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Month: January 2008

  • Falling

    Thursday evening disaster struck. As the Alzheimer’s continues to eat away at Grandpa’s brain he is progressively losing his sense of balance. His increasing inability to walk is a great cause of his tendency to fall, but it is not the only cause. Thursday evening Grandpa spontaneously fell over backward.

    He was standing in the living room, doing nothing and staring off into space, when I looked over from my computer and noticed that he was beginning to sway like a drunk. About five seconds later Grandpa realized he had become unsteady and started to turn to find something to stabilize himself with. That slight movement was all it took and he toppled right over backward as if someone had given him a hard push. He went down and struck his back at the point of the lowest rib against a chair.

    By the time I reached him he was gasping, “Don’t move me! Don’t move me!” in a very pained sort of way. After confirming that he had not struck his spine, and so we weren’t dealing with a possible broken back, I managed to coax him to roll over and after allowing the pain to subside somewhat I helped him up.

    At that point it was unclear how badly he had hurt himself. He could clearly stand, and though obviously in pain did not appear to be unbearable so. I asked him if he wanted some pain medicine and he said no, so I figured all he had suffered was a bruise, a pulled muscle, or a temporary spasm. Not fun, but given that he was an eighty-year-old man who had just toppled over backward he had escaped as best as one could hope.

    But his injury was not quite so minor as at first it seemed. After his fall Grandpa sat quietly for awhile, but I could tell that he was still in significant pain. When I asked him again if he would take some aspirin he readily agreed. Still, since he wasn’t moaning or groaning I figured that two aspirin would take care of most of whatever discomfort he was feeling.

    Later in the evening we completed Grandpa’s bedtime routine of snack, bathroom trip, and then to bed. Everything seemed okay until I helped him lay down and he exclaimed, “Oh! That’s where it hurts!” Grandpa always lays on his left side in bed, and that was the side he had injured. At this point I got the first glimmer that things might be difficult. Nonetheless, hoping for the best, I tried to get him comfortable, tucked him in, and sang him some hymns. At that point he seemed quited, but not asleep as he normally is by that point. I turned out the light and left, hoping that he would fall asleep and sleep well that night.

    Such was not the case. When I next came into the bedroom to go to sleep myself I found Grandpa up and the room in a state of disarray which showed he had not been resting quietly. He was hurting too much to sleep. At this point I had the feeling that tonight was going to be a very bad night.

    I tried to get him to lay back down again, but it quickly became apparent that his back was hurting him more and he absolutely couldn’t lie on his left side and he wouldn’t lie on his right side because then he would be facing the wall and that wasn’t acceptable. The solution was to move him over to my bed so he could lay on his right side and not face the wall. He was in less discomfort in that position, but it still wasn’t enough.

    It ended up being a very long night indeed. A normal healthy adult with a back injury usually discovers that there is one position in which the injured muscle hurts the least. A normal functioning adult will then stay in that position. If Grandpa were still a normal functioning adult he probably could have passed the night in fitful sleep. But Grandpa is no longer a normal functioning person, and the more miserable he is the less coherently he functions.

    Thus the night passed as an exercise of futility for me as I tried to get Grandpa comfortable and to sleep while Grandpa continually worked contrary to his own best interests. I would get him marginally comfortable and then he would have to go pee. I would get him comfortable again, and carefully stroke him until he drifted asleep . . . and fifteen minutes later he would cough and give himself a pain and wake up. Instead of lying still until he fell back to sleep he would shift and that would hurt more, and then he would decide to sit up.

    It was impossible, and I finally gave up and left him to do what he would. For the second half of the night he moaned and groaned and muddled around with things. I realized that he would probably feel most comfortable sitting up on the couch, but I wasn’t sure I dared take him.

    Eventually, as the night waned on toward dawn Grandpa crawled out of the bedroom and on down the hall. I think he left in search of (once again) the bathroom, but forget his reason or destination and simply expired halfway down the hall and lay there on the floor. At that point, halfway between bedroom and couch, I thought to try to get Grandpa the rest of the way to the couch. With much coaxing I managed to get him back to his feet, but I only managed to persuade him to take a few steps before his mind and body gave out and he just stood where he was and wouldn’t go any further.

    I brought the wheelchair around and eased him down into it, then brought him around to the couch and transferred him from wheelchair to couch. At that point I wrapped him up in a blanket and went back to bed. It was 5:30 AM.

    I don’t know if Grandpa slept, sat quietly, or did something else entirely. All I know is that I woke at 8:30 to him peeing in the hall outside the bathroom door. And so Friday began.

    I had to go grocery shopping Friday. Grandpa spent the entire day sleeping, making up for his sleepless night. In the first day or so following the accident I wasn’t sure Grandpa was going to walk again, ever. He seemed to have lost all ability to hold himself upright, and he would make a quick descent to the floor any time he tried to get up.

    But he did recover, at least mostly. Friday night I dragged my mattress out and threw it on the living room floor so I could sleep comfortably while Grandpa slept on the couch. The night passed more sanely than the previous, though sometime in the night Grandpa threw up. Every night afterward we were back in our normal beds and if Grandpa was not entirely comfortable he at least could sleep.

    I suspect that Grandpa suffered more than a muscle injury. I’m pretty sure he cracked the last rib. The first most miserable night I was running over in my head whether I should take him to the hospital. For anyone else the answer would have been an immediate yes. But Grandpa’s mental condition is now such that to take him into such a strange place with so many strange people asking him to do so many incomprehensible things would be like immersing him into his own private hell. Under such circumstances the benefits for taking him must be very real and necessary. Besides proscribing pain medication there is little that can be done for a cracked rib and I decided that unless Grandpa’s symptoms became worse the gain from taking him in to the hospital was not worth what it would cost Grandpa.

    He is much recovered now, though his side is still tender. I think I made the right choice in not forcing him to go to the hospital for an x-ray, etc but I wish he was in good enough condition to go to a doctor to be properly checked–just because.

    Unfortunately, his problems with balance persist. Yesterday he nearly killed himself.

    Grandpa has a tendency to want to play on the stairs. Obviously this is very dangerous, but unless you are going to physically restrain him, or gate off the stairs, there is nothing you can do besides trying to encourage him to occupy himself elsewhere.

    Yesterday evening around supper time he was fooling around on the stairs and I asked him if he needed to go to the bathroom. He said yes, and started up. It is a split flight of stairs with a landing at the halfway point where the front door enters. He was about halfway up the second half of the flight of stairs and I turned away to go turn on the bathroom light. I heard a sound and turned back in time to see one of those things you never want to see.

    Grandpa had apparently been hit by a sudden bout of vertigo and had promptly pitched over backward. I caught sight of him just has he began the inexorable plunge backward, the path of his fall sending him head first toward the steel front door. I only had time to shout.

    If he had hit the door he would likely be dead today, but God was merciful. Grandpa was still hanging on to the rail and when he reached the end of his arm he pivoted, his head just missing he door, and came to land on his back. While greatly shaken, he escaped with only a minor injury to his hand.

    ****

    I hope none of the above was too incoherent, but it is getting late and I must quit without rereading or editing.

  • NYT on Alzheimers Again

    The New York Times recently had another article on Alzheimer’s. The article covers efforts underway to develop methods of detecting Alzheimer’s earlier, and treat or possibly cure it. From a scientific perspective what the researchers are investigating is interesting. But sprinkled in with all the information about the progress of research are the personal stories of people suffering with Alzheimer’s and that was of more immediate interest to me.

    About the progression or suffering of Alzheimer’s, the article told me nothing new (though perhaps some of you will find those aspects educational) but did remind me of things that I find depressing. Phrases like, “It raises the possibility for me that this is a genetic disorder that starts early in life,” are only grim statements which confirm my own thoughts. The common reaction, at least of people not closely associated with those suffering from Alzheimer’s is that the disease is one which comes on fairly suddenly in old age. But, as it is said in the article, “Researchers think that the brain, like other vital organs, has a huge reserve capacity that can, at least for a time, hide the fact that a disease is steadily destroying it.” I think that for decades before a person begins to show very noticeable impairment from Alzheimer’s they are actually suffering from an unnoticed cognitive decline. Again, quoting the article:

    If Dr. Mayeux asks family members when a patient’s memory problem began, they almost always say it started a year and a half before. If he then asks when was the last time they thought the patient’s memory was perfectly normal, many reply that the patient never really had a great memory.

    For everyone aging brings on a less flexible mind, and some people have greater difficulty learning or understanding certain things–all without developing Alzheimer’s later in life. But are there signs of Alzheimer’s that reach back into middle age, and even youth? I find myself struck by how the mental frustrations and difficulties of my Dad and Uncle Kevin are a very eerie shadow of the progressive weakening in Grandpa which brought him to the place he is at now. Dad and Kevin have difficulty learning new things, are easily upset by change, and easily confused and overwhelmed. One part of me wants to simply attribute such thing to their long-standing personalities and the fact that they both are simply starting to approach sixty–so what can you expect? But what comes first, the chicken or the egg? Perhaps even in early youth amyloid plaque was beginning to build up in their brains and though their brains’ reserve capacity compensated in their young adult years, nonetheless their minds felt a strain in coping with things other people did not, and so their personalities developed an aversion to those things which so inexplicably strained them. Only now is the reserve of their brain capacity starting to fail so that both my Dad and Kevin are beginning to develop what almost seem like pathological aversions and inabilities to deal with certain things.

    Then I look at myself and also wonder. I have a very pronounced tendency to forget words, and a failure to articulate properly. Further, I realized recently that my penchant for using a wrong word, (sometimes completely wrong, sometimes just not quite the right word), or a slightly weird turn of a phrase–for which I am rather famous for spontaneously producing at our house. All of this is because when I am going along in the conversation I grasp from some verbal thing–whether it be a word or some colloquial phrase–and I can’t quite get it, so I just keep going and spit out something that feels about right.

    The results can be quite funny, or embarrassing, sometimes, especially the more involved or animated I am in the conversation as mangled phrases and incorrectly used words begin to pile up and lend a rather surreal air. And does it really mean anything? Not all of us are great conversationalists. Just because we might accidentally say, “Lick the cake and eat it too” when we meant to say, “Have the cake and eat it too” or use the wrong word when using a slightly unusual word, does it mean that all such people will end up with Alzheimer’s?

    No it doesn’t. There can be many, many causes of verbal clumsiness. And it may be that whatever is the root of my verbal mis-fires has nothing to do with the genetic disposition to Alzheimer’s in the Purdy blood. But I did find it very striking that Grandpa’s verbal failures could have such a resemblance to mine–forgetting a word, substituting, inserting a wrong word, or turning odd phrases. Of course Grandpa has declined much in the space of a year, and I am still who I am. I don’t think my slight speech difficulty is a sign that I will be crippled from Alzheimer’s in ten years. But is it a benign manifestation in my youth of something that will slowly become worse until at the age of seventy I am sitting on the couch babbling nonsense?

    Maybe. I don’t think anything is as straight-forward in life as any of us might imagine, and it is easy to over-simplify life, but in reading about Alzheimer’s, and seeing how it has progressed in someone else, does make you wonder.

    Such thoughts can be grim and depressing in an abstract contemplative sort of way, but the little tid-bits of personal stories struck me in a emotionally immediate sort of way. Now more than ever I could see Grandpa very close to those people in the end stages of Alzheimer’s and it was all the more awful to read things like,

    Her mother, 78, is in a nursing home in the advanced stages of dementia, helpless and barely responsive.

    “She’s in her own private purgatory,” Ms. Kerley said.

    Patients’ agitation and hallucinations often drive relatives and nursing homes to resort to additional, powerful drugs approved for other diseases like schizophrenia, drugs that can deepen the oblivion and cause severe side effects like diabetes, stroke and movement disorders.

    The disease is named for Alois Alzheimer, a German doctor who first described it in Auguste D., a 51-year-old patient he saw in 1901. Her memory, speech and comprehension were failing, and she suffered from hallucinations and paranoid delusions that her husband was unfaithful. Unable to finish writing her own name, she told Alzheimer, “I have lost myself.”

    She died in 1906, “completely apathetic,” curled up in a fetal position and “in spite of all the care and attention,” suffering from bedsores, Alzheimer wrote.

    A century later, patients still die in much the same way. Although Alzheimer’s itself can kill by shutting down vital brain functions, infections usually end things first — pneumonia, bladder infections, sepsis from bedsores.

    Ms. Latshaw, whose dementia was diagnosed in 1991, has not spoken in four years, and she can no longer smile. But she locks eyes with visitors and will not let go.

    “There is still something alive in there,” said her sister, Fritzie Hess, 69. “I’m convinced of it.”

    The family believes that, at least some of the time, she still understands them. They speak to her as if she does. She is with them, and yet gone, and they miss her terribly.

    In an interview in the summer of 2006, Ms. Kerley described her mother this way: “She’s completely withdrawn in herself. She hasn’t recognized us for a few years. Basically she hums one line of one song over and over again. She seems to be stuck somewhere in her life between age 4 and 5.”

    Ms. Kerley said she and her son Michael, then 21, visited every week or two.

    “She loves getting her back rubbed, being smiled at, being hugged,” Ms. Kerley said. “She doesn’t know who we are. We’re going for us, not for her, because she doesn’t remember us the minute we walk out the door.”

    Such vignettes are awful beyond words especially as I see Grandpa spiraling before my very eyes to the place where “He love getting his back rubbed, being smiled at, being hugged. He doesn’t know who we are, because he doesn’t remember us the minute we walk out the door.”

    Perhaps most troubling for me was the words, “A century later, patients still die in much the same way. Although Alzheimer’s itself can kill by shutting down vital brain functions, infections usually end things first — pneumonia, bladder infections, sepsis from bedsores.” To a person remote for the task of tending an Alzheimer’s patient this information means little. To me, any one of those listed deaths read as a failure in care. The abstract logical part of my mind said you can give the best care possible any someone might contract and die from pneumonia, bladder infection, or sepsis from a bedsore. But in that little paragraph I felt I had seen a brief glimpse into the future, and in that future I saw myself struggling to accept the fact that I was not capable of preventing those things, and that they had happened was not a testament to the failure in my care.

    If you wake up one morning to find someone dead from a heart attack or stroke you might feel sorry, but there was nothing you could do. Such death is swift. But sepsis from a bedsore–if you are the caregiver what guilt will you feel from that. Even if advanced age and paper-thin skin means bedsores are almost inevitable, how easy is it really to shake a sense of responsibility?

    I can only say, “God give me the grace.”

    It is very worthwhile to read the entire article, as it gives both a general understanding of Alzheimer’s and also educates on where the direction of treatment appears to be headed.

  • Still Alive

    Yes, I’m still alive. It has occurred to me that some readers may have taken my long silence as an indication that things were going badly up here on the crazy farm. As far as my personal and spiritual health and well-being that is not the case–if I am fit to judge myself. The last several months have been, for me, perhaps the best since I have come to live with, and care for, Grandma and Grandpa. That is not to say it has become easy street. There are good days, and bad days, and the health of both Grandma and Grandpa continues to decline. I guess a change is that I have come to feel that I have finally found a small bit of equilibrium in a world continually out of balance.

    Perhaps this is all just a set-up for the next event that will send everything pin-wheeling into a tail-spin again. In any case, for the present I feel that I am not so much just a rag flapping in the wind of the crisises blowing through the lives of the people around me. As a result of that, I finally have been able to take stock of my own life, and–with what little time I have to do as I please–set a course and labor toward goals. So, I haven’t been in the pits of despair–I’ve been busy.

    Many months ago I learned a particular fact about my current life: Beyond the regular routine required for sustaining normal daily life, I can only work on one thing that I wish to do each day. Depending on the day I may only be able to work a half hour, an hour, or maybe two hours. On a rare day (like a good Saturday) I may somehow manage to do two things. On a bad day (like most Fridays, which is grocery day) I don’t find time to do anything that I wish to accomplish. But as a general rule I can only work on one particular thing for myself each day, so if I am wise I think very carefully about what is most important that I wish to see done each day.

    And so for some time writing a post has not been chosen as the one thing I will do in a day. It isn’t that I have been swallowed in some swamp of despondency, or some other bad thing that perhaps some of you have wondered. There are posts I would like to write–but then, there are a lot of things I would like to accomplish also. So I have simply been busy doing other things.

    As it is the new year, and things have happened, and are happening, I thought to make time for a quick update.

    Grandpa

    Grandpa still has intermittent problems with chest congestion, but as it comes and goes I presently don’t make much of it. Otherwise, physically he remains much as when I last wrote.

    As far as his mental health is concerned, it is beginning to feel like he is starting to turn some type of corner. I’m not sure exactly what, and I’m not saying we’re going to be around that corner in a month or something. But it does feel like his mental symptoms are starting to progress to another level and the nature of things are in the midst of a colossal shift. He is growing increasingly demanding and needy and is more often in a state of mental shambles. Right now, as I type, he is sitting on the couch calling names–mostly for “Mother” (Grandma). He isn’t calling because he wants anything real–it is just what he does increasingly, now. He wants. If you answer he may say nothing at all, only to call out again in thirty seconds. Or he may spit out gibberish.

    I could go on at some length, but I will leave writing about Grandpa’s furthering condition for some other post.