Feb 2 2012

“Welcome to caregiving”

…is a phrase that few people will ever hear. It doesn’t matter whether a degenerative dementia gradually creeps into your family or a sudden, massive trauma causes immediate changes; the result’s the same. You’re a caregiver now, and there’s no manual on how to do it.

Actually, that’s a big part of the inspiration behind this site: we want to provide a guide for what you can or should do if dementia enters the picture, something that can accompany you every step of the way.

The thing is, sometimes it feels like every lesson you learn about caregiving is from “The School of Hard Knocks.” Given, there is A TON of information about dementia available online. So much, in fact, that it can feel like information overload: there’s no single central resource providing support and frank information for people impacted by dementia.

So that’s what we want this site to be: your go-to resource for simple, actionable advice.

Caregivers, in particular, can quickly find themselves overwhelmed trying to find the best approaches to resolving issues and problems that arise with dementia. So that’s who we’re devoting this part of the site to: caregivers.

The experience of caregiving for someone living with symptoms of dementia is already pretty common, and it’s becoming even more so as Baby Boomers continue to age.

It’s currently estimated that, “the 72 million American baby boomers, born between 1946 and 1964, are turning 65 at the rate of roughly 10,000 a day…” (1); Alzheimer’s Disease (a leading cause of dementia) generally correlates with age. Of the 5.4 million Americans estimated to have Alzheimer’s Disease in 2011, 5.2 million of them are aged 65+.(2)

This means that, increasingly, spouses and siblings will require family care, not just parents. That’s a lot of new caregivers.

Continue reading →

Jan 19 2012

Orientation and disorientation

Disorientation is common to people living with symptoms of dementia.

Initially it can be subtle, like your wife forgetting where she put her purse (even though she never used to forget before).

But it can also show-up as someone misremembering the city she’s in, confusing your son with you, dressing for summer in the dead of winter, or even losing her sense of self.

Because it’s such a broad topic, this page is the home of the many future posts about disorientation.

No Medical Advice

Information and other content included in this Site is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a professional health care provider. You may not use or rely on any information contained on the Site for diagnosing a health or medical problem or disease. You should always consult a professional health care provider regarding any health or medical condition, prevention, or treatment. Do not delay or disregard seeking professional medical advice on account of something you have read on MySimpleC.com.

Do not consider content submitted by MySimpleC users as medical advice. The opinions expressed in MySimpleC user submissions are solely those of the user, who may or may not have medical or scientific training. Those opinions do not represent the opinions of SimpleC. In the event user submissions contain information about treatments or uses of drug products, be aware that such treatments and uses may not be approved by the U.S. Food and Drug Administration. SimpleC does not endorse any specific product, service, or treatment.

Jan 12 2012

Emotions without memory

“Mom can’t even remember I visited. What’s the point in going?”

I know that this won’t directly apply to everyone in our community, but I’d like to discuss it anyway. Feeling like your visits, conversations, and actions mean nothing to your loved one is a horrible experience. Thankfully, it’s not the whole story.

If you’d like some background information about progressive dementia, keep reading. If you’re pretty knowledgeable already then you can just skip the next 3 paragraphs.

The most common form of progressive dementia is Alzheimer’s Disease. If the dementia is caused by something else (Vascular, Lewy Bodies, etc.) then these “stages” may occur in a different order or may happen in a different order than they do with AD. That said, discussing the progression of AD is a good place to start.

There are 7 clinical stages of Alzheimer’s, ranging from Stage 1 (Normal) to Stage 7 (Most Impaired). The Fisher Center for Alzheimer’s Research Foundation does an excellent job defining the stages in “Clinical Stages of Alzheimer’s.”

Sometime around Stage 5 (Moderately Severe Alzheimer’s) or Stage 6 (Severe Alzheimer’s), cognitive deficits reach a point where close friends and family members get misidentified. Shortly before this, a lot of people stop being able to recall recent events, like if they ate lunch or took their medication. That’s where we’re jumping in.

Many caregivers have a really hard time with mid- to -later stages of dementia. Their loved one might forget who, exactly, they are. Short-term memory degrades, too. Caregiving can get tough(er) now because your mom’s no longer critical of your cooking; instead, she accuses you of not feeding her.

“Why do I bother? She doesn’t even remember I was there!”

Well…kind of.

As it turns out, even if a person forgets an event (a great visit, for example), the emotional impact lingers. No surprise to professional caregivers; many of them observed this their whole careers. But now there’s a study to support it. Continue reading →

Dec 16 2011

About us

Hi, welcome to MySimpleC.com.

My name’s Virginia Lynn Rudder (“Jennie Lynn” for short) and I work for a company, SimpleC, that’s using new technology to connect people living with dementia with their communities and to deliver personalized information, entertainment, and therapies set to an individual’s schedule. And largely succeeding, I might add.

But I’m not here to talk about that.

You can pop over to www.SimpleC.com if you’re interested in learning more, but we won’t be offended if you’re not. In fact, I’ll rarely even mention SimpleC. And if I ever do bring up a SimpleC product or service in the future I pledge to disclose our connection in the article, just as I’d disclose any other connection with a product or service I mention.

Because it’s not the goal of MySimpleC.com to sell you anything.

Seriously.

Over the years we’ve seen the same hard-won knowledge uncovered time and again in different environments, communities, homes. And, for the most part, that’s where it stops. There’s no effective way to share it.

The point of MySimpleC.com is to establish an online community that will connect professional caregivers with family caregivers, uniting people living with symptoms of dementia with high-level researchers with people just now learning that not all dementia is Alzheimer’s…and everyone in-between.

Why?

Because over the years we’ve seen the same hard-won knowledge uncovered time and again in different environments, communities, homes. And, for the most part, that’s where it stops. There’s no effective way to share it.

See, there are TONS of dementia resources out there but it’s hard to know which ones are worth reading. In fact, I just googled it: “dementia” brought up 10,200,000 results. “Alzheimer’s” netted 57,100,000. Sometimes there’s too much information and not enough guidance; this definitely seems like one of those times.

Just to be clear: I’m certainly not claiming to know all there is to know about progressive dementia. Sure, I’ve picked up a few helpful tips and earned some knowledge from The School of Hard Knocks…but I am acutely aware that it’s just scratching the surface.

We’ve seen a lot of dementia and how the same symptoms are approached in so many different ways, with such varying success. We hope to centralize that knowledge.

But in the process of compiling some of what we’ve learned (and wow do we have a lot to share in the upcoming weeks and months!) I realized that there’s a second component also missing in the digital dementia world: an open forum.

There needs to be a place that’s supportive yet honest, that’s neither woe-is-me nor persistently chipper, where you can ask hard questions and, even if they’re unanswerable, at least learn how others in your situation approached them. We need a place where it’s ok to be upset but not alright to be disrespectful. We need a place where caregivers whose loved ones have recently passed can connect with one-another and, if they’d like, share with those facing the battle they just fought.

I want this to be that place. We’re building this from the ground-up, together, and a lot of the initial discussions will take place in comments and through posts that you suggest.

Don’t worry, it’s not another person or entity demanding more of your time. Just…stop by when you can, and if you have a second, let me know what you think is good and what seems off or wrong.

Whether you’ve been diagnosed with a progressive dementia yourself (Alzheimer’s, Lewy Bodies, Parkinson’s, Mild Cognitive Impairment, vascular, …) or you’re the family or friend of someone who has been…it can be so overwhelming. I know it can. Not all bad, not by any stretch, but just such an unpredictable, continual challenge. And so isolating. Hopefully we’ll create a community that you can call your own.

So, we’re glad to have you; I hope you stay a while!

MySimpleC.com does not provide medical advice, diagnosis, or treatment.