Suddenly, the light goes on….

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….

Many researchers believe most Alzheimer’s drugs have failed because they were tried in people whose disease was too advanced to do any good.


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.

 My Mom in 2004
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Comments

  1. No. 7 says:

    I can't even imagine the battle that millions must go through, or in your case, have gone through, to simply be heard. Drug companies push these medications on physicians who then prescribe them en mass without any real proof of effectiveness. I don't know, maybe it's the med mal background coming into play, but isn't the suffering from dementia enough for everyone involved?

  2. Jordan says:

    I've never dealt with Alzheimer's but I deal with PTSD on a daily basis and I can honestly say that while some drugs are great and really help Jake, others have been tough, and I mean REALLY tough. Last winter we had to check him into the hospital/psych center for almost two weeks while they changed every single one of his pills because the ones he had been on were just awful. Now he's on a great set and has slowly been able to go from 4 doses a day down to just one or two on all of them. He's happier, healthier, and life is SO much better. I think doctors sometimes don't really realize what living with the side effects of these medications, day in and day out, is like.

  3. Crystal says:

    Hey hun! My grandma has alzheimers. I hate that disease. I feel personally stolen from. I loved my gram and now she is mearly a shell….I can't even stand to go and see her. It's so sad! Everything -the stealing of her life, mind, and spirit- happened so very quickly. Testing and testing and testing to find get a death sentence. Nothing helped it was fast, yet slow. I dont' know if that makes any sense at all. I hate alzheimers on a very personal level!!

  4. Erika says:

    I worked for some time in long-term care as a caregiver for people with various physical & mental issues, one of the prevalent ones on my floor being Alzheimers. It never ceased to amaze me to flip through a client medical file and find upwards of PAGES of prescription medications for a variety of symptoms & the speed that some of these were switched up for others on a regular basis.

  5. Slidecutter says:

    Thank you all for your comments. When I started my blog it was to outline a (not finished) book about my mother and Alzheimer's. I've since written about many other things because, other than relating my experiences, there isn't much helpful information to share, just my rants.@No.7…My feeling is that physicians use too many elderly patients as guinea pigs with meds, figuring their life expectancy isn't long. They just experiment hoping to learn something in the process. Obviously, in the past 27 years, someone hasn't been making notes on their "findings".@Jordan..I'm glad that a better course of meds proved to be beneficial. Seems it's just getting someone to do an intensive evaluation and listen to the patient and caregiver.@Crystal..What angered me the most was to learn, in my Alz.Support Group, that those elderly with just basic Medicare all received the same textbook meds and received little, if any, attention from their physician..other than the 10 minute (or less) office visit. But, those with more intensive medical coverage received in-depth testing and more personalized treatment.@Erika…A good deal of my information comes from a friend who is a director of a local nursing home. Before this person took charge, elderly patients in end-stage Alzheimer's were given dosages of Haloperidol and..Morphine which worked to bring a fairly quick end to their lives and, of course, make room for more patients. Fortunately this procedure has been stopped in many places. I completely agree with you on the haphazard switching/stopping of meds..brings up my guinea pig theory.

  6. It just seems so sad how little progress we've made in treating and preventing this disease. My Meme was recently diagnosed with alzheimer's. It's insane how fast she's deteriorated. when we visit, she hardly even talks anymore. And when she looks at us, I can see her struggling to remember who we are, and it's just heartbreaking. I'm so sorry about your Mom…I can't imagine going through that…

  7. Slidecutter says:

    @Katie…I'm sorry about your Meme; if there's any consolation, when an A/D patient goes through each stage, they're often far back in time, sometimes, at a gentler place in their lives. It is upsetting for everyone around them, not being recognized, even confused with another family member who might have passed years ago when your loved one looks at you with a sometimes blank stare.My mother's episodes of remembering varied from comical incidents to re-living some difficult times in her early life. The worst part for me was no longer fitting-in anywhere as her child, as anyone other than constantly being called "the bitch" throughout her backwards time travels.Will keep prayers for your Meme..

  8. Ms. Blasé says:

    My grandmother had Alzheimer's, so I can relate to some of the challenges that you faced in loving her through those debilitating years. I greatly commend you for all of the research you did and for sticking up for her when she was unable to do so for herself. I think that Alzheimer's is still looked upon as mysterious, thus scientists frequent the cautious route as they dabble in the dark and play guessing games on patients. I'm hoping, too, that it doesn't take another 27 years before they have another break-through or create a possible cure.

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