Author Archive

For more than 20 years the organized elements of the Alzheimer’s support community has been leading the cry for more funds to expand research on the causes of the disease and on the search for a cure. Several years ago some suggested they could see “light at the end of the tunnel.” Researchers were on the verge of “breakthroughs.” Some pronounced “a cure was around the corner.” Recently one of the loudest criers and leaders of the “more funds” for research bandwagons has announced “we are making progress.”

How can you claim progress when you don’t exactly know where to go? How fast you are moving? Where you are now, compared to where you were, and where you want to go? There are no mile posts. No one knows how the brain works on a good day. How can we measure where we are on our journey to understand and change how the brain works on a bad day?

Other than some researchers, some organizations, some individuals (most all of whom have an obvious vested interest in trumpeting the notion research is “2/3rd” of the way towards finding a cure for Alzheimer’s (that incidentally was the exact claim of one of the leaders of the research community) there seems no consensus that any of these claims of progress is based upon a generally agreed upon body of knowledge, acknowledged by the research community in the broadest sense.

Indeed most recent “meta” analysis’s of the collective claims of progress in the journey to discover the cause and cure of Alzheimer’s have concluded there is at best no consensus of where we are and where we should go, and at worst there is no agreement as to the value of what we do know as the foundation of where we should be going. Everyday there are contradictory reports of the results of yesterday’s reports of breakthroughs in understanding this or that process of the disease.

In the mean time - now, today - millions of people live with the disease. Millions more live with them. Tomorrow and tomorrow millions and millions more people will unwilling join both these groups. Where is the cry for more research funds to understand the causes, and to cure the pain, the stress, the suffering each and all of these people experience every day living with the disease?

There are only so many research dollars available to the Alzheimer’s community of researchers. How should each research dollar be divided between research for a cure for the disease, and research for a cure for the pain and suffering and stress that comes with the disease to all who are touched directly and indirectly by the disease? Well intentioned fund raisers ask and champion the need for more for research dollars to find the road map to a world without Alzheimer’s. Who asks, who champions the quest for research dollars to find the road map to cure the problems of people living in and with the disease in today’s world? - A world where the disease is a reality - A world where the disease diminishes the quality of life, of relationships for millions and millions.

It is easier to sit at a bench rather than at someone’s kitchen table and conduct research. It is more glamorous to announce research findings at a press conference, rather than quietly observe individuals and couples living happier lives as a result of psycho-social research. Many want to fund the study that “cures” Alzheimer’s, while few seem to want to fund the studies that “lessen” the psycho-social impact the disease has on most individuals and families.

From my admittedly biased perspective throwing more and more and more money at the search for “a cure” without a better plan or consensus than we now have is clearly a waste of money. The more we know about the brain, the more we know we don’t know about the brain. The less we know we know about the brain the more sense it makes to me to spend more time, energy and research dollars on what we do know. The psycho-social impact of the disease on individuals, caregivers, families, and even on the professionals who support them is just plain awful.

How does this happen? How can it be avoided? What causes these dynamics to occur?

Why don’t the individuals who claim to be the leaders of the organizations dedicated to helping people with the disease lead the search for research dollars to fund psycho-social research?  Personally, I’m not at all confident we will ever find a “cure” for the diseases of dementia. I am confident we can find better “social medicine” to support people who live with the disease and their caregivers. I am confident research can identify destructive and constructive behaviors that impact relationships within “Alzheimer’s families and individuals.” I believe we can discover better ways to reduce and avoid care giver stress through research.

Yes, we need to continue to research the causes of this awful disease. We need to continue research to find a cure of the disease. But, given we can’t do everything at once - shouldn’t we spend lots and lots more money and time researching ways to minimize the impact of the disease on those who already have the disease? And dare I say, if lots and lots more money is not available shouldn’t we spend less on the science of this disease and more on the humans who live in and with this disease?

For me and my family, and for millions of others and their families — asking for more and more research dollars (given the way they have been and are being spent) from private and public sources is inappropriate. I don’t support it. Don’t ask me to come and sit next to you as an example of where research dollars are going or who they are going to help. It is complicated, and researchers of all people should know there are no easy answers or “asks” for these issues.

Please, pause and listen to the voices of the people in whose name you ask for more money for your research. Please, pause and ask yourself - what’s the plan? Is there a plan? Where is the leadership? If we can’t do everything that needs to be done all at once, let’s all sit down and decide on the priorities of what we can do right now given our ability, knowledge, and resources.
Let’s think before we speak. Let’s listen before we act. Let’s be real and practical rather than magical thinkers. More is not more. More is not better. More is simply more - more wasted time, effort, and money. We first need leaders and leadership. Then, we need to develop consensus, a plan. And, finally then we can all rush out and call for more money for more action for more research. In the mean time,while we are trying tone down the hype, while organizing the facts, what about psycho-social research?

~Richard

Stand up, speak up!

Stand up! Speak Up! Do not become a victim of your own silence.

Speak for yourself and those who will follow. Ask Carers and Friends
to do the same.
Today will never be here again.
Time is of the Essence!! Use it wisely!!

Tell as many people as possible your
perceptions of your interactions with
professionals, with carers, with friends, with strangers, with your government.

They won’t change unless they know, and
they can’t know unless and until you
SPEAK UP!

Seek to create a Palpable Sense of Change and of Urgency!

Join a Crusade, Now!
Be a Crusader, Now!
Lead a Crusade, Now!

Richard

For as long as I can remember, I have feared snakes.  I have at one time or another in my life feared polio, shots, tall women, death by suffocation, failing a spelling test, asking a girl to go out with me, the atomic bomb, going to weddings where aunts would kiss me, and did I mention women who were taller than I?

I am older now, we have all but eliminated polio as a disease in the world, shots don’t bother me, frankly I seldom run into women who are taller than I, I still become anxious at the thought of drowning, I don’t have to take spelling tests(thank heavens for Spell Check), I’ve learned to live with the bomb, I can now outrun most of my kissing aunts, and most all of my family is through getting married (or at least I hope so as far as my own children are concerned).

So what’s left for me to fear? I’m not concerned with being stalked by lions or Dinosaurs.  Fear has become the 3,000-pound elephant tromping around in my mind. If I ignore it and pretend it isn’t there, I do so at my own risk.  I have never learned to train an elephant.

I AM PROBABLY MORE FEAR-FILLED NOW THAN I HAVE EVER BEEN IN MY LIFE, I am fearful of tomorrow and tomorrow and tomorrow. I am also beginning to be fearful of my todays.  I am fearful of myself and my ability to know what is going on within and around me.  In fact, it would be easier to list what I am not fearful of:  my grand-daughters, my dog, my garden, the Dali Lama, and a few other people and things.

I spend a lot of time trying to understand the disease process rather than trying to understand my own fear processes.  I am, however, more fearful of my fears than I am of the disease.

I do not fear things outside of me; I fear what is inside of me. I fear I am losing control of what rightly or wrongly I have long thought I was in control of . . . me . . . control of who I am, how I am, how I think, what I think about.  It’s all seems up for grabs now.

A very wise and mostly forgotten friend of mine* once observed that we “awfulize” even the smallest of our fears, some of which aren’t even rational in the first place. It will be awful if I fail this test, don’t get a raise, my children don’t like me, and my hair falls out. So you thought you were perfect, you would get a 10% raise every year you work, your children would love you as you want them to, and all your hair will stay firmly rooted in your head even though your mom’s dad was bald when he was 26? Because of all of these fear driven thoughts I am anxious, anxious all the time. I naturally awfulize, as do you all. But, I have other reasons, other fears to attend to. In fact, others now describe me as agitated, edgy, nervous, unsettled, and upset.

The other day I was standing in line at the airport with my daughter when she, shouted: “Dad would you please stop that?!” Stop what, I asked myself? After pouting for about an hour because one of my own family members had shouted at me in a public place, I asked her why she said what she said, and why she said it the way she said it. (This was the first time she had ever, ever raised her voice to me).

Deep background – I dislike standing in lines, in fact I hate standing and waiting in lines. Ask me to hold a boa constrictor in my bare hands draped twice around my neck and I would seriously consider it, if I never had to wait in another line again.

Apparently when we arrived at the airport there was a long line to get to the ticket counter. Seeing this I began to suggest to all who would listen, ways to shorten the line. Could you ask those agents of first class passengers if they would stoop to allow a few of us from steerage to check in through them? Could they start checking paper work so it could be fixed before they got to the ticket counter – you know, good, sound serious suggestions (These are the only suggestions I can now recall making, apparently there were many, many more that I cannot now recall.) Apparently my free floating, fear driven anxiety raised the volume of my voice, encouraged me to repeatedly make the same suggestions over and over again, and you can probably imagine the other behaviors…….I acted like I was agitated.  I was, but surely not agitated enough to warrant a public reprimand. “Dad! Enough is enough. Stop It!”  How long can even family members tolerate this socially unacceptable behavior?

Honestly I was unaware of the intensity and repetitiveness of my behavior.

I’m not, or at least I wasn’t the type of person who did not take into account the feelings of others when telling them how to do their jobs!  Individuals living with one of the diseases of dementia lose the capacity to fully appreciate the impact of their behavior on others. We lose the ability to self-monitor our own behaviors.  Increasingly, I make choices that are socially unacceptable.

Now what does this long story have to say about me and my fears? About me and who I am, how I feel, why I sometimes react to you the way I do?

I’m trying to explain why I am sometimes mad at you, for no reason apparent to either of us. Why I shout at you when you are trying to do something of value for me or to me? I’m not mad at you.  I’m not mad at anything or anyone. I’m fearful of my own self. I’m anxious about it. I’m fearful of not knowing who I am? What’s going around me? My sense of a lack of control, lack of knowledge of my world and myself. I’m scared, I’m afraid, I’m fearful of my own shadow because I don’t know who that is who sometimes follows me around morphing from a giant to dwarf as I change directions of walking.

So how can you empathize with my situation? You who are still scared of snakes, losing your job, if your hair is falling out, if you have bad breath? I don’t mean to diminish the importance of your fears, I just want you to ponder the ultimate fear, the fear of watching yourself die as you know yourself and as others know you morphing into someone no one knows and perhaps no one including yourself may particularly like or love. I just want you to think about how it feels to be out of control of your thought process, how it feels not to trust what you see, hear, smell,  This is my world. This is what is going on between my ears – some of the time.

We are born fearful of falling and fearful of someone sticking something in our eye. Most all other fears are learned. What happens when we lose the connection between what we first associated the fear with, and the feeling of fear itself? We experience fear in its purest, most fearful form …. fear without a reason. We experience free floating fear unrestrained by evidence or reasoning. We experience unrestrained fear of our own fears.  Spooky isn’t it.

When I act fearful of you what is your response? Why? Does your response help calm or confirm my fears? Do you enable me to overcome my fears? Or do you disable me from overcoming my fears? Do you ignore my fears?  How do you deal with fear in the residents you serve? What fears do you believe they have about you . . .  or what you do . . . or how you do it? What fears do you believe they have about today or tomorrow?

~Richard

I believe everyone who hears the words: you have dementia, probably of the Alzheimer’s type, and certainly with Alzheimer’s syndrome should within the following 7 days sit down with his or her family (perhaps friends too) and begin to answer these questions. They should commit to meet once a month and discuss these subjects, as everyone who runs into Dr. Alzheimer’s runs into the need to answer these questions.

Why wait until the last minute? Until there is an incident? Until it is urgent a decision is made now? Let us being to open out new lines of communication today. Dr. Alzheimer’s won’t go away, and he upsets all the tried and proven ways people have developed over the years to love each other, to get along, to support each other.

No matter where someone is in terms of the stages of the disease it is never too late to start talking. There may be a price to pay for not starting earlier, but a larger price is being paid for not talking.

These are issues that should stimulate open communication: between PWD and their caregivers, within PWD, and between and within caregivers.

Richard

Greetings,

I am Richard Taylor, from Houston Texas, and I have Dementia probably of the Alzheimer’s type. I represent, although I don’t claim to speak for, more than 500,000 Americans who also involuntarily share firsthand the experience of living with a brain which is being destroyed by Alzheimer’s disease. We are all under the age of 65, I’m still barely in the group at 64, and we all seem to be in the early stages of the symptoms of the disease. More than 5 million other Americans have worn my early stage shoes, and they have now exchanged them for slippers that come with the later stages of this awful disease.

The fact that I know I have Alzheimer’s disease motivates my focus on actively making today better than yesterday, and not hoping tomorrow will be better than today.

When I was first diagnosed with the disease, every time I got out of bed in the middle of the night to powder my nose my spouse would inquire “Where are you going?” I would respond “I’m going to wander naked around the neighborhood” we would both laugh, and then she would fall back asleep. We don’t laugh as much as we used to. We don’t fall asleep as easily as we used to.

Since the diagnosis my relationship with my spouse, my family, and my friends has broadened and in some ways deepened. We spend more time really being together as a family. We talk more, hug more, cry more, and laugh more. We now seem to do each of these activities more, harder, and longer.

We haven’t found THE right way or ways to live with and through this disease. We keep trying until we seem to get it approximately right, and then the disease morphs my symptoms in a new way, and we start all over again — trying to stay just one step behind the disease’s occasional bouts with loneliness, fear, and frustration. My family tries hard every day to enable and support me. I could not be here today, I could not be who I am today without my family’s constant love and support, and for those efforts I publicly thank you all.

My purpose here today is to briefly share with you my experiences with this disease from the inside (me) out (you). I have become a reluctant expert in what’s it like living with Alzheimer’s. I have become an active speaker, sharing my experiences with others and urging my fellow travelers to speak up about their experiences. After all, if we don’t tell you what it’s like to live with the disease how will you ever know? I think, reason, remember using a brain which is quite different from yours. Different in ways I cannot express, in ways no one comes close to fully understanding. On many occasions I cover up these differences, or I am just not aware of them. Suffice it to say for now, our brains are different.

A cognitive disease is different from any other form of disease. I do not have a lump, a rash, a fevered brow for others to see and touch, indicating I have “this or that” disease. My disease has probably been attacking my brain for the past fifteen plus years. Only fairly recently has it overcome my brain’s ability to fight back, and symptoms have spilled out of my mind and into what I say, how I say it, what and how I think, and, of course, what and how I remember.

The disease does not hurt. I don’t see a cloud in front of me. I am unaware when I am “in the disease” – when my thinking, reasoning, and reacting to what is going on around me are being controlled by a brain which has been overwhelmed by the disease and now operates in ways your brains do not.

At first, in its mildest phase, the disease was merely a mild annoyance in regard to how I functioned. Yet the very diagnosis of Alzheimer’s had and continues to have a profound impact on how I feel, on my self-esteem, and on my fears of today and tomorrow. I imagine the disease as always being one step ahead of my ability to manage all its symptoms. Just when I believe I have figured out ways to cope with the current batch of symptoms it has generated between my ears, it morphs me into a new set of symptoms and the chase is on again. To-do lists worked for awhile. There were “to-do lists about to do lists”. Then there were alarms to remind me to look at my “to-do lists about to-do lists”. Now I keep a small tape recorder with me, a poor man’s Blackberry if you will, to preserve my thoughts, and keep me on track during the day.

The consequences of a short-short term memory can be addressed through technology. The personal and interpersonal consequences of this disease are, in my mind and heart, the least attended to consequences of the disease: a changing personality – more withdrawn, more paranoid, more defensive – more fears, more insecurities about myself, my ability to know what is going on around me, a self-awareness that seems to come and go. These kinds of symptoms translate into occasional wandering, more arguments, more paranoia, more insecurity, more of the disease and less of me – these are consequences that my caregivers and I struggle with every day.

Unfortunately, as the diseases progresses, the line between it and me is not simply blurred, it is being erased. I am someone who no one seems to understand — nor can anyone seem to predict what I will do or say in any given situation, especially those that are stressful or occur late at night.

The symptoms are now more than forgotten names, fishing for a word, or occasionally misplacing items. Now I am confronted with an inability to add or subtract, to read, to safely drive a car, to appreciate money. I fixate on my own inaccurate perceptions. I become agitated, and I am now unaware of it while it is happening. As Christina tells me when I declare for the hundredth time that I know the rules of how to play Go Fish: “Grandpa there is Dr. Alzheimer acting up again.”

Please consider and reconsider these concerns of mine: Everyone living with my diagnosis is and will be, until the moment of their death, a whole and complete human being. Every day of my life I will be, in my own mind, Richard. I am neither half-full nor half-empty. I am Richard. I am not fading way. Will you promise to always treat me as Richard? Or will there come a time when I am seen as Richard’s shell? Richard is gone and all that remains is some one, some thing you do not know and cannot understand. Someone who is difficult to visit, to talk with, to love.

I want and need to feel connected to myself, to you, and to today. Please do not exclude me from the decision-making processes that dramatically impact my own life. Ask me, include me, and give me the benefit of the doubt. And for both our sakes, do not lie to me.
I want and need to give and receive love. Even when I cannot remember your name, will you please love me the same as when I could remember your name? I did not forget you; a disease blocks my ability to remember your name. Is our love as unconditional as it was on our wedding day? Get ready because one big test is coming up for this vow.

Treat me with dignity — that is the birthright of every human being. Treat me, speak to me, relate to me as if I were an adult even though I may sometimes act like a child. Treat me as your parent, your best friend. I am still home you know, even if I cannot always answer the doorbell and open the door.

Honor and protect my right to personal privacy.

Help me live in and understand today. All of us share the need to live in, understand, and appreciate each moment of our lives – not just based upon who we were and what we did. I am who I am today. No doubt influenced by my past, but I am not my past. I am who I am today. Help me live in today. Honestly, I do not need much help living in yesterday or last year, or fifty years ago. It is nice to talk about it sometimes. But I need your help in understanding today.

I am fearful about losing my sense of purpose. Why should I get up in the morning? To jog? To play bingo? To do your bidding? To sit in a chair in the sun? To spend the day trying to remember who I was?

Please stop disabling me because I cannot act as I did yesterday. I can still act; do not take that away from me. Treat me as someone you love as I am, not who you wish I was or think I should be. I know many want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be, nor do I any longer want to be. I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am, one day at a time.

Please be with people with dementia as they are today. It is all well and good to reminisce with us, to make contact with us by encouraging us to share memories with you from our pasts, but I too want to live in the here and now, and to accomplish that I need your support.

I am having more trouble now than you are accomplishing this life-affirming goal. I do not always understand what is going on around me, why others are doing this or that to me or with me, what happens next, what happens after that.

I am me, and while I’m not always as good at explaining that to you, while my dementing disease may inexpiably change the me I was yesterday or even a moment ago, I am still a whole and complete ME. I may be more agitated, I may be silent for longer periods of time, I may be more difficult to understand, but I am sure you can understand my need to understand I am still me. I am still an adult worthy of your continuing love. More than ever, I need and want your understanding, your forgiveness, and most importantly your love.

I am lonely, sometimes for who I was, sometimes because I am losing the ability to understand myself. Nevertheless, I am to the end in need of a sense of presence of myself and what is going on around me. Help me breakdown the barriers that dementia places around my mind and my heart.

Just as I need your love, I still want and need to give my love to you. I still want to interact in a world I do not understand as I did before this awful disease. What really counts for me is to first, last, and always know who I am today. But I need your help in order to achieve that.

You can help me communicate my own joy of living. You can help me understand how to forgive myself and others. You can support my efforts to live in the moment, this moment, today, the here and now.

And what can be done early on in the disease process? We can talk to each other in ways that are probably unfamiliar and uncomfortable for most of us. We can be more open. We can seek out new ways to show our love for each other. We can as families become closer. For me it is now or never.

You can be watchful of my own behaviors in the name of safety but I ask that, in the name of meeting your own needs, you do not disable me. Consider my need for autonomy and purpose as well as your need of safety and peace of mind.

We will each get through this. There is no question about it. The only really big question to answer is how hard will we make this journey on each other and ourselves? We can, in the end, really only change ourselves, and I could make an argument that I am losing the ability to do that too. I need your help, your flexibility, your willingness to do more than just tolerate me as I am immersed in this disease.

Thank you for allowing me to report on my journey thus far. I hope by knowing me a little better you can know yourself and your loved ones a little better.

~Richard

What have I lost for which I need support – can’t manipulate or understand numbers, get confused and bewildered in crowds and unfamiliar surroundings (especially airports!), can’t follow conversations involving more than one or two people, lose my train of thought –easily, sometimes in mid sentence, sometimes while I am speaking, am not as confident in myself, seem to have a delay in some of my oral responses, frequently initiate or join conversation in mid thought – others don’t know my context, can’t find words and can’t describe them, talk too much – lack economy and specificity in conversation, swear, increasingly wander away from people and off on my own.

What do I want to do: continue speaking and writing about what it is like to have alzheimer’s disease (it’s my newly discovered sense of purpose), serve as a role model for others with the disease, show another side to caregivers of their issues, open the minds of professionals from a patient’s perspective. Become closer to my family and friends – spend more time with them, share more activities with them, speak a little less and listen a lot more to others, be more open and less defensive and sometimes aggressive when I perceive others are making decisions for me without first consulting me, understand how I am growing rather than concentrating on what I am losing, show my love more for others regardless of their response to me,

How can you help me do it:provide attention and support to details that now escape me, anticipate my safety needs (falling, wandering), work with me to limit and realize when I am talking too much, off point, inappropriately).

Talk more to me, listen to me and reflect back to my satisfaction that you understand what I have just said, suggest solutions and avoid defensiveness, blame, debates, and deflective responses, provide more feedback, less judgmental, more creative responses, more “I” messages, more solutions, help me solve problems rather than understand or explore them. Keep me focused on my larger goals and how best I can accomplish (get to wrapped up in the confusing and confused details of the day, or a conversation, of an immediate need. Lost the perspective of a big picture, of my life. Help me find it, define it, point it out to me when I am neglecting or straying from it. Cheer me on when I am realizing it. I don’t always stay in the moment. I wander back into the past. I am influenced by my fears. I am fearful of tomorrow. Find me when this happens. Point this out to me. Help me come back to hear and now. Assure me you are here to work with me, that you accept me as is, that you love me today and tomorrow as you did yesterday and the day before that.  I’m more insecure than I ever was. I’m more in denial about some old issues, and lots of new issues. Gently help me understand and deal with these issues. Accept we don’t understand, we can’t understand each other like we did, or thought and acted like we did yesterday. Live with me, celebrate with me today.  Be more of a cheerleader for me than ever before. Always give me the benefit of the doubt. Trust my intentions more! Talk about things before you argue and debate things. Look for underlying and sometimes obtuse motivators. Look first to me and what’s going on. Honest sometimes I don’t know. Learn not to mourn. Look for joy in today, and help me do the same. Eat more fruit. Worry less about the future, about money, and death.

What are new barriers for me: I have lots more fears, lots more deep fears, lots more fears I can’t explain. So do many of you, but they are seldom the same.

We don’t listen in constructive ways. We don’t provide feedback in constructive ways. We aren’t solution focused. We take turns denying I have this or that problem. We don’t realize how fears have changed who we are as individuals, as a family, friends, as a couple. We have many more insights,  and a few better insights into each other than ourselves.  We are increasingly isolated from sharing feelings with others, with being vulnerable in front of others, with depending on others to take care of us, with today and tomorrow.  Living through this disease is mandatory for all of us. Living as close or closer to each other is not. Changing how we relate to each other is mandatory. Becoming closer or even staying the same is not. Let me share your feelings and fears. Let me into your heart. Don’t expect either of us to be able to solve or even address all that we did in the past, but trust that we are doing our best.

I now believe all of the issues that will face PWD begin to impact them in one way or another way before anyone talks about them. We need to start enabling, planning enabling, understanding and taking responsibility for it long before we really need it. You are here (wherever that is) and you will end up here. It’s not a question of if, but when. Not a question of If, but what will you do about it when the symptom appears.

Waiting for shoes to drop is the wrong way. We shouldn’t wait for anything.

~Richard

Several years ago while driving home from teaching a nigh class, I was suddenly aware that I was steering my car cross eight lanes of oncoming traffic! I was following the white line, but the white line I was following was used to direct traffic when they were adding lanes to the tollbooths about six months before this incident! That was enough to scare me. I voluntarily stop driving the next day.

For many people, like me, who wake up each morning and arm wrestle with Dr. Alzheimer until they fall asleep that evening, giving up driving is the most difficult decision for them and their caregivers to make and/or accept. What I did not realize when I gave up driving, was the loss of my personal freedom to come and go as I pleased was the giant root below the surface supporting my original resistance to give up driving.

I know, I know people my age are supposed to be in love with cars. The auto industry conditioned us in the early 50s, and each year it reinforces our passions for our cars with daily doses of Viagra for automobiles in the form of advertisements. Honest, I did not love my car. I was unaware of any psycho – social – sexual response on my part when I slid behind the wheel of my eight-year-old minivan.

The struggle over what to do about dad or mom’s driving usually begins when there has been an accident or a near-miss, or even worse yet several accidents and near-misses. I know of one caregiver who simply step refused to drive as a passenger in the car and she participated in several near-misses. Others reason, plead; construct horrific “what if you run into a school bus filled with nuns, babies, and your grand-children” scenarios; and/or threaten the intervention of physicians, state and local police officers, and sometimes even God herself if their loved ones do not surrender their car keys, right now.

Usually the first attempt to resolve this issue to the satisfaction of caregivers ends in failure. Everyone leaves the room more upset with me than when they entered it. Some of us, people living with one of the diseases of dementia – especially Alzheimer’s, are honestly unaware of a problem, and are perplexed. Understandably, we b

ecome quite defensive when the entire family attacks us by trying to take our car keys away from us. This was probably not the first time these family meetings have turned on them. What about the family meeting struggle to get us to say aloud “I have Alzheimer’s disease.” “What about the time they wanted me to change my clothes because they didn’t like the way I was dressed?”

For others, this meeting is the culmination of on-going verbal attacks about our driving. “Every time I make the slightest little miscue driving everyone in the family points it out to me, and here comes that bus load of nuns, babies, and my grandchildren. What about all their previous accidents? They are all still driving, and no one seems to care one way or the other.”

Some of us have discovered it is in our best interests to pretend we don’t know what they are talking about, or create some explanation as to how it happened and hope all will also accept it as a valid excuse.

All these defenses are constructed because we are being attacked. Attacked by our own family members! “I’m not really sure why I am so opposed to doing what they want me to do, but I do know I am strongly against it. Why do people keep accusing me of acting as if I am paranoid? I’ll tell you. I am defensive, not paranoid, because you keep attacking me!”

For many of us we sometimes, or always, lack the concentration to generate insights on ourselves, our behaviors, and the consequences of our behaviors. Do we have to admit this to a whole room full of people? Do we have to figure this out for ourselves? We are the ones with the altered thought processes. “Why don’t you figure this out for yourself and adjust the ways to act towards me? Instead, you again want me to act and think as I did, like you, like your want me to. When will you ever get over this futile strategy, this continually failing goal of yours?”

“If I can think like you now, if I can generate insights like this now, why don’t I just go ahead and do this 24-7? Because I can’t! Please get it! I am personally now in a sort of twilight zone where I jump back and forth between my past and my future. It’s even harder for me to deal with because I am not aware of where I am at any given moment. Increasingly when people point out to me after the fact where I was, I still can’t figure it out.”

But………..as usual……….I digress

Back to “if you keep driving one or more of us, including you, will probably go directly to hell.” “Oh?! I just can’t for the life of me grasp why you are so worked up about this. I’ve been driving since “I like Ike” and no one ever brought up what a bad driver I was or might be.”

I’m sure many of these conversations have been repeated by many of the readers of this piece. I heard them, I read them. I know them. The solution does not lie in winning the argument(s). The Beatles were right, “there is nothing to be said that hasn’t been said” before (or something close to that). In fact, for families who have waited until “we cross that bridge,” the “you must stop driving now” bridge, there is no answer. There is however, a better process than what is currently being recommended. I am no longer sure “ganging up” with the whole family in the room is the best strategy. It may be for the family because they can support and reinforce each other, but it sure isn’t for me, nor I suspect others living with the disease. Yes, it’s intimidating to me, but that cues my defensiveness. Yes, it is overwhelming to me as I must turn and beg family members to please support me. In the long run, does this enable me to be all I can be, or is it another nail supporting the disable efforts? Does this reinforce my own sense of wholeness, self-esteem, wellness, dignity, etc., etc.? Of course Not! When will carers and healthcare professionals get it? Might does not make right, never ever in my mind. Over time your efforts to use “might” erodes my ability and my willingness to resist you. It reinforces an “I – it” view of me vs. the world. It reinforces my belief you and the rest of the world see me as an “it.” After all, you are the ones telling me how hard this is on you, and how much you have given up.

The issue of driving needs to be addressed early on in the disease process. We all need to be pre-prepared for it. We all need to agree, at least then, what/who/when/where/how, we will all determine it is time for me to stop driving. You-all need to keep remind me, lest I forget. You-all need to keep reminding me of the arrangements we have made to diminish my freedom to go when and where I want. You-all need to assemble the members of the church, neighbors, friends, volunteers who will dissolve my fears of being stuck here by diving for me. They all need to learn how to drive for me, and not drive me. Offer to try it one day a week for three weeks to see if it works. Do it now, while I don’t see it as a real threat. Go along with me to places we usually go together. Let me go by myself to places I usually go to alone. We can deal with the secret police issues latter on when I need them. Build my confidence there will be little change in my life style when I park the old mini-van for the last time. And please do it one-on-one. Don’t jump me with the gang of seven. Don’t leave it all to Mom or Dad to drop the hammer.

So far, I have suggested this to seventeen families. It has avoided the struggle in fifteen of them. Those are certainly better odds of success than the current methods produce!

Now what of those who are too far into the disease process whereby this approach can’t be used? Those sitting in the front rooms now, surrounded by uncomfortable family members. Everyone up and out of the front room. We first need to try this one-on-one, and everyone needs to participate over a couple of week period. Get your story straight with each. Get the support network together while the conversations are taking place. Offer to try it out to see if it works.

Use the “there is strength in numbers” approach as a last resort not as a first preferred course of action. Don’t threaten in hopes of scaring me, and not be able to follow through. Don’t just be firm and not offer some solution for which you will take responsibility. This isn’t all about me, at least in my mind it isn’t. It’s about what you want, not what I want.

Best would be to not wait until the car is in the shop being repaired from the accident. If you need physical proof to justify imposing every constraint you are going to have to impose on me, we are both in trouble.

Perhaps this is not “the best” way to engage this issue, but from my perspective it sure beats the coins of the realms that are currently in vogue. Waiting to cross this bridge when you come to it is definitely not the right road to start out on. Early on, early stage, everyone creating a family road map seems to be a better answer.

~Richard

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