January 1, 2009


Category: Alzheimers — Biella @ 12:02 pm

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.


  1. Biella, I am grateful that you have shared this with us. Did you ever read the notes that Leonard and his family wrote as his mother was dying?


    Decisions about nutrition tubes are so hard. My sympathies are with you.

    Your last paragraph reminds me: People say that we give birth the way we live, and that we die the way we have lived.

    Comment by Sumana Harihareswara — January 1, 2009 @ 12:40 pm

  2. Biella, this is such a beautiful entry and it is quite poetic and honest although it’s clear that it is very difficult and painful to write. I’m sorry that 2008 has been such a difficult year for you and your family. I hope 2009 brings some peace and clarity.

    Comment by Alice Marwick — January 1, 2009 @ 2:39 pm

  3. A friend of my family recently died. She was someone who we did not visit for many years and lived far enough away. I and my family followed her decline by the way of a patient website. She had chronic illnesses all of her life. Within the last year her condition became critical with her kidneys near failure. She went into the hospital with her family by her side which included 5 of her offspring, their spouses and kids. During her decline, she spoke with the hospital, her doctors and her kids about her end-of-life choices. She was a stubborn person and always wanted things her way and was feisty. Near the end, she got her kids to bring her little dog in her room to visit her after getting the nurses to give in. As she reached the point of no-return with her care, meaning to go on palliative care or dialysis, she was of a sound mind and told the doctors her wishes. She told her wishes to her kids who protested some but knew that their mom was not the kinds of person to change her mind and finally accepted her wishes. And two months later she died in her sleep in her hospital room. In most countries today, you need the combination of many factors to get your end-of-life decisions followed: supportive state laws, hospital, doctor, partner, and family. Any one that does not agree could have stood in your way. I dont think the medical system would have allowed you to refuse a feeding tube. It would have taken rambo to get them to follow in my opinion. Or at least that is what I suspect. The pressure, even if not verbal, must have been beyond anything imaginable from those around you. And I expect you wanted a moment more to communicate with your mom. I have no doubt that you are doing the best under the circumstances. Take care of yourself and enjoy what ever time you have left with your mom, even if its in silence.

    Comment by Kevin Mark — January 4, 2009 @ 2:39 am

  4. b, thank you for sharing your thoughts.

    Comment by looby — January 18, 2009 @ 3:14 pm

  5. Biella–

    Thank you for sharing this. My thoughts are with you.

    Comment by John Randall — January 20, 2009 @ 8:46 pm

  6. this is really touching, thanks – will

    Comment by will hall — February 1, 2009 @ 8:02 pm

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