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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Behaviors

Big Pharma: Principles vs. Profit

21 Wednesday Oct 2015

Posted by Ann Napoletan in Advocacy and Awareness, Behaviors, Caregivers, Helpful Resources, Mom, Pharma, Ruminations, Treatments and Therapies

≈ 4 Comments

Tags

alzheimers, dementia, dementia big pharma, off label anti-psychotics and dementia, pharma, psychotropic drugs and dementia, risperdal

“Med changes are always a coin toss. Sometimes they really upset the apple cart.  In fact, the [house] doc had increased one dosage from 0.5 mg to 1.0 mg a couple of weeks ago and it wreaked absolute havoc on her.  She did nothing but sit and stare into space during waking hours, wasn’t eating, had no reaction when Jess or I walked in, and was completely non-verbal…”

The above snippet is from a post I wrote in 2011, and the drug mentioned was risperdal.

I’ll forever wonder how much more harm than good was done by the various and assorted medications Mom was given over the course of her battle with Alzheimer’s. Once it was clear that Aricept was no longer doing a damn thing, prescribing medications to control worsening symptoms was nothing more than a crap shoot.

Warning: Steep Drop Ahead

Psychotropic drugs are a slippery slope. Anti-psychotics, anti-depressants, anti-anxiety, mood stabilizers. Can you imagine what the various and assorted combinations, not to mention constant changes, are doing to our loved ones?

Depakote, Risperdal, Ativan, Lexapro, Buspar, Celexa, Zyprexa, trazodone, and the most dreaded Haldol. Just a sampling of the psych drugs mom was on at one time or another.

It’s the classic chicken and egg; the symptoms and behaviors worsen and a drug is prescribed. It works for awhile, then seems to lose its effect so they try something else. The cycle continues. At what point do the drugs become a major part of the problem instead of part of the solution?

All in the Name of Profit

One of the most disturbing notions is the increasingly “acceptable” off-label use of these drugs.

Susan Macaulay recently wrote several articles on this very topic. The information shared is absolutely appalling, and underscores the reason our drug companies are often looked upon with such mistrust and even disgust. Sadly, as illustrated by the 2008 UK report Susan references, this is also nothing new.

At a minimum, we owe it to ourselves and our loved ones to be informed – thank you, Susan, for compiling this important material.

The truth and lies about risperdal and greed have begun to unfold and it’s not a pretty picture (9/17/15)

10 things Johnson & Johnson probably wishes the world didn’t now know about the way it marketed risperdal (9/18/15)

Find the lady in the lies: a shell game of side effects and suffering for the sake of antipsychotic sales (9/20/15)

7 things you should know about how and why antipsychotics are inappropriately prescribed to people living with dementia in care facilities (9/26/15)

__

Susan Macaulay cares for her mother who is living with Alzheimer’s and is a recognized dementia care expert. Macaulay is creator and curator of SheQuotes, My Alzheimer’s Story,  Amazing Women Rock, AmazingSusan.com, and Succeed With Susan. She is a feminist, global citizen, lifelong learner and the author of Everyday Feminine Wisdom and soon-to-be-published “the dogs’ breakfast.”

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Alzheimer’s: Comfort, Reassurance, & Happiness with Sootheze Pals

08 Saturday Aug 2015

Posted by Ann Napoletan in Behaviors, Caregivers, Helpful Resources, Products, Treatments and Therapies

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Tags

alzheimers, aromatherapy for alzheimers, dementia, plush bears for alzheimers, sootheze, sootheze pals

“Vanilla Bear” Image Courtesy of Sootheze

It’s no secret that stuffed animals can provide comfort and bring happiness to people living with Alzheimer’s. Well how about combining the soothing reassurance of a soft, plush bear or dog with the therapeutic benefits of aromatherapy?

The folks at Sootheze are doing just that with their line of Sootheze Pals. Plenty of research has shown the benefits of lavender and other herbal scents as far as helping reduce agitation in Alzheimer’s patients. The Sootheze plush animals are filled with a blend of nine herbs including lavender, rose hips, and cinnamon. Their “stuffing” consists primarily of all-natural flaxseed.

“Scruffy” Image Courtesy of Sootheze

Sootheze pals are available in a variety of animals including cats, dogs, bears, and bunnies. The company also offers a “collar” style that can be draped around the neck and shoulders. Adding to their versatility, the plush pets can be cooled in the freezer or heated in the microwave if desired. What a cozy addition to a cold winter day or night.

I realize some challenge this idea, supporting the notion that dolls and stuffed animals are demeaning to adults. However, I truly believe it depends on the individual and how far along they are in the disease. This goes hand in hand with the concept of joining our loved ones in their world when they can no longer make it back to ours. We have to stop and think, does the idea of a stuffed animal feel demeaning to our loved one, or are we just uncomfortable with it?

In terms of benefits, there are many others:

  • Providing a distraction or tool for redirection
  • Giving busy hands something soft to “pet”
  • Providing something to love, nurture, and take care of
  • Triggering happy memories of a beloved pet from long ago
  • Providing a focal point for interactions with caregivers and loved ones
  • Bringing an overall comfort and feeling of safety and wellbeing

Stock Image: Morguefile

For the last couple of weeks, one of the dear ladies I visit in memory care has told me she’s very afraid – a common occurrence in Alzheimer’s patients. I sit and hold her hand, which seems to help, but we know we can’t always be there.

This coming week, I’ll be taking the sweet Vanilla Bear I received from the nice folks at Sootheze, to his new home in the unit. My hope is that he will bring smiles, joy, and a sense of security to my friends when they’re sad, lonely, or just need a hug.

Visit the Sootheze website to learn more or shop for a Sootheze pal for your loved one.

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The Longest Day

21 Sunday Jun 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Behaviors, Caregivers, Facts & Figures

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alzheimers, Alzheimers advocacy, alzheimers awareness, alzheimers caregivers, alzheimers facts and figures, dementia, the longest day

sunriseJune 21st. Summer Solstice. The Longest Day…

Each year, the Alzheimer’s Association holds their Longest Day event on the summer solstice. It’s a sunrise-to-sunset event symbolizing the challenging journey faced by those living with Alzheimer’s and their caregivers.

Alzheimer’s doesn’t discriminate, and it certainly never takes a vacation. This brutal disease is hard at work day and night, 24x7x365, dishing out anxiety, agitation, and even terror for the person in its throes. Each day, it tosses out new challenges – memory impairment, yes, but how about some hallucinations and a bit of aggression and paranoia to keep things interesting.

For caregivers, Alzheimer’s has a healthy serving of depression, grief, stress, and uncertainty. Add to that financial worries, lack of sleep, and the emotional distress of watching a loved one slip away slowly. Respite? You must be kidding – who has the time or resources for respite?

This is life for 15.7 million family members and friends who provide care to people with Alzheimer’s and other dementias in the United States alone. That’s an estimated 17.9 billion hours of unpaid care valued at $217.7 billion.

What I’ve described here really only scratches the surface. Until you’ve lived it firsthand, you just can’t imagine the destruction Alzheimer’s leaves in its path.

For those who haven’t experienced it, I hope you never will. However, I must tell you the odds are not in your favor. Without a medical breakthrough, it is estimated 13.8 million Americans will be living with Alzheimer’s by the year 2050.

What will you do to make a difference today, tomorrow, and in the weeks and months to come?

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Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

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