Keywords

 

Authors

  1. Truscott, Marilyn

Abstract

Daily living presents constantly changing challenges and a slower pace of life for people with early stage Alzheimer's disease. With medication, the confusion, mental exhaustion, and diminished speech skills of the author improved to a level where the ability to enjoy life could be regained. Many problems still have to be faced daily: mental fatigue and inertia; difficulties with speech and complex activities such as cooking; fear and sadness about the diagnosis and the uncertain future; boredom and isolation; more limited social and cultural life; and the stigma of the label of dementia. Coping strategies are helpful, and work best with the improved mental focus provided by medication. With the assistance of medication, a well-educated and supportive family, and support services through the Alzheimer Society, particularly the benefit of early stage peer support groups, the author has been able to live a full and rich life, persue simple rewarding hobbies, and volunteer work on behalf of persons with dementia.

 

Daily living for someone in the early stages of dementia can vary from near-normal to near-disastrous. But it's always a change from the previous way of life. My own life has been altered drastically with the advent of Alzheimer's disease, and I now describe my new daily routine as "Life in the Slow Lane." I used to be a race horse and master juggler, rushing from one activity to the next, and keeping many balls in the air at the same time. I had a busy life, working, commuting, and doing all the regular daily chores of the house in between my heavy but rewarding work schedule. I traveled extensively and adventurously, had many hobbies, read thick books with long words. And I could handle a hectic pace, seeming to fit it all together effortlessly, scheduling and rescheduling as I went along. I drove with the fast lanes of traffic, always in a rush to fit as much into the day as possible. Now, I travel in the Slow Lane!

 

I started to notice a decline in my memory and intellectual functioning from about 1994, and by 1997 I had to stop working in my occupation as a scientist because of cognitive impairment. After a stressful year of diagnostic testing, I was given the diagnosis of Alzheimer's disease in October 1998 at the age of 54. My life had changed quickly.

 

Before I was given Alzheimer medication, my problems had been typical of many people in the early stages of Alzheimer's disease. I was very forgetful, misplaced things constantly, didn't recognize faces or names. I had trouble reading simple English, and I couldn't follow written instructions, and of course couldn't remember spoken instructions or directions. Consequently, I had trouble doing simple arithmetic, using bank machines, even can openers, and following a recipe was nearly impossible. There were serious kitchen safety issues, as I would turn burners on and leave the house, and would pick up hot pans with my bare hands. I seemed to be severely inattentive. I would read and reread the labels on everything, since there was such a long lag between reading and comprehension, and I was afraid of using the wrong products for things. I even had trouble operating the bathtub faucets.

 

It was difficult and tiresome to follow speech. Going to concerts or museums, a great pleasure of mine, had become confusing and tiring, and I would have to leave after only a short stay. I was constantly confused, and the confusion was terrible and terrifying. Of course I had long since been unable to maintain a job; then it became difficult to maintain even a simple social life. Travel was difficult and confusing. My hobbies, sewing, piano playing, reading, which were moderately complex activities, were now beyond me. I would pick up familiar pieces of equipment, for example a hair dryer, if I could identify them and find them, and then not remember which hand to use, how to hold them, or how to use them. My world had narrowed down to a small fraction of the richness it used to have. I had become very dependent on my husband and family. I was tired frequently, because mental activities would tire out my brain so quickly. My speech was severely affected. I had serious word-finding problems and often a very staccato speech using "that thing" in place of the many words I couldn't find; I was living in a permanent game of "charades." I lost track of my ideas in the middle of speech; no wonder I had withdrawn from a lot of social life! The terrible changes I was experiencing made me frightened and sad. As I was losing my old identity I struggled with being depressed about it. This was indeed the "Twilight Zone"!

 

Then I was put on an Alzheimer drug. The changes in me were truly magical! Thank heaven for the new Alzheimer medications now available! I could hold on to thoughts and words better when I read them or heard them spoken. I could understand information and instructions better. I had vastly more mental stamina to carry out activities and social conversations. My brain wouldn't tire out so quickly.

 

My word-finding improved markedly and so my speech became more fluent and normal. It is as if there had been huge gaps and delays in connections between parts of my brain before, and between individual neurons; but with medication the connections were being made more efficiently. Now, when I get mentally tired my speech will still become slower and more difficult, but it takes much longer for me to get to that point. I had no idea how precious the gift of oral communication was until I had so much difficulty with my speech. I am grateful for every day that I can use my voice to clearly communicate with others. Because my confusion is largely under control now, I do not feel so agitated being out in noise and bustle, and everything is a little easier. Because of this, we could find coping strategies to aid me at home, and I have a long list of coping methods I used to help me perform better. But to use coping strategies, it is necessary to have an ability to focus and be mentally alert. It's as if I'm better able to pay attention to what I'm doing now, and so I'm more successful at storing some information in short-term memory. I could resume some of my easier hobbies. If you have never lost your ability to be creative, you may not understand just how important it is to our spirits and quality of life to maintain these activities.

 

I could give public speeches, because I now had the mental stamina and focus to organize my thoughts, write my talks and present them, and of course, to speak fluently. I have to do the writing very slowly, in brief spurts of activity-of perhaps an hour each day-with laborious reviewing, editing, and re-editing, but I can do this at present. And I must acknowledge that I take the help of people around me to listen to me and review my ideas. These people are enabling me to do these activities by supporting my efforts in critical ways.

 

What a rich and full life I have since those confused and anxious days when I was first diagnosed, thanks to our modern Alzheimer medications and valuable supports! No, it is not like my previous life, when I worked and traveled independently at a frenetic pace. But it is a very good life nonetheless. Today my pace is slow and measured. I move with the snails. I rest as much now as I used to race before. What a change! And it has required a huge adjustment of my own expectations of myself and my expectations of life. I am daily in a state of adjustment, trying to reconcile the old me with the new me, and accept that being slow, doing less, experiencing less, achieving less, is all right. So, what is it like to live in the Slow Lane?

 

The mental adjustment or reconciliation is very hard at times, as I sometimes ache to have things the way they were before, and since that cannot be, I simply have to try to accept the changes in my life. I think those of us in the early stages of dementia undergo a constant adjustment and readjustment, a tug back and forth as we do this reconciliation, as we grieve our losses and try to accept the present reality. We may succeed at this one day, but the next day for some unknown reason, perhaps an event or a particularly glaring error that points out our underlying problem, we're thrown back to fighting the acceptance. And we may become sad or agitated or angry or just plain tired. We need help through this, and individual counseling and peer support groups can be enormously beneficial.

 

I try hard to accept my present state with "good grace," and to live as well as possible each day. I try not to think or worry about what the future may hold for me. I try to focus on the many advances that are being made in understanding the disease process in Alzheimer's disease and the drugs that are in development. I focus my positive energies into believing that a treatment or cure will come in time for me, that I will benefit before losing too much intellectual functioning. But, at times, this carefully constructed viewpoint gets breached by doubts and fears, and I am swept into fears and sadness. That is my ongoing struggle with the emotional aspect of the diagnosis of dementia. You see, I am at this point generally very much aware of my difficulties and my future prospects. I have, like many people in the early stages of Alzheimer's disease, strong insight into my situation. I can judge that I have deficiencies and problems. I am therefore also aware of my deterioration, the increases in problems. And I am also therefore fearful when I detect or am made aware of errors I make. But I still treasure this insight; even though it gives me the capacity for pain and fear, it also connects me with the true world.

 

I believe my experiences are shared by many people in the early stages of Alzheimer's disease. When we talk together, we speak about our fears of getting worse, of our anxiety when we have a bad day or two with more problems than the usual, and sometimes we talk about our tenuous hold on that positive attitude. I wonder if some of the depression and emotional fragility that we experience is due to the fight to reconcile the old and new self, when the fears and grief briefly overwhelm the inner positive spirit. And "mental attitude" is critical in withstanding illnesses. I realized early on that the best way to deal with my own cognitive deterioration was going to be with a positive mental attitude. We all know, and scientific studies bear this out all the time, that people who have a spiritual faith and a positive attitude do better with their illnesses than people who are negative. Also, those of us with early stage dementia may recognize that our ability to interact and communicate with the outside world-and even the time till when we may be able to do this-may be limited, and we should make the best use, and have the most joyful time and the fullest experience, of these days. We don't know the time limit on this. Perhaps with the new Alzheimer medications, for some of us that period with relatively good clarity can be stretched out to many years, even a decade or more. We do not want to waste our precious days in negativity, tears, and nonaction. We should put them to good use having fun, treasuring our family and friends, building up a memory box full of good experiences and laughter and joy. And leaving a happy legacy for our families. And so I try to have a positive attitude every day that I can, and to push away the doubts, fears, and tears. But, at times, negative emotions do have a way of creeping in, especially in the early morning hours when I am awakening, or in the evening when I feel exhausted and vulnerable.

 

Let me tell you about the exhaustion. Many of us in early stage dementia talk about how tiring it can be to do simple things, after expending a small bit of mental effort, even to have social conversations. Trying to focus the mind and memory takes so much energy. I am taking Aricept now, and many of my friends take Aricept or Exelon, or Reminyl, the other two medications for Alzheimer's disease. After I started on medication, my mental focus and concentration improved and it now takes longer for me to reach the mental fatigue point. I think of my brain as being battery-operated. When the battery runs down I have to rest (nap, sleep, or reduce mental activity) to recharge. With medication, the battery's power supply is extended somewhat, but it will still run down.

 

And what does the fatigue feel like? My brain cannot think, speech is difficult, searching for words in my memory banks is slow and faulty. Rest, rest, rest and then I can start again. I believe it is incredibly important for a person with early stage dementia to find a way to pace his or her efforts; to recognize in advance the signals when to stop activity, when to rest. I think we need everything going for us to function well, and we have to watch the signs that show we are heading for overuse of our mental batteries.

 

Perhaps we should go back to the simple plan we used for our young children: a rest and a snack. We need to have something nutritious that slowly and surely delivers glucose for the brain at regular intervals. We need to have all our metabolic systems working efficiently in order to support the complex and high-calorie effort of "brain work." This means that we must have top-level nutritional support at all times, to give us all the body's requirements of vitamins, minerals, trace elements, amino acids, antioxidants, and so forth to keep our bodies and brains functioning like well-oiled machines. We have to ensure that our hormone systems and glands (eg, thyroid) are working properly. If any part of the body isn't working at top level, it may affect the brainpower, and so our overall health should be carefully monitored. Exercise is important too, for our well-being physically and mentally, and to provide maximum oxygen to the brain. We also need enjoyable mental stimulation. Boredom kills initiative and positive mental attitude-we need to find creative things to do, at whatever level we're capable of doing them.

 

The biggest problem I face in the day is simple: how to become motivated to do what I need to do. Inertia was never a problem for me before. But now, because of the extra effort required to do most tasks, I have more inertia. How can I get started to do activities, to get organized?

 

Another major problem is a subtle boredom that comes with having too little stimulation and too little social interaction. I think that much of the depression in people with early stage dementia is a result of this boredom. We cannot do the activities or have the social life we had before; we become more isolated. If we were in the workforce and had to leave because of dementia, we likely miss very deeply the daily routine and the social interactions. Unlike people without dementia, we cannot easily go outside and replace that past life with a new, similar one; we cannot take on volunteer activities without support and an appropriate organization in place to help us; many people can no longer drive and so haven't got the freedom of movement to find new places to substitute the old. We are truly being trapped inside our bodies, and inside our homes, to some degree. We may need a lot of support to get outside of this subtle prison and make full and creative use of our days. Social stimulation is critical. How can this be aided? Ideally through programs for recreation and creative activities geared to our levels.

 

My dear friend Norma, a very active person with early stage Alzheimer's disease, says that when people are out of her sight, they're out of her mind. She tells me, "Don't think if I don't write for a while that I don't love you any less; I've just forgotten about you for the moment because you're not in my line of sight." She is describing a common difficulty, and a cause of our isolation. I really wish that our old friends would take the initiative for keeping up social friendships more than they used to. With the forgetfulness of people not in the sight-line, that accompanies early stage dementia, the relationship with friends and family becomes a little lopsided: we need these people to take more of the chore of keeping up the social life and setting and organizing meeting opportunities. Yes, "out of sight" may be "out of mind," but we can still feel lonely and isolated, and really benefit by having company of loved ones. And because of the problem of lack of motivation and social withdrawal, we may be inclined, if we do think of someone we should or could, to put it off until.[horizontal ellipsis]later, whenever, never.[horizontal ellipsis]

 

My own social life has become more limited-meals out under circumstances that we can carefully control, short times, quiet places, minimal confusion. No longer the bright lights and noisy and exciting restaurants. We do have some social meals at our house occasionally, but just family and perhaps their friends, and sometimes close relatives might spend a few days. It is still hard for me to let outsiders understand that I need help, that I get mentally exhausted, and that I often simply need space away from people, without worrying that I may be insulting them or making them feel slighted. Unless people are really close to me (insiders such as my children, or family members who are so long-term familiar and loved that I don't worry about our relationship), I can feel quite trapped and agitated to have others, outsiders, around for very long. Although it would be best simply to tell people directly what I need and what I can and can't do, and that it is no reflection on my feelings or regard for them, pride is hard to overrule. As is my fear of their rejection. I have heard all too many stories from friends with early stage dementia about coping with rejection and embarrassing slights due to the stigma that many people in our society put on people with dementias.

 

I used to love attending plays, operas, concerts, museums, and art galleries. I deeply regret that I cannot enjoy these activities in the same way any more. I try, but the noise, confusion, and overstimulation of complex music and crowds now burns out my brain battery so fast that I usually have to leave before or during the first intermission. I do very short stints in museums and galleries, briefly skimming the surface of the displays and paintings, not stopping to expend my precious brainpower on reading captions. I seem to have the attention span of a 3-year old, whereas the old me used to love to savour slowly every display and picture, and learn and compare with previous sights. I skim through now, and I retain little information. But what I do retain is the feeling of pleasure or excitement I had, the emotional response to the activity of the moment. And that is still precious. I think it is important to continue to do these activities, and to enjoy the brief activity in the moment, to enjoy the pleasant feelings.

 

I have started to communicate with the outside world by e-mail. What a wonderful innovation it has been for those of us who can still type! Like many other people with early stage dementia, I have a network of friends in that worldwide community, and I keep in touch with a regular exchange of chatter, humor, coping hints, and encouragement. I used to type and compose quite fluently. Now, my typing and spelling have become atrocious, and so I like to type my text into Word whenever possible, so as to use the spelling and grammar checking. The advantage of using text, rather than the spoken word, as many of us agree, is that we can write as ideas come and keep coming back to re-edit until we are satisfied about the context and content of our messages. To write a speech or an article such as this, I have to go through numerous short spurts of writings and re-edit many times, and then ask for outside opinions on the text to complete final edits. Writing is laborious and time-consuming!

 

Some people with early stage dementia are no longer able to write, type, or even read well. I have suggested to many people that they try a handheld recording device, speak into it whenever ideas or messages strike them, and then have someone else type it out for them. I have found that to be a good way to speak out a new speech in rough, so as to catch the emotional level I want. At my home we are currently experimenting with Dragon Naturally Speaking, so that I will be able to speak to my computer and it will automatically type things out for me. Because my speech is often staccato, with word-finding difficulties and slowness, the program is not easily recognizing my speech. We need to find ways to have the Dragon program accommodate my problems. I will need some expert help with this, and this is on the long list of our to-do projects at home. I think speech recognition by computers, and consequent translation into text will be a wonderful communications aid for us. But there are some problems to solve first, such as fail-proof speech recognition, and simplification of the programs, which are currently extremely difficult to use for a person with diminishing skills.

 

I am a scientist by training, and used to love to read science articles and thick literature novels and non-fiction. I find reading difficult now, but I think it is important to keep these skills up. And so I try to read simple stories with clear descriptions that produce strong pictures in my mind, or writing that is very beautiful or humorous. I may need to read a sentence or a phrase over a number of times in order to understand what the combination of words together means. If the story is complex, I will make out a list of people in the story and their roles, to minimize flipping back and forth through the pages to remember what's happening. Newspaper articles are easier-short and simple, and much of the information is not important to recall. I check the headlines, picking out items that will interest me. I have to be careful not to overuse the "brain battery," and so I have to choose the expenditure of brainpower, and try to pick activities of high interest and high value to me.

 

My cooking is one of the skills that has seriously declined. Before the Alzheimer medication improved my focusing, I simply could not follow a simple recipe. Now, if the recipe is very short, very simplified, broken down into simple easy segments, I might be able to get to the end of it successfully, if I am able to concentrate only on the cooking. If I am interrupted by a phone-call, or another thought that takes me elsewhere, then I have a problem! When I am at the stove, I try to remember to pull down a large pink card that is magnetically held to the range hood, to warn me that I am cooking. I can see this note from anywhere in the kitchen and the nearby outdoor exit. I try to remember to scan the kitchen and look over at the range hood and stove before leaving the area or the house. Another sign there warns me that I am doing laundry. This method is not fail-proof, but it has reduced significantly the number of times I leave the burner on or the dryer running.

 

Another problem with cooking is all the preliminary work before getting started in the first place. Do you realize how difficult cooking is? I think cooking must be one of the most difficult tasks in the day! First you have to decide what you want to make, and then get the ingredients together. This means preplanning, organization, and a trip to the store. Then, trying to do the cooking, following a recipe, and doing it right. Often, it is simply too hard to get that all together in my mind, and at some point during this sequence, I just decide that I can't do it right now. Wouldn't it be wonderful to have a cook-helper come in to my kitchen and say, "This is what we're going to make; I'm going to help you get all the right things together; now I want you to make the salad, and let's do it together." Give me directions, give me help, support my brain. My husband helps me as much as possible, but now we eat very simply at home, and we visit the local restaurants far too often.

 

My ability to think has slowed down markedly. My brain seems to hang up on words, and my understanding often lags behind a normal speed of speech. When I was at my most confused before starting medication, I found that every piece of information, every phrase, had to be absorbed and understood slowly and individually. The best way for me to follow directions, whether it was on a bank machine, the recipe at the back of a rice box, or spoken conversation, was to focus on each line of information, going over it more than once, until I had the idea. Then I could perhaps proceed to the second line, and so forth. But I would often have to go back to the first line again. Doing anything at all involved an iterative process, whereby I tried to gain a little more information and understanding with each run through. This was so laborious, and frustrating. No wonder, people with cognitive decline and confusion become so easily and so thoroughly exhausted! Thanks to my Alzheimer medication, this process, has been sped up and generally I am able to do these same tasks much more efficiently. But if I become tired, my brain function slows down, and I have to use that slow, iterative system. And I must not allow myself to become distracted. Music, people speaking, other noise can throw off my focus and make it hard to do the task at hand. That is probably why I find it so hard to be in the middle of a crowd. Multiple simultaneous conversations make it incredibly confusing for me to try to focus on my own little conversation or activity now.

 

And so, travel is more difficult these days. I used to love to drive, often by myself, on long trips through the United States and Canada, and many other countries. I cannot do this any more, and it has cut out an enormous part of my travel dreams. My travel now depends on other people and their schedules and plans. I am no longer independent. Still, I want to travel all I can while I am well, and I take every opportunity for short and long trips. Plane trips are particularly hard to do now. I find that after a flight of a few hours, I might be rather disoriented and tearful. I often have to find a secluded place in an airport (such as the airport medical clinic) to have a quiet time and even a short cry. I think slight changes in air pressure and oxygen content may have a negative effect on the most vulnerable brains. Of course, the effort of traveling, scheduling, unexpected problems, handling luggage, and time zone changes are very stressful for anyone, but they are now much harder for me to handle. This doesn't mean that people with dementia shouldn't travel; but awareness of these difficulties and ways to deal with them can help to make the trips easier to manage. I like to have a flexible schedule to allow for rests when I need them and longer sleeping hours when I need it, as well as short and leisurely tours. I think it is important to include little rests and snacks as an integral part of the travel schedule, and to minimize confusion and noise.

 

I, like others with dementia, am struggling with the stigma of the diagnosis. Our society is still not as a whole accepting of people with dementia, and there are many people who are fearful of it. Education is the key to changing this, but it is happening very slowly. Even among otherwise very well-educated people there is a surprising level of ignorance about dementia. My friends with dementia tell many discouraging and emotional stories about the reaction and rejection they have faced from people they have told about their illness. I am thrilled when prominent people such as Ronald Reagan and Charleton Heston come forward with their diagnoses of Alzheimer's disease, because they can do so much to bring awareness to a very large audience. Many of us with early stage dementia involve ourselves with public awareness talks and media presentations, and we know that this is helping to break down barriers. Famous people can do this very quickly, to a broader audience. This is badly needed. Meanwhile, people with early stage dementia may have to carefully pick and choose whom they trust and need to tell about their illness, in order to protect themselves and preserve their social life. We are more vulnerable to being taken advantage of by dishonest people, and I think it is wise to safeguard our privacy.

 

I may live in the slow lane, but I have a very full life, despite my illness. I keep active as a volunteer with the Alzheimer Society, giving awareness talks and conducting workshops across the country and internationally, participating in focus groups to develop information material and decide on policy, and serving on committees and boards as a representative with the illness. I review articles and help on a newsletter to give input from the patients' perspective. I am able to do this work through the kind and generous support from Alzheimer professionals and my family members, who review my written materials for content and errors, allow me ample time to complete commitments, and make complete arrangements to enable me to give speeches in a restful and stress-free environment. I believe that many other people with early stage dementia can participate in volunteer programs if they are given this kind of support.

 

I also continue to indulge in my favorite hobbies, although not at the skill level and quality of the past, and I struggle with inertia; however, I am still producing needlework and sewing that my family members assure me they treasure. I would like to have someone help me to organize myself and begin and complete projects; this would help me to overcome my often overwhelming inertia and make best use of my time.

 

What are the coping strategies I use? To aid my memory, I use a notepad and jot down everything I need, from what I'm going to another room to look for, where to meet my husband in the mall, to bits of the current conversation I'm involved so that I won't forget the topic or forget the important points I want to make. I hang large pink signs on the range hood to remind me if I'm using the stove or doing laundry. At my worst, I had a big sign at the main entrance door with a checklist to remind me to turn off lights and appliances, and even to lock the door. I put packages and my purse in front of the exit door as I think of them, so that I won't forget to take them when leaving the house. I always try to follow the policy to "keep it simple": do one thing at a time, one step at a time, one line or phrase of instructions at a time. I try to focus on the task at hand and not let myself get distracted by other things. For example, the phone ringing is a great interference when you're trying to complete a task and not get distracted and walk away from it. I try to keep my papers and other things organized and in logical places, using the same place or box all the time. Usually this works, but somehow I still find myself constantly searching for something! I try consciously to keep my stress levels down, by not overloading my schedule, not trying to fit too much into the day. I try to take a break or a nap when my mind and body tell me to stop and rest. I try to minimize the noise and confusion around me, choosing the least noisy restaurants and social activities. And I look for reasons to laugh and be joyful, preferring to focus my television time on comedy rather than on tragedy. I think of the list of mottos I'm compiling, as I ask friends with early stage dementia what motto they use to help them cope, and they are gems for all of us. Norma says, "I only do it if it sounds like fun." John says, "I wake up in the morning, look in the mirror, and tell myself this is going to be a wonderful day." Cynthia says, "God is my strength." I say, "Always look for the silver lining."

 

I have many invaluable supports, which make it possible for me to be the best I can be. I have the most wonderful family, and my children and my husband have always encouraged me to do and try things, not worry about failure or mistakes, but to continue to live fully despite my illness. They pick up my spirits and help me stay positive, and maintain a happy environment for me. When my daughters come home, they take over the management of the kitchen, and we eat very well indeed. They watch me for signs of tiredness and stress and send me away to rest. Our big family holiday gatherings with turkey and trimmings continue as before, because my family is sharing the load, allowing me to do just what I want and need to do, but supporting me in subtle ways to ensure everything goes smoothly. My husband is a constant source of encouragement and support, and he strives to learn as much as he can about my illness. He takes my occasional sadness and emotional volatility in stride, and is extremely patient with my problems, cheerfully directing or taking over operations in the kitchen as needed. We are both looking for ways to make our relationship and communication as strong as possible now, while I am able to participate in this.

 

A critical support for me, to keep my spirits high and feel part of a community, is my participation in early stage peer support groups through the Alzheimer Society. We get together regularly to talk about our problems and our joys, and to share and gain information about our illness and about coping strategies. We also participate in a variety of research and educational projects with students and professionals in gerontology and occupational therapy. At times we have special group meetings and social activities with our care-partners. We also participate in focus group discussions for the Alzheimer Society of Canada to help them develop educational literature, programs, and policies. This partnership with the Alzheimer Society makes us believe that our contributions to society are still valued, and that we have much to offer and much influence to exert to improve care and opportunities for patients now and in the future.

 

I attended the funeral of a friend recently. He led a very full and joyful life in his short 41 years and he left behind a large group of friends and family who loved him dearly. As I sat with a group of friends after the funeral I talked to them about how important it is for all of us to assess what is important to us, what our goals are for our lives, and to do them now; to express to our loved ones how we feel, not to waste time being consumed with disappointments and anger, but to live creatively and joyfully, to try to reach out to others positively, and to leave the earth a better place. Those of us with the diagnosis of early stage dementia have an urgent call to do all of this now, while we can. This knowledge truly makes each day more valuable. I treasure my days more now than I ever did, and although I live my life at a slower and more measured pace, in some ways I live it more fully. Perhaps there is a "Silver Lining" to this illness after all.