Who Am I Now That She’s Gone?

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There are a lot of similarities between a small child and someone living with dementia. Specifically, frontotemporal degeneration. I remember so many of my mom’s odd quirks. Once, she poured her Coke into her glass of red wine. She drank it, much to my dismay. My toddler did something similar recently. She poured water into a bowl of hard boiled eggs then she mixed it around and ate it. I immediately thought of my mom. I can’t remember if I laughed or felt sad. Her disease caused her to mentally and emotionally regress… a real life Benjamin Button. I always thought having a young child would be, in some ways, easier than having a mother with dementia. In some ways it is: there’s so much more joy, more laughter, fewer tears. My toddler is also considerably lighter than my mother, and when she is upset or angry, I can actually pick her up and hold her… or relocate her. Something I wasn’t exactly able to do with mom (remember those times with her priest?). Lately though, I have been missing my mom; missing something about her… I can’t quite put my finger on the what. Maybe just her presence. Her scent…. I don’t know. I lost my mom, really, when I was in my 20s… I became the parent and she became the child. Before that, I was living in another city thousands of miles from home. I feel guilty about that. Maybe if I had stayed in Arizona, maybe I would have had more of those moments… precious moments that would have stuck with me, helped shape me into someone better that who I became. Instead, my memories are blurry… sometimes I’ll hear something or get a whiff of something and it’ll transport me to a particular time or place… but they’re few and far between. And sometimes I’ll dream about her. Those are the sweetest nights. I wish she came to me more often.

And then there are times when I can’t feel her at all. The loneliness is palpable.

I thought I would be relieved when my mom died. I was in most ways. I was glad she was no longer suffering in a broken down body. I was glad to put that chapter behind me and focus on my baby. I thought the hurt would fade away, too. Time does some neat tricks when it wants to, and frankly, I lost my mom a long time ago. But what I’m learning is that this kind of loss sticks with you. I know it has changed me. And I don’t know if it’s for the better. The final years were incredibly brutal and how one recovers from such a trauma is beyond me. To wallow in it would be selfish and indulgent, though there are days where I wish I could stew in it. So I try to keep going. I hate when things become stagnant. When that happens I desperately seek change. Is this blog, is the work that I do to share our story stagnant? I mean what else is there to say? Is it — this — the anchor holding me down or the means to truly let go. I have no idea what any of it means or if it means anything at all. I guess the truth is I don’t know who I am anymore now that she is gone.

That’s a little lonely, too.

 

A New Chapter… Life After Death & Dementia

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I don’t really know what to say at this point. The thing is, I still have a lot to say. I want to tell our story. I have to. I need to keep going because, well, what else am I going to do? Sit back quietly and wait for this thing to attack my brain? Um, no. So I’ll just ramble and see what comes out. My mother has been gone more than five month now. She died. From Frontotemporal Degeneration (Pick’s disease). He death certificate says the cause of death was Alzheimer’s Disease, but that’s wrong. I don’t know why I haven’t tried to get that changed. Actually, I do know: I’m too tired right now. I’m also angry. Angry at the doctors who we trusted (because that’s what you’re supposed to do)… those “experts” who were supposed to help my mom, treat her with compassion… but more often than not, they harmed her with their debilitating psychotropic drugs. She was a number. Another patient. And they didn’t really care because they didn’t have to — especially those quacks at the geriatric pysch wards (like the doctor who wanted to treat my mother w/ shock therapy because he thought she was bipolar… at 72). For the most part, and with the exception of a small few, their job is stabilize and discharge — in 30 days or less (if possible).

I’m also relieved. Thankful FTD is no longer gnawing away at her brain; torturing her. By the end, my mom’s once bright smile looked more like she was grimacing in pain — her teeth were yellowed and crooked… she was grinding her teeth. It was heartbreaking, yet impossible to get her to unclench her jaw.

And somedays I’m anxious. What am I going to do now? I HAVE TO TELL HER STORY TO EVERYONE AND ANYONE WHO WILL LISTEN — MARIA SHRIVER, JULIANNE MOORE, SETH ROGEN — LISTEN TO ME!!!!!!!!!!!!!!!! HER LIFE MATTERS AND I WANT THE WORLD TO PAY ATTENTION!!!!!!!!!! HER SUFFERING WAS NOT FOR NOTHING! LISTEN TO ME!

Hmmm. Maybe that’s anger, coupled with desperation.

I’m not really sure how the stages of grief work when it comes to dementia. And frankly, I don’t care to know. I’ve lost my mother twice: once when she was alive. I grieved then. Then again in August. The only difference is now I can’t hold her hand. I’m not sure if this is grief, per se…. I don’t miss her, but I miss visiting her. I miss visiting the other residents. And I miss those little things about her that I lost a long time ago. Like her smile. Even when she was sick, she would smile and call me, “Mijita!”

She had forgotten my name.

I’m not a soul searcher by nature. I know people who feel deeply and to me, it’s an unnecessary indulgence. Yes, I overthink things, but to find deep, profound meaning in her death (or her life), well, what does that even mean, really? Seriously?! I haven’t written a word since my last post announcing her passing. I don’t talk about her very much. And I’ve cried maybe a handful of times since she left me.

More than anything else, I’m tired. Really tired. A little less so these days since I’ve forced myself to read a little more instead of drowning any sadness in episodes of Modern Family or Mob Wives. Baby steps. Project Runway All Stars is on. 

Here’s the problem, truly, when someone is lost to a disease like FTD or any other type of dementia… the burden falls on you, the caregiver; and as that person tumbles down the rabbit hole of dementia, they become utterly and completely helpless. Now it’s up to you to pull up your big girl (or boy) underpants and make some really hard choices. Sometimes you have to choose between “mostly shitty” and “shitty.” And when they finally pass away, you can’t help but think about what you could have done differently (after all, don’t you deserve a happy ending, too?). I sometimes drown in the wouldas, the couldas and the shouldas. And please don’t say, “think about what she was like before she became sick.” You can’t imagine how difficult a task that is to accomplish. She had been sick for a very, very long time… long enough where I have forgotten those good times. But I am trying. I’ve been trying to commune with those old memories in recent weeks. It may sound nuts, but intense physical activity (i.e. spinning) whereby your brain feels like its  on the verge of imploding usually does the trick. Brief moments flash by… poofs of color… and then they’re gone. Though sometimes all it takes is a particular sunrise or a scent. Then, something is triggered.

And it’s a beautiful thing when it happens.

Want To Help Someone Who Is an Alzheimer’s Caregiver? Here Are Some Tips

Dealing with my mom was especially difficult, mostly because of the lack of help. Unfortunately, due to of her type of dementia — frontotemporal dementia — it was almost impossible to ask for help because of her behaviors. In hindsight, I suppose, there were small things that could have been done to help lighten the load. The thing is, when you’re in the thick of this kind of caregiving, you are the one who is often sidelined……………………………… you become a prisoner to your loved one and your home. You don’t have time to reach out, check in and let friends and family know that you’re OK.

Caregiving is about survival. It’s about getting through the day (and, sometimes, the night). It’s exhausting work. And here’s the proof: According to the Alzheimer’s Association, in 2013, 15.5 million caregivers provided more than 17 billion hours of unpaid care valued at $220 BILLION.

So if you know someone who is caring for someone with Alzheimer’s disease or another dementia (like FTD), do something. They probably could use a helping hand from time to time, but don’t expect them to call you.

If you are, then you’re kind of being a jerk because it’s not about you. At all.

I found this article by Marie Marley on the Huffington Post blog. It speaks to this issue, and gives you — the friends and family of that person caring for someone with Alzheimer’s disease or other dementia — ideas as to how you can help.

By Marie Marley
Originally appeared on the Huffington Post blog

Nancy is the primary caregiver for her husband, George, who has mid-stage Alzheimer’s. It’s exhausting work. She’s on call 24/7 and often feels overwhelmed by her responsibilities, which seem never ending. After four years of this, she’s burned out. She doesn’t have any time to herself and is neglecting her own health. Furthermore, her heart is broken as she watches George’s memory and functioning steadily decline a little at a time.

Sally — Nancy’s best friend — stands by and watches as Nancy becomes more worn out by the day. Sally would like to help but she doesn’t have any idea what to do. Every time she asks Nancy how she can help, Nancy just says, “There’s really nothing you can do.” Sally takes this at face value and after a while stops asking.

According to the Alzheimer’s Association, 15.5 million people are serving as caregivers to people with Alzheimer’s, providing over 17.7 billion hours of unpaid care every year. Carrying out their duties has a negative effect on their physical and mental health. (See my previous article, Alzheimer’s Caregiving May Be Wrecking Your Health, for more details about the impact of caregiving — especially taking care of a loved one with Alzheimer’s.)

These people desperately need all the assistance they can get. It will help them preserve their own well-being. It will also help them improve their caregiving since no one can be a good caregiver if they’re burned out all the time.

With so many people being Alzheimer’s caregivers, chances are good that you know one – either a friend, relative or neighbor. And chances are that you’d like to help, but like Sally, you simply don’t know how.

Many Alzheimer’s caregivers are deeply dedicated and feel like they should be able to “do it all,” and they are often so burned out they can’t even imagine how anyone could assist them. In addition, they may be reluctant to ask for help because they don’t want to impose upon people and because they’re afraid people will refuse to help.

So if you really want to be of service, instead of just saying, “Let me know if there’s anything I can do,” you may need to figure it out yourself and volunteer for a specific task(s).

Here are but a few things you can select from:

1. Help clean the house
2. Take over extras from a meal you’ve cooked for your family
3. Do the laundry
4. Do the grocery shopping
5. Pick up medicines from the pharmacy
6. Volunteer to run other specific errands
7. Mow the lawn and/or do other yard work (assuming the person doesn’t use a lawn service)
8. Visit and just let the person talk about feelings 
9. Drive the person with Alzheimer’s to their daycare center (if they’re going to daycare)
10. Take the person with Alzheimer’s to the doctor
11. Take the person with Alzheimer’s out for a drive
12. Look after the person with Alzheimer’s in your home for a few hours

With a little thought you can certainly come up with additional tasks. Items 9 – 12 are especially important because they will give caregivers some badly-needed time alone to rest and recharge their batteries. But whatever you select, try to be specific and try to volunteer to do it on an ongoing basis. Make sure you will be able to continue your help before you make a commitment.

I can tell you from my personal experience as an Alzheimer’s caregiver for seven years that anything you do will indeed be most helpful. I had no assistance and furthermore, I didn’t even ask my friends to do anything for me. I only wish I’d read an article like this one back when I was a caregiver. It could have made a big difference in my daily life, and would have significantly reduced my stress. It also could have prevented my health from deteriorating as much as it did.

So the next time you see someone you care about serving as an Alzheimer’s caregiver, consult this list, or come up with a task(s) on your own, and simply announce to the person that you are going to do it and tell them when you’re going to start. He or she will probably be greatly appreciative, even if initially hesitant to ask for your support.

Can anyone think of other specific things that could be done to help an Alzheimer’s caregiver?

Marie Marley is the award-winning author of Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Her website, ComeBackEarlyToday.com, contains a wealth of information for Alzheimer’s Caregivers.

Leading Age & Great Minds Award

 

Family Caregiver Award Winner – Kathy Ritchie (Primary Caregiver for her mother, a resident of Beatitudes Campus, Phoenix, AZ)The Exceptional Friend or Family Caregiver Award recognizes an individual who has demonstrated outstanding compassion and abilities in one-on-one caregiving for a friend or family member living with dementia.

Unfortunately, I was unable to attend the event in person, but I am tremendously honored to be recognized by Leading Age and the Beatitudes Campus. I am hunting down the video and will post to the blog as soon as I can.

In the meantime, here is my acceptance speech:

This award is a tremendous honor, and I’m incredibly humbled to be on this stage tonight. What I did for my mother, I did, because, at the end of the day, my actions had to sit well with my soul. Simple as that. And that’s why I left one life and started another when I moved home to Arizona in 2009. My mother needed an advocate, and I was determined to do everything in my power to see that she received the best care possible. It certainly wasn’t an easy road, and to this day, I live with the woulda’s, the shoulda’s and the coulda’s… as most caregivers can surely attest, the “what if’s” can keep you up at night! Unfortunately her dementia was unforgiving — my mother spent time at two psychiatric facilities where she was given psychotropic drugs to curb her behaviors, which were the result of her type of dementia; we were asked to leave three assisted living facilities and one adult day care center; and we’ve endured rejections from assisted living facilities… her behaviors meant she wasn’t a good fit.

The thing is, my story is not unique. There are so many families struggling to cope with their loved one’s dementia, and so many of those families lack the financial, emotional and even physical resources needed to adequately care for them. This is the quiet before the tsunami. The number of Americans who develop Alzheimer’s disease is expected to increase significantly — and that’s just one type of dementia. Right now, there is no cure, no way to prevent or slow the onset of Alzheimer’s disease or any other dementia, for that matter. That’s why I put our story out there. I want the world to wake up and realize we need help; we need a cure.

Over three-thousand days have passed since I noticed something was wrong with my mother. Today, she’s nearing the end of this heartbreaking journey. And while there is a very big part of me that wants to close this chapter for good, I can’t. I have a 2 month old daughter and I am determined to continue to be a part of the solution. I hope you’ll join me to raise awareness and to serve as an advocate for those who need it most.

 

Huffington Post Interview

huffpostKathy Ritchie’s mother is living, yet she is mourned for her loss of self. She suffers from dementia.

Ritchie, founder of the blog My Demented Mom, visited HuffPost Live to discuss the disease affecting five million Americans and her personal struggles with her own mom’s diagnosis.

“It is painful, it is a trauma,” she told host Nancy Redd of the crippling disorder. “I have been grieving my mother for a very, very long time.” Ritchie recalled seeing her mother in terrible states, heavily medicated with antipsychotic drugs. The woman was not the mother she knew, and not the grandmother she wanted her newborn daughter to remember. “It’s hard to talk about,” she said. “She was just a really good person.”

Ritchie’s blog opens the discussion to others faced with similar caregiving demands, but it also helps her cope and push forward, knowing her daughter will one day read about her efforts. “The blog captures so many moments and I want her to know the kind of woman her grandma was and what I did for my mother,” she said.

To watch the full segment, click Here.

Don’t Stop Asking About My Mom

I have a message for my mother’s friends, family and acquaintances: She’s still alive.

My mother’s heart still beats. Though she might not be able to talk to you, walk with you, or share a laugh with you, she’s still here. She’s still alive.

If you spend any amount of time with her, you’ll quickly realize she’s here…………. and like most living, breathing human beings, she craves touch. Hold her hand. I do. Yes, it’s hard, especially when she yells out; I hate watching my mother’s face contort in such a way that it looks like she’s in pain. I know she can’t be……… but maybe, she knows. Maybe she knows she’s trapped inside a body that won’t follow her commands.

It’s a muggy Sunday afternoon when I visit my mom……….. it’s just after noon and she’s eating (or rather drinking) her lunch. The caregiver asks if I want to spoon-feed her the rest of her liquified meat.

Next time someone talks to you about the preservation of human life, try thinking about the thing that really matters at the end of the day: quality of life. Or how about this: DIGNITY.

Midway through her meal of watery green goop and off-white, milky muck, she chokes and coughs. Brownish goo comes flying out of her mouth and splatters all over my green shirt.

I start to feel angry……. not at her, rather at those who have forgotten her. Her family and friends………….

My mother did so much for so many people………. When the church would call, she would pray, she would volunteer to give communion to the sick, she would give of herself. When her family called with a crisis, she would pray, she would provide the means for them to literally have a better life…………. And now, she’s alone.

No one asks for her, really…………… On her birthday, there were no calls, no e-mails. Nothing. It was another day for the rest of the world.

After lunch, I take her back to her room. Her fingernails are too long………. I ask the nurse for a pair of clippers and start trimming. It isn’t long before my back starts to ache and my abdomen cramps just a little………. I’m hunched over, just inches away from her hand. Fingernails fly up and flick my face.

Her toenails are another challenge. They’re twisted……. they overlap and are stiff from lack of use………

I need to remember to bring nail polish remover next time. The gold paint I swiped over her toenails last spring still remains……………… was it last spring; has it been that long? Am I the only person who paints her nails? UGH.

My body twists and contorts so I can find just the right angle to trim her thick toenails. Mom is sound asleep. Good. I think she’d be yelling if she where awake.

She inhabits a place somewhere between life and death.

It’s a grotesque place.

By the time I leave, I have a headache and my blood is boiling. I feel nothing but hate and resentment. I know I should let it go…………………. After all, what’s that saying? Something about hatred poisons and hurts me, not them?

I don’t care. Shut up. Stupid quote. Nonsense. This is unforgivable. Where’s a vengeful God when you need one? Fire. Brimstone. Come on!

After a few days of stewing, the anger eventually subsides……………. is it anger? Maybe it’s hurt. Resentment? Rage? Jealously? Contempt? All of the above. I try to cut myself some slack……………… yes, I wish I could be more serene about her illness………….. but then, I think back to those darker days, and the anger bubbles up again. STOP.

I wonder if there is a heaven………………or a hell. I wonder what God will decide.

I wonder if He stopped asking about my mom, too.

 

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

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

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

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

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

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

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

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.

******************************

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.

*****************************

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.

………………..

2920 Days and Counting……. Or How Time Contorts Your Soul

When it comes to dementia and demented events, there are very few things that actually disturb me anymore…………….. or, I should say, disturb me for extended periods of time. After all, I’ve been dealing with my mother’s decline for eight years or 2,920 days…………………………….. that’s a long time to get used to the grotesque. And everything about dementia is grotesque. I’ve seen things, heard things, smelled things that no child should ever have to experience……………… and no matter how old you are, those wounds, that trauma that bombards your nervous system, your psyche, never goes away…………………… it may get dull with time, but it never goes away for good.

I remember when my mom was taken to the ER before her month-long stint at the geriatric psych unit, and they had to test her for a UTI by inserting something into her urethra…………… but they couldn’t give her anything for the discomfort and I couldn’t explain what was about to happen because she no longer understood my words. The nurses made me leave the room; I could hear her screaming from down the hallway…………………… I think I almost threw-up, crying, feelings of guilt, regret, contempt, anger, fear consuming me alive……………… and then they were done, she was OK; still, those are the scars that never go away; but you have to endure, you have to get through it, you have to put it behind you, you have to prepare for the next trauma because it’s how you survive……………….. it’s the only way you survive……………… it’s the only way to keep yourself from cracking.

Thankfully (although I never hold my breath…….. glass half-empty, remember?), we’ve found some peace lately……………… her new home has had a calming effect on both of us…….. of course, as her disease progresses, her ability to figure out who I am comes and goes…………………. most days, she knows me or at least knows my face…………………. she smiles, she yells, and, in this case, that’s a good thing because it means she knows I’m someone important in her life………………. I hope she knows I am her daughter. I like to think she does.

But we’ve had a few days where she just stares at me.

I accept the fact that a day will come when she will no longer react to my presence. I accept that and I don’t think it will crush me………………. that’s how this disease works. I can’t change that. I can’t stop it.

I have to accept it and move on. I think I have.

I have prepared myself for that………….. truly.

I had not, however, prepared myself for what happened the other day.

I went to visit my mom one morning and she was especially alert……………. these are great days because they are so infrequent. We walked, sat, “talked,” held hands, hung out……………….. it was finally time for me to leave, so I took her to one of the rooms so she could cool off and watch TV. She walked in, turned around and saw me walking away towards the nurses station……………..

She started to follow me.

This is not an especially unusual event………………. she’s tried to follow me before; tries to catch-up………………. a heartbreaking act in itself……….. but most times, she either goes in another direction or is redirected.

As I walked out of the main building, towards my car, I looked inside………………… bars dividing us………………. she stared at me. I stopped. She stopped. Eyes locked………..eyes-wide open. Was that in my head? Does she see me? Does she know? Has the cloud lifted? Is she thinking, “Where am I? Why am I here? Why is my daughter out there? Why is she leaving me here?”

I got into my car and drove to Starbucks.

Because copious amounts of coffee help me unwind.

>>Photo by Meredith Farmer

Good News? US Senators Seek to Cut Misuse of Antipsychotics

This is a controversial matter……. I don’t even know what to say about it……….. my mother is on antipsychotics that were given to her by a trained psychiatrist to “stabilize” her during her month-long stay at a geriatric psych unit. They do this……….. stabilizing…………… because many facilities (even the “memory care” units) won’t accept behavioral patients unless they are medicated……………… it’s a lose-lose situation, but it’s certainly not uncommon………………. And yes, we all know about “black box” warnings.

So what do you do? For those of us coping with a behavioral parent, our options are limited, and often the only course of action is Seroquel, Lithium, Depakote, Zyprexa, two or more of the above, and the list goes on………………………

Is it a disturbing practice? Yes.

Is there a choice? In our case, no. We had no choice.

Fortunately, Washington, with their first-rate, life-long health care, is on the case……………….

Inside voice…………… I wonder if the esteemed senators below would be willing to take in behavioral dementia patient who has been asked to leave yet another memory care unit or assisted living facility?

So, what do you think about antipsychotics?

U.S. Senators Herb Kohl, D-Wis., Chuck Grassley, R-Iowa, and Richard Blumenthal, D-Conn., today filed an amendment seeking to combat the costly, widespread and inappropriate use of antipsychotics in nursing homes.

“The overuse of antipsychotics is a common and well-recognized problem that puts frail elders at risk and costs taxpayers hundreds of millions of dollars each year,” Kohl said. “We need a new policy that helps to ensure that these drugs are being appropriately used to treat people with mental illnesses, not used to curb behavioral symptoms of Alzheimer’s or other dementias.”

“This amendment responds to alarming reports about the use of antipsychotic drugs with nursing home residents,” Grassley said. “It’s intended to empower these residents and their loved ones in the decisions about the drugs prescribed for them.”

“This measure is responsive to mounting evidence that antipsychotics are being misused and overused in the nursing homes we trust to care for our loved ones,” Blumenthal said. “The amendment will do what is necessary to curb this deeply concerning practice, putting the power to make key health care decisions back into the appropriate hands and eliminating unnecessary costs to taxpayers.”

The amendment to S. 3187, the Food and Drug Administration Safety and Innovation Act would require the Health and Human Services Secretary to issue standardized protocols for obtaining informed consent, or authorization from patients or their designated health care agents or legal representatives, acknowledging possible risks and side effects associated with the antipsychotic, as well as alternative treatment options, before administering the drug for off-label use. While the Food and Drug Administration (FDA) has approved antipsychotic drugs to treat an array of psychiatric conditions, numerous studies conducted during the last decade have concluded that these medications can be harmful when used by frail elders with dementia who do not have a diagnosis of serious mental illness. In fact, the FDA issued two “black box” warnings citing increased risk of death when these drugs are used to treat elderly patients with dementia.

Last year, the Health and Human Services Office of the Inspector General (HHS OIG) issued a report showing that over a six-month period, 305,000, or 14 percent, of the nation’s 2.1 million elderly nursing home residents had at least one Medicare or Medicaid claim for atypical antipsychotics. The HHS OIG also found that 83 percent of Medicare claims for atypical antipsychotic drugs for elderly nursing home residents were associated with off-label conditions and that 88 percent were associated with a condition specified in the FDA box warning. Further, it showed that more than half of the 1.4 million claims for atypical antipsychotic drugs, totaling $116.5 million, failed to comply with Medicare reimbursement criteria. The amendment also calls for a new prescriber education program to promote high-quality, evidence-based treatments, including non-pharmacological interventions. The prescriber education programs would be funded through settlements, penalties and damages recovered in cases related to off-label marketing of prescription drugs.

>>Flickr pic by Ashley Rose