Wednesday, August 9, 2017

This is my last post on this blog

I'm home in California after a wonderful week filled with family and friends in Chicago.  We all gathered together for Peggy's funeral.  It was a catholic mass and a proper burial, a gravestone, flowers, a luncheon, and lots of hellos and goodbyes.

 Peggy died in December after 14 years with Alzheimer's disease.  They weren't all bad, some were worse than bad, and some were okay and even sometimes they were rather funny until she couldn't laugh with us anymore.  Between December 18th, 2016 and Saturday August 5th, 2017,  I was still heartbroken, not because she died but because she suffered with Alzheimer's, we all did suffered from the loss of her.  Not fair, not okay, not acceptable, not forgivable and I still felt not at peace, even though she supposedly was. Was she?  I still had her ashes in my closet and started to have anxious dreams about forgetting them somewhere between LA and Chicago for the burial.  I still felt the burden of having to make decisions for her without her guidance and I still felt like all I could remember about her, was her disease.



Then it rained in Chicago. The smell of the drops on the hot pavement in summer reminded me of summers with my family growing up and her running to her purse to give me a dollar for the ice cream truck. It was green and beautiful, with Black Eyed Susans (her favorite) everywhere. My brother arranged for family and friends to go to a rooftop Cubs game, and I could feel her memory sitting next to me on the bleacher seats, laughing in a cubs hat with gold earrings and little shoes. Then I showed, pointed, talked and bored my kids about everything I loved about where I grew up.  The place where my Mom was alive and where she was my Mom. I felt Peggy coming back to life. And, I was finally able to reflect and think about her, and wrote her Eulogy (which I had 6 months to do so) just a few hours before her funeral.

 Immediately after the mass, I cried, because I knew we were done.  She was now resting in peace, and I felt at peace too.  Alzheimer's was just a chapter in her long and full life.

 I hope you learned something from Peggy, I know I did.  

Love, Lois 







A Eulogy for Peggy 


 First of all, my family wants to thank you all for being here today helping us celebrate and remember what a wonderful and unique lady Peggy was.
As a matter of fact we are all here today because of Peggy and it's not just because we are her relatives or friends. We are here today because Peggy smiled when she saw us, and I mean, EVERY time she saw us.

She was so subtle in her magnitude.

I will put this thought into my perspective, having been lucky enough to call myself her daughter. Through her subtle ways she gave me confidence without winning awards, she gave me faith in myself, just by being me, and she gave me happiness by her example of finding joy in the little things in life. Simple, yet major and fundamental.

No matter what I did, or tried, or wore, listened to, or created, she thought it was neat. In fact, she thought everyone in this room was neat. I remember her telling me that people often asked her if it was hard having her kids so far apart in ages, “No,”she said I liked that they were all doing something different. Paul was doing this wonderful thing, and David was off doing that interesting thing, and I was at art school, {which I know she had to talk my Dad into) again using her very subtle, maybe even magical powers). She liked that we were all different, that people were all different. And I bet a million dollars that when she saw you, she asked about you and your family, because she liked you too. When you were with her everything you were doing made sense, because she never judged, bragged or looked down on anyone. Ever. She was generous, kind, caring, fun, silly, and so, so, beautiful.

I've had a lot of time to reflect on my Mom and how my brothers and cousins all got to where we are today. There's a common core that we all have directly related to her. We are happy, and we are good parents. We love our kids unconditionally. It’s a subtle notion but a powerful one that can lead to great things! or simply can help create interesting and wonderful people that become generous, kind, confident individuals, which also are... great things.

I'm very happy remembering Peggy with the people she loved and who made her smile. I was so sad when Alzheimers took her away from us in such a brutal way. But even when she was sick, and strange, and difficult, I loved her. Even though it was hard, it was easy which is a direct attribute to Peggy’s legacy.
oh, and laughing at very inappropriate things, we got that from her too.
It's been a pleasure seeing everyone today, my Mom would of loved it. Thank you, 








Ashley Campbell performs Remembering in honor of her father Glen Campbel...

Wednesday, June 14, 2017

The Gift of Presence

This article a friend of mine shared on Facebook  helped me realize a little bit of what we have been through.  It's advice on how not to "help" someone suffering. This was a huge thing for me to succumb too.  This was a difficult lesson for me to learn taking care of my Mom.  Throughout her time with Alzheimer's, there was less and less I could do to "help" her.  Succumbing to simply being there was difficult, yet when I did realize that being there was enough, I did see her soul and that connection lasted until the very bitter end. Although the article is mostly about depression, I think it applies to everyone. Here is the link to this article on the website on being by Parker J. Palmer.

Friday, June 2, 2017

There were 2 ladies outside the grocery store today. I didn't see them going in.  I walked out with my avocados and eggs and they said to me "Would you like to give to Alzheimer's"  I kept walking and said "I'm sorry, no." then murmured to myself,  "I've given enough."


pastel sketch

Friday, May 12, 2017

I saw you...

I saw you.
Walking slowly,
I saw her
Blank stare,
Walking slower.

I knew you.
Where you were,
Why you were there, and
How you wanted it to be lovely.

A walk in the garden,
By her side.
Thinking you were alone,
But you weren't because,
I have been there too.


This is a poem and the first thing I have written about Peggy, and it's actually about a mother and daughter I saw in Descanso gardens.   I didn't speak to them, but I knew the older woman had Alzheimer's.  I wanted to stop and hug them, but I didn't.  I just kept going, like life does, but my heart aches for them and for what Peggy and I went through.  Yet, my heart also fills with the love we shared when the disease grabbed ahold of her, and I never let go.

Sunday, January 15, 2017

Peggy died.

Peggyy died December 18, 2016.  I'm not ready to share the experience with this blog.  I don't know how to end it.  I have done drawings, I've slept so much, and received lovely and heartfelt condolences from my friends and family who have listened to me share this journey.  So this is all I have for now, a notice, an announcement.  There are so many angles to go in writing this post that I can't sum up our experience in one final blog post. The end? I don't know.  It's uncomfortable to share so much, but my heart aches for those that will follow me in this Alzheimer's story. So, I will write, draw, share, advocate and be brave and honest, just not right now. Thank you for listening and caring.  Most of all I want to thank Peggy, for being my Mom.

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!


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. 

Wednesday, November 25, 2015

Holidays

     I didn't decorate Peggy's room this year for Halloween.  Ghosts, skeletons, witches and candy (that she can't even eat) just aren't fun anymore when you've been staring death in the face for the last three or four years. Please don't be offended as I say that like it's no big deal, making a joke or a mockery of the situation.  My honesty is ripe with trying to understand how to navigate my world with Peggy still in it.   I'm with her as every holiday, anniversary, world event, reunion, birthday and Halloween comes and goes. I've learned that these events don't have the same meaning they used to.  Why?  Because they all mark the passage of time.  Time doesn't exist here as we used to know it.  Time surrounds us now with a celestial, infinite wisdom that has moved beyond the present. When I really hug her time will stop, close in on us, and all the years, all the holidays, all the love becomes one beautiful moment.








Saturday, October 10, 2015

Pictures of Puppies

Millie and Peggy
She's a Terrier, of some sort....
This Alzheimer's Blog sucks!  I'm tired of posting pictures and stories about death and dying.  So, I got a puppy. Take that Alzheimer's!  Meet Millie, another captain crusader against your depressing, sad and overwhelming stupid disease.  #dogtherapy

Our happy place
www.wyldersholisticpetcenter.com






Hilarity for Charity Video we helped make!

Saturday, September 26, 2015

My Dad's last lesson

My Dad's star
My Dad taught me to drive, golf and fold towels properly (he was an Air Force man.) Great life lessons too, like how to work hard, how to enjoy life, and one last and very surprising thing, he taught me something about death and dying.  I thought that's what Peggy was doing.  My Mom's brain has slowly been dying over the past 13 years, so I have had lots of time, too much time to think, sympathize, empathize, and even pontificate every angle and emotion about dying. I am waiting sadly, hopefully and patiently for it.  Every time I see her, I think it's near, sometimes so near that I'm afraid to leave her, but I've been thinking that for well over 5 years now.

My Dad had cancer the last few years of his life, but he was very matter of the fact about it.  He got a kidney out, had his weekly chemo, a little radiation and generally just did what the doctors told him and lived with it.  He still went out to dinner and happy hour with his buddies and walked his dogs.  I'd call him and he'd never, ever complain, maybe that he was just a little more tired than usual.  So when he had a seizure and asked me to come down to Florida I went, immediately.  Having been so close to death with my Mom for so long, I was not prepared at all for what might suddenly happen to my Dad.

His cancer had metastasized to his brain, and all his treatments were going to be stopped.  There was talk of rehab and getting him back on his feet.  My brothers flew down, we installed handrails and I met with his doctors.  He never talked about dying, he didn't want to.  He didn't even tell us what or where, if anything should happen to him.  I felt like I was the only one that knew the inevitable was around the corner, and that corner was coming up fast.  I knew the signs, I knew the feeling, I just knew it.

So, I got on  3 planes in the middle of the night to get myself back down to Florida. When I walked in his room his breathing was heavy, loud and coming through the grit of his teeth.  It wasn't difficult for him to breathe air it just had the sound of endurance running out. The groan of a weight lifter pushing through that last set. I dropped my bag and kissed him. I told him that it's okay, that I love him, that he is loved, by me, by so many and that he's an awesome guy.  I was here to hold his hand, like how he held mine when I was little and how he was one of the very first hands I ever held. I thanked him for that too.  His breathing began to quiet.  The sound of intention, concentration, determination all the stuff that has made up my Dad's life quieted down to a slow, relaxed sort of dream, and I laid down near him on the tiny love seat with my shoes still on, next to my suitcase.  I drifted in and out of sleep to the softening sound of his breath and the quiet golf game on tv until I woke to a missing sound.  The sound of his breath and his life that had let go. My Dad died within two hours after I got there.  I got to hold his hand, it was okay, it was kinda beautiful.  It was peaceful, it was logical, it wasn't like my Mom.

So when I came home, and walked in my Mom's room I knew what to expect, and it wasn't death.



telling Peggy about Dad dying

I knew what to expect, and it wasn't death

Visiting Peggy, celebrating another birthday.