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.

They Keep Saying She’s Dying … Or Waiting Around for Death

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The sky started rumbling. A storm was coming in from the north. There was wind, thunder and lightening. I hoped it would rain. But it never rains anymore. Then I thought about my mom. I wondered if God was coming for her and this was his grand entrance. As I stood over my kitchen sink washing baby bottles, I decided to go sit with her — just in case. It was 7:45 p.m.

My mom was sound asleep. She hadn’t eaten dinner. She hasn’t eaten in days, really. Earlier that day, I gave her a few drops of water, which was a mistake. She started choking. I got up from my chair, ran out and grabbed a nurse. They used a swab to try and absorb the remaining water. It was upsetting to watch, but, then, that’s what happens when you’re dying, I suppose. You lose your ability to swallow. I still can’t believe this is happening. Everyone says it is. I keep asking the nurses if they think she’s dying … just waiting for the one nurse to say, “Nope. She’s definitely going to bounce back from this, too.”

Now, here I was, back at her bedside.  I needed to talk to my mom … really talk to her. Something I have had a hard time doing … she has been mostly unresponsive for a very long time. How do you talk to a body? A body that rarely emotes, except to scream out; a body that takes and is incapable of giving because of a wretched disease. Eventually, you just stop. The silence is more comfortable. It’s safer. The words felt artificial after a while.

I don’t know why I’m having such a tough time accepting that this is (probably) the end of our story. I think I’ve been very realistic about our entire journey. Maybe too realistic, in fact. I’ve had moments where I’d step back and wonder, “am I too detached from what’s happening to my mother?” Have I shut off certain emotions in the name of self-preservation? I suppose, at the end of the day, it doesn’t matter. None of it matters. The one thing I can accept is that we’re all going to die. That’s how every story ends. And yet, as a species, we have an incredible knack for wasting every precious second on petty bullshit … bullshit that no one will care about in 5, 10, 20, 100 years.

Or even right this second.

And who wants their headstone to read: Here lies YOU. You wasted your life being angry, being sad, being resentful, being vindictive, being ridiculous, and now you are dead. The end. 

So here I am waiting. And learning. And remembering. I am (probably) watching death hover over my mother. In some ways, it’s a blessing. A blessing that soon she’ll (probably) be at peace. And a blessing for me … it serves as a reminder that we have this one life, and anything can happen. Death is democratic. So is dementia. It doesn’t care if you’re white or black, a Democrat or a Republican. It doesn’t care if you’re Jewish or Muslim or Christian. It just doesn’t care. That’s not its job.

And now I need two Advil.

 

Hey God, She’s Dying. Where Are You?

I’m still coming to terms with the idea that my mom is dying. It hardly seems possible. I mean, I knew, eventually, she would die. But death felt faraway. It still feels far away. If she is dying, it’ll take time. My mom was in OK shape, physically, before her sudden decline; she was decently hydrated, and like I said, the woman has a knack from coming back from the brink. She’s done it before. Why couldn’t she do it again? Never mind the fact that she hasn’t really eaten in six days … just a few bites of sorbet and sips of water through a plastic pipette.

It doesn’t feel like she’s dying. I don’t feel an overwhelming urge to sit by her bedside until she finally passes away. Maybe I should, but what is the point? Nothing is happening. She’s lying there, corpse-like. Sometimes her eyes will open, and then she’ll fall asleep again — eyes still open. I can tell she’s sleeping because she starts snoring. I don’t know what to do with myself, so I squeeze out a large dollop of citrus-ginger scented hand lotion and quietly massage her arms and hands. I say a few prayers, tell her it’s OK to leave this world. And then I shake my fist at God.

Really, you’re going to drag this out to the bitter end, huh? 

It has been ten years — give or take — since I noticed something was wrong with my mother. That’s more than 3,000 days. And here we are. Waiting. Waiting on Him. He must be Latin, just like us… we’re always late.

My mother’s family is very religious. Everyone is praying for her. And if they’re not praying for her, they’re thinking of her. There are a lot of thoughts and prayers are floating around … “You’re in my thoughts,” “Recite this prayer,” “Tell her we love her.” I’ve also been told that God will take her when he’s ready. I realize he’s very busy these days, what with mankind slaughtering one another (in His name), but surely he can move her up the list… I see it sort of like a transplant list. He’s transplanting her from Earth to Heaven. But this dilly-daddling is total bullshit. I find it difficult to believe in a loving, kind God when a) he takes his time escorting her through the pearly gates of heaven and b) this is how he saw fit to treat her these last ten years. With a terribly grotesque disease that has rotted out her brain. My mother who devoted herself to her church and to God. Frankly, I’m surprised the woman never became a nun. A life of prayer would have suited her, I think.

So here we are waiting. Waiting for her to bounce back and resume a life of nothing or waiting for her to die. Peacefully, I hope. And in a timely fashion.

So, She’s Dying

It was 7:30p.m. last Thursday when I called my mom’s doctor. “I think she’s dying,” she said. I was sort of stunned. I’ve been waiting to hear these words for a very long time. I don’t remember exactly what came out of my mouth. At that point, my mom hadn’t eaten for three days. She had a fever, too. The doctor didn’t know exactly what was wrong. She thought it was something viral, a stomach bug. A few days before, she was vomiting and had diarrhea. I told her that I didn’t want to treat for anything. I just wanted her to be comfortable as possible. Random feelings started bubbling up… guilt (who prays to receive such a phone call?), relief (finally, this has gone on long enough), sadness (my mother is dying) and more guilt (did I do enough?). And then, I felt fear. Fear that she would rebound. That this was just another false alarm. My mother has been close to the brink before, only to come back. She’s like the Terminator.

I spent most of yesterday with my mother. She was so weak, frail. But her skin was soft and smooth. I kept rubbing her her forearm. I don’t think I’ve ever felt skin so soft. I held her hand. I told her it was ok to go. That things here would be fine. I prayed the Our Father in Spanish (I cheated and used my phone. I had forgotten the words). I showed her videos of her granddaughter. Throughout the day I gave her water using a dropper. I left when she fell asleep. Ativan is good like that.

 

World Alzheimer’s Month (You Should Watch This Video)

It’s World Alzheimer’s Month. I hope you watch this video. Share this video. Tweet this video. Facebook this video. Tell people about this video. If you’ve been touched by Alzheimer’s disease or any other dementia, consider it your responsibility to spread the word. Make people aware. It starts with YOU.

There Are NO Alzheimer’s or Dementia Survivors. None. Zero. Zip. Nil. That’s a Problem.

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Walk in Their Shoes… Just for a Minute

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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!

Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s

A fantastically touching interview worth watching about early-onset Alzheimer’s disease. Award-winning CBS News Correspondent Barry Petersen talks about his book, Jan’s Story: Love lost to the long goodbye of Alzheimer’s, based on his journey with his wife Jan. Petersen talks about the changes in his wife’s personality, which started as early as 40, the reaction of family and friends when he started a new relationship after his wife was placed in a facility and his continued commitment to his wife.

5 Tips for Talking to Someone With Alzheimer’s Disease

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1. Diminish distractions.

2. Converse one-on-one.

3. Keep things simple.

4. Avoid arguments (this should be number 1).

5. Just keep talking.

I would also like to add:

6. Walk in their shoes.

7. Step into their world and speak their “language” (even if it makes no sense………………… my mom was only able to articulate herself using the words, “despierta America” and “la fruta”).

8. Take a deep breath if you get frustrated (because you probably will).

9. Talk to other family and friends about how to best communicate with your loved one. They might keep visiting if they feel like they’re actually helping or supporting the person with dementia.

Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?

3728905329_4b47a1b5cc_bIt was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.

And they wonder why caregivers lose their minds…………………………

As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that mom probably has the mental awareness (she used a different term, I think) of a baby.

Haven’t you ever seen a baby cry? 

No. I mean yes, but not really. And if I happen to be around someone with a baby (which is rare), I give them back as soon as they take that long inhale right before the wailing commences…… and then I walk away. The fact of the matter is, I never grew up with or around babies.

I’m certain, as a kid, all of my imaginary friends were successful professionals in their 30s.

So last night, as I watched mom yell…. I pulled up YouTube and typed, “crying babies.” I probably watched four or five videos of little sweet faces, completely twisting and turning beat red, as they cried…….. puffy lips quivering, eyes squinting, tears rolling down their tiny faces. Believe it or not, I could actually see a little bit of my mother in those faces. Her mouth turns upside down into a frown, her eyes squint and she’ll start yelling………………………. Sometimes a hug will calm her down; sometimes you have to let her yell it out. My mother can’t tell me what’s wrong, so you do what you would do with a baby — you do a mental checklist:

Is she wet?

Is she hungry?

Is she thirsty?

Is she comfortable?

Is the music too loud?

Is she cold?

I always joke that if I have a baby — barring any health issues — it’s going to be a walk in the park. A total breeze. After all, you can pick them up to comfort them, You can take them with you in one of those neat backpack thingies, you can arrange them yourself so you know they’re comfortable, their poop is much more manageable (even cute?), diapers are much easier to get on and off, bathing is a no-brainer and, and up until a certain age, you’re stronger than they are, and best of all, they eventually learn to tell you what they need, and maybe, they’ll even make you laugh……………….. and that’s what makes it all worth it.

Or at least that’s what I think. I have three cats and a dog.

There are very few joys attached to reverse parenting. You have to work very hard to find the funny. You also have to mentally force yourself to view your circumstances differently (or die trying, because this disease will kill you, too): This is a choice, this is a priviledge to help my loved on on this horrible journey, I get to do this, I get to play this role in my parent’s life. This will pass. 

It’s also a very lonely experience. Unlike parenting a newborn, very few people come out to celebrate your achievements — hey, I heard your mom didn’t spit in church today! That’s AWESOME! Here are some flowers — in fact, I feel like as each day turns into the next, seasons change, birthdays come and go, babies are born, babies learn how to walk and talk, you’re mostly forgotten about. People move on. That’s life. That’s the point of life.

We’re not meant to live in some damned and demented limbo-land.

And you people want to live to be 150 years old.

The mere thought of living to be 150 years old makes me want to cry.

>>Flickr pic by Chalky Lives

10 Signs It Might Be Alzheimer’s

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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.

2/6/13: Me & Mom

photoWe held hands and she fell asleep. Sometimes, all it takes is touch… a touch that lets you know, you’re not alone on this journey.

Dear Stress, We Should See Other People…

Dear stress...