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.
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.
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.
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
November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. In the United States alone, there are nearly 15 million Alzheimer’s and dementia caregivers.
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.
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.