Category Archives: Frontotemporal Degeneration (Pick’s)

6 Reasons You Should be Scared of Alzheimer’s & Other Dementias

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1. Alzheimer’s disease is the sixth leading cause of death in the United States.

2. More than 5 million Americans are living with the disease (I’m guessing this figure does not include Americans living with other types of dementias like FTD).

3. 1 in 3 seniors dies with Alzheimer’s or another dementia.

4. In 2012, 15.4 million caregivers provided more then 17.5 billion hours of unpaid care valued at $216 billion.

5. Nearly 15% of caregivers for people with Alzheimer’s or another dementia are long-distance caregivers.

6. In 2013, Alzheimer’s will cost the nation $203 billion. This number is expected to rise to $1.2 trillion by 2050.

If you haven’t been touched by dementia, you will be. It’s only a matter of time. If you have, then you know more needs to be done in terms of funding and research. WE NEED A CURE!

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

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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.

Life After My Demented Mom or A New Year: Time To Think On Death

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Clock Work / martinak15

Clock Work / martinak15

It’s another year.

And I am trying to be optimistic about 2013 — optimism is not my strong suit — mostly because, at this point (knock on wood…… the gods can be very cruel), the worst thing that could happen is that she finally passes away………………….

She must be close. She can’t walk. She can’t talk. She yells. When she’s not yelling, she sleeps.

I’ve been thinking more about death and dying. What will it be like when she sips her last breath? Will I feel her soul leave her body? Will she die in her sleep? If she dies in her sleep, will something wake me up? Will I feel her departure? Or, will her organs slowly shut down? When will I finally hear the words, “she’s actively dying?”

My lovely yoga teacher Lea suggested I read The Tibetan Book of the Dead. It’s not what you think. This isn’t some exercise in the macabre. I just want to be ready. To use Lea’s words, I want to “hold the space” when that time comes. I want to be with my mom when she’s “actively dying.” I want to hold the space. I want to help guide her on her journey to wherever she goes.

(She is a saint and, no doubt, will live in paradise)

I want to make her passing as peaceful as possible.

For her.

For me.

And then  my life will start over again.

Who am I without My Demented Mom?

There’s a lot to contemplate in 2013.

>>Flickr pic by martinak15

A Letter to Those Businesses And Professionals Who Make Dementia Even More Agonizing

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Dear hospice and nursing home (names of providers removed because I have enough problems, frankly),

Thank you for making late/end stage dementia even more awful by not coordinating your care of my mom, by failing to communicate with me, by making me feel like I’m making poor decisions on her behalf, by one day telling me, no, she can’t feel hunger (hospice) and the next day, telling me, well, she could feel hungry (home). Thank you hospice and nursing home for your conflicting care and for not informing your staff of little changes. Thank you nursing home for ignoring me month after month when I begged you to lower the dosage of her psych medications……………………. it was good to see that you finally took action after she fell flat on her face because she was so zonked out. Thank you for the confusion, thank you for making me feel like the bad guy. Thank you for making me re-tell the story of how we’ve been treated over the last several years by psychiatrists who would dope up my mom to keep her from screaming (yes, this is how we treat our demented elderly, folks). Thank you for reminding me that I am alone in this. Thank you for making it clear that this — dementia and long term care — is a business and a lucrative one at that (especially if you go the private pay-only route).

Thank you knocking me down yesterday……………….. because now I’m back up on my feet. Slightly bloodied (nice kick to the heart, by the way), and ready to get the shit kicked out of me yet again, because I am right and you are wrong.

I know my mother.

One more thing: Thank you for reminding me that part of my duty is to one day help government work toward and eventually craft death with dignity legislation………………… we are so quick to fight for life, but we lack the courage to face death and say ENOUGH.

To slowly die sitting in your own feces, unable to eat, speak, walk or do anything that makes us human, does not guarantee you a place in heaven. It simply serves as a reminder that we are still living in dark ages.

I expect to be burned at the stake for that.

Sincerely,

The daughter who asks too many questions, the daughter who fights and pushes so she can get her mom the right care, the daughter who has endured the stares and the whispers, the daughter who diagnosed her own mom when the doctors failed to, the daughter who has lost a lot ( A LOT) of sleep over the past 8 years, the daughter who visits her mom almost daily, the daughter who holds her mom’s hand, the daughter who makes the really hard decisions no one ever wants to make, the daughter who is more often than not dismissed by medical professionals, the daughter who has to fight so her mother can have just a drop of dignity.

End Days: Talking to My Mom

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Me & Mom

I don’t know how to talk to my mom. When I visit here, I usually sit there and hold her hand. I’ll say prayers, I’ll tell her not to be afraid, I’ll tell her I love her, but mostly, I just sit there. I don’t know what to say…………………… I can’t find the words. I want to tell her about my life, but it just feels absolutely ridiculous. I tried to read to her, but it feels contrived. If she can’t remember how to swallow her food, how could she possibly comprehend what I’m saying………………….. I am, by nature, a pessimist. The glass will always be mostly empty save a few drops. I don’t believe she can understand me. I don’t believe she “gets” my words — the words where I tell her about day, my struggles, my joys, my fears and frustrations.

It’s been so many years since I’ve actually talked to my mom……………….. before her disease consumed her brain.

Frankly, I think the grey matter that deciphers what comes out of my mouth into images and ideas has been turned to complete mush.

I love my mom. I miss my mom. But I can’t talk to her. I just don’t know how.

Interview: Suzette Armijo, The Advocate

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Photograph courtesy of Suzette Armijo

Let’s face it…………….. when it comes to Alzheimer’s disease or other dementias like Frontotemporal dementia (Pick’s disease), we are David and it is Goliath. So, don’t worry, you’re not alone if you feel absolutely helpless — or hopeless……………………. we all do, even my friend Suzette Armijo, who is her grandmother’s primary caregiver, has her moments………. but you would never think so if you met her. Suzette is a passionate advocate with the Alzheimer’s Association and she founded our YAAA! group (Young Adults for the Alzheimer’s Association), all of which keeps her incredibly busy. Suzette is also a mom and works full time………………… so, why does she do it all? What’s in it for her? I spoke to Suzette about advocacy work, why she does and why you should do it too…………….. Yes, you are David. But if you forgot how the story ends, well, I suggest you revisit the story.

How did you get involved with advocacy and the Alzheimer’s Association?
A previous employer of mine had sat on the public policy committee back in 2008, but couldn’t go because of time constraints. When I was presented with the option to take it over I was in love with the thought.

Why did you decide to become an advocate for the Alzheimer’s Association?
When the option came up for me to get involved through my employers position, I had already lost my Grandpa years ago to the disease. After watching him and my Mom, as his live-in caregiver bear through it for over 10 years, I was excited to be able to make a difference. I knew very little about public policy but felt any help I could give would be beneficial. I was enlightened by all the programs the chapter offered. I had no idea.

What does your role entail? 
Since 2008, I have remained as a Public Policy, now Advocacy committee, member. In 2010, after attending my first Alzheimer’s Advocacy Forum in Washington, D.C. I founded the 5th sub-committee of our kind in the nation focusing on young advocates. YAAA!, Young Advocates for the Alzheimer’s Association acts as a subcommittee of the Desert Southwest Chapter Advocacy Committee, and is open to adults aged 18-39 who are interested in furthering awareness of dementia-related issues and Alzheimer’s advocacy efforts.  I am also an Ambassador appointed to Senator John McCain by the National Alzheimer’s Association.  Ambassadors are grassroots volunteers selected to serve as the main point of in-district contact for a targeted member of Congress.  We play a critical role in helping the Alzheimer’s Association meet its federal legislative goals.  We directly with National and chapter staff to implement federal advocacy activities at the community level.

Why is advocacy work so important when it comes to Alzheimer’s disease and other dementias?
Advocacy work is important when it comes to the fight against Alzheimer’s disease and other dementias for numerous reasons. Firstly, most of the people affected by these diseases cannot speak for themselves. In many cases the family members are the primary caretakers and bear a huge burden. Most of these people need total care.  They cannot be left alone at all.  This means the people that are most affected, physically, emotionally and financially are too busy just surviving to get involved with advocacy. There are ZERO survivors of Alzheimer’s disease.  There are no poster children telling their amazing story of hope and strength.  Alzheimer’s disease is a progressive brain disease.  It takes away our ability to take care of ourselves. Leaving our family and friends completely responsible with no hope, as of yet, for medications to even slow, let alone cure the impacts of this disease.

From a grassroots perspective, what can people do to make a difference?
From the simplest task of signing up through http://www.alz.org/join_the_cause_advocacy.asp to get advocacy action alerts via email all the way to more personal, direct tasks such as scheduling in-district visits with your congressman and/or his staff to discuss your concerns and what you expect from them as a resident/voter. The action alerts are great. When you have time to open the email in the comfort of your own home you will be directed to a simple form asking for your basic information and it sends it to your appointed Representative.  The more direct approach is more meaningful for  obvious reasons. They see a face. They hear your story.  They see a voter, in their district, reaching out and saying they need their support.

How do you balance it all? What advice would you give someone who is trying to balance caregiving and advocacy?
Balance… I don’t think there is a true balance with Alzheimer’s disease and other forms of dementia when you are the caregiver. The struggles are ever changing and the demands come up when you least expect it. I think it is up to each of us, as a caregiver, to know our limits. To know what we need to stay sane and be able to perform in our many rolls in this life. For me, being a single mom, being responsible for my own Grandma with end-stage Alzheimer’s disease, having a full time career and personal business, it’s the craziness that keeps me going. It’s knowing that this life wouldn’t be this way if I couldn’t handle it. For me the sub-committee I founded, YAAA!, and my volunteer work keeps my head afloat. I know that I am doing all I can do.  For my Grandpa and Grandma it’s too late. But I know my work will pay off for our future. Knowing that is enough for me to stay active and involved in the fight against Alzheimer’s and other dementias.

Death, Compassion and Humor. Not In That Order

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Hi Kathy, we’ve got the two letters from your mom’s doctors, so you can come in and sign the DNR.

Oh, great. OK. What time? Noon? OK, I look forward to it. I mean, I’m not looking forward to it. Um, you know what I mean.

And that is how I made the appointment to sign my mother’s death warrant. Over the past eight years, I have had to make many incredibly difficult decisions on behalf of my mother……………………. some are more difficult than others, some can leave you curled up in a ball in the middle of an ER. Signing the DNR (Do Not Resuscitate) was an easy decision to make, by easy I mean, I would remain upright as opposed to curled up in a ball crying……………………….. of course, my mom already had a legal document stating that she did not want extreme measures to be taken to prolong her life………………… what she did not have was an actual DNR, an orange piece of paper that the paramedics look for before going above and beyond to save a life. It took me a couple of months to actually get this taken care of…………….. yes, I knew what to do, I knew what needed to be done, but getting it taken care of………..well…………….asking her doctor to write a letter stating that she has a terminal disease with no chance of ever recovering can kind of fuck you up………………. psychologically speaking, of course.

So, I made an appointment for myself instead.

Great to see you…. you look good. What’s can I help you with?

Well, you know I still have that weird pain on my right side; I’m still constipated, but that’s probably stress; and I need you to write and sign a letter stating that mom’s dementia is terminal and stuff. It’s for the DNR.

Sitting in his office, making my request……………. it just struck me as funny………….I don’t know, the whole experience was sort of Seinfeldesque in nature.

Finding the humor in my suffering, our suffering, is, I suppose, a survival skill……………. it’s what helps me cope with my walking grief………….I actively try to seek out the funny. I have to; it’s what keeps me sane, because to experience this kind of sorrow day-in and day-out, with no relief in site, no source of comfort, no regular family support, no hope that she’ll one day be cured, well, that dark, depressing vortex can appear inviting after awhile…………………… because face it, getting out of bed to watch death dance around my mother as she languishes in this life is neither healthy, nor is it how I like to start out my mornings………………..

But I do.

You do.

It’s what we do because it is the right thing to do.

Even though we’re all on the verge of folding our hands.

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Hi Kathy, good to see you, come on in…………………. I walked into her office and sat down, ready to sign the DNR. It didn’t feel like a big deal, after all, I’ve signed plenty of documents absolving the medical community of all responsibility should they accidentally kill my mom……………………….. it was just another piece of paper. Until she started reading the paper and telling me what would happen if (and when) something happens to my mom. There will be no cardiac compression, no endotracheal intubation, no artificial ventilation, no life support drugs or emergency medical procedures……………… the words sit in your gut for a while.

She handed me a tissue.

I signed the document.

She signed the document.

The witness signed the document. She touched my shoulder and left the room.

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I am convinced that we confuse compassion for pity……………… compassion is something else; compassion takes time…………. pity, however, is much easier to dole out. Compassion is a rare quality which few possess and I now understand why. People don’t want to talk about this disease; they don’t want to witness it; they don’t want to walk in your shoes; and they don’t want to take the time…………… this is compassion as I know it: A former colleague sent me an e-mail after learning that my mom was being housed at the psychiatric unit last February. Although he had never met my mother, nor did we keep in contact after I left my job, he offered to sit with my mother. He said, “I have an extra set of hands and if it is in my power, I would like to help.”

That is compassion.

………………..