Wednesday, September 21, 2011

please ask, please tell

Today is the end to Don't Ask Don't Tell.
I feel the same way about Mom and her dementia.
No more secrets.

Please ask, please tell.

Please, ask me how she is. Ask me about her, remind me of who she is and how much you like her. Ask me if it's ok to visit her, ask me if it's ok to write or call. Yes, yes, yes!!!

And tell - tell everyone. My Mom is being destroyed by her dementia. Her original diagnosis is vascular dementia. Does that mean she doesn't have Alzheimer's disease? Maybe, maybe not, but does it really matter? She has an incurable progressive dementia illness that will someday take her from us. So tell, tell everyone what's going on.
Help me raise awareness about Alzheimer's disease. Help the Alzheimer's Association as they help us through this nightmare. Any research done on brain health is good for us all. Any cure for Alzheimer's will provide insight and hope for other brain illnesses.

Today is World Alzheimer's Action Day - please ask - please tell.

Tuesday, September 20, 2011

change change change

How has Mom's dementia affected me, how has it changed me? I was wondering about that the other day when I realized that... as silly as this sounds... I'm not afraid of "old people" any longer.

When I was growing up there were no elders in my family, nobody lived long enough to become "old". The only elders I ever knew were the folks that I saw in nursing homes when visiting with scout groups or church groups, standing huddled with my peers while singing carols or passing out May baskets. YOU know how scary nursing homes can be to a child: the people talk different, they move different, and they smell different.

I never considered my neighbor, Auntie Ruth, as old. Because even in her eighties she was still gardening, active in church, and happy to play with us little girls from the neighborhood.

How else has Mom's dementia changed me?
I try to cherish each moment. I try to find joy in little things.
I believe in support groups.
I cry a lot more. The grief fills me up and spills out my eyes. So... I don't wear as much mascara as I use to.
I'm not afraid to introduce myself to complete strangers.
I've become better able to communicate on the phone to advocate for my Mother's needs and rights.
I go to the gym and exercise regularly.

And Mom's dementia has reminded me how precious my brother is, he's grown from that cute little kid, to an amazing man, with a wonderful family.

Monday, September 19, 2011

Heartbreak to Hope coming to NH

from the Alzheimer's Art Quilt Initiative (AAQI) website:

The exhibit: "Alzheimer's Illustrated: From Heartbreak to Hope" continues its five-year journey across the United States with a stop at the Belknap Mill Quilters Guild Quilt Show, October 1-2, 2011.

The exhibit will hang in the Conference Center at Lake Opechee Inn and Spa, located at 62 Doris Ray Court in Laconia, NH.

Thank you Belknap Mill Quilters for hosting this exhibit at your quilt show!

flash mobs

There was an Alzheimer's Association flash mob at Faneuil Hall yesterday. To raise awareness and promote the "WALK to End Alzheimer's".

There was also one in Seattle last weekend.
(I don't know who took these videos - thank you for letting me link to them.)

I'm watching these YouTube videos of people dancing, being silly, raising awareness, making other people happy... and I'm crying, sobbing all over my keyboard. Every person there, every dancer represents someone with Alzheimer's, someone they love has this disease. Every person there is going through this heartache too.

Sunday, September 18, 2011


Today, Mom greets me with the query "And who are you suppose to be?"

Tuesday, September 13, 2011

Friday, September 2, 2011

hi Mom

It took Mom a while to recognized me.
I stumbled through "Hi Mom. How are you today Mom? It's good to see you today, Mom."

All the time she just stares at me with a blank look on her face. "Hi Cat, how are you today?" I pat the cat and grit my teeth. I try not to burst out crying, I try not to run hysterically from the room, I try to keep it together.

The blank stare, the hollow expression. Then she finds me.