Jun 19, 2012

Misinformation is a Disservice

Providing misinformation to anyone is a disservice, and in our case, adds to the already-too-activated psychological defense mechanisms of denial, blaming, justification and rationalization.  The relative who has inserted herself has apparently told Dwane that:  he can't have the diagnosis of Lewy Bodies Dementia because that can only be diagnosed after death through an autopsy, that it is way too early for him to be in assisted living and he should be living independently, and that he has at least 7 good years left.

Wrong, wrong and I wonder where she obtained her crystal ball.  It is my belief that we can only deal with that which we are willing to face factually.  So, let's look at the facts as we currently know them from one of the best medical facilities in the world, Mayo Clinic.  Dementia can be diagnosed through a thorough battery of neurological and psychological tests.  Even twenty years ago, my brother-in-law was diagnosed through the expertise of Bethesda with an early onset dementia, called Pick's Disease.  In our case, Dwane was tested at Mayo Clinic and he meets all of the criteria, has all the symptoms of Lewy Bodies Dementia, which includes:  dementia or diminished cognitive functioning in the form of deficits in judgment, comprehension, problem solving and reasoning; fluctuating attention and alertness; visual hallucinations; REM sleep disorder, Parkinsonian's features, and delusions.  The psychiatrist at Mayo Clinic said that Dwane had all the classic symptoms of Lewy Bodies Dementia. 

Living independently?  Here are the facts:  Dwane has not paid a bill in at least six years nor done any of the management of finances, he does not prepare meals, he has been told he should not drive, he is often unable to figure out how to dial a phone or use a remote for television.  What he can do independently is get the food off a plate and into his mouth, dress himself with minimal help -- with modified clothing, and walk. 

7 good years left?  Well, it may depend on how one defines "good years", and no one can predict the human spirit and will to live.  What Mayo Clinic says about Lewy Bodies Dementia is "Some people die within 2-3 years after diagnosis, while others may do well for 5-10 years."  We had two good years following the diagnosis, and since then it has been a steady but erratic tumble downward in functioning and overall well-being.

These are the facts as we currently know them.  It does Dwane no good to distort these facts.  In fact, it is harmful because it gives him false hope and an excuse to be resentful.

In discussing the diagnosis of dementia in the Mayo Clinic Newsletter, Angela Lunde says, "In some cases, doctors may use the more vague terms to avoid breaking bad news. Alternatively, he or she could say "we can't really know until autopsy." The truth is however, that after an adequate evaluation, a doctor can offer a diagnosis that is accurate 90 percent of the time.:

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