Unafraid of aging

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On June 25, 2012, The New York Times published Karen Pennar’s Unafraid of Aging, highlighting Dr. Linda P. Fried. It was the most recent installment in their series “Profiles in Science.” 

An epidemiologist and geriatrician, Dr. Fried, dean of the Mailman School of Public Health at Columbia University, has focused her career on what she sees as the definitive challenge of the 21st century: embracing our transition to an “aging society”  in which, over the last century, our life expectancy has increased from fifty to eighty-plus years.

Pennar’s opening paragraph is the focus of today’s post:

“The signal public health achievement of the 20th century was the increase of the average human life span. Now, as that achievement helps raise the proportion of the aged around the world, what once seemed an unalloyed blessing is too often regarded as a burden — a financial burden, a health care burden, even a social burden.”

“It’s nuts,” said Dr. Linda P. Fried. “To assume defeat from what every one of us as individuals wants suggests we’re not asking the right questions.” She continues that findings from the science of aging should “reframe our understanding of the benefits and costs of aging.”

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Video

Dr. Linda P. Fried (Video by The New York Times06/25/2012)

Linda P. Fried: An interview with the geriatrician and dean of the Mailman School of Public Health at Columbia University on preventing frailty and the transition to an aging society

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So how did we, as a society, grow to be so ambivalent towards growing older? Why do so many people seem to fear it? And what can we do to turn things around?

Not just to ameliorate that gnawing unease, but to begin to uncover, highlight, and advance the myriad benefits we, as a society, can reap from the huge jump we’ve achieved in average lifespan.

How can we support older adults in maintaining involvement in their communities post-retirement? There is so much to be gained, both by our aging population and society as a whole, if we can find positive ways to encourage lifelong engagement.

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 Dr. Fried has focused her career on what she considers to be the challenge of the 21st century: embracing our transition to an “aging society”  in which, over the last century, our life expectancy has increased from fifty to eighty-plus.

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Talking to kids about dementia

 

Do you both have kids and care for someone with symptoms of dementia? Or maybe you’ve been diagnosed with dementia and want to talk to your family about it. How can you talk to children about things like Alzheimer’s Disease or other dementias?

My experience

When I was little, my grandfather began developing dementia (probably Alzheimer’s). Honestly, I was scared.  I was confused and felt completely helpless seeing this man I’d always looked up to getting…well, he was acting kind of strange.

It started out with little things: he’d trail off during a story or he’d forget where he put things. He didn’t recognize my brother when they ran into each other at church. Then he had to stop driving. Then he started forgetting common words like “fork” or “brush.” And it went on from there, for years…

Obviously something was up, but no one was really talking about it.

It scared me: as a kid and teenager I felt like my family only avoided discussing “really bad” things. We weren’t discussing this: it must be “bad.”

So I withdrew. I didn’t know it at the time, I didn’t mean to, but looking back I realize that’s what I did. Because I didn’t know what was going on, I found my grandfather’s behavior scary, unpredictable, and a little embarrassing.

I’m tearing up a bit as I write this; I still feel bad about it. I didn’t know any better, of course, but I hate to think I may have hurt his feelings. (Yes, even if he didn’t recognize who I was. Check out Emotions without memories for more on that…)

So I wanted to write about this topic, how to discuss dementia with kids, so that others may have a better understanding of what’s going on and what it means.

 

Yes, it’s time to move: moving in with family

We’ve talked in the past about deciding if and when to move. We also discussed why it’s so important to start this conversation early.

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“It’s really hard to make the call of when it’s time to move if you wait until things get out of hand.

Obviously the time for a big change lies somewhere between ‘sure, mom’s doing well’ and ‘I just don’t know what to do.’ But when? How do you know?”

“From what I’ve seen, it’s pretty common for people living with dementia and their families to overestimate what they’re able to do on their own….”

–Is it time to move?
(from MySimpleC, posted 12/19/2011 )

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In “Staying at home (for now, at least)” we talked about some of the many resources available to those who choose to remain at home. Sometimes this is called “aging in-place.”

But what if you have the conversation and decide that it’s time to move?

“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.

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.

Staying at home (for now, at least)

I was talking with my friend Liz a few months ago about her dad. He’s experiencing symptoms of dementia and was diagnosed with Lewy Body dementia. I found myself suggesting that her family discuss the possibility of a future move for her recently-diagnosed dad. This, even though he’s hopefully still a few years from requiring full-time care.

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Actively involving a person affected by dementia at an early stage lets her decide her future while she still can. Now is the time to have a conversation about what might happen and how she’d like you to handle it. 

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Why now? Well, there are a few reasons:

For one, actively involving the person affected by dementia at an early stage gives him buy-in for the final decision. It’s much easier to help someone move if you know it’s what he wanted.

Is it time to move?

Memory care. Assisted living. Nursing home. Continuing care retirement community. Skilled Nursing. Independent living. Residential care…the list goes on and on. Overwhelmed by endless options for eldercare communities, lots of us throw up our hands and avoid the topic until it’s absolutely necessary or just choose to muddle through on their own…even those who might be helped by residential care.

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Obviously the time for a big change lies somewhere between “sure, mom’s doing well” and “I just don’t know what to do!” But when? How do you know?

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Let’s look at how residential care decisions are made. I’d also like to learn about the decisions you’ve had to make early-on regarding future care options.

First off, I want to admit that, in the past, I’ve tended to support people living with symptoms of dementia living at home for as long as possible. To me, that meant someone would remain in her home until she had trouble with “Activities of Daily Life” (also sometimes called ADLs). That’s industry-speak for “things you do everyday”: getting dressed, using the restroom, eating, etc. Once she couldn’t take care of herself, then it’d be time to execute the back-up plan.

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.

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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.

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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!

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

Life story

Recording your life story can be a powerful experience. So can helping someone else record theirs.

For people facing progressive dementia, discussing and sharing life lessons can mean even more. As they record their hard-earned knowledge, people living with dementia also lay a kind of roadmap of the most significant and defining moments in their lives.

This is important because dementia often eats away at memories in a predictable pattern.

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Recording your life story can be a powerful experience. So can helping someone else record theirs.

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We talk about a “narrowing window” on childhood. That’s when someone with memory loss retains older memories but not more recent ones. A lot of times the most resilient memories that all of us make are in the times we define ourselves as individuals, usually as teens and younger adults. New experiences make the strongest memories, and you have more new experiences at younger ages age, too.