Hot off the presses today, the first update, in 27 years, regarding Alzheimer’s disease.  I’m not impressed with all of the latest findings.

New Alzheimer’s Guidelines targets early stages

Don’t get me wrong, for anyone going forward this medical epiphany, supporting pre-testing for the disease, will hopefully benefit people slated to suffer with Alzheimer’s/Dementia and dictate treatment that might prevent it or significantly slow its progression.   That’s a positive.

What I do take great exception with is this one statement in the news article….

As a caregiver for my late mother, I battled with her physicians over the medications they prescribed that did nothing for her aberrant behaviors; in fact, every little pill, all combined, did nothing but exacerbate various aspects of  the late-stage dementia she suffered from.  This was almost 8 years ago, when my mother first came to live with us and I did my own intensive research, challenging her physicians at every turn.

I’m well aware that doctors continue to treat the caregivers along with the patient, prescribing sedatives, anti-depressants and anti-psychotics along with drugs like Aricept and others administered to those suffering with dementia.  The hope has been that, for the patient still living at home or with family, these drugs would quell the horrible symptoms that create absolute turmoil in the familial environment.  I can speak, with great authority, that this course of treatment never proved to be favorable in caring for my mother which is why I ceased giving her anything that was prescribed.  Eventually, her physicians concurred and her quality of life was compromised only from Alzheimer’s destructive march, not the side-effects of multiple medications.  As I’ve posted before, patients in too many nursing facilities are routinely pumped full of these medications if they have no one to advocate for them in their treatment; a very sad situation.

I’d say that it’s time for the medical field to acknowledge feedback from people directly involved in the daily care of Alzheimer’s patients; people who aren’t doing it as a business or part of their job…..Caregivers! 

Maybe then it won’t take another 27 years for the next light to go on.

Yesterday, January 11th was an anniversary, of sorts; not a pleasant one but a date that will stay in my mind for years to come…if I live that long.

My late mother went for a pre-dawn, dementia-stroll, on the eleventh of January, eight years ago, an event that I shared on an earlier blog called “The Bad Day” which I invite you to read just to set the scene for my ramblings of the moment.

One more, fairly massive, snowfall made its way into the Northeast last evening; I’m certain that Mom was behind it.  Trust me, this is her way of sending out reminders of that date which she doesn’t want forgotten.  Mother always had her methods of getting noticed even through the dementia destruction of her mind.

Right now, I sit here with intense mixed emotions as I recall the date that significantly changed my life several years ago.  Yes, it changed mothers as well but remember, she was well on her way into Neverland at that point, insulated from what would deeply affect the person who stepped into the role of her caregiver.

I will never forget walking into her apartment early that January morning; there she sat, dressed in a cotton robe and slippers with a local police officer standing by her side.  She was smiling, still holding a New York Times newspaper that she had come across during her stroll and loving every bit of the attention she was receiving.  Mom showed no ill effects of being out in temperatures of 13 degrees as she walked the city streets and I’m surprised still that she didn’t make the officer some coffee while he waited patiently for my husband and me to arrive from upstate.
                                             
                                                               
I’m guilty of probably ignoring so many signs of Mom’s decline; have said it many times.  Like mother, like daughter in so many ways.  Was my behavior payback for the years she turned her back on the abuse I suffered as a child or, in my heart, was it orchestrated by the fear of having to deal with becoming her parent?  Thinking back to how much different the scene might have played out that night makes me feel even worse; what if she had fallen and frozen to death in the streets; what if some degenerate had attacked her?  It would have been my fault, and no one else’s, for not taking better care of her, for not being more vigilant in acknowledging that she was coming mentally un-glued.

My three children will attest to the fact that I was less than a perfect parent myself having been extremely hard on each of them when they were younger.  I’m human, made plenty of mistakes but at least I’ve acknowledged those shortcomings to my kids; my mother never did where I was concerned, she just went about living her life and looked the other way.  That…is a dagger that is permanently lodged in my being.

Nevertheless, the guilt remains and, for the moment, it’s about me, not my late mother.  It pains me still that she left twice in my life without saying good-bye; the first when dementia took away her mind and the second on the day she passed away right after I walked out the door.  Here and now, I admit my faults and will always feel that I could have done so much better.  Maybe that’s where I’m different; possibly my remorse is dictated by the fear of dementia someday creeping in and stealing the person I’ve been or haven’t had the chance to yet become.  More likely I’m afraid that those closest to me might never hear me say “I’m sorry”; that’s why stating it here is important, it is now a matter of record. 

I like that.

Family and friends will understand; visitors to my blog who stop in to peek at my life might understand as well and maybe, just maybe, I’ve managed to pass on some support to someone else, hopefully a caregiver who is feeling overwhelmed and alone.

You aren’t alone.  Come and visit me anytime you feel the need.  Coffee is on, sit a while….