Where am I?

If you’re wondering where I’m posting these days, hop over to CPN Julie

Heartwarming

We've been going through items at Mom's house as we prepare to put it up for sale.

Tissue Alert

I held a "flash sale" advertised on Craigslist. The first woman through the door, started through the house, picked out a little bowl and an "Uv Glove" (oven glove). I asked if she did any crafting or quilting. Mom had two totes with fabric, quilt pieces, quilt blocks, and even the "Christmas Quilt" with complete blocks ready to piece the front, quilt, edge-bind.

"Oh, I don't, but my sister does. She's with the Hillsboro Elks and their 'Well Wishes With Stitches' fundraising project."

Perfect.  I asked her to take the whole supply, no charge.  Mom would be SO happy to have it go to a good cause.

Memorial Service, link to obituary

http://www.dvfuneralhome.com/obituary/bette-jackson

Friday, November 17, 2017, 3pm
Columbia Aviation Association
Aurora, Oregon

Praise for a wonderful woman

Mom passed away 2:10pm, Wednesday, November 1, 2017.

Memorial Friday, November 17, Columbia Aviation Association, Aurora, Oregon

Words from others:

(1) "Bette Jackson was an extraordinary woman who touched many lives with her generosity. She could pass through fire with her head up, stronger for the experience but never rough. I aspire to emulate her patience, her honesty, and most of all her ability to make people feel welcomed and included. I will miss her more than I can say. Thank you for your legacy, grandma. I love you always." [Brooke]

(2) "Today, the world lost one of the most incredibly awesome, kind, patient, loving, and generous women I have ever known.😭  RIP, Grandma Bette Jackson; I am glad you are no longer suffering; but mere words are insufficient to express how much you will be missed, not only by me but by our very large extended family and oh so many friends!😭 I am so very grateful we got to spend some of your last good (or not-so-bad) days with you last week!😭
This photo from 1997 represents my strongest memories of Grandma, as she was throughout my childhood and young adulthood...😭😭 

P.S.: to be clear, I am not fishing for sympathy or commentary here; I simply needed to write something to work through the grief, and once written, no reason not to share this  tribute to one of the most amazing women ever to be part of my life." [Bill III]

(3) "One of my fondest  memories of mom Bette Jackson.  Sharing the history of the many airplane ornaments on the Jackson family [Christmas] tree.  The time and love she gave to us so often.  What a gift and blessing she was to all of us.  She will always be a part of us. Love you Mom. [Julie Ann]

(4) Dearest Aunt Bette Jackson, I love you. Rest in sweet peace.

"She was beautiful but not like those girls in the magazines. She was beautiful for the way she thought. She was beautiful for the sparkle in her eyes when she talked about something she loved. She was beautiful for her ability to make other people smile even if she was sad. No she wasn't beautiful for something as temporary as her looks. She was beautiful deep down to her soul"

F.Scott Fitzgerald
[Rhoda]

(5) I only had a few interactions with her but she was always very warm and welcoming. I'm sorry for your loss and I am happy for her peace. Love you [Amy]

(6) She was so kind. And caring. And giving. So full of love and compassion.  ❤️
Enjoy heaven my dear friend and sister.  💔 [Susan]

(7) You were blessed with an incredible mom. [Joanne]

(8) Bette's pleasant smile and enjoyable conversation will be missed at the tables of CAA and our flying community mourns the loss of one of its finest citizens.

(9) Your mom was a joy and we always enjoyed her. Heaven received another angel. We are so sorry. [Mary]

(10) No words of comfort seem to cnvey my sad heart, my compassion & concern for you and all of us who feel a chunk of our heart stripped away ... and equally, my gratitude for having such an amazing woman touch my life. Please feel my arms embracing you, my dear cousin. [Rhoda]

(11) Yesterday I started a text but erased and started over with 'better' words, then erased again. There are no words, which I'm sure you've heard again and again. I've not stopped thinking of you, your mom, or her family and friends! [Rhochelle]

(12) I'm so sorry. I know that she was your friend as well as mother. So many of us love her. [Carol]

(13) Bette was a unique and caring friend. As you know, she would do anything for anybody. She will be missed and remembered.

(14)  I am sad to hear this and my thoughts and prayers are with you and your family. We too will miss Bette, we loved her like a sister. She will truly be missed. Love, her softball family [Patty]

Harpist was so peaceful

I've tested this link, and it worked for me.  Hopefully it works for you, across all platforms:
facebook.com/julie.jackson.750

Harpist in the "early 11:00 hour"

Other than "early in the 11 o'clock hour," I don't have a specific time when I will start streaming the harpist. With setup, I imagine it won't be before 11:15. But it will be available on Facebook for later viewing (I will tag Mom, so if you're friends on FB, you should be able to find it).

#ThankGodForRampInGarage especially with the front sidewalk all torn up.

Harpist tomorrow

Tomorrow the hospice harpist will play for Mom. I will livestream on Facebook, which will save it for future viewing.

Last night I called for a hospice nurse to come out to the house. Late. Close to midnight. She just seemed to be fading fast. She had stopped requesting water that morning. She was on the second or third day of not being able to really converse. And her eye was no longer focusing on anything. Nurse Juanita examined her and said, "not tonight. Probably getting close."

Today's regularly scheduled hospice nurse reminded me it's really hard to predict. I know that because my Dad (really quick) and my husband (really drawn out) were two extreme examples. Even with that caution, she thinks anywhere from two days to one week.

Pain seems to be well controlled. The number of people we've had around could be too loud, but she hasn't seemed to be irritated by noise.

Thank you for all your kind thoughts. May warmth and comfort also surround you.

More Sleeping, Less Aware

Hi there, Brooke here. I forced (aka nicely insisted) my mom take the guest bed tonight and let me be on couch duty. I'll try to catch a little sleep soon, although Grandma's snoring makes it difficult...

Come to think of it, Grandma would be mortified that I'm publicly talking about her snoring. She'd probably insist she doesn't snore! But anyone who has slept under the same roof as her in the last (+/-) 15 years will back me up -- she snores loud and often.

It's endearing.

/

When I arrived mid-afternoon today, there was a house full of family. It was really neat. We've seen a lot of family and dear friends come to visit this week, which Grandma has appreciated. She's a woman who brings people together and makes them feel welcome. In these final days, the tradition continues.

Today (Saturday) was tough. When I was last here, on Wednesday, Grandma was still able to converse with people. Today she was mostly asleep, but in her brief waking moments, she didn't seem to recognize any visitors. For instance, she called for my mom (Julie), but didn't recognize Julie when she came to help. I don't think she knew who I was at any point today.

The morning might bring a brief spell of lucidity, but overall it looks like Grandma's awareness of people and circumstances has slipped away. It's hard to see this marked decline from just a couple of days ago. I think we're all feeling heavy hearted tonight.

If you're a praying person, please offer up one for Grandma to be at ease, and another for her family to feel the tender mercies of the Divine. Then hug your loved ones and do something nice for a stranger -- the world could always use a little more kindness. It's what Grandma would do.

Unchanged

Lots of visits today, but a very tired (less responsive) day.  My brother Michael and his family just arrived from way out of town, so I hope she was just saving her energy for a good visit!

David plays for Grandma Bette

If you can see my Facebook page, look for a live video I posted of "Grandson David plays for Grandma Bette."  I don't know how to link it from the blog -- if you do, let me know.  Or post it in the comments. GO TO ABOUT THE SIX MINUTE MARK where the setting and lighting stabilize.

(Tissue alert) (Beautiful)

At home

Thank you to all the visitors, messages, calls. Too much food now! Thanks for not overwhelming us with flowers, too.

She's been sleeping a log but perks up with visitors. Some conversations are really good, some groggy, and some silly. (Incredibly long, cognizant conversation going on right now with Trish Marco and Kelly S.)

Oh, and please don't get into a fight with her drink (who is going to hold onto it). Yesterday, both people lost and the apple cider won. Lots of laundry ensued.

The hospice nurse's initial visit was very nice, two hours. She will return every other day. 

Prognosis? Don't know. She seems stable for now. Brother Michael and family arrive Friday, so they may have a good visit. 

Comfort care

We made a lot of phone calls yesterday and asked the word to be spread further in family and social circles, so I am sorry if this is hitting you without a personal call: Mom is being discharged to home this morning for hospice care. That means end-of-life comfort care. 

Further interventions will not create improvement or bring back any quality in her remaining days.

We have a lot of visitors coming today and tomorrow, so bear with me if I don't answer your calls and messages promptly. 

Yes it is sad to see her go, but we are not really letting her go?  No. We will hold the memories of an incredible woman who had a wonderful life, a woman who touched you and I deeply in different ways.

Thank you all for joining us on this journey.  More later.

Not much change

There's not much change.  Mom's kidney function is a bit lower.  So many number are better from when she went to ER Sunday: white blood cells is a big one.  And other vitals are good: blood pressure is good, breathing is good, blood sugar is under control, temperature is normal.

Yet she just flat out looks bad. And she's retaining a lot of fluid all over.

When she spoke today, she could form words better.

She is still being treated, mostly, to support the kidneys.

We will see what tomorrow brings.

[On another note, there was a CNA this evening who I describe as a bulldozer.  Mom's left leg is hypersensitive (screams) to touch, and I had to keep showing the CNA to move the right leg, NOT the left. At the end, CNA was going to lay a pile of supplies on the wrong leg, and I had to snatch the pile from her hands. Doesn't everyone know not to do stupid shit when I'm stressed?  Not pretty.  I put it in nicer terms when I texted a cousin: "She {the CNA} needs some calming energy sent her way."]

Where to start

[Since August 26, Mom has had four stays, and 24 days so far, in the hospital; not counting one four-hour ER visit.]

Things are not rosy.

Today's doctors included the hospitalist, Infectious Disease, kidney, surgeon, orthopedist. This doesn't count her gastroenterologist who I happened to hear next door, and chatted with for a minute in the hallway.

X-ray on the left knee; between x-ray and ortho exam, not a problem there.

Kidney doctor ordered albumen, which could create a big turning point, hopefully getting the protein to help the kidney by keeping fluid in the blood vessels/cells and eventually getting to the renal system; currently escaping (profusing) into the body.

Infectious Disease ordered a broader spectrum of antibiotics.

Surgeon was called to evaluate, if I got this right, why she has so much pain and fluid in the left leg. There was talk about whether she might have necrotic fasciitis in the thigh muscle, which they can't really tell without cutting into, but ultimately the surgeon just wasn't convinced it looked likely, and too extreme for Mom's condition.

She's still delirious, just sleeping, hasn't had food in 48 hours. But when I held the phone to her ear for Aunt Char to say a few words, Mom seemed to grunt at appropriate times in response to comments. Later, she listened to grandson Bill the same way; this time, she managed, "I love you." She was in an I-love-you loop for the next hour, but better than 'no' moans.

Blood count progress

The white cell counts are back in a normal range. Huge improvement from yesterday's number. So officially she's not neutropenic now. But still fighting the infection and some dehydration.

She has been sleeping all day, no food intake, no conversation, and occasional moans. Extremely sensitive to having her legs moved, or even the calf slightly squeezed. The oncology doctor ordered an ultrasound on the legs (I was NOT in the room to share that pain of that test, 'just' an ultrasound wand pressing on a sensitive area); the infectious disease doctor added an order to CT the abdomen, because she complained bitterly when he push-tested. Results: no clots in legs; nothing beyond lymphoma in the abdomen.

In other words, no answers. I'm now thinking she is experiencing extreme delirium.

The oncology doctor said she can still have chemo treatment when she's better.  Next Thursday's treatment will be pushed out a week.  The "chemical" side will be reduced by 25%; the antibody treatment can stay at full dose.

Ups and Downs

Up: Mom ate a great portion of her dinner tonight.

Down: She's very confused.

Up: White counts and platelets are improved.

Down: Bacteria of e-coli in the blood test.

Up: Not as combative as last night.

Down: She has weird dreams and carries them into "reality."

Get an email notice of new posts

New feature: you should see a "gadget" on the right side where you can sign up for email notices of new posts.

Just enter your email, then confirm-you're-not-a-robot, then go to your email for the final confirmation and you're set.

(Thanks to son Bill for pointing me in the right direction)

Paranoia plus

Saturday sucked.

Sunday was worse (I said I didn't have words).

Today topped worse than suck-y.
Mom had lots of vague commands, and anger at not having those 'needs' met. Yes, my sweet, forgiving, humane mother. Then late in the day she suddenly refused meds, refused a changeover in the IV bag and the second daily dose of the daily antibiotic. I won't detail all the arguments, counter arguments, paranoia, weirdness, and tears. But I was seriously concerned too much time had passed to keep her access port viable; it has to be in use, or else flushed with saline every hour.  We finally got to a point where she agreed to let a nurse try to flush it; it still worked after not being used in two and a half hours.

I hope tomorrow goes back to regular suck day. I will celebrate it.

Thanks, but NO flowers

Please, no flowers.  They wouldn't even make it to her room.  Flowers (and any fresh produce) can carry bacteria and fungi -- dangerous to her right now.

Neutropenia

Neutropenia is an abnormally low level of neutrophils, a common type of white blood cell to cancel infections. Mom is in-patient again because of neutropenia. Her white blood count "was not measurable." The hospitalist just told me Mom has 300 where 10,000 is normal.  But he also added there are a fair number of young (or immature) white cells, so it looks like the bone marrow is trying to manufacture them and hope tomorrow's counts improve.

(If I thought yesterday sucked, today was... I don't have the words.) 

Sorry, visitors are not advised. She is very immuno-compromised; I have to wear a mask too.