November 25, 2009

Ninja Mind Tactics

Category: Alzheimers,Puerto Rico — Biella @ 5:42 am

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).

Since so many people don’t know how to maneuver complaints and take action in hospitals, doctors and other staff can exploit this to make medically dogdy decisions (which happened in fact when a feeding tube was put into my mom, but that is another long story I don’t think I ever wrote about here). I am sure also that some doctor’s are less willing to take questionable action with certain patients depending on the class and background of their family members but I bet the first impression I give off to doctors, to invoke Erving Goffman’s work on self-presentation, is not someone willing to take swift action.

In the hospital, I have the sense that most doctors don’t take me all that seriously, probably thinking that I am 5 foot slacker/artistic type that I admittedly do look like as I dress in jeans, a hoodie and a winter cap because the hospitals are so effing, ridiculously cold in PR (and I can’t help my height nor the fact that I look 24 or so). So it usually comes as a surprise when I bring out my mind ninja tactics developed over years of being and thinking like an academic, whose craft is research, whose passion is arguing, and for some of us who are politically inclined, who love the challenge of righting wrongs.

So when this happened I contacted lawyer-friends, talked to the social worker and promptly complained to the head of client services/ombudsperson and made a stink but of a very particular sort: it was packaged in massive tact. I was very deferential (especially since those folks have nothing to do with the mess, they are there to help and are your allies), repeatedly pointed out how the doctor’s decision amounts to medical negligence, and made it clear that I was willing to take action, leave my work if need be and get my ass down there, and casually mention how in the 5 hours between their decision and my phone calls, I have already taken action (how I have contacted lawyers on the island, etc).

Needless to say, the hospital decided that my mom is staying put in the hospital and I am relieved. But this solace is only of the tiniest sort. I am still reeling from the absurdity of her condition and her suffering. She is only alive because of a feeding tube that I am opposed to, her state of being a modern day zombie that in reality, or at least from my perspective perpetuates her suffering.

For this reason, truth be told and at one level relieved that her body is finally failing, that there is a chance, a light at the end of this lonely, now horrific tunnel that her life will end sooner than later. This, however, makes it no easier emotionally nor ethically as it is my mother who must journey alone through significant pain and suffering as her body now goes elsewhere—a journey we can watch in person yet are powerless in its face.


  1. recovery a piece of love
    Dear Bella,
    I’ve been living with a dying parent as well, and a host of other passings that have been, at the very least, unexpected.
    I hope you will soon be able to move on and remember the parts of this life that were happy. Because I can understand the pain you feel for your mom.

    Comment by vvill — November 25, 2009 @ 7:52 am

  2. I’ve being in a similar situation and all I can say is to stay strong.

    Your love for your mom is beautiful.

    Comment by sime — November 25, 2009 @ 3:33 pm

  3. Although there is a lot of heavy stuff here, I deflect by focusing on

    … probably thinking that I am 5 foot slacker/artistic type that I admittedly do look like as I dress in jeans, a hoodie and a winter cap because the hospitals are so effing, ridiculously cold in PR (and I can’t help my height nor the fact that I look 24 or so). …

    Nod to all but the last. Since I’ve known you, you’ve always looked at least 34 to me. I hope that makes you feel just a wee bit better.

    Hang in there.

    Comment by Rob Wilson — November 27, 2009 @ 12:04 am

  4. thanks (and thanks to those who contacted me off-blog). i am always torn as to whether to write about this topic on my blog but i don’t want to forget and i find it helpful to commit my often very chaotic thoughts and emotions to words.

    Comment by Biella — November 27, 2009 @ 11:32 am

  5. My thoughts are with you, Biella. Thank you for writing this.

    Comment by Sumana Harihareswara — November 28, 2009 @ 5:39 am

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