March 29, 2008

On Moving to New Places

Category: Alzheimers,family — Biella @ 2:50 pm

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.


April 12, 2007

On My Aunt Enid, Cars, and History

Category: family,Tech — Biella @ 8:30 am

Those who know me even moderately well (as well as every doctor I have ever seen), knows that my real first name as “Enid.” That is the mysterious E. that sometimes precedes the Gabriella.

My mom’s intention was to call me Gabriella, the first name of some “famous” Italian Cabaret singer, Gabriella Ferranti. But when Enid, my aunt on my fathers side, passed away a few months before I was born, I was given the name Enid Gabriella. We have always used Biella or Gabriella but I like that I have Enid in there and have fancied from time to time to start using the name “Enid.”

By all accounts, Enid was an amazing and energetic woman, who reared her four kids with passion, was very open to friends and family, and who, despite living a solidly upper middle class Jewish life, was also involved in interesting political work(like helping Americans doge the draft by escaping to Canada). My mom held a special fondness for her because, well, honestly I think she was one of the only members of my dad’s family who she deeply loved. And Enid always went out of her way to show her care and concern, as when she immediately went to Caracas after my mothers first child unexpectedly died of a high fever at the age of five months.

Today as I was writing away, I received an email from my father that he sent to me and a bunch of cousins and other siblings where he attached a 9 page document of “remembrances” and memories of Enid. My dad, though in no way as bad off as my mother (health wise), is no spring chicken. And I think as he fast approaches 80 years old, he is committing a lot to writing and thus, keeping his memory alive for us. In fact, this reminded me of a really beautiful quote I recently came across on memory:

“You have to begin to lose your memory, if only in bits and pieces, to realize that memory is what makes our lives. Life without memory is no life at all, just as an intelligence without the possibility of expression is not really an intelligence. Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing.” Luis Buńuel

But what was a little odd (but nonetheless very endearing) about most of the account is that it was not organized by stories, or date, but by car models. Yes, by technology. My dad organized the stories about Enid by virtue of the cars they had, which struck me a little strange because it is not like he was a car buff or anything (growing up we always had the most unsexy cars, like Ford Tauruses).

The cars he covers are the following:

The Model A Ford Convertible
The 1941 Oldsmobile
The 1948 Buick Convertible
A Chevy Convertible

Once you read his little tribute, it becomes immediately clear that his choice of talking about cars is also way for him to talk about “history” which is my dad’s great love (he can talk to you straight for 5 hours about some odd event in WW II and why he should have become a historian) as it is about Enid.

Case in point here:

This was the first General Motors car with automatic drive. It was called Hydromatic and even though this car had a powerful 8-cylinder engine, this first automatic drive was very sluggish. Forget about 0 to 60 miles an hour in 7 seconds. This was in minutes. It was the car that Abe used to teach both Enid and I to drive. We both had to have additional lessons with a stick shift car, because the driving test was only given on stick shift cars. I learned to drive in 1944, when I was 16. Enid took lessons from Abe and learned to drive in 1945 when she was fifteen. This was against the law, but the law in the name of Tom, the policeman that covered our neighborhood, liked Enid and looked the other way.

For those who care to read more (it may only be amusing to me and those few people that are into American car history), I have included all the cars and here are the main cast of characters.

Ruth = My Grandmother
Abe = Grandfather
David = Dad
Enid = My Aunt, David’s sister


July 4, 2005

The Law of Rules

Category: Alzheimers,family,Personal — @ 6:54 pm

I have been in PR for nearly two weeks now and it feels like I have accomplished only 3 days worth of motherly errands. In fact, except for Sundays, I have been going nearly non- stop with her, and dealing with her affairs. It is just that things take a little longer here and more so over the summer when the heat is inescapable. I forgot what it was like to live, breathe, and generally move around in soaring temperatures. Actually when you are on the beach, it is delectable, because the only so slightly cool ocean waters vindicate the heat, entirely.

Otherwise, I languish. I think I languish more because I have been thrust into a role that seems somewhat foreign to me: adulthood. I guess I have long been on the path toward that enigmatic place we call adulthood: I got my drivers license at 16, at 18 I could legally drink in PR, I left home when I was 17, started to pay my own taxes when I was 21, now actually sort of understand my taxes, and so forth… I have reached my 30s. But the student way of life feels only at the cusp of adulthood, as if you put it on hold to pursue your personal desires, staying away from those signs and practices that place you firmly in adulthood, such as taking care of others.

But now as I take over my mom’s affairs, and her financial world, I am having to play some serious catch up to things adult: wills, taxes, funerals etc. It is a little overwhelming, and almost entirely unpleasant especially since my mom can sort of understand what is going on, but also sort of not. I try to make decisions that are right and explain them to her but there are times she just does not fully get it (although there have been times when she has given me crucial pieces of legal info out of the blue).

One of the larger current projects is re-doing her will because as the current one stands, there are some ambiguities that can cause us a huge, no gargantuan headache later on. So now, we are making a new will which will include a trust for my sister (who is not all that financially responsible) and this apparently is a huge headache to do. Ok, it would not be so bad if I lived here but I don’t. So I have meet with the lawyer a number of times, hammered out the basic details, and will have to coordinate the rest from Chicago/NJ and return in August for the signing. Since my mom can’t see well, we have to get five witnesses to proceed over the signing. The whole thing is a huge source of anxiety for me partially because I have to coordinate it, partially because the law seems so flagrantly obscure and obtuse (PR is also under Napoleonic code) and also it costs a lot of money. Legal services in general tend to cost more in PR, which is why there are a lot of really really wealthy lawyers in PR who drive some really nice houses, dine on fine food, and reside in luxurious homes, but I guess that is most places :-)

It seems like at least every third person in PR is a lawyer and they have created a system in which they are necessary simply to avoid disaster. Much of the western “liberal” world is such (so much for legal freedom) and ss our lawyer said, “we don’t live under the rule of the law but the law of rules.”

So true…

August 11, 2003

the dance of life

Category: family — Biella @ 12:49 pm

Just a few days ago I saw a great and I mean Great with a capital G show. It
was a Rumba band which is incomplete without dancing and thankfully dancers
were there to bring completion to the performace. Physical movement brings to
life music that is already bursting with life. Rumba which has it origins in
the slave societies of the Latin Caribbean, combines fast paced drumming
with singing, while a pair of dancers erotically and evocatively flirt with
a pace and intensity that matches the drumming, in ways that just seem
humanly–> impossible. Rumba dancing captures what it means to be human: to
play, to desire an another, to connect individually. Yet it is a
social affair, the band united together through drumming, a gift of rhythms
for dancers so that they can engage in a flirtatious game of give and
take. It is an embedded and embodied cultural tradition. Out of slavery and
oppression grew forms of expression that said: “you can’t take away those
basic sentiments of human life and love.” Dance in this case is so clearly
language, a text of human passions, sex, desires, flirtatious games of
love which are brought to life through bodies that gleam with sweat. The
drummers don stoic faces of full composure so intimate with the music through
deep cultural knowledge and years of practice. The coolness of composure
contrasts with the sweat pouring through clothing. They work so hard so that
the dancers can play so hard so that the audience can sit in awe
to watch not just a dance but a dance that captures through and through what
it means to be alive.

Raw beauty, cultural exquisiteness, individual vibrancy all mixed together
and I watched with eyes wide open as if I had been blind for years before.
The nighttime dance differed so greatly from the light hours of that same day when I struggled
with the other side of the dance of life, the slower march of death and
decline. I spend most of my days with my mom who suffers from a rare form of
Alzheimers, one that primarily affects her ability to perceive. Distortions
and blurriness overtake clarity and sight. Objects come and go and hide with
no consistency. She moves through the world with great caution, using
baby-steps to navigate what has now turned into unfamiliar territory, even
her own home. She is like a small child grasping and struggling to make out
the world but in an inverse state of the sponge-like learning of babies and
young kids who are beginning to weave a web of neural connections that help
them navigate in the wondrous treachery of life. Her web of life is
unraveling. She finds her self caught in the inexplicably tragic knots of
her web as the pieces of her life-rope tangle her mind and perception as
they fall to pieces.

July 21, 2003

the torture of love

Category: Alzheimers,family — Biella @ 4:03 pm

These days my mom can’t do much that requires sight though she can see to some degree. It is strange, it is as if she sees but in a distorted way missing a lot of what is around her and just plain misperceiving things. She has always had a will of kryptonite so she still insists on doing stuff that requires sight, it just takes her a lot longer and she then puts objects in funny places. But the woman can still talk which she has always been able to do and now that she can’t do much else, she really goes full throttle.

Tonight she told a collection of stories on love. She spoke of the love between my grandparents in Russia which is a particularly tender and romantic story and then she told of her loves and romantic escapades which included that of my father. I really like the one of my grandparents because first of all, they were never married and he left another woman and his daughter because he fell so deeply in love with my grandmother at first sight. I know that is a raw deal for the other woman but those stories of undiluted passion are quite a treat.

Apparently, they had (or at least they thought they had) this psychic communication, thinking the same thoughts at the same time, many times over. I guess it was easier to connect in such a way without all this modern technology we have these days… ;-) The sad thing was that right after they met my grandfather was jailed by Stalin for 10 years. There you find the man of your dreams and he is jailed for a long time in a prison where there is a high chance of dying. A long time to wait, no?