Sara Fasoldt's Journey Through CJD

2009-10-12T10:06:00.000-07:00

Sara's Memorial service was beautiful. We were blessed with a weeks long clear, breezy and mild late fall weather at the Pacific Ocean's North Oregon Seashore.

The Cannon Beach Community Presbyterian Church was filled with the uplifting and optimistic sounds of Ragtime piano music played by a local Franz Schubert scholar, Jennifer Goodenberger . Pastor David Robinson delivered a sermon on the promise of God's love by referencing a passage from Issiah 41:10

So do not fear, for I am with you; do not be dismayed, for I am your God.

I will strengthen you and help you; I will uphold you with my righteous right hand

Pastor David expounded on some research he had done on Sara's career, and quoted from a speech she had given where she encouraged the hopefulness those in the criminal justice communitity must necessarily draw on to be effective in their professional endeavors.

Pastor David invited Sara's Brother Bill Tullar to read a passage from the book of John, chapter 20 which he read beautifully and concluded by saying it was the promise contained in those words that will reward us by seeing Sara one day again.

Sara's son, Dave read some memories he'd compiled of his and Sonia childhood, mostly humorous and entirely sincere.
Sara's good friend Pam Gratzer spoke about her love for Sara, she read from a Memorial Scholarship Award Sara's co-workers have established in her honor, and read a poem written by their mutual friend Rhonda Brown.
We were treated to a wonderful multi-media slideshow created by Gina Jones and Theresa Willard (I will try to include a link to it here).
The Memorial concluded with a reception in the meeting area where we enjojed eating some of Sara's favorite cheeses.

Sara's Memorial.

2009-09-19T19:15:00.000-07:00

I'd like to share information regarding Sara's Memorial.

On Saturday, October 3 2009 at 11am we will gather at the Cannon Beach Presbyterian church to remember Sara Fasoldt's live and spirit.

A reception will follow the service in the community room of the church and will end around 2:30pm.

A banquet dinner will be served at the Elks Club in Seaside and will begin at 4:30pm. Every person is welcome to the memorial, reception and banquet.

If you'd like to RSVP, if you'd like specific information or if you'd like to speak to Dave Fasoldt, please call me at (206) 941 8737.

On Sunday, October 4th the extended family and select guests are invited to gather at the "River House" for a brunch and gathering starting at 11am.

Sara's Memorial Service: October 3rd at 11am

2009-08-04T18:07:00.000-07:00

We will be gathering in memory of Sara at the Community Presbyterian Church in Cannon Beach, Oregon for a memorial service at 11am on Saturday October 3rd, 2009. Everyone is welcome.

The address is:
132 E Washington St
Cannon Beach, OR 97110
http://maps.google.com/maps?hl=en&q=community%20presbyterian%20church%20cannon%20beach&um=1&ie=UTF-8&sa=N&tab=wl

Getting to Cannon Beach:
Fly to Portland, Oregon and rent a car. Cannon Beach is approximately a two hour drive to the West over a low mountain pass from Portland. Some may want to stay in one of the several hotels near the Portland airport, however there are many hotels in Seaside which is a 10 minute drive North up the coast, as well as a few in Cannon Beach. A reception will follow the Memorial Service in the reception hall of the church.

The weather in early October on the coast will be cloudy and chilly, with a possibility of rain.

If you'd like help with information about traveling to Cannon Beach, please contact Dave Fasoldt at (206) 941-8737.

The Newspaper's Notice

2009-07-28T16:58:00.001-07:00

Here's the text Sonia and Dave are submitting to the newspapers in the cities Sara spent many years living in, amassing great numbers of friends in and leaving lasting bonds with.

The Democrat and Chroncle in Rochester, NY
The Press-Republican in Plattsburgh, NY
The Times-Union in Albany, NY
The Daily Astorian in Astoria, OR
The Seaside Signal in Seaside, OR

Sara Tullar Fasoldt has died at age 63. This remarkable person will be missed and remembered by the communities of people with whom she shared her unique and vibrant personality. Sara made endearing friendships throughout the distinguished chapters of her life, from her early years as young mother, through the vertical arc of a career in public service, and during her blossoming but brief endeavors post early-retirement. Sara’s life was a tapestry of friends from divergent, unrelated and trans-continental locations, with Sara’s enthusiasm for tomorrow the bond that connected those who will always love her. Those of us who are so blessed to be her surviving family invite you to remember her as we do; a highly-capable pragmatic achiever, a role-model. We will memorialize Sara in Cannon Beach, Oregon at the Community Presbyterian Church on October 3, 2009. Donations in Sara’s memory to community Women’s Shelters are welcome.

July 26, 2009

2009-07-26T23:01:00.000-07:00

Sara passed away this evening.

Sonia and I and our families thank all of you who love her as we do. We thank you for your expressions of concern, for your prayers and for your words of consolation.

When we have formulated the plans to memorialze her, we'll share notice of the events here.

My brother is my hero

2009-07-25T16:14:00.000-07:00

My brother is my hero. I haven't been very capable over the past 3 months. I give myself the excuse that I was in my third trimester when mom started showing the signs of CJD and therefore can be excused of my emotional state and my physical capabilities, but it doesn't really matter why. I think I *could* have dealt with this all if I HAD to - as in, if Dave hadn't done it I would have - but, and I'm POSITIVE of this, not nearly as well as Dave has.

I suppose we get to know ourselves in times like these, and we get to see other people in brighter lights than we usually see them. Dave really has been all that he needs to be plus some in this horrible situation.

He truly is my hero.

No5

2009-07-24T20:03:00.000-07:00

One of the items Sonia added to the transfer stash back in late May was an embroidered pillow that reads "It's Good to be Queen". That little pillow has been so handy in the endeavor of making Mom comfortable. It stuffs just right in the crook of the arm, in the nape of the neck, at the wedge of the lumbar.

Our Mother, Sara Fasoldt is our Queen.

The scent of our Queen is Chanel Number 5. We're runing out of comfort measures that can add value to Mom's deteriorating health. She's stopped swallowing as of the past week-end. I've been assured she's not in pain and that her sentience has retired. I'm not so sure she can understand us when we read to her, but we do. I'm not so sure that she can feel us hold her hand and kiss her face, but we do. And I'm not at all sure she can process the scent of the perfume we anoint her with- that part for sure is for us.

Our Queen is worth it.

Lady Godiva

2009-07-22T20:35:00.000-07:00

When Sonia and I were in our early teens we'd sometimes be invited along with Mom to her bosses' house for an evening of dinner and stories. Jeanette and Sam were wonderful hosts, their children were already adults and their small appartment was filled with the exotic fragrances of an unfamillar culture. Sam's thick accent sounded to us like he was raised in Brooklyn, not his native Ukraine. Sam drove a purple Lincoln that he called Abe that he may or may not have won in a poker game. Mom's boss from the Probation Department- Jeanette served us borscht and stew meat with sour cream and souerkraut, and always Godiva chocolates from a gigantic gold foil box. I remember being invited to take only one and how challenging it was to survey the treasure trove of tempting chocolates- trying to imagine which shapes held which flavorful reward, and select the one to commit my taste buds to.

Mom saved some kind of treasures in one of those gold foil boxes, maybe Sonia will remember what it was, maybe pictures- maybe buttons. I can't recall. I'm distracted right now for lots of reasons but mostly I'm resisting making the box-of-chocolates-to-life analogy, not just because it's cliche- which it is. But mostly because it's too simple. We get the chocolates- all of them, and when we're done eating them at whatever pace we happen to be aware of in retrospect, we get the box too. And if we're lucky we can enjoy the use of the box just as much as when we ate- or gave-away the candy.

I'm also not remembering how long Mom had collected elephant paraphernalia- Sonia may also recall this fact as well. Today Nancy and I went to lunch at a neighborhood Thai restaurant and this carving greeted us at the entrance. I like how the trunks meet to form a heart shape.

More Pictures From Max Visits His Nana

2009-07-19T18:51:00.001-07:00

Max visits his Nana

2009-07-19T17:10:00.000-07:00

Max needed to meet his Nana, so today I took my cousin Amy, her husband Don, Aaron and little Max over for a quick visit. Mom had a nice spark of recognition for Amy, which made me happy. She was awake for most of the hour-long visit and although she didn't seem to take any notice of Max being there, it was so good to have him be in her presence. I believe a 4 day old baby can probably get more into touch with her than we can.

I'm glad to not be pregnant anymore - I'll at least be able to be there with her more often once I'm allowed to drive again. Max is a patient, easy baby, so I'm sure he won't mind hanging out at her home with me.

Talking About the Present

2009-07-17T22:52:00.000-07:00

Today we strolled through dappled sunshine on a hot Seattle summer day. Nancy blazed a path down the sidewalk through trespassing lavender blossoms thick with pollen-laden bumble bees. Mom's freshly lavished lotion scent blended with the bluster of brushed-aside fragrance. The chair wheels crushed through the minefield of deposed cherries- it's almost what Nancy and I call "free fruit season". Pears, plums, apples and grapes, blackberries and blueberries are almost nuisance issues for gardens and pedestrians. Neighbors fill paper grocery bags with tree fruit and deposit them on one another's doorstep in equal gestures of altruistic goodwill and self-conscious landscape hygiene. One can only eat so many plums from the icebox that you were saving for breakfast. Forgive me, they were delicious, so sweet, so cold*.

Somehow I've been able to make the managing of Mom's affairs, her care oversight and the guardianship of her dignity my full-time job. It's an opportunity that has been a gift in large part due to the dynamic competency and the corresponding sacrifices of both Nancy and Sonia.

Thank you, my loves. Your strength magnifies the Glory I seek for the strength and wisdom I need now.

*Thank you William Carlos Williams

Grandchild Number Six

2009-07-16T17:56:00.000-07:00

The number of wonderful people who are blessed to call Sara by the esteemed title of Grandmother has grown to a total of six today by the addition of Maximillian Seydlitz, born to Sonia and Aaron today at 9 am-something in Kirkland, Washington.

Sonia is feeling crappy, but happy.

Grayce; age 20, Holly; age 17, Ben; age 15, Porter; age 14 and Chloe; age 12 welcome into the Blessed Order of GrandMaternal Progeny: 8 pound-ish Max; age 5 hours

2009-07-15T17:00:00.000-07:00

Thanks for the comments, they're an insight into Mom's sphere of influence and to the reach of her love. I'll print them all out and read them to her tomorrow.

Talking Book

2009-07-13T16:41:00.000-07:00

We were encouraged to assemble a "Memory Book" for Mom to help prompt recollections of events, people and experiences. Before we moved Mom to her new residence, Sonia, Nancy and I brainstormed what furniture Mom would be needing and what special mementos we'd need to bring to Seattle. I packed-up Sonia's mini-van with some furniture and clothes to take to Seattle so she and Nancy could arrange the room in advance of Mom's arrival. The furniture and clothes were easy to select, the treasures, not so easy. I had amassed a pile of keepsake things for Sonia to transport and before she left she filtered through the items I had set aside, added some things I had overlooked and when she was done we had a thoughtfully archived collection of loose pictures, framed pictures, scrapbooks- even a newspaper edition from Plattsburgh with a front page article reporting about her promotion. All these mementos got packed-up, as well as a manila envelope full of the cards and letters from Loved-ones.

When Mom got moved-in, I started to assemble the "Memory Book". It's a red three-ringed binder with the cards and letters taped to individual sheets of cardstock.

I remarked today how often the image of the butterfly was incorporated into a card that communicated a solace toward grief. Maybe card designers are aware of the metaphorical symbolism of the metamorphosis embodied in the life-cycle of the butterfly and are drawing attention to a parallel with whatever transformation occurs in the spirit when someone is dying.

Music, Spanish and a Puzzle

2009-07-08T19:25:00.000-07:00

It just seemed so much that Mom was in pain the other evening. Her muscles were clenched, her face in grimace, her body jerking. One of the caregivers attending Mom asked me if I would please go home, I didn't need to be seeing Mom like that, she said. I wanted to help, so I called Hospice. The nurse relayed to me that rather than experiencing the type of pain we might associate with trauma, Mom was having a kind of seizure. It was cold comfort.

I reported back to Mnembre, the caregiver what I had been told. In her thick East African accent she asked: "This life, David- what has it's meaning?"

When I got home that evening the song Guantanmera was running through my head. The spot where Mom (is sat) is near the CD player, and I've been playing the houses' music library for her. Mom sang songs in German, she sang the Hebrew words to Hava Nagila, and she knew the words to Guantanamera. I looked up the translation tonight, it's a delightful and pragmatic sentiment:

Yo soy un hombre sincero
De donde crece la palma
Y antes de morirme quiero
Echar mis versos del alma
Guantanamera, guajira, Guantanamera

I am an honest man
From where the palm tree grows
And before dying I want
To share the verses of my soul.

Mi verso es de un verde claro
Y de un carmín encendido
Mi verso es de un ciervo herido
Que busca en el monte amparo
Guantanamera, guajira, Guantanamera

My verse is light green
And it is flaming crimson
My verse is a wounded deer
Who seeks refuge in the woods.

Cultivo una rosa blanca
En julio como en enero
Para el amigo sincero
Que me da su mano franca
Guantanamera, guajira Guantanamera

I cultivate a white rose
In July as in January
For the sincere friend
Who gives me his honest hand.

Y para el cruel que me arranca
El corazon con que vivo
Cardo ni ortiga cultivo
Cultivo la rosa blanca
Guantanamera, guajira Guantanamera

And for the cruel one who would tear out
this heart with which I live
I do not cultivate nettles nor thistles
I cultivate a white rose

Con los pobres de la tierra
Quiero yo mi suerte echar
El arroyo de la sierra
Me complace más que el mar
Guantanamera, guajira Guantanamera

With the poor people of the earth
I want to share my fate
The brook of the mountains
Gives me more pleasure than the sea

Hospice and the CJD Helpline

2009-07-07T20:38:00.000-07:00

My calls are returned by somber, even voices
Humane and gracious, these are grown-up people
Using grown-ups tones with genuine compassion
They seem to know the trajectory of my questions
Even if I'm stumbling in the asking. They're there.

Nurse Someone's got an affirmation for us
There's some pharmacutical something somewhere
I hear "Take it an hour at a time", and it resounds
That's a phrase I've used myself about myself, so
It must be true. It must be there, there's truth there.

Today the house had a party for a birthday for a lady
Wheelchairs and baloons, a hired musician with a ponytail
I observed the most mute resident move his lips in song
To "Happy Trails To You, Untill We Meet Again"
And again, we took that hour that time, and we left it there.

Oranges, a Sweetness so Tart

2009-07-06T20:52:00.000-07:00

While I was living with Mom during what has turned out to be the early days of her decline, she said to me: "Eat oranges. You know, eat oranges and citrus- they'll help burn the belly fat you're amassing. It's no good to carry belly fat, Dave." I was fixing us a dinner. One of the signs I now recognize as a signal that she was "losing her marbles" (as she had put it) was not only that she had been forgetting to eat, but that she had made no real effort to cook for me while I was checking-in on her back in early May. Mom would almost always be planning the next meal. If she hadn't been soliciting a request for the next night's supper while we were eating tonight's meal, she had something brewing in the crockpot in the morning while cooking up breakfast.

Lots of times I'd ask for a salad. A request for salad would sometimes get me a roast, broiled asparagus and brown rice. Mom knew healthy eating. Mom loved oranges.

I've met lots of the families that visit loved ones who share Mom's Adult Family Home. Today I visited with Lois's husband Myron. Lois and Mom would share lots of fundamental connectivity; they were both professional women, each of them with similarly advanced educational accomplishments and each from New York State. Neither women any longer have an ability to communicate in the convention of language, but hold in ephemeral reserve a connection through those who love them. Myron and I talked in reverent witness to our loved ones lives in action. Maybe they might not have been fast friends, but colleagues indeed no doubt. They would certainly have respected one another's status and maybe even have shared professional contacts. They might have even bumped-in to one another on a flight to Hawaii at one time, who knows?

Myron's Mother happens to have also achieved the same Duplicate Bridge Life Master status that Mom has. As Myron rose to leave to walk to the bus stop he mentioned purposefully- in the way that a person is entitled to after having shared personal anecdotes with a newfound soulmate- that he's 92 1/2 years old.

I'm 42 1/2.

The staff of Mom's home want to oblige her preferences for food and music and comfort. I told them she dislikes bananas, peanuts, peanut butter and cats. "Cats?" they say. "But we have many cats here!" So, I can keep the bananas at bay and the peanut products aside- but there's only so many cats I can shoo away, as for the rest I hope the staff ladies abide.

But I can eat oranges, for Mom.

Piece of Paper

2009-07-05T18:58:00.000-07:00

I caught a glimpse of some fluttering urban flotsam while heading home from Mom's house on my motorcycle today, an ethereal flutter of a white rectangle in my periphery- and then I registered what it might be. Sonia's address she wrote for me on a business card. I need that, so I stopped. Where I stopped was a small park at the foot of a bridge I've been by a thousand times but never visited. So today I paused. I retrieved Sonia's note and I regarded the bronze statue of the girl offering the world her origami crane, an offering of peace.

Peace to the world, peace to the busy commuters, peace to the distracted and sorrowful rider. Peace is love.

Fruit Crisp on the Fourth

2009-07-04T21:04:00.000-07:00

When we cleaned out mom's house, we also emptied her fridge and freezer. Nancy was sentimental about the frozen fruit mom had picked and canned in freezer bags so she saved it. Today we had a picnic at mom's house. I brought the Brats, Nancy brought a fruit crisp. Well, I brought Bratwursts for mom and I, and tofurkey dogs for Nancy, Porter and Chloe.

We were speculating that Mom knew the answers to the crossword puzzle clues, but she was just holding out on us to make us challenge ourselves. We also noted that it would be an excellent time to roll-out the Scrabble game. Mom excelled at Scrabble.

Porter sets the grill alight. Tofu dogs need to be properly cooked, afterall.

Mom got half of a Bratwurst- they were huge. Naturally, I ate her other half as well as my two halves.

Nancy made Deviled Eggs. Chicken owners find lots of ways to incorporate eggs into most meals.
Mom and I took an afterdinner stroll around the compound. Roses are in fading glory now that it's July, but their scent is sweet not only to us but to the bees who love them as much as we love eachother.

Bless us, Lord. Our world is full of the wonders of your Glory. We seek your Grace in everything we sense.

Like This and Like That

2009-07-03T22:12:00.001-07:00

Mom's lost much of her ability to communicate with words, but just the other day Nancy was saying her good-bys for the afternoon and she said "I love you Sara". Mom responded with these four deliberately retrieved words: "I... Love.... You.... Too"

We had been listening to the Buena Vista Social Club on the CD Player.

It's like this and like that.

A Glass of Cranberry Juice

2009-06-30T20:38:00.000-07:00

A simple thing happened today. Mom drank a glass of juice on her own.

Mom's been unable to tell her hands to do what she wants them to do, but today she reached-out and grabbed the juice on her own. Virginia was impressed:

Menembre was impressed as well:
I was impressed and inspired. The simple glass of cranberry juice brought me so much joy today.

It was yet another glorious Seattle summer day, so after dinner we went for a stroll around the neighborhood.

We found a "pocket park", a city lot-sized park that had been a garden and donated to the city. Mom loves this kind of civic altruism. What an awesome day it was today.

A Straw Sun Hat and a Cool Breeze on a Warm Sunny Day

2009-06-29T19:44:00.000-07:00

Sara slept well last night for the first time in weeks. Yesterday we had a crab boil dinner party at 'Mom's Place' with some of Sara's favorite foods, a little wine and a few of Dave and Nancy's friends. Having been told to "make yourself at home" we've moved over our barbeque ensemble, our taste for fine dining and our appetite for festive gathering. We've moved in, in spirit. We found an electrical outlet near the water fountain and plugged-in Mom's boom-box, and cranked-out the Sweet Adelines music and Mom sang along. It's so wonderful that she can recall her musicality- lyrics and all! Dave boiled 5 Dungeness Crab that he caught with his credit card at the seafood market and barbequed six chicken breasts. Mom's spirits were high! She slept well last night and today was another glorious day.

It was since Mom had moved to the North Coast of Oregon that we became seafood afficianatos, in fact- The first crab we had ever caught was right off the bridge in Seaside Oregon.
See the yellowish-tint to the crab water? That's 1/3 cheap white wine by volume! The crabs cook up so much more sweet, and their shells fall right-off.

Good food and music are some of Mom's favorite things! We're so fortunate to be able to share these treasures with Sara. We love you. Mom.

2009-06-19T21:46:00.000-07:00

click on the picture for a larger image
Chloe, Porter, Nancy, Sara

Photos

2009-06-19T21:40:00.000-07:00

Sara's Private Bedroom
Dave and Sara

Sara and Nancy

2009-06-19T21:34:00.001-07:00

Evergreen Adult Family Home

Sara watering her new tomato plant

Evergreen Adult Family Home- Sara's new home.

2009-06-19T21:34:00.000-07:00

Sara's new residence, the Evergreen Family Home.

The Activities' Director arrainged to have Mom plant some tomato starts on her second day. Here she's watering them

2009-06-19T21:32:00.000-07:00

Sara's first day at Evergreen Adult Family Home 6/9/09

June 19th, 2009 Family and Friends Visiting

2009-06-19T21:11:00.000-07:00

We are so grateful to all of you who have sent cards, inquiries, and visited Sara these past weeks. Sara really enjoys company and we welcome you all to come and visit. A special appreciation to friends and family who have traveled from the east coast to be with Sara, it means so much to us.

If you need a place to stay, a few recent friends and family have stayed at the Hotel Nexus on Northgate Way, not far from Sara's new residence.

Days like this…

2009-06-15T21:39:00.000-07:00

The case manager at OHSU said that there would be something to enjoy about mom every step of the way. At the time I couldn’t imagine finding any joy in this disease, as I watch it ripping her away. I think I may even have rolled my eyes when she said it. I didn’t, COULDN’T believe her. I go there every day and spend time with her, just being with her, not expecting much. I tell her stories about my kids, stories about growing up, even stuff I never told her (like when a boyfriend and I broke into a boat house… stuff moms don’t need to know, really)… but I don’t expect her nowadays to respond with anything other than “mmm”s and “oooo”s, clearly not really with me in the conversation. I leave there every time sad and angry about what this disease is doing to the mother I love so very much. But not today. Today I found lots to enjoy about being in her presence.

Her long time friends Pam, Mary and Glenn have been hanging around entertaining her (and putting her to bed!) for the past few days. They have been so caring and wonderful to her, and I so very much appreciate the love they show her. Another long time friend, Rhonda, came today to visit. When I arrived today I walked into a party of friends who are so comfortable with one another from the trials of decades of friendship. As I sat down, I instantly realized that mom was really with it! She clearly was enjoying the party as much as everyone else! She was laughing appropriately at all of the stories and even sharing her own thoughts (mostly disjointed, but some were completely right on). Today it was, for the first time in weeks, clear she wasn’t worse than she was yesterday. I left with a smile on my face for the first time in so long. Ahhhh, such a nice feeling.

I know a lot of you come to check on this page frequently looking for updates, and I’m relieved to be able to post this upbeat update instead of the updates I’ve been avoiding posting for a week.

SARA"S ADDRESS

2009-06-15T14:38:00.000-07:00

If you would like to send cards we will hand deliver and read them to Sara:

PO Box 17859

Seattle WA 98127

A picture from last summer by her friend Norma

2009-06-13T11:23:00.000-07:00

Just wanted to share a picture her friend Norma sent from last summer. If anyone has a favorite picture, I'd love to share it as well!

Thanks for the comments

2009-06-12T17:18:00.000-07:00

I want to thank all of your for you comments and memories of my mom. It helps me tremendously to know you are all out there sending her loving thoughts.

I know I promised an update when she arrived on Tuesday, but I haven't been able to bring myself to type what we've been going through. I'll try tonight to get it out, but I'll summarize by saying that she wasn't thrilled to be here and she's losing more and more function daily.

Check back tomorrow for the update. Hopefully I'll be able to make some words come that aren't as sad as they are in my head now.

Getting her room ready

2009-06-08T17:53:00.000-07:00

Nancy and Aaron (my husband) and I took her stuff to her room this morning in preparation for her arrival tomorrow. We had planned on bringing her there today, but her social calendar was full down in Seaside up until today. I'm not surprised, but I am amazed at how many people she has touched down there in the relatively short 5 years she lived there. It's so much fun to hear her laugh with the people who come to visit - she may not be completely there, but she's there enough to enjoy a good joke! On Saturday my brother was reading to mom and I out of a Dave Barry book and she was giggling at all of the funny parts. Yep, that's mom :).

Selecting the stuff to bring to her new home didn't require too much thought. The room is about 10' x 12', so we knew we'd be able to fit seating and a bookcase in addition to her bed. The hard part was setting up her belongings in a strange place with the thought of her being there for however long she has left (uuuggg - I hate typing that. Somewhere in the back of my head I hear screaming: "She's going to recover, and isn't she going to be PISSED when she finds out you moved her stuff").

Okay, that was my brief update - I'll update tomorrow after we get her settled. I want to thank *everyone* who has reached out to her and to my brother and I offering love and support. It means so much to me that my mother's circle is so large and that she's touched so many people.

Wrong on the dates...

2009-06-07T21:41:00.000-07:00

Thanks so much to Nancy (my sister-in-law) and Dave, I know now that I have my dates off by about 2 or 3 weeks. She actually called my brother the first week of MAY! I'll edit the original post to reflect this (later), but it means that 1) the past 5 weeks have seemed more like 2 months and 2) this disease is moving faster than I was portraying. *sigh*

The journey so far

2009-06-05T12:17:00.000-07:00

My name is Sonia and I am Sara's daughter. My mother has been sick for a very short time. My intention is to give the details from the start of what we’ve seen to the present and then update when things change.

First week of May: Mom called my brother, Dave, in a panic saying that she couldn’t find her car… in her driveway. It worried him enough that he went down to check on her. It was obvious to him then (and to me on the phone) that she was having what we all thought were memory loss episodes similar to Alzheimer's disease, roughly stage 3. It was clear when he went down there then that she needed help, as she wasn’t remembering to feed herself and was having problems finding her way around her house. She was coherent, but not all of the time. She started having visual anomalies in the form of tracers of colors around that time as well, but she was chalking that up to new glasses. She had no problem with knowing who her children or friends were, but did not remember all of the things that had happened during the day. She was describing how she was feeling as “foggy”.

Second week of May: In the short time of about a week her cognitive state started to decline so rapidly that I took her to the emergency room in her small coastal town of Seaside, Oregon. They ran basic diagnostics consisting of a mini mental exam (or, really, a mini mini mental exam), a CT scan (to look for bleeding) and a blood and urine screen. They suspected stroke but found “nothing” (to quote the ER doctor). Since she had an appointment with a GP the next week, and her mental state wasn’t terrible enough to admit her to the hospital (well, and she hadn’t had a stroke), he released her with the advisement not to drive and to have family close by to help her. He also called the GP and updated her so she’d have the information when the appointment time came.

Third week of May: During the appointment the GP gave her a longer mini mental exam, ordered a chest x-ray (not sure why) and told us that she would be referring her to the University of Washington Medical Center as soon as possible for more testing (since both Dave and I live in or near Seattle, we wanted to have her there with us). The GP mentioned during the visit that she suspected it might be Alzheimer’s (note: although Alz is a unique as the patient, NOTHING I found in any Alz literature indicating that the disease could progress as rapidly as it was appearing to progress with her, so I wasn’t completely satisfied with her suspicion). At this time mom’s confusion was growing dramatically, and her short term memory was very sketchy. We worried very much about her wandering away from the house since she was so confused about getting where she wanted to be in her house and was sometimes going outside to find her bedroom, the bathroom or the kitchen. She also at this time was having a little trouble being steady on her feet. Not much, but she seemed to need to walk a little slower than normal and I noticed that she was holding on to things while standing still. She couldn’t sign her name – well, she got her first name but then was having a lot of trouble remember what letters were in her last name and how to physically write them.

May 21st: Her GP orders an MRI. The test is easy, according to mom, and we await the results. She verbalizes that she is feeling more and more “foggy”. They call the next day and schedule ANOTHER MRI for the following week. Since the hospital in Seaside is a small hospital, they don’t have a resident MRI machine (it is driven in from Portland for 2 days a week), we have to wait this long. They said they needed another one to make sure that she hadn’t moved during the MRI.

Memorial day: My brother called from Seaside, where he’d been staying with her pretty much without a break since the beginning of the month, and he and mom told me that she was feeling even more disoriented, evidenced by trying to show her nephew around her house and not being able to come up with the words for the rooms. I suggested they go back to the ER, since when I took her they said to come back if it gets worse. I also thought that they would be able to read the MRI results, since nobody had given us the results from the first one. The visit to the ER was short – they looked through her chart and explained what the radiographer had written in the chart: there were a couple of possible reasons for the bright spots seen in her frontal lobes, most likely among them Creutzfeldt–Jakob disease (CJD). CJD is a degenerative neurological disorder that is very rare, incurable, and invariably fatal. Dave is in shock and disbelief, mom is just in disbelief. He calls me, and I am likewise in shock and disbelief.

May 27^th: This is the day of her second scheduled MRI. We had gotten advice from several people, including her GP, that going to the Oregon Health and Sciences University (OHSU) hospital ER in Portland would get us a quicker path to a neurologist, as we were having a problem getting a neurologist to schedule an appointment within the week. Why this was so troublesome is that the progression of her symptoms was so rapid and we were seeing dramatic changes daily. We wanted them to find her a diagnosis and cure before whatever was wrong took over (still in disbelief about the CJD diagnosis). By this time she had a shuffling gate, was “out of it” most of the time with stretches of clarity that only last a few hours at a time, and used words that were inappropriate to the conversation pretty consistently. After the MRI we took her directly to the ER at OHSU. This is a real ER in a big city with big, real emergency medical problems. Because of this we started to get a little nervous that it would take a long time to see us, and that once they saw us that they would send us away and tell us to wait for a neurology appointment. Luckily that didn’t happen.

We brought all of her medical information with us, including both MRIs, for the new crew of doctors to look at. They asked the same mini mental exam questions that the other doctors had, and it was clear that mom had lost more cognition since the last exam. She had a problem remembering her full name, for example, whereas the week before she could. We spent a few hours in the ER and thankfully they didn’t want to just send us home, but instead had their on-call neurologist come in. We were SO excited that we were finally getting the attention we needed. The neurologist tested her with a much longer mini mental exam than she had been having, as well as physical challenges to test her balance and strength. After these tests and after he reviewed her MRI and medical information, the neurologist admitted her, and told us he wanted to make sure that the neurology team at the hospital did every test possible to rule out some of the more simple explanations for what was happening, as well as try to rule out CJD.

The hospital stay was brutal on everyone. We took turns sleeping in her room with her. Some nights were better than others, some days better than others, but she was clearly getting worse each day of the 7 day stay. There was a team of neurologists, there was a team of therapists (cognitive, speech/language and physical), and endless rounds of nurses and nursing assistants. All of the doctors asked her the same questions every day, and it made her angry every time she got the questions wrong (which she was doing with more and more frequency). They gave her a full body CT because they said sometimes cancer somewhere in the body can make the brain do what her brain was doing. They took more blood. They gave her an EEG. They gave her a spinal tap (aka lumbar puncture or LP). All of the tests so far have come back inconclusive for any disease, but unfortunately the nature of CJD is that a positive diagnosis is not really possible without a brain biopsy or, worse yet, an autopsy. Every day, though, the team of professionals told us it is most likely CJD and that there’s really nothing they can do for her. There is no cure nor is there a treatment for this horrible disease. They wanted to make sure that she wasn’t being sent home to be by herself (duh) and helped us greatly in figuring out what our next steps were.

Latest information: We have found her a residential care facility in Seattle that is lovely (relative to a nursing home, that is). The house is designed / architected for dementia residents and is therefore a very safe place for mom to be so we don’t need to worry about her wandering away at any time. The staff seems to really love what they’re doing and love the residents. We’re planning on taking her there on Monday, June 8^th.

What you can do: If you can, visit her. Expect to only stay with her for a few hours at most, but know that even if she’s not engaging with you in an expected way, we believe having friends and family around really does make a difference. Please do talk about your memories of things you’ve done together and share with her how much you love her, but please do NOT mention her disease. If you want directions to her new place, send her an email as I check it daily.