A Roses is a Rose is a Rose, but is one person with dementia just like another person with dementia

Hello

Someone named Rose sent me an email tonight. I have reprinted her email, and my response. I think my response is before here comments, but I couldn't figure out how to switch them around. Read them both, if you want, please.

Thanks....Richard

Hello,

sorry I can't EVER SEEM TO ANSWER ANYONE WITH "JUST A WORD" or even with just a word or two. It's unfortunate that you haven't met many folks in the earlier stages of dementia. There are lots of us out there! If you know one or two or twenty people with dementia that is exactly the number you know Generalizing from one person to another is what doctors do, we shouldn't! Dementia is expressed through our brains, and each of them is formed by it's own unique life experiences. Each of them can cope with the symptoms of dementia for just so long, and in just so many ways - some much longer than others, some in many more or many less different ways. Having a purpose, a new one for me, has driven me to run away from my future, and it's working pretty well now, thank you. Every time I do bump into a symptom for which I was unprepared I of course over react, but then sooner or later I pull myself as best I can back together again and move on. Asking others to enable and support me in new ways to get me as successfully as possible through the next night.

I don't feel the need to publish my five years of slowly deteriorating neuro psychological test. I don't believe how I say things should be of much interest to folks, it's what I say. Is it right or wrong, true or false, unsaid, misspoken, etc. That is where others should focus their attention. I was diagnosed by one of the best diagnosticians (at the time) practicing in Europe. I have been tested and retested by psychologists with widely recognized names and reputations. Since my wife's insurer changes with the low bids to her employer I have passed through half a dozen different neurologists.

Many, I would go so far as to say most folks who are living with the symptoms of dementia are living in their own self-constructed invisible closets. Many, I would go so far as to say most caregivers at one more times have seen the symptoms of dementia in their loved ones and they ignored them, made an excuse about them, said they weren't worse enough yet for them to step in. The defining moments of what it is like to live with dementia come near the end of life. This is what is remembered, this is when we are gathered together in secure facilities and "cared for." This is when everyone must face their own mortality, their own worst fears about what it is like to lose contact/control with yourself, and to witness it in the lives of people they love. This is when society/families seek a label from someone in a white coat so they can "understand/predict/know" the unknowable. To soften this brush with reality others begin to "hope" things will change for the folks with the symptoms. This is when we all hope real hard a "cure" will be found. This is when magical thinking overwhelms us to keep us from losing our own minds - at least that is how folks sometimes describe it. We become sure that reductionist science will eventually, and soon if we would only spend more money faster, find the event/chemical/electrical process between our ears that is the first cause of Alzheimer's disease - why we don't say dementia instead is a tribute to those who promote their brand label. And having found that bit of information surely science will figure out a way to stop it/reverse it/at least slow it down. Maybe, maybe not. Right now my money is on not, because we need more money on research for today's problems than we need more money to research tomorrow's problems.

I'm not sorry if I don't fit your mold of how people with dementia ought to act, sound, look like, etc. I am Richard. Not fully the same Richard I was five years ago - but then again who is. Honestly I'm not sure if I have Alzheimer's disease, but only because I'm not sure there is such a thing, such a disease which is mutually exclusive from other named and unnamed forms of dementia. I'm not even sure if dementia is a disease in the sense there was a moment in time when I didn't have it, and then I did have., in the sense there is some human/pharmacological intervention that will stop/cure/slow down/and/or reverse the number and severity of my symptoms. Anyone who tells me for sure they know all that I don't know, I am suspect of how much they know at all.

As I "fish" for more words, as I lose my place in time and space, as I misunderstand others as much as they seem to now misunderstand me - I know something is going on between my ears that is not going on between the ears of many others. I sometimes now struggle within myself to maintain the ability to step outside myself and figure out what is happening to me. Not all folks find this a useful way to spend their time, I do. Frightened because he honestly believed he had figured Jesus out, when in fact he had not; scared when confronted by evidence that contradicted his own beliefs - he chose to doubt the truth before him rather than doubt himself. After stepping outside of himself and looking within himself he saw that he was the source of his doubts, not what was going on around him. Accepting things, people as they are. Taking the time to listen to them. Encouraging them to be introspective. Enabling them to be all they can be at any given moment in time.

I don't believe dementia robs a brain, leaving it empty. Every brain is always full, some may be inaccessible, some may be confused, some may be inexpressible - but then the task for the passengers in the train who were in the bathroom while it was being robbed is to discovered how communicate, support, and love the folks who experience in insult to their thinking. It's just plain not right to think, feel, say that people with dementia aren't whole human beings, whole people. Others might find them hard to understanding, to predict, to love. Just because you can still understand me, still predict me, still love me doesn't mean I's not living with the symptoms of dementia. It simply means by virtue of my growing up my brain stored up skills and information to work around and through the symptoms of dementia for a long period of time than some others. I didn't plan for that to happen. I'm glad it did!

These I believe are the hallmarks of an open mind, a person-centered mind, someone who I know is my caregiver. Finding someone standing outside of the boxes you have created to house people with dementia into various stages, and type of illness is a good sign. A sign you can see exceptions to your own rules. Now you need to examine your own rules, not necessarily the exceptions. It's okay for us to disagree about the type, form, severity, progression of the symptoms of slipping cognitive abilities I consciously and unconsciously try to cover up most of the moments of my life. When it comes to dementia diagnosis and categories there is no such thing as one size fits all, or even a group-I believe there are no fences between the types of dementia. Saying there are, especially when said by people in white coats and with M.D. after their names do not necessarily make them real. Attempts to "prove" the various theories of what causes dementia have been consistently and increasingly unsuccessful. In the mean folks in the early stages, folks in the mid stage, and folks in the end stages of dementia try as best we can to live purposeful, love filled lives.

More emphasis, more research, more dollars, more examination should be focused on enabling them, not sorting them out, not questioning their labels. This is what I think and believe. The exact words out of the mouth of my first neurologist were "Richard, you have dementia, probably of the Alzheimer's Type."

Every time I launch myself on one of this rhetorical super highways, I tell myself there must be shortcuts that I am missing. I'm sort of sorry this ran so long. I hope I answered your questions, addressed your doubts, and didn't step on your toes on the way. Thanks for writing. Stay in touch and I will do likewise.

Richard

By the way I had 46 spelling mistakes, 14 grammar mistakes, and 23 typiong errors in this blefore I checked it.

On Sun, Sep 5, 2010 at 9:41 AM, wrote:

I just wrote this comment on the Alzheimer's reading room in answer to your article. I'd love to know which diagnosis you had.

Thanks in advance.

Rose author of "Just a Word"

First let me say, I find it hard to believe that you can write like this and have a Dementia, known as Alzheimer's. I'd like to know which Dementia you have been diagnosed with: B12 deficient, Alcoholic dementia, Diabetic dementia, Vascular dementia. Which One? Because you don't fit Alzheimer's if you can write like this. People I've seen and taken care of, did not write like you after a few years. They could not find the words to use to speak let alone remember how to write. I DO believe in research. I'm not sure of the monies that are spent, but I do believe in research for a CURE for Alzheimer's. I've seen how it robs a brain of everything, and everyone, sometimes in a very short time, five years and less. Do we need to study the people with the disease? YES. Possibly in different categories. One drug may NOT fix all. I'd like to know if Alzheimer's is caused by something we eat, drink or breathe. I myself think it has something to do with Sugar, at the least the people I've seen diagnosed with Alzheimer's.

I look forward to your answers.

Thank you in advance.

Rose