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.
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!
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.
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.
It 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.