Blog Posts from December 2013
Tuesday, Dec 3, 2013
On Amtrak coming through eastern Washington State
I’ve just returned from Seattle where I was visiting my son. On the train trip back, I became repeatedly confused trying to locate my seat. Here’s the process in some detail. Although I had a seat in one of the coach cars, I usually spend most of my time in the lounge car writing or reading at one of the tables. I have to return to the second coach back to my seat occasionally, however, for one reason or another. Several times, however, I got confused about which way to turn to get from the lounge car back to my seat. (Just to be clear: on a train there are only two directions to choose from.) One end of the lounge car has tables and the other swivel chairs, but during these episodes I couldn’t remember which end of the car I’d entered. I would take a few seconds and then head in the direction I guessed my seat was located. I’d walk a few steps, however, and then realize I wasn’t sure. So I’d have to concentrate on the logical connections between each step in the entire thinking process. It went something like this:
- I would remember watching the lounge car being physically hooked up at the very end of the train; therefore,
- the lounge car must behind my coach car; therefore,
- if I want to go from my coach seat to the lounge car, I have to walk toward the rear of the train; therefore
- if I want to go back to my regular seat from the lounge car, I have to walk toward the front of the train; therefore,
- I have to look out the window to recognize which direction the train is going. In my confusion, even if I looked at the scenery as it passed by I had to consciously decide which way the train was going. Therefore,
- I should walk in that forward direction; and
- while I walked through the coaches I should double check that I was going in the same direction that the seats were facing.
I actually had to go through each step consciously and deliberately, step by step. I was especially startled when the direction the train was going wasn’t intuitively obvious as I looked out the window; I’d have to decide which way the scenery was going and remember that the train would be heading in the opposite direction. But the bigger problem was that I couldn’t simultaneously keep in my mind the several needed bits of information. I would remember, for instance, that the lounge car was at the end of the train, but as I was trying to decide which direction the train was going, I’d forget where the lounge car was in relationship to the train. Or I’d figure out where the lounge car was relationship to the rest of the train, but get confused about the relationship between my car and the lounge car. It was very weird. And, then, on the way to my seat after having actually reasoned it all out, I’d get confused, stop, and have to go through the entire process again. One time I walked almost completely through one car, reversed direction, walked back almost to the lounge car, and then reversed direction again before I had it right.
And then other times, even when I got the direction right, I’d just forget where my seat was within the car. So I’d have to walk through the car looking for my suitcase in the overhead rack. A couple of times I went right past my seat it without recognizing it.
I felt confused, of course, but I was surprised that I wasn’t more frustrated. Part of it was that on the train, there’s no hurry with anything, so the confusion doesn’t cause a problem. But the other part (and I find this difficult to believe myself) was that I found the episodes fascinating: How, for instance, was it possible to look out the window yet have to consciously reason out which way the train was going? I did get embarrassed wondering what people thought of me wandering up one direction, stopping and walking back, and then changing again, but in reality, of course, no one was paying attention or would have cared.
And then just as quickly as it came on, it would be over until the next time. Mostly I’m fine and then something like this will happen. It is so intermittent.
Friday, December 6, 2013
Flowers for Algernon
On the train home from Seattle, I read Flowers for Algernon by Daniel Keyes. The novel is written as a series of journal entries written by Charlie, a mentally challenged man who has been selected to participate in a clinical trial of a surgical procedure designed to double or triple his IQ. Impatient scientists choose him as the first human subject after only one experimental mouse, Algernon, exhibits signs of increased intelligence. Indeed, the surgery is successful, and we experience Charlie’s increasing intellectual brilliance: he develops a photographic memory, learns ten languages, quickly becomes an expert in several different unrelated fields, and so on. However, we also watch, as Charlie becomes more isolated, not only because nobody can follow him intellectually but also because—in his emotional naïveté—he doesn’t recognize how he alienates others with his aloofness and lack of empathy.
But then Charlie notices that Algernon has begun to regress and is soon having trouble with the simplest mazes. Charlie, of course, recognizes his likely future: he will lose his newly acquired IQ and may even lose more than he had originally gained. He returns to the experimental lab and works feverishly, not to change the course of his own disease but to discover the metabolic pathways that doomed the surgical experiment from the beginning.
Meanwhile he chronicles his own decline. Knowing what’s coming, he has to watch himself deteriorate. Sound familiar?
It’s a good read, but I found two lessons particularly important. Charlie’s intellectual descent doesn’t seem to bother him as much as one might expect. He has succeeded in finding the medical reason behind his decline and feels satisfied with his life. Second, as he loses his intellectual brilliance, he opens up emotionally, and old, withered friendships become rich again, perhaps richer than before.
In this brief summary, the novel sounds Pollyannaish. It isn’t. It is, however, hopeful. Regardless of what too many of us in the culture believe, intellectual intelligence is not the be-all-and-end-all of life. There are, of course, intellectual geniuses who are also empathic and compassionate, so the issue is not intelligence per se. But there is something in his declining intelligence that allows a richer emotional life.
This rings true for me. I can’t really explain it, but at least I am finding that the increasing emotional openness and deeper friendships more that match what I’m losing cognitively.
As I’ve written before, there are caveats. First, I’m only mildly cognitively impaired and I may be watching through rose-colored lenses. In a sense, I have the best of both worlds: increasing emotional intelligence and still persistent intellectual intelligence. Secondly, Flowers for Algernon, like Still Alice, is a novel, a story, by a cognitively intact author who can only imagine the inner life of a mentally challenged person. Third, the story describes little about the suffering of others close to him and nothing about the suffering of caregivers.
Nevertheless, while it may or may not be an accurate depiction of intellectual decline, I found it deeply meaningful. I will eventually become profoundly impaired myself and will certainly die, but the journey does not, apparently, have to be the culturally expected suffering.
Blog Posts from November 2013
Sunday, November 3, 2013
Martha's Vineyard - (visiting my sister)
The responses to my last post about my normal cognitive exam have touched me deeply. Almost all of them have been notes of understanding, appreciation, and love. They’ve helped me realize what a wonderful little community has formed around this blog. And I suspect that the community is considerably larger than only those who post comments or email me.
Some of the responses have been of empathy and compassion. From these I receive a great deal of emotional support. It is important when one person will listen to another’s pain.
There are a few others of you out there who, like me, also have some degree of subjective cognitive impairment, but their objective neuropsych tests and brain scans are normal; you are or have been in a state of uncertainty similar to mine. It’s reassuring to know that I’m not alone, that this little community includes those in very similar situations.
Some of you have found a particular solution to your uncertainty and hung on to it; others have taken the route that I find most comfortable, learning just to live with the uncertainty. It is good that we take whatever will work for us.
A number of you have reminded me of the ultimate uncertainty of all medical science and especially with the brain where there are large areas still unexplored and not understood. As a medical person myself, I do at some level know this, so it’s good to be reminded. There is still much mystery in disease and healing.
A few readers have suggested that the spiritual task is to let go of the images of my “self,” whatever those images are. Buddhist teachings are insistent that hanging on to any images of self—“Alzheimer’s patient,” intellectual, blogger or teacher—leads to suffering. The self is an ever-shifting shadow that eludes any kind of definition. In the Christian tradition, too, we remind ourselves that whoever would save his life will lose it. Let go! Let go!
And then there are those suggesting other possible diagnoses. In most cases my doctors have ruled these diagnoses out (as much as medical science is capable of it) by the pretty thorough testing I’ve been through. But anything is possible.
A few have urged me try or at least look at new treatments. For a number of reasons that I’ve discussed in previous posts (here and here), I’m reluctant to begin treatments substantiated only by anecdotal evidence. (If I had followed one or another of these bits of advice and started coconut oil or done crossword puzzles or tried whatever, I’d now be the new poster boy for that treatment.) I understand well why others try these treatments and would not try to discourage them from that route. But it’s not mine, and I don’t even look very seriously at the details of new treatment. Nevertheless, I appreciate the concern with my wellbeing that the emails evidence. I’m grateful.
All of this indicates to me that there are a lot of us in need of information, community and concern. It’s all the more reason to keep trying to bring this dread disease out of the closet and into the light where we can all look at it and offer one another the help we need.
Thank you all for sharing in this community!
Thursday, November 7, 2013
“My memory is going, David; I just can’t remember names like I used to, and sometimes I can’t find the word I’m looking for. Am I getting Alzheimer’s?” Before dying, clearheaded, at age 88, my father asked the same question of me, his doctor son, almost every time we visited for the last twenty or so years of his life. He tried to cover his concern with humor, but he didn’t think his memory loss was funny.
His dilemma is common. It’s easy to confuse normal aging with the symptoms of early Alzheimer’s.
Some of us have minds just as clear as anyone else our age, but we worry that we’re impaired. Others of us can have significant cognitive impairment but we dismiss it as just normal aging. It can be difficult to know. It’s complicated by the fact that most of us who do develop cognitive impairment are also aging, so the normal changes of aging can slide imperceptibly into cognitive impairment.
While it might be tricky in those transition cases, it’s ordinarily not difficult to differentiate one from the other. A rule of thumb: When changes begin to disrupt our daily activities, it’s past time to be evaluated.
(Much of the following is derived from the Alzheimer’s Association website.)
Changes in memory are the first symptoms usually noted in both aging and cognitive impairment. It’s quite normal for older people to forget names or appointments (although we’ll usually remember the appointments later on), but if we find ourselves forgetting important dates or events, increasingly needing reminder notes to keep things straight, or needing to ask for the same information several times, then we might want to get checked out.
It’s not just memory, though: changes in any area of mental functioning can indicate trouble. As we age, it’s quite normal to make numerical or calculation errors when, say, balancing a checkbook or calculating a tip in our heads. However, having difficulty concentrating and taking longer to do things; having increasing trouble following recipes or keeping track of bills, or experiencing challenges in planning or in solving problems are different matters and should be taken more seriously. In my own case, the first sign my daughters noticed, even before I received a diagnosis, was that I was taking longer to complete the little home improvement projects I like to do when I visit them.
As older people, we might normally lose our sense of direction for a while, but when we forget where we are or how we got there, then it’s time for an evaluation.
We all lose things and it does seem to get worse as we get older. But when we not only lose them but also have difficulty in re-tracing our steps to find them or when we put things in unusual places (like the lukewarm coffee into the refrigerator rather than the microwave), then we’ve probably slipped over from normal aging into the area of impairment.
As we age, our judgment can become slightly less reliable, and we can make bad decisions once in a while. But when we make repeated mistakes handling money or pay less attention to personal hygiene, then there may be problems that should be evaluated.
It’s quite normal to feel weary of work, family or social obligations and want to quit. But when we actually withdraw from social obligations or don’t go to work, then things have changed.
As we age, we can get more set in our ways and less flexible dealing with newness; we can then become irritated when pushed out of our routines. That’s normal. But other changes in mood or personality—becoming confused, suspicious, depressed or fearful—are more serious.
Knowing the differences is important. There are treatable and reversible causes of cognitive impairment (vitamin B-12 deficiency, hydrocephalus, insufficient thyroid hormone, depression, medication side effects and other). So if we have any questions about our cognitive abilities, we should have ourselves evaluated earlier rather than later. The first step, however, lies in knowing roughly where the borderline between normal aging and abnormal cognitive impairment lies.
Monday, November 11, 2013
On Amtrak somewhere in West Virginia
Uncertainty and Trust
I’m learning about uncertainty.
I no longer have a reasonable medical explanation for my own experience. An extensive battery of medical tests gives no physical evidence of brain dysfunction. Laboratory results for many of the usual and unusual causes of cognitive impairment have been normal several times over. Two different MRIs of my brain have been negative for brain tumor, stroke or hydrocephalus. Two PET scans give no evidence of Alzheimer’s disease or even dementia. And, most disturbing to me, recent neuropsychological testing shows no evidence of any cognitive impairment at all. So intensive medical examination that would be expected to explain my symptoms cannot. There are no more tests to take. I must learn to live with the uncertainty. In the past I’ve not liked uncertainty, but this time it hasn’t been so bad. Whatever my impairment is, I’ve learned a lot over the past year about accepting uncertainty. Despite the uncertainty, I’m actually a lot happier than I was two years ago.
I can only wait and see what develops. Either my symptoms will get better, or they’ll stay about the same, or they’ll get worse. If they get better, I don’t think I’ll really care much about what caused them. If they stay about the same, I’ll probably never find out what’s causing them, but I’m in good enough shape right now that life would be fine. If my symptoms get worse, the physicians will eventually find evidence of my impairment if not a cause. So, I just have to wait.
I can partially explain my acceptance because—regardless why my brain function is slowed—there’s no treatment anyway. So the waiting becomes more of a spiritual discipline, a training period for living in the here-and-now and accepting the world as it is.
I’m learning to trust myself.
I’m a child of the Enlightenment, which accepts as definitive truth only things ultimately provable by physical evidence; according to that philosophy, just because I experience something doesn’t mean it’s real. It could be a mirage, a misunderstanding, a hoax, or all sorts of things that would make my own experience unreliable. As a physician, I had too many patients whose story simply didn’t match the evidence I had. True, for many of them their symptoms were psychosomatic: very real but due to emotional not physical causes. Some of those contradictions were later resolved by re-examining the lab or x-ray tests. But some were just mysterious. Unlike most physicians, I suppose, I felt responsible to believe those mysterious stories, trusting my patients’ experiences even if I couldn’t explain them, yet.
Trusting my own experience in the face of contrary objective evidence, however, is new for me, and it’s taking a little bit of practice to get used to it.
I know I’m experiencing cognitive impairment. I trust that it is real despite the evidence. I’m choosing to trust myself more than the evidence. This isn’t easy for me. Even writing this I feel defensive, vaguely guilty. (Just for you who worry about me, I don’t believe I’m guilty of anything; it just feels that way.) But this past year of living with uncertainty about my future has given me some small confidence to trust that I’m okay in the here-and-now. When I live in the here-and-now, uncertainty about the future ceases to matter.
Friday, November 15, 2013
The Truth of This Blog
I notice that I’m allowing the uncertainty of my diagnosis to inhibit my blogging. As I said in the last post, the uncertainty is not that difficult for me personally; my symptoms are no less real to me than before. I do realize, however, that, for many other people, the lack of objective evidence of cognitive impairment renders the value of this entire endeavor questionable. Whatever my subjective experience, if there’s no medical evidence of Alzheimer’s (or, worse, no evidence of cognitive impairment at all), then, for many others, this blog might be an interesting study in psychosomatic illness but of little interest to those who are concerned about the inner experience of Alzheimer’s. For those particular people, my writing about my symptoms may seem an almost pathetic, last-ditch attempt to convince myself and my readers of the reality of these symptoms.
All of which makes me a bit defensive writing this blog. Nevertheless, this blog is about my experience of whatever-I-have, so that’s what you’ll get. In fact, of course, the doubt of others and my defensive reaction to it are all part of the process, anyway. I just wanted you to know what’s going on internally as I try to sort out this new phase.
Anyone with early Alzheimer’s, I suspect, has such doubts. As I’ve worked with my uncertainty of the past few months, it’s been helpful to categorize my symptoms into two rough and overlapping groups.
First, there are the “Well-that-could-happen-to-anyone” complaints, such as loss of memory, difficulty in word finding, deterioration of my ability to type, and so on. Everyone has experiences like these and they increase as one ages. They’re poor evidence of disease.
Then there are the “Now-that’s-real-impairment” symptoms: getting lost in a place I knew fairly well, the severe loss of ability to work with spreadsheets, the episode with the keys and others. These are not easily dismissible.
Over the course of the last three years, I’ve had a number of the latter “Now-that’s-real-impairment” symptoms. They occur only infrequently—the last was at the beginning of August—but they’ve been important in helping me and others to accept my diagnosis.
There are also two things about the “Well, that-could-happen-to-anyone” symptoms that remove my doubt. First, their frequency has been staggering:
- I now search around the house multiple times a day every day to find things I’ve just put down. Not only have lost my beltpack three times over the past couple of years but I would also have lost it several more times if someone else hadn’t noticed and pointed it out to me.
- Anyone can have trouble word-finding, but I am daily having to use less-than-satisfactory substitutes for the word I want
Second, these symptoms may be normal for some people but they are decidedly not normal for me.
- It wasn’t until yesterday when I reread last week’s post on the difference between Alzheimer’s and normal aging that I recognized I’d written about the same thing at least twice before (here and here).
- I’ve been forgetting some of the “shortcut keys” that I’ve used in my word processing program almost every day for over ten years. Only later do they come back to me. My wife Marja is unimpressed: “I can’t remember any of those shortcuts at all.”
Maybe some other people have trouble with such things, but I never did before.
Because I’ve been aware, however, of how my normal tests this might seem to some others, I’ve become almost embarrassed to be writing these posts. But then I remember the purpose of this blog: to describe my own experience of cognitive impairment, whether or not it’s convincing to others. I’m to write down the truth of my experience, and it’s up to others to decide whether it’s helpful for them or not. My truth at this point includes my defensiveness and my reluctance to write about my symptoms. If this turns out to be a chronicle of a “worried well,” so be it.
Wednesday, November 20, 2013
Since I began this blog in January, I’ve received hundreds of comments and emails in response. Many have written to express appreciation for my posts and the subsequent comments. Especially over the last two weeks, people have written to encourage me to keep writing despite the uncertainty of my own diagnosis. It’s very gratifying, of course, but I do ask myself why the blog is so helpful.
Part of it, I think, is that I try to speak honestly, and that seems to encourage others to respond in kind. Isolation is a source of great pain for both the caregiver and the person with Alzheimer’s (or other cognitive impairment). This is still a disease that provokes shame; most people are afraid to speak of it or relate to it, which leaves both the person with Alzheimer’s and their caregivers alone with their disease. But here in this blog, the taboo can be broken, and we can think and speak more openly, sharing with one another, overcoming to some degree our isolation. For some readers, it seems that the embarrassment and humiliation are so acute that simply reading here about others’ openness and honesty is cathartic.
I’m reminded of Alcoholics Anonymous (AA), actually. A close friend suffered from alcoholism for many years. Before she got sober, I suggested a few times that she attend AA. No, she said. She wanted to get sober on her own. She didn’t want to be with those people. She tried to stop several times on her own, but it was only when she finally started going to AA that she began to recover. AA very quickly became the lifeline that enabled her to stay sober. For many years she went at least daily (sometimes several times a day), even when she was traveling. Today, years later, she still goes almost every day, and many of her friends are exactly “those people” she previously didn’t want to associate with.
AA is many things, but at its heart it’s a place where alcoholics can share openly about the day-to-day struggle to remain sober. There’s no “cross-talk,” that is, no one criticizes you, gives you advice, or even comments on what you said. Meetings are confidential, so members feel safe to speak candidly. Much of the miracle of AA, it seems to me, is simple: if I can talkwithout fear of censure about my pain and if others will simply listen and understand, my pain becomes more bearable.
I wonder if this blog doesn’t operate in somewhat the same way. Emails sent to me personally and comments on this blog frequently commend my “honesty” in describing my own struggle with my impairment. Part of what they are referring to, I think, is that they have no safe context in which they can speak openly about their experience: their fears, their grief, their mistakes, their anger, or even their joy. It’s not difficult to speak honestly when we feel secure and protected, so I’m assuming that those who find my candor helpful don’t have many places where they feel safe enough to speak honestly. They have no Alzheimer’s Anonymous.
Actually, there are groups all across the country that may be the equivalent of Alzheimer’s Anonymous. The Alzheimer’s Association has lists of groups for caregivers and increasingly of groups for those with impairment themselves. The groups are sorted geographically so that you can find one in your area. People write that these groups can be their lifelines. But too many people, I suspect, continue to struggle in isolation.
We all need a place where we can share without fear about the realities our experience, where another person will listen without judgment. This blog is one such place for me. It’s my hope that each one of us touched by this disease will find his or her own place to speak and be heard.
Monday, November 25, 2013
The Challenges of IKEA
I’m visiting my son Kai in Seattle. He’s a carpenter and currently building a basement apartment in his house. While I’ve been here, we’ve been installing kitchen cabinets together.
IKEA cabinets are, apparently, of good quality and relatively inexpensive … but you have to assemble and install them yourself. IKEA sells internationally and has chosen to obviate the need for translation by creating assembly instructions comprising only pictures and diagrams, no words at all. The instructions are very clever, walking you through complicated procedures one small step at a time. They are thorough and accurate, but they are not simple.
Since Kai’s the carpenter and it’s his kitchen, I’ve been the assistant, deferring to him in interpreting the diagrams. Yesterday, however, Kai asked me to attach a cabinet door. The assembly was a little different from the others we’d done, but not particularly complicated. On my own, however, I was completely flummoxed. The two of us had previously put one small part of the drawer together, but I couldn’t even find the place in the instructions where we’d stopped. I looked for ten or fifteen minutes and just couldn’t figure out where to begin. I told Kai, he took over, and we got the job done.
Afterwards, we watched football together, went for a long walk and picked up a pizza. On the way home, I asked him whether he had noticed any impairment in my cognitive capacities, anything other than my reports of what I was experiencing. He pointed to the difficulties with the IKEA diagrams. He told me that that’s the kind of thing you used to do better than I could.
He’s right. That kind of capacity to translate diagrams and interpret the proper sequence of steps to complete that task had always been a strength. I’d enjoyed similar tasks and would have looked forward to it as a challenge, knowing that if I took my time, I’d get it done. But that’s changed.
Kai and I talked about it later, and he asked if such impairment is frustrating for me. I would have thought so, too, but, in fact, it hardly bothers me at all. I’m cognitively impaired, I understand I’ll be increasingly limited and, importantly for me, that I am not to blame, so it’s been easy to let it go. I remain surprised by such equanimity, which had previously not been my forte, to put it mildly. I’m very grateful.
In diagnosing cognitive impairment, there are several different domains. Most common in Alzheimer’s is problems with memory, the so-called “amnestic” type. Non-amnestic symptoms include limited abilities to make sound decisions, judge the time or sequence of steps needed to complete a complex task, interact socially, or translate visual cues. In addition to a dominant impairment in memory, a second, lesser impairment in another of these domains is additional evidence for Alzheimer’s.
What surprises me is how symptoms can be so specific. Despite my inability to assemble the door to the cabinet, I was able to analyze several single-step problems that initially confused even Kai. Also surprising is how sporadic symptoms can be. On another day, I could probably have gotten the cabinet door assembled.
Thanksgiving, November 28, 2013
On Amtrak somewhere in eastern Montana
I’m finding it difficult to come up with material for this blog. I think it’s a form of writer’s block.
I suspect it has to do with my fixation on the scientifically determined medical diagnosis. For those of you who haven’t been following this blog, all my objective tests for causes, or even for cognitive impairment itself, have been normal, yet I’m still convinced it’s Alzheimer’s:
- I know I’m impaired;
- 80% of all people with cognitive impairment have Alzheimer’s;
- the pattern of my symptoms is typical of Alzheimer’s;
- my medical tests have shown no evidence for any other cause of cognitive impairment;
- therefore, I’m convinced, the likelihood of Alzheimer’s disease is high.
So I’m comfortable referring to my cognitive impairment as Alzheimer’s as long as I can take a few minutes to explain the scientific uncertainty of the diagnosis. But what do I do in a two-minute explanation? How do I refer to myself in a posting here for someone who might be visiting for the first time?
My discomfort, I think, comes from the fact that when I was practicing as a physician, my patients expected me to confirm their diagnosis scientifically. I was certainly aware that medical testing could be in error, so—if the science couldn’t explain their symptoms—I didn’t discount their experience, but my job, nevertheless, was to report the scientific facts. If the science and the patient’s symptoms didn’t agree, my job was to describe the discrepancy (usually at length) and give an opinion, not to make an absolute judgment. So, in those cases, I always felt the longer explanation was always necessary.
Furthermore, honesty is almost an absolute value for me, and saying, “I have Alzheimer’s” when the objective testing suggests otherwise feels misleading. Yet, if I describe my illness in the elevator version as a “subjective cognitive impairment,” almost no one’s going to understand what I’m talking about, so such a description is misleading, too. So, in fact, describing myself as having Alzheimer’s is less misleading. Nevertheless, I’m emotionally uncomfortable without the qualification.
I believe I need to get over my qualms. I will change the introduction to the blog and to my website to reflect the uncertainty, but, despite my discomfort, I’ll include the word “Alzheimer’s” in my two-minute, elevator version.
I hope that getting over my irrational scruples will help break this writer’s block.
I remain grateful for the support so many of you have expressed.
 There are several different groups (formally referred to as “domains) of symptoms of cognitive impairment: loss memory (amnestic memory loss); impairment in concentration ; general slowing of capacities (for example; taking long to do things); trouble following recipes or keeping track of bills; and challenges in executive function (for example, in planning or in solving problems)
Blog Posts from October 2013
October 3, 2013
During the 1980s, Lois Wagner was my boss and colleague at Community of Hope Health Services, a small inner-city clinic that she had founded. In 1990, she joined us at Joseph's House living with and caring for homeless men with AIDS. We have remained close friends even as she moved to San Diego to become a professor of nursing at Point Loma University and then retired to Kalispell, MT where she has lived with and cared for her mother who has Alzheimer’s.
Guest Post: The Journey of Caregiving
By Lois Wagner
I am a 72-year-old living with and caring for my 95-year-old mother. I am also a nurse by profession and have spent many years caring for and teaching about caring for people at the end of life. As I’ve been reading David’s blog while mother’s cognitive abilities diminish, I have become more reflective on my journey.
Moving from companion to caregiver
I have now been with my mother for six years as companion/caregiver. We have slowly moved from being primarily companions to my being her caregiver. However, the caregiving has to be done with some finesse. It truly is like a dance. Sometimes I need to move in close and help her a lot and sometimes I need to back off and let her do things herself. Which means sometimes it seems like I’m stepping on her toes because I moved in too closely and other times I pull away and she almost falls--either literally or figuratively. The transition from companion to caregiver is not always clear or consistent.
Not asking questions
The idea of not asking questions as mentioned in Contented Dementia has been a very helpful one for me. I have found that mom gets very anxious if she is put on the spot with a question even about what to eat. But if I muse out loud, for example, “I’m thinking about either soup or salad today; can’t quite decide; well, maybe we’ll have soup,” she will often either agree or say she’d rather have the salad. It’s been really kind of fun to see if I can reduce the number of questions to as few as possible as a means of increasing her sense of well-being and decreasing times of “ill-being.”
Learning to wait and be late
I am learning to wait and to be late. No matter how much time we plan, it seems that there are always last minute needs that arise and it does not work to try to rush or hurry. In the big scheme of things it’s not so important to always be on time.
If I get too busy or stressed, mom reflects that in both cognitive and physical symptoms. She’s a gauge of my stress level.
Routine and ritual
We have instituted a couple of daily routines that bookend our days. In the morning I read out of a little meditation book and she reads corresponding Bible scriptures. Her Sunday School training is still there and she can even find those obscure books in the Bible and seems quite pleased with herself when she does. Often she will read a scripture that is a little more abstract and she will grin and say “Whatever that means,” and we will laugh and move on. In the evening I was finding it difficult to get her to go to bed. She would say she was going to bed but would just sit there. So, I stand in front of her and put out my hands and say, “Let me help you get to the bed.” She looks up at me with a smile and we walk down the hall hand in hand. I put lotion on her feet and pull the covers up and we look each other in the eyes and say, “I love you. Sleep well. See you in the morning.” I put on her music and leave her to sleep, which she does well.
I continue to learn about change, acceptance, expectations, frustration, flexibility, silence but most of all about love as we make this journey together.
Monday, October 7, 2013
In the Fog
Sometimes there are tiny views of what my future holds. The view last week was more disturbing to me than usual.
A friend who volunteers regularly at Joseph's House had invited me to have breakfast there, help him clean up and talk a little. To help with clean-up, I took my place at the sink to wash dishes. The drill is to wipe excess food off the plates, wash them in soapy water, stack them near the sterilizer, put them into the sterilizer as each load is finished and then put them away. Pretty straight forward!
However, I found myself at each stage in the process uncertain what to do. If the little place designated for stacking the soapy dishes filled up, where else should I stack them? If there was coffee in the cup, did I need to wash it or was it enough to toss the coffee and put the cup directly into the sterilizer? When it was time to put the cups away, where were they stored? (Answer: right in front of me). How much dish soap should I pour into the basin?
These were minuscule decisions, and they didn’t matter. If the spot for stacking the dishes filled up, put the dishes anywhere. If I don’t know whether to wash the coffee cups or not, go ahead and wash them; it’s not a big deal. What did it matter if I put in too much or too little soap?
I was in a mental fog, detached from the place and the others in the kitchen. What was most distressing was a sense of dependency on others; I felt I needed to ask someone about almost everything, yet I felt weird about asking. I felt others' eyes on me (although I don’t know if that was true or just a subjective sense.) My world contracted to the tiny space around me.
I am ordinarily treated with deference at Joseph's House. New volunteers, especially the year-long interns, know of my role as founder and have at least heard of my books if they are not already reading them. The deference has always been embarrassing so my response has been a bit self-deprecating. The truth, however, is that I also enjoy the deference and am willing to put up with my discomfort.
So were the volunteers noticing my confusion? As I worsen, will their opinion of and respect for me change? (Of course it will, especially as the volunteers change every year.) How will that feel to me? And what will it be like to visit at Joseph's House as I lose that place of special respect? Will I even want to visit as I worsen? For the first time, I felt some of the isolation that is probably coming … not because others isolate me but because—in my embarrassment—I isolate myself.
Thursday October 10, 2013
Confusion … Again
Marja and I visited friends the other night. They’re a small group of twenty-somethings who live near-by in community, and each volunteers at an anti-poverty ministry in the city. Our conversation turned to the role of the Millennials in the politics of the next generation. I mentioned The Fourth Turning, a book quite relevant to the conversation and tried to give them a synopsis. But I got lost in my own words. When I realized I couldn’t find my way through to an adequate description, I said to the volunteers, “I can’t do this! I’ll just have to stop.” I’d told them earlier this year about my Alzheimer’s, so I acknowledged my confusion, and we went on with the conversation.
I noticed three things. First, I believe this is the first time I’ve gotten confused enough that I had to give up half-way through a conversation. It feels like a further step down the ladder.
Second, I was gratified not to feel embarrassed by the episode. The conversation just continued on as if it were normal for someone to get confused by his own thoughts. Nobody seemed weirded out.
Third, I wonder how this will affect my willingness engage in complex conversations. Will I be comfortable with trying to explain The Fourth Turning again? But the reminder is: “Use it or lose it!” If a person with moderate Alzheimer’s, for instance, has trouble buttoning her blouse and her husband jumps in to help and then proceeds to take over every time a blouse needs buttoning, his wife will quickly lose the skill altogether. Better to let her struggle for awhile until it’s clear that she can’t do it.
Mine, of course, is a cognitive, not a muscle-coordination problem. But the principle is the same. It will be better for me to continue engaging in such discussions, even of The Fourth Turning, until I’m sure that the capacity is really gone. That will probably result in a few more potentially uncomfortable times before it becomes clear that I can no longer do it, but I also don’t want to shut down any earlier than I have to.
In my previous post I described my confusion washing dishes at Joseph's House. I wondered whether it would cause the interns’ “opinion of and respect for me [to] change.” I received several comments and emails from readers who thought it unlikely I’d lose the interns’ respect as I worsened. They’re probably right. Actually, even as I wrote the post, I struggled to find an appropriate word and used “respect” because I couldn’t find just the right one.
One reader suggested that what others might lose is not respect for but interest in me. That feels accurate. Even as people continue to feel respect for me, it’s only natural that some will feel little interest in spending time with me. I had exactly that reaction to Robert Greenleaf, an author I greatly admire, when he visited us here in Washington. Once it became clear that he was cognitively impaired and that it would keep him from meaningful discussion, I saw no purpose in remaining and left as soon as I could without being grossly impolite. I don’t feel proud of that, but it certainly seems a normal reaction and I can’t see any reason it should be different in my case.
In case any of you is wondering, I won’t be getting the results of my neuropsych evaluation until after the government shutdown is over, and the National Institutes of Health can reopen. Given that the latest suggestion from the Republicans to extend the debt ceiling debate for another six weeks or so while keeping the government shuttered, my results may be a while. Other people’s problems with the shutdown are certainly greater than mine, but I’m still frustrated.
Monday, October 14, 2013
Win Some, Lose Some
I attended a three-day anti-racism seminar last week. Our Eighth Day faith community is discovering that to truly invite people of color into our community we must do more than put out a welcome sign and be well-intentioned and friendly. There are also institutional structures within our community that are barriers to true fellowship. Furthermore, within those of us who exercise power in the community (almost all white), there are unconscious attitudes and beliefs that maintain racism within the church. The path to changing these structures and attitudes goes through minefields of history, anger, privilege and blindness, but a group of us (half black, half white; half male, half female; half from Eighth Day, half from other communities) met with a trainer to explore the issues more deeply and make plans together about how we could facilitate change in our communities.
Five of us had a significant three-hour conversation one evening about some specific issues within the community. It was intense, emotional, complex and difficult. I felt I needed to be at the top of my game to contribute helpfully to the conversation; to avoid the most dangerous of those mines scattered throughout our discussions; to help clarify some of the subtle, complex issues; and to be open to the pain, anger, and feelings of betrayal while emphasizing the good will, the possibilities for hope, and the importance of our task. And it did happen! I was not only extraordinarily grateful that the five of us could trust and care for one another, but I was also aware that despite my cognitive impairment I was just as sensitive, just as creative, and just as helpful as I have been at any time in my life. And the expressions of gratitude I received afterward confirm that the others felt my presence helpful, too. At the end of the conversation, in fact, one of the African Americans among us chuckled and shook his head, saying to me something like, “I thought you had Alzheimer’s!” He meant it as a compliment and gratitude for my participation.
I don’t want to exaggerate my role or suggest that the courage, the sensitivity and the dedication to our community that each the othersbrought to that conversation were not equally essential to what we accomplished. I mean only to say there are significant parts of me that Alzheimer's has not yet hobbled.
The two previous posts here have been about significant cognitive impairments that will inevitably worsen. Much of the time—even in conversations like those last weekend—I forget important details within a few minutes after they are described. Yes, that impairs to some degree my participation any conversation, but what has remained, and possibly even sharpened, is my capacity to listen deeply, to hear another person’s pain, to understand the larger picture out of which that pain comes, and to clarify the issues and possibilities.
Am I impaired? Most definitely! But certain gifts remain. They too, of course, will eventually be gobbled up. But for now, I and those who love me can be grateful.
I keep hearing from caregivers who write me that the capacity to relate to another person may be one of the last to go in Alzheimer's or any dementia. That, it seems to me, is a great blessing.
A lighter moment: Our community was on a separate retreat this past weekend. I mentioned to a friend that I’ve been greatly enjoying Discovering of Witches, a delightful novel about witches and vampires. My friend recognized that witches and vampires were not exactly the usual subjects of my previous reading habits; he was so amused that he went around telling others in the community. After hearing about it, one of those told said seriously: “It’s such a tragedy, isn’t it?” He meant, I suppose, that reading about vampires and witches represented a major decline in my capacities. Me? I’m grateful I can now explore new worlds.
Friday, October 18, 2013
Is It Always My Fault?
I’m having more of these good-days/bad-days experiences.
Monday, evening I met with a Gettysburg College class on homelessness that had come to Washington for some direct contact with poverty. In preparation, they’d read Not All of Us Are Saints, my book of stories about my providing care to the poor in Washington. I gave them a brief lecture on the origins of poverty in the inner city, and they had lots of questions. After an hour and a half, the students were flagging a bit, but I decided to tell them about my Alzheimer's. That seemed to re-energize everyone, and we had a good discussion. Once again, I had no trouble in a small-group setting. It was rewarding for me and, I think, helpful for them. I was gratified.
Then I came home to discover another of my screw-ups. We’ve been trying to get rid of bedbugs in our apartment (long story). The last time we’d used the vacuum cleaner was to suck up any lingering critters. Marja had wanted to throw the vacuum bag away so that any of the bugs swept up wouldn’t escape back into the apartment. But I decided we could just take off the bag, seal it in plastic and reuse it the next time. Then I stored it in its usual place inside the vacuum cleaner without even a note anywhere to remind us what I’d done. Monday, Marja had spent much of the day scouring the apartment to get rid of the bugs, including a fair amount of vacuuming. When I came home, I took over, only to eventually discover the disconnected, sealed-up bag. We’d both spent a long time vacuuming with a machine that sucked things up but then leaked them back out again.
Unfortunately, I didn’t remember anything about what I’d done with the bag. So I blamed Marja. She, naturally, blamed me. After a little bit of the typical husband/wife back-and-forth, I felt angry and blurted out something like: “So anything that happens is now automatically my fault?!!” Only gradually did I begin to remember and recognize it was, indeed, my fault. It was humiliating.
But, given my Alzheimer's, when something ridiculous happens and neither of us knows why, doesn’t it make sense to assume that I was responsible? Occasionally, of course, it will be Marja’s fault (her memory isn’t perfect, either), but by far the likeliest candidate is going to be me. That’s just the reality. And that means that I have to come to terms with it.
I would like to get to the place where I can, even in the moment, acknowledge that I’ve probably done whatever ridiculous thing that just happened. I would like to get to the place where I don’t feel defensive or humiliated. Perhaps both Marja and I can get to the place where we don’t need to waste emotional energy pinning down who did what. Perhaps we can get to the place together where we even laugh at the ridiculousness (if it is, in fact, funny).
I think we can get there, but it will take work on both of our parts.
Thursday, October 17, 2013
I’ve begun to read Daniel Kuhn’s Alzheimer's Early Stages. The book is directed toward “care partners” (his word, as opposed to “caregivers”) and not particularly toward the people with Mild Cognitive Impairment (MCI) themselves, but my reading has so far stimulated my thinking. He writes about hearing the diagnosis:
[T]he person with the disease usually receives the diagnosis with little or no emotion and few if any questions. … Those with AD [Alzheimer's disease] seldom grasp the full implications of the diagnosis. Even those who are well aware of their symptoms ordinarily do not appear overwhelmed by the news. It seems that the ability to understand the magnitude of the situation may be blunted by the disease itself. Those with AD typically do not share the same perceptions of the disease as others close to them. In a sense, the disease is often accompanied by a cushion that softens its meaning for the affected person.
This raises the question, of course: Where does this cushion come from? Kuhn suggests that it’s because the person with Alzheimer's does not grasp the full implications of the diagnosis as well as a person without impairment might receive a diagnosis of, say, terminal cancer.
In my case, at least, I would argue the point. It’s certainly true that upon receiving the diagnosis I showed little emotion and had no immediate questions. It’s true that I didn’t share the same level of grief as others close to me. But I don’t think it was because I failed to grasp the “full implications” of the diagnosis. No one really understands the full implications, of course, until he or she begins to experience them. But I knew what was coming as well as anybody!
So what does explain why the diagnosis caused me so much less shock than it seemed to cause others around me? I don’t have a good answer. I suppose it could be that my deep introspection precipitated by my previous depression and consequent decision to leave medical practice left me more prepared for an overwhelming diagnosis like Alzheimer's. Perhaps it had to do with my history of meditation and the recognition that as long as I was able to remain in the present, I had no reason to fear. Perhaps it was because I hadn’t experienced anything frightening yet, and was more interested in the diagnosis than afraid of it. Perhaps I realized subconsciously that the experience of the disease is worse for others than for the affected person.
Or perhaps I’m just an inexplicable exception. That seems unlikely, so I wonder if others have had similar experiences of a cushion upon hearing their diagnosis.
I would like to hear from you, either as a comment or in an email. What was your reaction to finding out? If it was similar to mine, do you have an explanation for the cushioning from the shock that you experienced?
Wednesday, October 30, 2013
Letting Go of Alzheimer’s
Since my thorough neuropsychological evaluation for cognitive impairment in late August, I’ve been nervously awaiting the results, which had been delayed in part by the government shutdown, including the National Institutes of Health (NIH). Last Tuesday, I finally got them: the tests were completely normal; there’s no sign of cognitive impairment.
This is, of course, wonderful news and should be a great relief. I tend, however, to be a glass-half-empty kind of guy, and I don’ feel much relieved: I’ve traded a diagnosis (Alzheimer’s disease) for a set of disturbing symptoms with no reasonable explanation.
In case you’ve been reading these posts only occasionally, let me summarize my situation. About three years ago I started having symptoms of cognitive impairment (getting lost, inability to perform certain bookkeeping responsibilities, increasingly poor memory, losing things constantly, and so on). Two years ago I visited a neurologist who administered the usual cognitive testing, which revealed mild impairment. Repeat testing a year later also show a mild degree of impairment. Other major causes of cognitive impairment were ruled out, so I was left with a diagnosis of Mild Cognitive Impairment (MCI), probably Alzheimer’s. This blog has been a description of my ongoing experience with this impairment.
As part of research studies that I’ve participated in, I have now had three brain scans over the past eight months, none of which has shown any sign of Alzheimer’s disease. This most recent neuropsychological set of tests at NIH was very intensive and extensive, about four hours in length. Unlike the previous, less thorough tests of cognitive function, this more rigorous evaluation shows no sign of cognitive impairment.
So I now have a set of symptoms that have impaired me for several years but for which I can find no reasonable explanation. The reason I have avoided making entries in this blog over the past week is that I haven’t known what to write; this has so stunned me that I’ve had to talk it through with family and some friends. So far, I can’t explain it in any reasonable way. Here are some of the thoughts I’ve had.
- Perhaps my previously diagnosed cognitive impairment has resolved and I’ve gotten better.
Unlikely. My symptoms haven’t gone away. Also, any cause of cognitive impairment (of longer than six months) that might improve with time (vitamin B-12 deficiency, for instance) has been medically ruled out. These things just don’t get better.
- Perhaps all the brain scans and the neuropsychological tests have been wrong.
Unlikely. Any medical test, of course, can be normal even when the disease is present. In the case of the tests I’ve taken, this “false negative” rate is very roughly 10% for each. Mathematically, that means that there is more than a 99.99% chance that at least one of the tests would be positive if I had Alzheimer’s.
- Perhaps it’s some other form of cognitive impairment.
Unlikely: Not only have I been thoroughly evaluated to rule out the other reasonable causes, but the intense cognitive testing indicates no sign of impairment for any reason.
- Perhaps I’m imagining it.
Always a possibility, but people very close to me have also seen obvious evidence of impairment for several years and no one, including a trained psychologist who knows me well, finds this possibility credible. I don’t either.
There are a number of other possibilities I’ll explore in later posts, but for now, any explanation I’ve been able to come up with is highly improbable.
As I written before, all of this can be extremely unsettling. For several days last week, I felt quite unmoored. I’d come to terms with my identity as an Alzheimer’s patient and now it had become, at the very least, uncertain. This life over the past year as an Alzheimer’s patient had become very meaningful and fulfilling. What was I now? What was I going to do?
But after lots of conversation with friends and family, I no longer feel so unmoored. This is but one more twist in a bumpy, uncertain road. I can trust myself and my perceptions. I can simply wait for the next step in this strange journey. I feel ready to let go and see what exciting thing will happen.
These test results, whatever they ultimately mean, are good news. At the very least, the impairment I perceive is progressing very slowly. At the very least, this is another opportunity to learn to live with uncertainty, just as most people with mild cognitive symptoms have to. It’s an opportunity to let go of self.
This wild ride continues.
Blog Posts from September 2013
Tuesday, September 3, 2013
Weeping in Church
I’ve been more emotionally open since my diagnosis of Alzheimer's, and I like it. I’ve written about this deeper emotional experience before, but I continue to be amazed and grateful for this new part of my life.
I am enjoying contact with people more, especially the brief contacts with people I know well. I’m physically touching people more, feeling their concern for me, feeling actively grateful for their friendship. As an introvert I still don’t like trying to make conversation with people whom I don’t know (at a party, for instance), but it’s been a bit easier and more enjoyable.
Frequently the beauty or depth of an experience will bring tears to my eyes, especially during our Sunday worship services. Our faith community is fairly small, perhaps forty in attendance every week, so we know each other well. Several mentally retarded people come to our services as do several with mental illnesses in various stages of control.
Every week, we have communion and members of the congregation serve one another. Sometimes, when one of these folks offers me the bread or the juice, I am overwhelmed by profound feelings … of gratitude. Part of it, I think, is the experience of communion itself, the sense that there is something more than friendship or acquaintance that binds our community together. Part of it is the recognition that we—this man or woman who is serving me communion and I—belong to the same human community. In this moment the barriers that I too often put between us drop away. Our commonalities far outweigh our differences. I feel gratitude that this particular person and I come together to share something meaningful with each other. And joy wells up within me.
I don’t know quite how to describe this experience of joy; perhaps, it’s indescribable, but it seems to be physical. It’s as if I’m being broken open to a deeper reality. I feel tightness rising in my throat. My face twists up as if to cry. Tears fill my eyes (but aren’t enough to spill over onto my cheeks). If I’m saying the words of communion, I have to stop for a second or two, almost choking on the words. When I am again able look back at the person, I often experience a moment of peace and sense of deep spiritual connection with him or her.
We also have five or six good singers and musicians who lead the music in the church with creativity and energy. We often sing songs we know well: spirituals, music that one of the musicians has written, beautiful classic hymns. For one of the songs recently, Connie asked those who could to sing the descant. I’ve forgotten the particular song already (no surprise there!), but I won’t forget the welling up of joy in listening to “angel voices.”
On balance, I’m surprised to find, the increase in emotional openness more than compensates for the loss of cognitive function. I don’t expect that that will continue as my impairment gets worse, but for now I’m grateful.
September 9, 2013
Yes, Get Yourself Tested
Last Friday I visited the Montgomery Hospice in nearby Maryland to speak to a group of fifty staff and volunteers who work with patients with Alzheimer’s disease or some other dementia. For twenty minutes I described my history, my equanimity (so far) in the face of the disease, and my paradoxical joy in the call I’ve been given around Alzheimer’s.
I was surprised (again) by the energy and intensity of the questions. In a past career of public speaking, I’ve presented about poverty, or American politics and economics, or matters of faith. Usually the questions go on for about ten minutes and then peter out. But this past Friday, the questions were still coming, some with considerable intensity when after a full hour and a half together, time ran out. Something similar has happened in every such conversation so far.
A most common question is some version of “I may be having symptoms; should I get tested for cognitive impairment?” Most of the time the underlying question is probably, “Do I really want to know?” Alzheimer’s disease seems so frightening and there’s no treatment, anyway, so what’s the use of dealing with it before I have to?
I’m beginning to believe strongly that, if you’re having symptoms (other than a mild slowing in your thinking or some difficulty in remembering names and faces, which may be normal), it’s important to get tested and find out whether you have some cognitive impairment … whether you want to or not.
The most important reason is that not all cognitive impairments are Alzheimer’s or on their way to becoming Alzheimer’s. Many are due to some other disease that is treatable or even reversible. While not curable, vascular dementia (due to small strokes) can be stabilized by stopping cigarette smoking, lowering cholesterol, reducing high blood pressure and controlling diabetes. Normal pressure hydrocephalus can sometimes be treated. And some other dementias—such as Parkinson’s disease, Lewy Body disease, Frontotemporal dementia, Pick’s disease and other rarer forms—will have courses different from Alzheimer’s that might be helpful to know about.
And there are some causes of dementia that can actually be cured:
- thyroid disease,
- over-medication or side effects from even appropriate doses of certain medications,
- some vitamin deficiencies and
- abuse of alcohol.
The second reason for knowing is that it’s important to be able to plan for the future with spouse, children and close friends. These people will need to know how you want to be treated when you can no longer guide them. A related reason is that financial planning needs to be done early, especially planning for long-term care.
There are a number of other reasons to get tested that are more individual. In my own case, worrying is always worse than knowing. I’d much rather be dealing with a known enemy than wondering whether he might be lurking around the corner. I also want time to prepare friends and family to move through this journey with me, to alert them to what’s coming, so that we can avoid some of the stigma and embarrassment that too often accompanies this disease. If I’m noticing symptoms, friends and family are going to notice them sooner or later, too … whether I get tested or not. If I get tested and everybody knows, we can work consciously on our changing relationships rather than feel embarrassment and pretend that nothing is wrong.
The question becomes much more difficult when the patient himself is mentally incapable of recognizing his symptoms (anosognosia) or is in psychological denial. In the former case, he may be willing to trust his spouse or children to go for a neurological exam, anyway. The person in psychological denial may be the most difficult. In such cases the better part of valor may be retreat.
[In early August I mentioned I would have a neuropsychological evaluation at the end of the month. I had the evaluation two weeks ago but am still awaiting the results. I suspect that the tension I’m feeling as I await results may unfortunately be keeping my well of material from which I usually draw pretty dry; hence, no post in the past week. I expect I’ll have lots to say when I know more about what’s going on.]
Friday, September 13, 2013
It was exactly one year ago today that the neurologist told me I had "mild cognitive impairment" (MCI) that would almost certainly progress to Alzheimer’s. Shortly afterward, I got lost a couple of times while biking, made several major mistakes in the bookkeeping I was responsible for, and noticed increasing difficulty in keeping more than one or two things in my head at the same time. It was bad news, but it all seemed consistent and pretty straightforward.
But then in late spring and early summer, I had a series of brain scans looking for physical evidence of Alzheimer’s, and they were completely normal. 2½ weeks ago, I had an extensive neuropsychological examination of which I'm awaiting results. During the examination, it seemed to me, my memory wasn’t as bad as it had been. For the last couple of months, it has seemed to me that I've been somewhat sharper than before.
Last year's clarity about what I have and where I'm heading has become murkier.
It may not be mysterious at all. Perhaps I've gotten so used to the memory impairment that I don't remember anymore what it was like to have a normal memory. Alzheimer's is a disease that is better some days and worse others; perhaps I'm just in one of the better phases. Perhaps I'm one of those people whose disease progresses very slowly (as people with Alzheimer’s but normal brain scans tend to be).
Or could I be even getting better. The negative brain scans have opened up the possibility that my symptoms have been due to something other than Alzheimer’s. The problem is I don't know for sure, and I don't like the uncertainty.
Is it possible that I'm actually improving and could return to normal? I've been doing some reading about mild cognitive impairment (MCI), but it hasn’t clarified an answer to that question. As I mentioned in the last post, there are a number of treatable, even curable causes of dementia: thyroid disease, alcoholism, vitamin deficiencies, depression, and medication side-effects. So if I had MCI from one of those, it would be possible to improve. A thorough medical examination can diagnose any of those diseases, however, and I've had a very thorough medical exam which was normal for all of them.
If my MCI were due to little strokes (vascular dementia), then if the strokes stopped, my MCI could remain stable, too. But the brain scans I've had (the CT scan and the MRI) should have picked up little strokes, and they were normal.
So are there other forms of MCI that might remain stable or even get better? The Alzheimer’s Association’s recent report, 2013 Alzheimer’s Disease Facts and Figures, states that some people with MCI don’t seem to progress onto dementia and even improve, but research scientists don’t really know why. And, apparently, if your MCI is, like mine, an impairment mostly of memory, then it's unlikely to improve.
All of that leaves me feeling just a bit confused. I'd like to have a long discussion with one of the neurologists, but they, understandably, want to wait for the results of the neuropsych exam.
So I wait and try to learn about uncertainty.
Tuesday, September 17, 2013
I was reading a book on Christian spirituality last night before bed when I realized that I was understanding very little of it. I got the general principles, I suppose, but much of what the author was writing was too abstract, and I found myself just reading along, understanding all the words, all the sentences, but not really getting anything out of the reading. I hadn’t read much by this author before, so I blamed it on his writing style.
Then I picked up another book on my nightstand, this one on Buddhist spirituality by a neuropsychologist who writes about brain structure and function, how they are involved in happiness and suffering and their relationship to Buddhist practice. I was fine (even found it very interesting) as long as he was writing concrete descriptions of the brain: its gross anatomy; the 100 billion neurons, each with 5000 connections to other neurons; the relationship between the structure and function of the brain to our suffering or happiness; and so on. I understood these concrete details, but, as soon the chapter veered into the abstractions behind them all, I recognized again that I was getting nothing out of the reading.
It wasn’t that these books were too complex for me to understand. The concrete details of the neurology, for instance, were just as sophisticated and complex as the abstractions of the spirituality (if not more so). But the neurology was tangible and material; the spirituality intangible and conceptual. It was the abstractions behind the Buddhist practice (and Christian spirituality) that got me.
I’m very familiar with both Christian and Buddhist spirituality and have enjoyed such books before with no trouble understanding the concepts. Something in my brain has changed. This change is not just about the impairment of memory, at least not directly. This is about the impairment of comprehension.
Another example of my impairment showed itself on Sunday. In our small faith community, as I’ve mentioned before, we serve each other communion. We line up in one of four separate queues, and each of us receives the bread and the juice from the person in front of us. After each one finishes, he turns and serves the person behind him. This past Sunday I received communion from Wendy in front of me but then walked directly back to my seat without serving my wife Marja who was behind me. I’ve certainly never done that before! Marja told me later that Wendy and she just looked at one another, tacitly acknowledging that each understood the source of my confusion.
A few minutes after I’d returned from the line and sat down, I realized what I’d done. I noticed that I didn’t feel embarrassed by what would have otherwise been very embarrassing for me. I knew that Wendy already knew what was behind my forgetting. She didn’t have to wonder what was going on, to check in with other people to see if they had noticed anything, to be a little embarrassed the next time our eyes met. Both she and Marja understood; they could shrug and move on. I could shrug and move on. I was once more grateful that I’d shared my diagnosis with the community before things like this started to happen.
Sometimes I wonder if I’m just imagining or at least exaggerating this cognitive impairment. Sometimes it’s obvious I’m not.
Either way, a friend has reminded me, I will not find equanimity in getting caught up in the debate.
Saturday, September 21, 2013
People like me don’t fit the image of Alzheimer’s disease, and we’re usually invisible to the media, the medical system and the public.
I’ve commented on this before (for instance here and here), but I had an especially powerful experience of our invisibility a few days ago. I’d been invited to participate in a large panel discussion in a press conference announcing the formal release of the World Alzheimer Report 2013. The fourteen-or-so panelists were each given an embargoed copy of the report a few days before the conference and asked to comment. As I looked through the 92-page document, however, I didn’t find a single reference to mild cognitive impairment (MCI), to people who look like me. True, the conference conveners should be recognized for giving me and one other person with Alzheimer’s a place on the panel and the Associated Press recognized for its article. Still, as far as I could tell, we were left out of the report itself.
Since the emphasis in this year’s report was on caregivers, I was especially surprised at being left out. People like me, of course, don’t need care yet, but I would guess that the help and attention we get now will make a considerable difference in how difficult it is to care for us later.
These are a few of the questions I asked in my allocated two minutes on the panel:
I’m at an early stage of my disease and still mentally competent. If I talk openly with family and friends about my diagnosis and come to some internal peace with it, will that change how difficult it will be to care for me later on? What can doctors or nurses or social workers do now that might make it easier for person to find that internal peace and so reduce the future burden on caregivers?
If I include in the conversation my wider circle of friends and community, will they be able to give me more support now and to give my wife Marja the support she’ll need later on, reducing her exhaustion and allowing me to be kept at home longer? What can we do now to help Marja, other family members and friends to be more able to care for me later?
Will making financial plans now (while I’m still competent) make later care less agonizing for my family? Is there inexpensive or pro bono help available?
If my family and I discuss now how I would want those difficult, end-stage questions, to be answered, will that ease their stress when the time comes?
Each of those questions becomes more difficult when the person with Alzheimer’s is incapable of recognizing their own symptoms (anosognosia). How is that different from psychological denial and how do we tell the difference between the two? Does the difference matter to our care later on? What can we do now to help in the care or preparation for care in the case of someone who doesn’t recognize that anything’s wrong?
The unfortunate fact is that we don’t know the answers to any of those questions. No one has done the research. And we won’t know until our image of Alzheimer’s changes to include people along a wide continuum of disease. The staggering amounts pain to caregivers and of money from all of us ($200 billion a year for long-time care of Alzheimer’s alone) are shouting at us to wake up.
September 24, 2013
The Difference Between Mild Cognitive Impairment and Alzheimer’s Disease
As I’ve written before (here, here, and other places), diagnosing Alzheimer’s disease gets complicated and causes significant confusion. I’m now stuck in the middle of that confusion. My primary neurologist diagnosed mild cognitive impairment (MCI) that would almost certainly progress to Alzheimer’s. But what does this “almost certainly” mean? When I pressed one of my research doctors, on the other hand, he assured me that I had Alzheimer’s.
How does a doctor make the diagnosis? A definitive diagnosis can only be made after autopsy of the brain. In clinical practice, however, the criteria for diagnosis of Alzheimer’s are impairment in memory and impairment in one of six other areas of cognition,#** but the impairment has to be severe enough to be dementia, which means they must interfere with normal activities of daily living. So since my symptoms don’t yet interfere with day-to-day life, my diagnosis is not Alzheimer’s but “only” MCI.
But this creates a problem. Alzheimer’s is a progressive disease that begins as long as thirty years before symptoms develop. Autopsies of people with either MCI or Alzheimer’s will show the same pathology. In fact, a person can be cognitively normal and still have the pathological changes found in Alzheimer’s. So the disease—whatever you call it—has symptoms along a wide continuum, and it doesn’t make sense to name it Alzheimer’s only when it reaches a certain severity. The medical community, of course, recognizes this problem and is moving toward a new definition based on a whole new set of criteria of specific physical changes in the brain that eventually develop into Alzheimer’s dementia. Those criteria will include even those who are years from any impairment. So people will be classified as “preclinical Alzheimer’s,” or “mild Alzheimer’s,” or “Alzheimer’s dementia.”
But that definition won’t be useful in practice until there are reliable tests, such as brain scans or spinal fluid analysis, that reliably detects and measures those physical changes in the brain. And, so far, the tests haven’t been proved to be reliable.
We’re still stuck with the problem that you don’t have Alzheimer’s until you have developed dementia, that is, until your symptoms interfere with your daily life.
Why should I care?
The statistics for how large a problem Alzheimer’s is count only those with dementia, which means that they grossly underestimate the numbers affected with the disease, unless the reader understands it all. There are probably twice as many people with some degree of cognitive impairment from Alzheimer’s than is usually reported. And that’s misleading.
The current definition also makes it difficult for those with early symptoms to know what’s going on. If somebody is told that he “only” has MCI, will he be falsely comforted? Do I, for instance, have Alzheimer’s or don’t I? Using the current criteria, I don’t. Using the more inclusive criteria, I probably do. What do I tell others? The subtitle of this blog is: “A Memoir from Inside Alzheimer's Disease.” Is that misleading? Or should I go through the whole spiel every time I give a talk or lead a discussion? And if I did, wouldn’t that confuse people even more?
Can MCI sometimes be a separate diagnosis? It’s unclear. Certainly the vast majority of time, MCI develops into Alzheimer’s or one of the other known dementias. But, for instance, the Mayo Clinic writes that “some people with mild cognitive impairment never get worse, and a few eventually get better.” But that doesn’t make sense unless MCI is a separate, non-progressive disease, and I can’t find scientist suggesting that.
As Alzheimer’s loses its stigma, more patients with MCI will present themselves to medical people, renewing interest in the questions around MCI. Let’s hope that that murkiness around mild cognitive impairment will clear up soon.
- aphasia (abnormal speech),
- executive function impairment (difficulty with planning, judgment, mental flexibility, abstraction, problem-solving, etc),
- agnosia (impaired recognition of people or objects), or
- apraxia (impaired performance of learned motor skills).
September 27, 2013
As part of a recent research study, I was tested for the Apolipoprotein E (ApoE) gene, which is linked to the development of Alzheimer’s. There are at least three different forms of ApoE, one that seems to protect somewhat against the development of Alzheimer’s, another that seems neutral, and another (the ε4 variant) that increases the chances of developing Alzheimer’s. I had one copy of ApoE-ε4, that is, I received one ApoE-ε4 gene from one parent and the other parent gave me one of the others. Having one copy of ApoE-ε4 about doubles the chances of developing the usual (old-age) Alzheimer’s; if both copies are present, your chances of developing Alzheimer’s are 10 to 30 times higher than a person with no copies.
Should you get genetic testing for Alzheimer’s? A factsheet from the Alzheimer’s Association (from which much of this post is taken) recommends against routine testing except for research purposes and for a particular, rare kind of Alzheimer’s.
More than one hundred different genes are suspected of making you more susceptible to Alzheimer’s, although only a few have been clearly linked. But genetics is only one cause of the disease. Even an identical twin (exactly the same genes) of a person with Alzheimer’s has only a 25% chance of getting the disease.
Of all the genes, the ApoE-ε4 is the most prominent, but having it does not mean you have or will develop the disease; it only means that your chances are higher than average. Even two copies ApoE-ε4 just increase your chances. Many who have the gene will never get Alzheimer’s; many who don’t have the gene will. Outside a research context, the presence or absence of the gene changes nothing; it’s medically useless.
There are three rare genes that are different. If you have one of those genes, you will definitely develop Alzheimer’s, and, since the genes are “autosomal dominant,” half your children will get the gene and thus the disease, too. The onset of this kind of Alzheimer’s can be very young, even in the late twenties or thirties. In these rare cases, however, the family will be well aware of its tragic history, and testing for the gene earlier in life can be very important in making life decisions, like whether or not to have children.
In the vast majority of cases, however, testing settles nothing. If you just want to know, go ahead and get tested, but be aware that the best you’ll get is a false sense of security or an unjustified sense of dread. If you do choose to be tested, you should have careful pre- and post-test counseling so that you don’t misinterpret the results.
A potential problem in knowing your genetic status is that the results may be used (legally or illegally) to discriminate in providing insurance (for, say, long-term care) or in hiring. People who choose to get tested, therefore, should find a way of doing so anonymously.
The cause of Alzheimer’s is at present unknown. There are a number of risk factors, the most important of which is age. The impact of other risk factors, including genetics, is relatively small in comparison. Except in those rare families with autosomal dominant disease, there is no test that will predict who will or will not develop Alzheimer’s.
September 30, 2013
Panties in the Refrigerator
I’m reading mostly novels these days. For most of my adult life, I’ve read serious non-fiction: politics, religion, economics, philosophy, and so on. I might have read two novels a year if someone pressed them on me. I still do read an occasional non-fiction, but I’m trying to spend most of my reading time with novels.
Part of it is that I have a little trouble staying with fairly abstract readings (as I mentioned in Abstractions a couple of weeks ago). Another part is that I just don’t find myself as interested in the intellectual world any more. (It doesn’t help, of course, that our national politics has become so dysfunctional, corporate power so overwhelming, media so subservient, the free market so dominating, and consumerism so unexamined … whoops, there I go again. Perhaps I’m not so disinterested.) Intellectual work is getting to be less and less a part of my self-identity. That phase of my life seems to be over: Been there, done that! I’m not even reading much about Alzheimer’s.
But perhaps the most important part is that I just want to read novels. They’re usually less abstract, of course. They tell stories of people who are different from me. They speak to my heart, not just my head. It’s part of the increasing emotional openness I’m experiencing. I greatly look forward to my reading time just before bed. Fortunately, I don’t have a set time to get up every day: A novel can keep me up hours past my bedtime.
I don’t ordinarily read children’s books. But seventeen-year-old Max Wallack sent me the little book he authored: Why Did Grandma Put Her Underwear in the Refrigerator? It was short, so I looked at it.
It’s a great book! Seven-year-old Julie is the narrator, but even older children who are faced with someone who has Alzheimer’s will find it helpful, I think. Grandma comes to live with Julie’s family. Not too long after, Julie notices that Grandma is starting to lose things. Julie’s worried she might be responsible for Grandma’s trouble; maybe Julie’s own messiness has caused the problem. Her mom explains simply that Grandma can’t remember because she has Alzheimer’s disease. After Julie finds Grandma’s panties in the refrigerator, she asks her mom about it. She’s afraid Alzheimer’s might be contagious. Her mom reassures her and describes very briefly the neuronal dysfunction in Alzheimer’s. The rest of the book follows the deepening and wonderful relationship between the Julie and her grandmother.
Although I’m much earlier in the disease than Grandma, the book reminds me of my relationship with my grandchildren. My daughter told them I was having trouble with my memory, which didn’t seem like a big deal to them. When I’d lose something or forget how to play a game, they’d sometimes ask me matter-of-factly: “Is that your memory problem?” I’d say, “Yes” and that was pretty much the end of the discussion.
We don’t need to protect our children from Grandma’s diagnosis. If you’re okay with it, they’ll be okay with it. And, at least for the younger children, Why Did Grandma Put Her Underwear in the Refrigerator? might be a good way to start the conversation.
Continue with October Posts
Blog Posts from August 2013
Thursday, August 1, 2013
My Disease Progression
I’ve noticed some symptoms getting worse; it’s not much worse but still I notice it.
Some symptoms don’t bother me much. Several days ago I was looking for two specific files in a list. I knew what was in each file, but I couldn’t remember or even guess the file names. All my file names have some relationship to the subject of the file, however, so that I knew that if I checked through the long list of files, I’d find it eventually. Since there were two different files I was looking for, I decided to look for both at the same time. But I couldn’t. I couldn’t keep in my mind the subject of both files while at the same time looking through a list in which I had to match a name to the subject. I had to keep three things in my mind and I could only manage two. I went through the list one at a time, however, and had no trouble.
Other symptoms are more unusual. I was wearing a very light nylon backpack as well as my usual belt pack when I came home from a long bike ride. I’d put my keys in my belt pack, but as I stood at the front door with my bike leaning awkwardly up against me, the keys weren’t where I’d put them. I searched through the four compartments of the beltpack repeatedly. Repeatedly. I kept searching—it may have been five full minutes—because they had to be there. Finally I remembered that I had the nylon backpack on, so I reached back, felt the keys in the backpack and started to take it off to retrieve them. The next thing I remember was that I was searching through my belt, unaware that I’d already found the keys in the backpack. Again, I perseverated with the beltpack for what felt like five minutes, then thought (as if it were a new thought) about the possibility that the keys were in the backpack and only then realized that the backpack was slung half-way off one shoulder with the keys in it. I’d completely forgotten what I was doing halfway through taking the backpack off.
And other symptoms are just strange. The other day I was in the kitchen and heard a symphony being played outside in the alley. Boom boxes travel frequently through the alley but I don’t remember any symphonies. And the music stayed in one place, seemingly outside our window. I looked out and couldn’t see anyone or any source of music. I asked Marja, “What’s that music?” “I don’t know,” she said, “I don’t recognize it.” “No, I’m asking where it comes from.”
She looked confused so I said, “What’s the source of the music; it seems like it’s coming from the alley.”
With some puzzlement, she said “It’s coming from the radio.” Of course, it was coming from the radio that has been in the same place for years, that is always tuned to classical music on public radio, and that I had had to lean over to see into the alley. But I’d not recognized it. Bizarre.
On the other hand, there are some things I haven’t lost. I’m noticing again that what I might call “wisdom” has not really declined, at least not that I can notice. I can still participate meaningfully on the church leadership team, provide mentoring to some other people in the church, offer opinions that friends seem to value. I just returned from giving a talk about Alzheimer's to a group of social workers, and I doubt that they would had noticed if they hadn’t known my diagnosis. I’m aware of intellectual, cognitive slipping but not loss of wisdom.
I’ve always wanted to be a “wise old man” and I was getting there. After my diagnosis, I grieved the potential loss. Now, it seems, I can keep the role, at least for a while longer.
It’s a fascinating process. Intellect gradually disappears but relationship can flower.
Sunday, August 4, 2013
What’s Going On?
Now I’m confused! In the past few months, I’ve been part of two separate research studies in which Positron Emission Tomography (PET) scans to look for amyloid plaques (one of the presumed causes of Alzheimer's) were normal, even though the two scans used different methods of measuring the amyloid.
I also had a PET-glucose scan which ought to document damaged areas in the brain where the cells are not fully functioning. That, too, was normal. In other words, I’ve had three different brain scans, none of which indicated that I had Alzheimer's. I’ve just reviewed the results with my doctor.
What is going on?
One possibility is that I needn’t take the results too seriously. Medical tests are never perfect, and these particular tests have only recently been used to diagnose Alzheimer's. We still don’t know enough about their accuracy to know anything with certainty. But three different tests, using different methods and looking for different mechanisms, are unlikely to be wrong simultaneously. My very rough statistical calculations is that, if I have Alzheimer's, the likelihood that at least one of scans would show something is in the neighborhood of 99.75%
A second possibility is that my symptoms are due to something else. Although Alzheimer's is by far the most usual cause of dementia, there are two other fairly common causes, temporal-frontal dementia (TFD), where the damaged cells are in a specific area of the brain, and Lewy Body dementia (LBD where a protein different from amyloid gums up brain functioning. But I would think that the PET-glucose scan should show problems in each of these diseases, too. Vascular dementia (a series of small strokes) is also fairly common, but the scans, including the CT and MRI, should have ruled that out. Further, according to the doctors, the specific combination of my symptoms doesn’t fit any of the three dementias. And—given the other examinations, blood tests, and CT scans that I’ve had—there are no other reasonable possibilities causing dementia.
My doctor said that he still believes I have Alzheimer's. But he’s certainly puzzled by the negative results. The other possibility, he said, was that I was so early in the disease that both scans were negative. If that’s the case, of course, it’s very good news. But it seems to me highly unlikely. I’ve had symptoms for perhaps five years and serious symptoms for three years. In addition, plaque deposition in Alzheimer's begins at least fifteen years before symptoms appear. Being too early in the disease doesn’t seem to me a reasonable explanation for all the normal tests.
Another (unspoken) possibility is that my symptoms are due to normal aging and that I’m among the “worried well,” a polite way of saying that my more severe symptoms are imaginary. I have a difficult time believing this (although, of course, no one who’s just imagining symptoms is going believe it). The neurologist hasn’t mentioned this possibility, but it has to be on his mind. If it’s all in my imagination, then I’m not sure I’m relieved. I’ve blanked out an entire day, lost my ability to do more complex calculations on a spreadsheet, gotten lost three times, have had to give up my usual writing and teaching, and had other major episodes.
As a part of the NIH study, I’ve been scheduled for a full (4 – 6 hour) neuropsychological exam at the end of the month. When I asked the doctor at NIH to give me the results of the scans before the neuropsych exam, he hesitated. Doctors don’t like to give patients partial results because people can worry or jump to weird conclusions. I reassured him that as a physician I understood the problem. So he gave me the results of the scans, and here I am worrying and jumping to weird conclusions.
I’ll wait for the results of the neuropsych tests.
The specifics of my situation feel unique, but many people with mild cognitive impairment (MCI) find themselves confused and anxious because of the uncertainty involved. I’ve written about some of the issues with MCI in early Alzheimer's before. As I read more deeply, however, it seems that medical thinking about MCI is changing. I’ve assumed that if a mild cognitive impairment is progressing, then it’s really just an early phase on its inevitable way to one of the dementias. And this is certainly true much of the time. But some doctors believe that MCI may be more complicated. In some cases, they believe, it may be a specific diagnosis with its own cause that may stay stable or even improve over time. But details are sketchy.
People now come to medical attention much earlier in the disease process. Unfortunately, the appropriate tests, diagnostic criteria and medical understanding have not kept up. When a person is diagnosed early in the disease, uncertainty is inevitable. This isn’t a question of ignorance or incompetence: It’s just the nature of the disease.
No wonder I’m confused.
Tuesday, August 6, 2013
A Change in Identity … Again
Wow! My anxiety has sky-rocketed! I realize that this blog is not about the neuroses of David Hilfiker, but surely there is something here that many with Alzheimer's experience. One of my readers recently emailed me. She’d been diagnosed with Alzheimer's in 2008. Recently, though, she was thoroughly retested and the results were completely normal! The previous diagnosis had been in error; her symptoms then had been significant but temporary, caused by something else. She didn’t have Alzheimer's. She wrote, “The news is wonderful for me and my family, but I feel as if I have lost my moorings again.”
After almost a year of believing that I have Alzheimer's and now finding myself with some normal test results, what if I’m not heading for dementia? Or, worse, what if my symptoms are imaginary, all in my head? Then I lose my sense of self. My identity created over many months, accepted by friends, readers, and myself, fades away. What if I’m not who I thought I was?
Since I found out about the test resuslts last week, I’ve been more anxious about not having Alzheimer's than having it, which doesn’t make any logical sense. A more appropriate reaction might be:
I don’t have Alzheimer's? How wonderful!! The sentence I’ve been living under has disappeared. Hallelujah!
But, no, I feel anxious. My situation is different from my reader’s in that there’s no evidence, yet, that my cognitive impairment has changed. Nevertheless, I also feel unmoored.
Just to be clear, I still believe that my cognitive impairment is real and progressive and either is, or will progress to, Alzheimer's. But the uncertainty itself has unmoored me.
I’m sure I’m not alone in my feelings. As I wrote in the previous post, anyone with Mild Cognitive Impairment experiences a similar disorientation, in large part because of the uncertainty about exactly what their diagnosis will mean for them. And all of us with progressive disease will experience continual changes in who we are.
The emotional/spiritual question that we face is: Can I retain equanimity in the face of such shifting in the sense of self. Can I recognize at a deeper level that my self is always changing and let go of my attachment to whatever the current sense of self is? I’ve written about this before (here and here), but this feels more wrenching. So, it’s an even greater opportunity for spiritual growth, for learning to let go.
Wednesday, August 21, 2013
On the Train Back from the BWCA
It's Not Denial
(For those of you interested in what I’ve been doing over the past two weeks, the Boundary Waters Canoe Area in northeastern Minnesota was its usual beautiful self. The weather was ideal. All of our children, grandchildren, and sons-in-law canoed and portaged together through unspoiled wilderness. [Even the signs marking the portages were taken down a number of years ago.] I’m grateful that each of us enjoys one another enough to have taken on the considerable logistical challenge to get us all together. We’d been planning such a trip for when the grandchildren were a little older, but we moved it up because of my diagnosis.)
Quite a few comments over the past several months have mentioned the difficulties for caregivers when the person with dementia “refuses” to recognize his impairment. Understandably, it can drive some caregivers absolutely crazy. The patient with considerable financial resources persists in disastrous judgments. The now-dangerous driver insists on driving. Important issues about the future can’t be addressed. Both caregiver and patient get frustrated and angry.
The term for this lack of insight is “anosognosia,” from the Greek words nosos, “disease” and gnosis, “knowledge” while the prefix a- changes it to a negative: “no knowledge of the disease.” It’s a condition in which a person suffering from neurological disability seems unaware of it. From my medical training, I’m familiar with this condition when caused by a stroke: victims remain unaware of their affected side and will deny that they’re hemiplegic. But it’s also common in Alzheimer’s.
Most caregivers understandably interpret this condition as psychological denial, but it’s not. A blogger on the Alzheimer’s Disease International website writes,
Denial is a strategy used to reject something that a person wants to ignore or avoid because it is too difficult to face. Anosognosia, on the other hand, is being unaware of a decline in cognitive skills.
Research has shown that this condition is due to physical damage to specific areas of the brain. The patient has no more ability to recognize her symptoms than she does to lift her arm.
When Alzheimer’s damages these areas of the brain, the patient simply cannot recognize her impairment. The importance to the caregiver of understanding the cause of this lack of awareness is obvious. Trying to cajole or therapize or intimidate a person into recognizing her disability will fail and will lead only to frustration and anger in both caregiver and patient.
Recognizing that the patient has no control over his denial, of course, won’t change the practical problems, but it might help prevent the blaming and mistrust that so often results. Realizing that your loved one can’t see that his mind is failing and that no amount of reasoning or nagging is going to make any difference might increase compassion and decrease frustration.
Although the problem may decrease as the Alzheimer's worsens, there is no known treatment. But, as the author of Contented Dementia suggests in the context of other problems, trying to see the world from the perspective of the person with Alzheimer’s will help. How might it feel to have others harping on your incompetence when you know yourself to be unimpaired? What’s it like to be unable to accomplish something important when you see no good reason why?
Is it possible for you, the caregiver, to create an alliance with the patient to reduce his frustration? Can you find a way to “agree to disagree”? Can you feel less of a sense that you’re betraying the person with Alzheimer's when you arrange for authorities to take his driver’s license away (ideally without letting the patient know that you were responsible).
No amount of understanding, of course, is going to make it easy for you to respond to this condition, but it may make it possible to stay in a better relationship with the person you love.
Saturday, August 24, 2013
In response to my last post on people unable to recognize their cognitive impairment (anosognosia), one reader described the dilemma of wanting “to include in social settings a loved one who demonstrates anosognosia about [his] cognitive impairment.” I have gone ahead, she says, and “confidentially shared with a few folks in my Christian community, yet am uncomfortable with others knowing something my loved one doesn't about himself. Yet if I don't share, then I am worried others won't know how to lovingly respond to him.”
It is, I suspect, a common dilemma. The problem arises most seriously in the issue of driving. (I’ve explored the issue in other posts, but anosognosia significantly complicates the problem.) There are at least two sets of issues: first, the practical ones that will arise if he finds out that you have spread what he considers a lie about him and, second (and much more difficult) the feelings you may have of having “betrayed” him. I have a couple of thoughts, but I would certainly welcome comments from those who have faced the problem.
First, would arranging to have his license taken away or even letting other people know about his diagnosis be a “betrayal” of the person you love? I don’t think so. The person you love is now different in an important way from the person he has been: He can no longer recognize reality and act appropriately. Remember, anosognosia is an injury to the brain that makes him incapable of recognizing his impairment. He doesn’t have the capacity to make a good judgment about himself. You must do it because he can’t. The only real question is whether in any particular instance the choice is actually a loving response, done in the best interests of everyone. Fulfilling your responsibility in a loving manner cannot be betrayal … regardless of what the patient feels and believes, regardless even of what you feel.
Second, a dangerous driver must not be allowed to continue driving. Period. That outweighs any other consideration, including any of his feelings that you have betrayed him and any of yours. If the patient will not stop on his own, someone has to interfere and make it happen, even if it requires informing the authorities. This doesn’t have to be the caregiver directly, but if no one else does it, the caregiver must at least arrange for it to happen, perhaps by asking someone else to make the call.
The issue of whether to inform friends is obviously much more ambiguous because no one is directly in danger of injury. As any regular reader of this blog will know, I believe strongly in telling other people about one’s own diagnosis (see here and here). I assume that friends who are at all close will have already noticed the symptoms or will soon. Discussing the disease frankly will probably decrease embarrassment and isolation. But the choice to let other people know might appropriately be outweighed by the likely consequences (if he finds out) or even by one’s feelings of betrayal.
Another possibility, however, would be to determine whether the friends already know something is going on. If they do, you might tell them about the physical nature of anosognosia over which no one has any control. This doesn’t give them any new information about your loved one (the friend already knows) but it does add objective information that may help in any given situation.
If I were a caregiver, I think I would probably tell a trusted small circle of friends, not so much to help them but to help me in dealing with a difficult situation. My loved one might reasonably expect me to keep confidential his problem but not to keep me from getting the help I need.
Don’t forget that the nature of progressive dementia is that the caregiver has gradually to take over more and more of the decision making (and lots else) that the patient has always done. You might as well get used to it early.
These are only my thoughts, however. Some of you readers will have certainly faced these questions. What do you think?
Wednesday, August 28, 2013
Who Will Care for Us?
I mentioned in a previous post an incident in which Marja uncharacteristically didn’t get home until after midnight and I didn’t know where she was. Terror moved into a place just under the surface of my emotions. I realized then that a crucial reason I’ve been able to live without much fear of the future is my assumption that Marja will be there to accompany me through this illness.
What if Marja isn’t here? I have an extraordinarily supportive faith community. We frequently devalue the importance of close community. I hope I’m not being a Pollyanna here, but I have some confidence that if Marja is not here to care for me, then my community will surround me.
My children would certainly be available and would do their best, but I obviously don’t have the same relationship with them as with Marja. I’m sure I could live with them for quite a while, but I could not (and would not) expect them to keep me as far into my illness as Marja. And since my children live far away, I’d have to leave the community here.
There’s no particular reason to expect Marja to be unavailable, and I really don’t think about it much, but sometimes the possibility scares me.
I read an article in the WashingtonPost on Monday about an AARP report predicting a severe shortage in the number people unable or unwilling to provide unpaid care. The number of potential caregivers (defined by AARP as those aged 45-64, ie our children) available in the next few decades for the elderly, demented, and otherwise fragile people of the baby-boomer generation will be falling. The shortage will be due to:
- the increasing numbers of baby boomers,
- the increasing longevity of Americans, and
- the decreasing number of those younger caregivers available because baby boomers have had fewer children than their parents.
What was astonishing to me was the estimated cost of the unpaid care currently provided by caregivers. In 2009, it was the equivalent of $450 billion, more than the cost of Medicaid and approaching the total cost of Medicare! The national political terror of budget deficits and increasing taxes (a different topic about which I have strong feelings but won’t get into here) makes it unlikely that the huge government financing necessary to fund the increase in paid caregiving will make it through the political process.
Perhaps the greatest fear of Alzheimer's is abandonment. I have my children, so I’ll be okay through most of the journey. But what about those who don’t have unpaid care available? Where will the money come from to care for them either at home or in an institution? We will have more reason to fear.
Thursday, August 29, 2013
Tips for Communicating
A number of caregivers who have left comments or emailed me have asked for my advice on dealing with their loved ones’ dementia. Since I have absolutely no personal experience in that area, I can only offer second-hand advice that I can’t personally vouch for. In two previous posts (here and here), however, I did review the book Contented Dementia, which offers a good general framework for thinking about the issue. I’ve also recently come across a set of “Tips for the Caregiver” from the Bureau of Geriatric Psychiatry in Tuscaloosa, AL. The tips are taken from a larger “Caregiver Packet”* which is also well worth reading.
Here’s a bit of a summary (in no particular order): I’ve used the masculine pronoun throughout to keep clarity.
- Non-verbal cues may be as important as what you say, so try to be calm and reassuring, speak slowly and distinctly, and use simple words. Use gestures when appropriate. Point to objects or demonstrate an action, such as brushing your teeth.
- Remember that the patient is dealing with confusion, anxiety, loss of self-esteem, irritability and feeling of depression.
- Before asking the patient to do something, address him by name to get his attention and maintain eye contact. Ask only one question at a time and give him time to respond. He is having to think a lot harder than you would to answer the same question. Allow him adequate time to respond in conversation or perform an activity. Rushing him will only increase his confusion.
- An Alzheimer patient has difficulty coping with change. Try to maintain a regular daily routine; it will help the patient maintain his abilities and may also save you time and energy.
- Performing his own daily tasks (eg dressing) helps to maintain his self-esteem. If you help him before he really needs it, he may forget how to do it for himself.
- Break down all tasks into simple steps. Tell the patient slowly, one step at a time, what to do. Giving too many directions at one time, or giving them too quickly, will increase the patient's confusion. If the patient gets upset and becomes uncooperative, stop and try again later.
- Keep your expectations of what the patient can do realistic given his degree of impairment.
- Use humor whenever possible, though not at the patient's expense.
- Do not disagree with made-up stories or mistaken impressions. Do your best to understand his reality and respond to it. Do not contradict him. (See my posts on Contented Dementia (here and here).
- Be consistent. If you say that you are going to do something, follow through with it.
- If the patient repeatedly asks a question, remember that he cannot remember the answer you have just given him. Reassure the patient that everything is fine and that you will be with him and will help him.
- Repeating the same act may be meaningful for the patient and provide relief of tension; if he spends 20 minutes contentedly wiping the kitchen counter, let him continue.
- If you do get angry, use "I" statements as opposed to "you" statements. Example: "I'm feeling angry, I need to rest now," instead of "You make me so angry, I can't stand to be here.” Remember, he can't change his behavior for you. Also, he is frightened to see you angry at him when he feels so helpless. Talk to a friend when you need to blow off steam. Support groups are a great place for this.
- Always remember the importance of love and affection. Sometimes holding hands, touching, hugging and praise will get the patient to respond when all else failed.
- When he can no longer communicate verbally, keep talking to him about those things that were important to him, such as yourself, family member, etc. Speak clearly, say names of people he loved, touch him, massage his arms, feet, head and back. Touching is the greatest communicator of love.
Modified from Caregiver Packet AlzBrain.org *
Again, I have no personal experience, but these suggestions make a great deal of sense to me and may help some of you caregivers.
* Clicking on this link will produce a pop-up asking whether you trust the link. I believe it trustworthy and you can proceed.
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