Tag Archives: Frontotemporal dementia

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!

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?

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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

My Morning With Mom… A Composite

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Andres Rueda

My mom isn’t yelling much. This is a new development. It wasn’t long ago that she would howl when I would walk into her room. “Shhhhh. It’s OK. Shhhhh. I’m here. Shhhhh.”  She’d turn her head, look at me with this terribly anguished, almost twisted face, and yell. “Shhhhhhh. I love you. Shhhhhhhh.” I would hug her. She would yell I would hold her hand. She would yell. “Shhhhhhhh. Los pollitos dicen, pio, pio, pio, cuando tienen hambre cuando tienen frio.”

Shit, why can’t I remember the rest of the song?!

“Shhhhhhhhh. Please, no grites. No grites. I’m here. I love you. No grites, por favor.”

“Los pollitos” was a song my mom used to sing to me as a little girl. I try to sing it to her, but, somedays, it just made the yelling worse.

Did she know the song? Was she telling me, “I REMEMBER!!! I AM YOUR MOTHER!!!”

Or, was my singing voice truly that offensive to her sensitive ears?

Eventually, her yelling would subside, and I would sit on the arm of her big, beige pleather sofa and massage the top of her head.

We are living in the Dark Ages when it comes to dementia and dementia care.

This disease is unpredictable and change can happen overnight. Now, when I walk into her room, she’s mostly quiet. Even as I move the sliding glass door along its warped track and the thing grinds, she doesn’t yell. She sometimes doesn’t even look up.

There’s nothing.

She doesn’t know who I am.

My morning with mom. A composite:

I walk over to the small black clock radio, turn on the classical music station, and hide the radio in a cupboard, so the other residents don’t pocket it when they wander in and out of the room. I walk back to my mom and sit on the arm of her chair.

I gently rub her head.

Though her room is quiet, but it doesn’t stay that way. Margie, her roommate starts talking about the kids in the yard (the residents who are walking back and forth); Jim knocks on the glass door and waves. “Hi, Jon,” I say with a smile (I wish I could be as happy as Jon; Jon’s wife once told me that he’s always been so sweet and the disease has made him even more so). Alice slowly creeps into the room. She’s carrying a man’s white sneaker in her hand. “Hi, Alice.” Alice slowly stands no more than a few inches from my face. I think she has something to say, or she wants something, but her words, lost and twisted in her tangled mind, are lost. She walks out of the room, and slowly paces back and forth. She’s young. She can’t be more than 50 years old. She wears diapers and they sag.

James shuffles along outside mom’s room. He’s fast. And very tall. The cold morning air doesn’t seem to bother him. Finally, he stops in front of our room and walks in. I’m happy about this visit.

I love James. He is one of my favorite residents. On good days, he’ll tell me that I’m beautiful. He makes my day every time I see him, especially when he flashes that chipped, toothy grin of his. He makes me smile. 

“Hi, James.”

“Hiiiiiiiiiiiiyyyyyyaaaaaaahhhhhh.”

James sings his words. He sits next to Margie and they start talking………………….. their conversation makes no sense, yet they laugh and carry on.

They speak their own language.

Mom sits and stares out at the sliding glass window. I make the sign of the cross on her forehead. I tell her I have to go to work and I kiss her goodbye.

>>Flickr photo by Andres Rueda