Wednesday, December 7, 2016

Wounded

She's like a baby bird that is dying, a sweet innocent creature that all I can do is hold and tell that it's okay, that I'm here, she's here and it's going to be okay, and the sadness and the....that's why I draw it, because words don't describe it, they get too detailed and have rules and structure.  This is like nothing, no adjective can describe because it's every word in the whole dictionary entangled into one big mysterious snarl in the pit of my stomach.

Sunday, November 27, 2016

A Mooring on Thanksgiving

my sketch before Thanksgiving 
Earlier this week,  I was dreading another Thanksgiving at Peggy's "home." I could barely stomach the thought of all of us awkwardly standing around in that tiny room, the traditional smell of turkey masking the usual scent of the house for this year's future holiday memories with our Mom's disease placed at the center of the table, again.

 Today is Sunday and my brother Dave and his family have left. I now have a moment to reflect on another holiday spent with and without my Mom. I see it differently than I did a week ago. While
we did all stand around in her room, old age and disease did not preside over the occasion. The love for family did. We chatted with each other and FaceTimed our family who couldn't come. My brother Paul spent Thanksgiving with his three kids and a new son-in-law in Kansas City. It was astonishing to all of us that his youngest son, soon to be a doctor, was now old enough to host their holiday.  Ashley, Christopher and Sunny reminded us of our teenage selves with humor and frustration. Gidget, our youngest, is fully equipped with braces and, in my opinion, the best smile of our whole bunch.

Although my Mom can't actively participate in our lives, she still hosts the table that we gather around. What I hope my family remembers from these gatherings is how well we all care for each other and how we hold our memories and each other dear as we continue to make new ones.


Tuesday, November 8, 2016

It's election day

We are very excited around here about the election.  I'm sure my Mom would think it was really great we were all voting for a woman president!  So I wore my pantsuit and gave her an update. 



Monday, September 19, 2016

Hug

 I always make sure to give my Mom a big hug before I leave town, even if I'm gone just for a day.

 My little daughter and I were going on a road trip, the Cow Parade in San Luis Obispo was having a special launch party.  We were having so much fun together, we went to the cow party and then out to dinner, where she tried her very first and last oyster.  That night we stayed in a motel in Morro Bay listening to the seals and gulls and hatched a plan to wake up early to take a Kayak out into the Bay to hopefully find a Sea Otter.

I had a dream that night. My Mom, Peggy was on the shore standing up and we were hugging as we both said to each other. "I didn't know I would miss you this much." It was one of those dreams where you physically feel someone and wake up sad that they're not actually there, but I wasn't sad this time. I woke up with the warmth of the hug and feeling good, not sure why I wasn't feeling the usual sense of loss. Then I realized it was because it wasn't me just hugging her like usual, but it was because she was hugging me back. 

 Mommy Sea Otter and her baby hugging each other out in the bay.  


Saturday, August 20, 2016

"Lost Boy" by Ruth B - Cover by Sunny Keller

So my kids made a video.  Sunny and her Dad recorded a beautiful version of Ruth B's song Lost Boy. Sunny plays her ukulele, and Allen plays guitar along with our friend Andrew Williams who helped arrange it.  Its amazing, I love it so much.  But you know who really loves it?  Peggy.  I play it over and over for her, it makes me smile, yet makes me so so sad about all the things we lost. 

Friday, August 12, 2016

Still Connected

Still Connected by Lois Keller
I had a good talk with Corrine the spiritual advisor from Hospice yesterday and we talked about my emotional connection with Peggy.  She helped me see the light in her, and I guess in me too.

Tuesday, August 9, 2016

I take down the rail

It's been 11 weeks since Peggy has only taken liquids.  About half a can of Ensure a day, and some juice.  It's been 11 weeks since I thought she had 1 week left in her.  Life is a mystery.  I'm trying too hard to understand.  Time has always been our enemy throughout this degenerative disease's hell.  Her last few days, which have turned into weeks and now months have been undeniably the most mysterious of them all.  The why, how, the what if, the inability to help her is constantly on my mind.  I only visit her in the evenings now, because the weight of it is too much to bear at the beginning of the day, my inability to help her die, the not knowing if she needs my help as she has through out these 13 years, puts me in a frozen state.  So I go later, and I take down the railing on her bed and hold her close.  I hug her, I kiss her and we have a physical connection that takes all of that mystery away.  I'm here, she's here and "after all, tomorrow is another day." which reminds me of Gone With the Wind, which reminds me of Carol Burnett which reminds me of the laughter we used to share together, which makes me smile again. Went With the Wind




Monday, July 18, 2016

One for my Mom

Her breathing is slower, more labored, has more sound.  She may be nearing the end, we may be nearing the end of the road.  So, I put on this live recording of Frank Sinatra and I turned it up.  I hope he takes her by the hand and leads her to a place where she can dance, and laugh, and have a drink with Frank.



Sunday, July 17, 2016

Every other day

That's when I see her, every other day.  It's a discipline, it's a homage, it's a hug, it's the only way I can bear witness to these final never ending days.

Friday, July 1, 2016

June sketches on July 1st


Is today the last day?
Some days are better than others

Sunday, June 12, 2016

It's going to be okay now.

She smiled at me.  It's going to be okay.  That's all I ever want for her, to let her know that it's going to be okay.  Like when my daughter falls down and scrapes her knee. I'm there for her, it hurts, but it's going to be okay.  The pain won't last but love will.

We are taking a different approach to her now, she's not being fed as much, only as much as she can handle or wants.  It's little, but it's making a big difference.  She's not choking anymore, she's more relaxed, we are helping her eat less, not more.  It's okay, it's what is supposed to happen. I'm finishing writing this at the time of waking up and hearing about another mass shooting.  The toll
is already up to 50.  It's bad, it's not hopeful, and I fear that this world is not going to be okay on a
larger scale.  We are all fighting personal battles, and have our own crosses to bear, but when a stranger preys upon strangers with weapons of mass destruction, my family's battle with Alzheimer's makes sense, and seems easy. But, for the people and families that were hurt or killed, it's not going to be okay, because they couldn't be there for them at the end to hold their hands and say I love you, it's not what is supposed to happen.

Tuesday, May 24, 2016

Grim

The slow demise, the swearing, the psychotic episodes, the incontinence, the memory lapses and lack there of, the wheel chair, the bed, the not knowing who I am, the two years of spoon feeding have all not been as unbearable as these last few weeks with my Mom.  I don't know why Alzheimer's is so brutal, and I don't know why there isn't more realistic help to end this end stage of the disease.  Just let me say, there will a very loud voice that will include Alzheimer's in the right to die conversations, laws and actions when this is over.  Maybe that will be my Mom's gift to the world, not one she wanted to give, but one that will rise from the ashes of her suffering, after this is over.

Monday, March 28, 2016

A must share to help raise awareness

I Got That Dreaded Call.        



Alzheimer's has so many faces, I have been following this family's journey and her latest post is so important to read and share to understand the true need for a cure.  Please read and share.

Saturday, March 5, 2016

Her bracelet

I'm not a fancy gold bracelet kinda gal.  I'm sure to scratch, get paint all over, or most likely lose it. But what's the point of keeping the good stuff tucked away in a drawer, or only bringing out her fancy china for company?  If I get a little paint on it, or a dish breaks while having a tea party with my daughter it'll have the wear and tear of real life and these are the joys I'd love to share with Peggy now.  So I try to enjoy the things we do have and  I wear her bracelet all the time now.  
 It always looked so pretty on her, and it still does.






Fancy jewelry and the good china
A very special tea party with Gidgey and Spots when she was  2.


Friday, February 19, 2016

It's been a long time...

It's been a long time since I've posted.  It's been a long time with this disease.  When Peggy
was diagnosed, the average life expectancy was 8 years.  She has had Alzheimer's for at least 13.
How do I know?  I measure it by my oldest daughter's birthday, she just became a teenager on
February 11th. My foreboding thoughts 13 years ago came true when my Mom didn't come see me and my new baby. She was distant because her mind was failing and confusing her, she couldn't make connections either physically or emotionally.

 I haven't felt like writing about this any more. It's become so deeply personal and lonely
that sharing has become difficult.  I feel completely defeated.  I don't try to understand, help, research, raise money, awareness or what not.  I just try to be there.  So, I am.  We are.  I'm there for my Mom, to the bitter end.  Thank you everyone for listening and empathizing, I do care and I do want to fight.  I just hope I'll have more strength to fight this battle once it's over, if ever.
She made this beautiful blanket.

Catholic's now call Last Rites, The Anointing of the Sick.  
Having morning coffee with my Mom
She's got David Bowie eyes.

So many amazing people keep catapulting into the unknown, while we stay down here.

I've been organizing our family photos, so many memories.


I am and always will be her advocate!


video
I don't really want anyone to see my Mom like this, but I have the courage to share it, to raise awareness.  End Stages need to be in the conversation about the care, research and end to Alzheimer's.