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.

For example, one day after my mom’s operation, when my mom was in a state that I would characterize as barely alive, or half dead, they gave her Atavan to calm her down!! When I found out, I was like WTF! Calm down someone who is barely conscious? Holding back the full extent of my wrath, I mildly chewed out the nurse and also showed her on her chart that she was only supposed to give it to my mother IF agitated and my mom was not only not agitated, she was like nearly comatose.

Then of course, her main doctor Dra Nazario has been so frikken busy that one night she showed up at 1 a.m. when I passed out sleeping on the wonderful hospital floor. Not exactly the best time to inform the family member what the hell is going on. After she explained things to me, I was not even sure if I was awake or dreaming (the doctor seemed to be far too beautiful to be a doctor so you know, that added to the confusion). Two of her other visits were less than 2 minutes long and her other visits were also short. Another time, she said she would place an order to put my mom out of her bed so she could move her limbs, but I guess she either forgot or lied as there was no such order. Great care huh? I am sure she is a good doctor but some time is of the essence to actually deliver care and if she is too busy, she should step away from the case. Luckily, for 3 days, she was seen by an excellent doctor who really took the time to explain things, caught her UTI by noticing sediment in her urine, and everything she said would happen, did.

Thankfully there are not just doctors and nurses in hospitals but lots of other patients and their families. And probably one of my favorite parts of what was otherwise an unpleasant and depressing time was talking to them and receiving their support. My mom was in the hospital during Holy Week, so there was a lot of praying, nuns, even more talk of faith and God than usual (which means a lot). While I am personally not religiously inclined, I do find some comfort in the religious atmosphere for it helps to cut through and minimize the otherwise sterile, septic, rational environment of the hospital. It produces some solidarity, and ethical care among patients (and even the nurses could be quite warm in this way), which is one of the reasons I prefer hospitals in PR and nursing homes too (which by the way are unbelievably cheap, even the expensive ones– they are like between 1200-2200 a month, which makes them, along with plantains, rice and beans, and movies the only things that are cheaper in PR than in the mainland US).

At the hospital I also met 3 other Alzheimer patients as well as their family members and it seemed to me that there were a lot a lot lot lot more of them hidden behind the closed doors. The first one I met was while in the emergency room when I was pretty much in a state of crying hysterics, and a very nice woman who was there with her father with Alzheimers called me over to calm me down and sort of told me in an amazingly non-patronizing way, to get used to it, and that it will get easier. All good advice and I am starting to get more used to this new stage of the disease but I always am an emotional mess during these types turning points and this has been like one of the biggest so far.

Another patient I met was on my mother’s floor. The patient was in his 80s and his daughter also had a mother with Alzheimers who died in the fall, which has still left her upset. Her father was in the hospital for he had ripped out his feeding tube and was worse off than my mom: he could not really talk and was pretty heavily restrained. What was so interesting about his daughter was that she did not want him to die, she expressed that she needed him, that she had taken care of him so long, that it was so painful to lose her mother, that she will not know what to do without him, even if he requires all of her time. She recognized that her desires and wishes were selfish but that was how she felt.

I have to say, I was surprised to hear this only in so far my feelings could not be more different from hers. While I know that when my mom passes, I will be more than distraught, in ways that I cannot even imagine, I know she wants to go as she has made this utterly clear, and I want nothing more than for her to be released of her suffering.

In fact, I am pretty sure that refusing food and water was her own way of letting go and I felt enormous guilt stopping a process that is perhaps just part of the natural process of dying, especially since for the last two years she has made it clear that she wants to die. But I was not exactly in a position to just, you know, let this run its course; not only would I probably get in trouble with the law (though honestly I am not sure), but my sister and caretaker would not of course let me. And push come to shove, even if I had the right to refuse water and food, at this point I don’t think I would have been really ready to let that happen.

The last Alzheimers patient I visited was unlike anything I had seen and I have to say if my mother ever reaches that point, I hope I can refuse any treatments that would prolong that type of life. She was writhing in bed unable to control her body movements, with her entire left arm bruised, and unable to do anything. They apparently have to give her some sort of blood transfusion every other day to keep her alive and I find this totally problematic. She has been in the hospital for 40 days and the question is why? She seemed to be in pain (again hard to tell, right??) but the types of constant medical interventions she receives to keep her alive strike me more like torture than compassionate medical intervention.

Making the decision to move her to a nursing home was also incredibly tough because I really just wanted her home. While I have known for a long time that a nursing home was in her future and though I thought I was totally OK with this, when the time cam to make the final decision, I felt a lot less OK about it. I would much rather have her be home but that would require 24 care that we just cant afford. Also it is impossible to take her to doctors and the advantage of nursing homes is that they have a staff of all sorts of doctors who visit the patients.

My mom is now in her nursing home and is doing much the same as she was before her hospitalization. In this world but barely, asking repetitively for one thing, maybe water, maybe our dog, maybe my sister. She is at least in a place where she does not run the risk of falling and where she can see a doctor if need be.

But it is hard to believe that when I go home, especially over the winter holiday when I used to take care of here, I wont have to do that anymore, that she won’t be there. She was the epicenter of the house. So when she was in the hospital and I would return to her home, the place felt deeply empty, an emptiness I carried with me and I imagine will for a long time.


  1. Hey
    here is Ian from Brazil..we did the TT mapping stuff together there in Porto Alegre during Debconf.
    I don’t know what to say, really. I am really glad you wrote this and I am sending you some solidarity.

    Comment by Ian — March 29, 2008 @ 5:09 pm

  2. Dear Biella,
    sorry to read about the chaotic events that transpired that hastened the timeline for your mothers transition to her new home. My dad had a medical emergency a while ago and I recall the panic that goes through your mind rushing to an emergency room, being in the midst of the noisy throngs of family, upset and nervous, patients in states of pain and shock, and EMTs
    moving bodies on gurneys like slabs of cheese, running around like chicken littles. Paper work, the din of medical instruments, IVs, the white floor, ceiling and linen — like being in an insane asylum. The stench of rotting cotton dressings and ammonia. It seemed like a miracle to have survived the first day. And it took 13 hours to finally get him from a bed in the ER to a room. Then the next day, with the constant checking and rechecking of what was going in to my dad, was his bag drained, did they get the PT, and then the doctors, like you mentioned, stopping by for a minute not always knowing exactly what they were supposed to do and still getting paid for it. My mom is
    a person who knows how to handle people, so she immediately makes friends with the nurses and floor staff, brings them cookies, and tells them to take good
    care of my dad. And when things were not copacetic, she finds the right people in the right office and sets them straight. In one hospital, they said she
    should get a job with the hospital because of the short time it took her to get things done ;-) Recently you were where things had seems somewhat smooth and
    regular but always were waiting for the shoe to drop. Unfortunately, the roller coaster made an unexpected dip and your stomach felt it. This feeling, too, will pass as you adjust to the altitude. My fathers friend had a brother who was mentally ill who lived alone for some 30 years but recently he had to be placed in a nursing home. To everyones surprise, with regular meal, meds and care, his health improved and is adjusting to his environs. Not that living in a nursing home is supreme living, but it will hopefully be a place where she can live comfortably and be able to find some souls to converse with to pass the time. I wonder if someone could bring her little companion around, if the place would allow it, as it could only be therapeutic. Anyway, take a few moments to breathe. The person who you love is still there and she transferred her being to your heart and soul, a safe place. What remains before you is a fragile form that is biding its time to make the transition comfortable for you, something to which you can give some hugs. Mothers like to make things easy for their children. Anyway, hope all is well otherwise. And take care.

    Comment by Kevin Mark — March 29, 2008 @ 11:43 pm

  3. yeesh. I’m sorry that your mom has had such a struggle. I hope she finds some comfort at the nursing home. While my own experiences with a grandfather with dementia was more removed, I saw what it put my mother through, and my father was a one-man army caring for his sister before she passed away. I think I agree on the feeding tube, that there comes a point at which the caregiver shows the greatest compassion by acknowledging that being at peace and being alive become mutually exclusive.

    Take care.

    Comment by looby — April 17, 2008 @ 3:40 pm

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