much I can do legally except refuse certain classes of treatments if she gets sick (such as respirator) or wait until she becomes completely vegetative and then go through the legal hoops, that ultimately may not be successful, to remove the feeding tube. It has been so hard for so many months that as I late I have been trying to approach the whole thing with at least one dash of Zen-like detachment (by which I mean an embrace/acceptance of suffering in this world) and just spend as much time as I can with my mother, which I did a lot over the summer and I am now doing this winter. I am most probably moving back over the summer as well as my sister is not faring all that well after being with her for so many years.

Even though she no longer knows my name, or who I am, I can tell she notices my presence and there are days she even seems to be happy. In fact, over the summer, she had some pretty lively days when we could manage to joke about almost nothing. Those days were rare and precious and today they don’t seem to happen at all (she did seem a bit excited that it was a New Year though I could not tell if she really knew what I was saying). Over the summer, generally I would climb into her bed and we would co-nap for a couple of hours. And then the worst were the days she was hysterical and crying, and the absolutely worst was when she was crying, pleading for her parents. Those were days that did not break my heart but my soul.

Thankfully those days of hysterics seem to be happen less and less and my mother just seems to sleep a lot. I sometimes like to think she is like those really old cats or dogs who seem to spend interminable hours sleeping and resting and don’t seem to be suffering all that much though I can still tell she is still in a bad mood from time to time.

She also has a wonderful roommate, Ana, who also pretty advanced Alzheimer’s though certainly not as bad as my mom. Unlike my mother, she is happy as a clam, so much so she is always saying things like “Isn’t this a great day?” “How wonderful the day is,” etc. etc, which is a nice counterbalance to my mom! I sort of like that my mom’s roommate is, personality wise, the polar opposite of my mother, who is not a fundamentally unhappy soul, but she was emotionally erratic one with quite a few peaks and valleys and this is still very much the case.

Having Ana around (and her family) has transformed the way I have seen this illness and my mother’s condition. I am certainly not thrilled that she is alive and in fact think how we end (or don’t end) life is something we as a society should be ashamed of. I clearly want to see her released, freed like a bird from the cage of this world (my mother loved loved birds I think because they symbolized freedom), but spending time with Ana, who again seems quite content, made me realize how part of the Alzheimer’s experience is rooted in one’s personality. My mom has always been difficult and when she was sick but still quite functional, her personality made the illness difficult for her and those around her. She never really had much luck changing her karmic personality and it sure is not going to change now. But as I said she does seem to rest a lot. I just hope her last few months, possibly years, are if nothing else peaceful and tranquil.

Last week I went to Puerto Rico to take my so-called spring break to visit my mom. I expected a semi-relaxing visit as her caretaker, Milagro, would be around and I also expected one last visit with my mother before embarking on the difficult process of moving her into a nursing home, which I planed to do over the summer. But a day and a half after I arrived, we brought her to the hospital because she basically had stopped eating and even drinking water and now that she has been released from the hospital, she has been placed in a nursing home.

We brought my mom to the hospital because she was malnourished and dehydrated. To admit her was an exercise in managing a fireball of pure fury. Even if she was weak, she mustered every last piece of her energy so as to transform herself from a little old lady to a little old lady of pure Russian terror, unleashing her wrath left and right, not to mention up and down. But well, thanks to her (I think, somewhat calculated) wrath, at least they took her in immediately (despite a truly truly packed packed emergency room). Once inside, it took 4 nurses and her caretaker to put the initial IV in her arm and then they threw in a little haldol to “calm” her down. We waited nearly a day to find out that her doctor, Dra Nazario ordered a feeding tube without consulting with me or my sister (of course at some point they would need consent). At first I did not want a feeding tube put in her. But after talking with various nurses and other family members in the hospital with parents with Alzheimers, I decided to go for it. It is clear that my mom just does not eat enough and when she does, she eats poorly and I did not want to go through another traumatic visit in the emergency room at some future date to do the same.

After her operation and after a few days of getting food, she was conscious but barely so. She did not want to talk, did not seem to be able to talk, and this of course, was heartbreaking because we thought that the operation, 4 days without food, and the really difficult hospital entry did her over. But once she developed slight pneumonia and an UTI, funny enough, she actually came back to life pretty much as she was before the hospital (which is still pretty limited but at least she did not seem any worse and it will be interesting to see what happens after she gets proper nutrition for a few weeks).

So in the last 9 days I spent a lot of time in the hospital, more than I have ever spent in one. Let’s face it they are creepy places and exude a low-level, sometimes higher grade level of architectural and atmospheric grossness. The smell is so distinct: part disinfectant, part something that I can only describe as that of pre-death (or pre-rot), a smell that especially lingers for it co-mingles with the palpable sense of anxiety and worry (and tiredness) that family members carry with them. I took my mom to Hospital Pavia, which is supposedly one of the better hospitals in the San Juan metropolitan areas, and like 3 minutes from my house. And generally things were orderly and run well but there were a few times, when I was floored and beyond livid by they way they treated my mother and it is clear that a hospital is only as good as the doctors and the ability of the nurses to carry out their orders correctly.

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I am not quite up to listening to this myself, but this interview with author Terry Pratchet about hisearly on-set of alzheimer’s disease seems interesting and it is good to see people talk about it frankly.

For the last four years, I have left my life and home to return to my mother’s far more precarious and fragile life in Puerto Rico. I do so to visit. But I also do so to give her caretaker, Milagro, a much needed break. I returned on December 18th and found my mother nearly in the same state as she was in October. Far worse than a year ago, but she still struck me as my mother, if nothing else because she knew I was her daughter.

Over the course of a week, all of that changed. After a series of howling fits, by the end of my first week there, she no longer knew she was my mother. While I knew this would eventually happen, I was still caught off guard. You see, prior to my arrival, and since my last visit in late October, she asked me on the phone, and my sister and Milagro in PR, *nearly everyday,* when I was coming back. So even though she asked when her daughter, who she knew lived and worked in the city of New York, was coming back over and over again for 8 weeks, this seemingly hard-wired thought quickly vaporized thanks to what is a disease of the brain, but what strikes experientially as a cruel disease of the soul and personality.

So while 2007 was overall a pretty good year, it is also the year when in certain respects my mother died, at least for me in so far she has morphed into someone remarkably different from the person I once knew. Now she only remembers small scraps of her life. She knows she is from Russia, she knows that she lives in the “Casa de Vera” (which she thinks is her bed), she knows she loves the dog, she knows that she had parents (and she would like to return to them but does not know where they are), she knows she has a good friend who is a painter (I think she had a massive crush on him if she still remembers him and not me but otherwise, everything is so twisted, so jumbled or so gone, it is beyond stunning. She certainly knew I was around and helping for she got upset when she knew I was leaving, often bursting in tears, asking me to take her to New York. But she just knew me as Gabriella from Nueva York who brought “her novio bueno to PR” and not as anyone else.

It is certainly not easy to see this, to experience it day in and out but it is what it is and there is no running from it. Logistically it is also beyond hard to take care of my mom. To get her to eat, to calm down after one of her morning fits (she always, always, always had a raging fit in the morning, the afternoon and evenings being far more calm periods), to convince her to wear her dentures (which is the only remedy to stop her from spitting all over the place), to dress her, to deal with her in the middle of the night, often twice, are all extraordinarily challenging. Very quickly, your waking hours fill up with seemingly endless tasks and this I guess is, in some respects, a hidden blessing; there is just a lot less time to ruminate over how all of this, frankly, sucks. It is only later, late at night, early in the morning, or on the plane ride home where the darkness of her life would set deeply into my own.

It may be obvious why this state and experience is tough but there are two parts that I find particularly rough. If my mother’s state is one of near total chaos and entropy, there is one thing that is utterly clear. She knows she is suffering and she wants out. On particularly bad days, she would mutter or sometimes yell loudly that she wants to die and would ask for the medicine that would accomplish this. She would even sometimes call me “mala” for not giving her this medicine. It is certainly not the case that everyone with Alzheimers goes through what my mother does. Apparently, some experience the illness quietly and peacefully. This is so not the case for my mother, who lived a particularly hard yet vibrant life. Donning a difficult personality, she lived lived as fully as she could and it is clear that as life leaves her, she would rather not be around to experience what is a cruel exorcism of self. Thankfully, she is not constantly or not even mostly in a suicidal state. I think she at times forgets how lousy she feels and rather enjoys the rather limited life she has. And at this point, I just hope that she continues to have calm or even happy moments.

The second surprise concerns my own memories. My mother has had this rare form of Alzheimers, Posterior Cortical Atrophy, for at least 6, possible 7 years now, though we only received the official diagnosis 2003, which is the year when when I first started to write the occasional post about my experiences with her. In 2003 and 2004, she was pretty functionally in tact and it has only been the last 2.5 years when the persistent decline has set in, whittling her capacities and memories to what seems to be a bare minimum. But because her presence and reality is nothing short of totally enveloping and drowning, I am starting to lose my own memory of my mother prior to her illness. If Alzheimers robs people of their memories, I have come to realize, that if you are not careful, it is a thief that can also rob your own memories. I think it is for this reason that I have become so attached to my mother’s stuff—her furniture, her paintings—some of which I have taken back with me. They are material vehicles that transport me back to the past when my mother was in a different state and place. Now it is clear that if the challenge is to deal with the emotional toll this illness causes, it as much summoning the will and performing the labor to retain and recall my older memories of her.

As many readers of this blog know, I tend not to shy away from writing about my mother’s struggle with Alzheimers. But in the last 6 months and especially since I paid my last visit to my mother, I have found it much harder to sit and write about her current state of affairs. If we think of Alzheimers as a journey to a new place, she is almost at the point of reaching that place of great loneliness and inhospitality, which is not only new and different—both for her and those around her—but is a virtual prison, for it rarely allows you to leave and visit the places of your past.

More than ever, her memory and understanding of her life as she (as I and many others), once knew it, is fading fast; Of course, this was to be expected but it is quite difficult to imagine what it will be like until the actual experience unmistakably knocks on the door of present time and unfortunately, when it knocks, you can’t do anything but open the door and let it in.

Unsurprisingly, it is incredibly difficult to witness and interact with a person who is losing most all recollections, the stuff of which, you come to realize, is what defines a person and allows you to more or less have the opportunity to seamlessly interact with him or her.

In the last number of months, I have perhaps been more silent than usual because there is only so much I can and want to think about when it comes to my mother’s decline. I talk to her nearly every day and I have decided for now, that is enough.

But I am retreating out of my silence after reading a refreshingly honest, though still somewhat timid piece on Alzheimer in the NYTimes, entitled Zen and the Art of Coping With Alzheimer’s

The piece is striking because it offers a more realistic portrayal of the disease than most mainstream media accounts and it provides some really sound advice about the importance of just letting go and going with the flow when interacting with those with Alzheimers.

At the same time, it lacks a certain window into just how disheartening and hard it can be to witness the decline, and how hard it can be to manage those conversations and interactions.

On the whole, I try to go with the flow. For example, I recently returned from a visit and soon after I left, my mother forgot I was even there. She started to ask me over and over again when I was coming home for a visit and when I told her I was just there, her semi-humorous reaction was “well, why didn’t anyone tell me?” (and then proceeded to castigate her caretaker for not telling her!!).

Perhaps I did not stay long enough, or perhaps her lack of recall would happen no matter what. To hear she forgot shook me hard and deeply. The first time I realized she could not remember I had just visited, I was able to jog her memory by listing off all that we did together. Finally, when I mentioned that I bought a new refrigerator while in PR, something clicked. She is still worried about money, so buying a refrigerator was enough to remind her I had spent a lot of money.

But after it was clear that she felt quite bad about not remembering, I knew that was the first and last time I would try to “jog” her memory. Instead, I will merge and mold my reality to her reality, as much as I can and assure her that I will soon visit.
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