My Demented Mom

5 million Americans suffer from Dementia. My mom is one of them. A site for young adult caregivers struggling and coping with "the long goodbye."

Screen Shot 2013-02-11 at 8.42.56 PMAs I write this blog, I’m trolling Twitter. Just seeing what’s out there in the way of caregiver support, resources, news, etc, etc, etc. Turns out, there’s a lot shaking in our world. A quick scroll on my feed shows Tweets about everything from incontinence and nursing homes to tips on how to be an organized caregiver (“organized” and “caregiver:” two words that don’t really go together). Lots of information. Some of it useful; most of it scary.

(No, you don’t and won’t have enough money to grow old).

While you’ll absolutely find information about caregiving or being a caregiver, much of what’s out there is geared towards Baby Boomers… because let’s face it, Baby Boomers are a hot commodity right now.

Why? They’re rich and they’re going to get sick.

As for the under 40 set, well, we’re sort of preoccupied with paying off our student loans, buying our first home (or drowning in it, as the case may be), finding our dream job, finding Mr. or Ms. Right, making babies, having babies and/or getting divorced.

You know what else we’re doing? We’re NOT saving. Saving for the day we develop a long term illness like dementia.

That said, we’re about as undesirable as they come. And you should be pissed off about that. After all, we’re not safe from Alzheimer’s disease or other dementias… there are no cures, no means of prevention. NADA.

Still not convinced? Just Google, “Alzheimer’s and 2050.”

This is the quiet before the Tsunami.

Here are a few things you should know:

  • Alzheimer’s disease is just one of several types of dementias (my mom has frontotemporal dementia).
  • HIV/AIDS was once considered a death sentence; today it’s a “manageable disease.” That’s because a lot of money was thrown into the research bucket and antiviral drugs were developed.
  • Medicare will NOT pay for nursing home/assisted living care.
  • You can’t afford to grow old. According to Genworth’s 2012 Cost of Care Survey, which I found in an online article on Next Avenue,  “one year of long-term care ranges from $39,600 for an assisted living facility to $81,030 for a private room in a nursing home.” (source: Next Avenue; Genworth)
  • Alzheimer’s disease is the sixth-leading cause of death in the U.S. and the only cause of death among the top 10 in the United States that cannot be prevented, cured or even slowed. (source: 2012 Alzheimer’s Association, Facts & Figures report)
  • Have you ever changed an adult’s diaper? More than 15 million Americans provide unpaid care valued at $210 billion for persons with Alzheimer’s and other dementias.  (source: 2012 Alzheimer’s Association, Facts & Figures report)
  • In 2012, the direct costs of caring for those with Alzheimer’s or other dementias to American society will total an estimated $200 billion, including $140 billion in costs to Medicare and Medicaid. Unless something is done, the care costs of Alzheimer’s and other dementias will soar from $200 billion to a projected $1.1 trillion (in today’s dollars) by 2050.  (source: 2012 Alzheimer’s Association, Facts & Figures report)

What can you (reasonably) do?

Here’s the myth: Alzheimer’s disease and other dementias are diseases old people get. Here’s the truth: People in their 30s, 40s and 50s are developing dementia. Here’s the other truth: This disease will touch your life one day, if it hasn’t already.

Dementia is not an old person’s disease.

7 thoughts on “We’re Young, We’re Poor, & We Need a Cure. Our Lives Depend on It

  1. bunkodeb says:

    It sacres the Bejebers out of me!
    Great post!

  2. First I love the article and you make some great points, but my old eyes are not liking your new format. It’s hard to read, not enough contrast. If you just want young people to read this then you are probably fine, but for us baby boomers it’s not friendly…LOL

    Second, if you are interested in sharing your voice on Alzheimer’s Speaks Radio let me know…or we could do a webinar too. http://www.AlzheimersSpeaks.com

    Keep up the good work in making a difference in dementia care.
    Lori

  3. Hi! Good to hear from you. Thanks for the feedback… it’s funny you mention that, I’ve been playing with the fonts all evening, trying to find something that folks can read! My last two fonts were, um, even hard for me to read (but then I though, gosh, they’re so modern!). I hope this newer font works; it’s also a browser issue. Chrome is not displaying the fonts as well as others.

    And yes, I’m always happy to help out by participating on the radio show or webinar!

    Keep me posted!

  4. Mariarose says:

    One month of room/board/care at an assisted living residence for my mother, costs MORE than my parents first house. We all find it hard to save for a “healthy” retirement. The cost of Alzheimer’s and dementia is staggering – at all levels.

  5. Sarah King says:

    YES! Thank you for this eye-opening call-to-action. My Mom’s illness at a relatively young age (she passed away with Parkinson’s disease at only 65) taught me that life is short AND that getting sick is EXPENSIVE. I don’t think most people realize the high cost of end-of-life care, and that most of it is not covered. We must advocate and we must plan–you cannot assume that illness will not happen to you. Great tips here on how to advocate. Thanks again for this post.

  6. Judy Dendy says:

    You are so right about the cost. My parents saved and even had long term care insurance, but the cost is staggering, and you wonder even with all this past care to provide for their old age, will Mom outlive her Money, and if she does, who will pay, I sure can’t afford it. My house payment $1,060 without insurance and taxes, Mom’s apartment at nursing home without non essentials $6,700 a month. I don’t even make that much a month.

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