Friday, November 21, 2014

Hello Day

No napping and napping and drama everywhere...So here is a bit of the other part of our lives..:)
Lynsey has learned to whistle..five years old is a very good time for is 6:30 am before school.
She does not seem to mind at all the pillow thief..everyone sleeping soundly.
Dylan at the apple farm with Auntie Em, looking quite like his older brother!!
Pigs in the background.  They must like apples too
Evan getting his big cast cut off and a smaller cast attached. Quite the fascination as a saw cuts the cast and misses the skin..

Mr. O'Quilts has not been out of bed for almost two months now. 
 I want to scream...Get out of bed right now...come run with me in the wind.  Let's dance on the back deck...Lets hold hands and walk in the woods.  Let's quarrel about where to hang a picture or how to plant a rose bush.  Let's do the retirement thing like we planned...
Alas, he is paralyzed and he cannot..
.He wants to do it too...just like me.
Accepting life as it is and carrying on, it so tough sometimes.
Enough, enough..I am going to sew something right now.  I do not think I will be able to catch up on holiday sewing at all..
Marie..this is a picture that forever I seem to identify with...

And today's post from
I would love to live like a river flows, carried by the surprise of its own unfolding.

by John O'Donohue
"Fluent" from Conamara Blues

Wednesday, November 19, 2014

Flannel Pillowcase nauseum

The morning's gratitude.  I got up at 6 for the 4 year old's bus which was 45 minutes late...but the kids were dancing to music in the car and I just had to laugh.  A few minutes later, I was back to the bus stop with the other two grands for their 7:20 bus.  The crisp autumn air with mist and could a person not feel wonder. Back to check on the Mr. sleeping peacefully in his bed and back to bed myself..a rainy autumn morning, perfect for another snooze.
That was yesterday, this is today.
Still good.  Update on my dear man is called plateau...mostly.  ALS does that.  It plateaus and then it crashes and then it plateaus at a new not so nice level.  That is where we are at now...However, I noticed that when the Mr. lifted the cup with his right hand...the only functional limb... his hand shook.
 What is that what is any of this about.
Deliveries from the UPS truck and the Fed Ex truck are constantly at our door.
 No, no more exciting fabric arrivals..instead, Hospice supplies.
What..what was that...OMG  Really...did UPS  enclose red wine and M&Ms with the feeding tube masks..Really...? (pen inserted into hole on keyboard for question mark)
 Lucky me.

Tonight Charlotte will have 18 degree F temperatures.  We have covered the outdoor faucets so the pipes do not freeze.  This weather in Charlotte is a really big deal.
I really want to go to a retreat. Now is not the time, but that doesn't mean that I do not want to go.  I also want to go to Target..It is all the same.
My man wants all the room doors open now.  He feels quite claustrophobic as he can no longer move his limbs and is so dependent on others.
 He never complains...
I, not only complain, but I publish it for all the world to see....
We are quite a team, are we not!!!!!

Now, really how could Mr.O'Quilts not just love the new pink bird pillowcases I made him...just for his comfort.  The CNAs are rolling their eyes...but my man just smiles

Saturday, November 15, 2014

Blue, Rose or Pillowcase

Here are the pillowcases so far...or the therapy cases...Voila..the kitties...actually, it is Hello Kitty's boyfriend..Did you know question mark...or maybe no question!
 "Frozen" for Lynsey and I am going to put it on her pillow tonight.
 Owls...who couldn't like this..
 and doggies..
 Last night I was beside myself with my stupidity at making the cat pillowcase wrong again. 
Then I saw this advertisement. ( pillowcase tutorial )
Why in the world would the magazine print a wrong question mark...So then I said, "chill, Diane"...just chill...over the right and wrong way of pillowcases...I mean, really.....Do you not have other priorities....
.( Does anyone has a question mark key for my Compaq keyboard)
I am nuts!  When I read this just now,  Barbara Brackman's post...
my heart started beating and I got the itch to make more quilts. Then I got anxiety because I am old and I just may not make, as many quilts that I am desperate to make...
Then ...well...just then...What is a quilter to do....
My dear man is sleeping in the room right next to my sewing room.  When I open the French doors, we are together...each of us on our own journey..but together..for now.  There is some comfort in that!!

Tonight I cannot sew or think.  Himself is now connected to his Trilogy breathing machine looking like he is in outer space. I think I can carry on...but not sure if I can keep calm and carry on...
His family has now gone back to Ireland, promising to come again.
It is just so hard to grasp that I am only in charge of myself and my own journey.  I hate being powerless.

Making pillow cases and giving them away. I am way past the blue or rose periods...gone right straight into the pillowcase period.

Friday, November 14, 2014

Love Languages

  When I was working with families, I sometimes used a book called, The Five Love Languages.  It is about communication skills and how to nurture folks in the way they receive it, instead of how you feel that they should, etc.

Today I think that my love language is fabric...Ha!! Ha!!
 If you are not a quilter, u totally will not understand.
 But, then this blog is supposed to be a quilting blog after all!

From Beth  came this chocolate:)  After all, I love all kinds:)
xxoo Beth
From Ita came a lovely Irish tea towel..that could be used for just about anything creative. xxoo Ita
And treats...from my neice, xxoo Brenda

Of course there are other kinds of sweet love too. Pumpkin is 15, Dylan is 4.

Today's update: My man continues to lie weak in the bed. There are so many people in and out of the house that when I went 10 minutes to Walmart today, it was time stolen.
Today we had the Hospice aide to bathe him, the CNA all morning to care and feed him, the respiratory therapist to check on the Trilogy breathing machine, the ALS nurse to bring the Cough Assist machine and the Hospice nurse to make her visit.  When the ALS nurse started teaching how to use the Cough Assist machine, my sister and the CNA were attentive. 
The wife here had to go outside to breathe fresh air, feeling dizzy as usual.
 We have so many machines around his hospital bed and so many electrical strips plugged to the max.
 I hope the house does not burn down.
The respiratory therapist said that her husband had ALS.  He lay paralyzed for 2 years, but then not to worry..... as every case is that is some solace.
  I am still eating M&M's instead of Valium.
 It is very nice to have Mr.O'Quilts family visiting from Ireland.  It is a loving boost for all of us.
Tonight all three grands are going to a free Karate camp from 7 to 10.
Should I make potholders or go to dinner with the family..The CNA is taking care of the Mr.
Dinner was lovely.

I want to hug my man, but I cannot as he is surrounded by machines.  I can blow him kisses...and his blue eyes can still twinkle and that is good.
 My daughter is dealing with this with aroma therapy...a different cure in every room!
 The dog is dealing with it by sleeping all day...good idea Zoe!
We are still blessed that tomorrow is a brand new day.

Tuesday, November 11, 2014

A Day of Carolina Blue

Feeling the gratitude...of Mr. O'Quilts having everything possible for comfort on his journey.  Of, having my sister and daughter around for laughter and fabric loving and care giving. Of knowing that my grandchildren are safe and sound and so loved.  Of watching the colored leaves glimmer in these days of Carolina blue. . Of friends lifting me up out of despair into the light.  For family traveling from Ireland to encourage us on.
 A big thanks to Katie and Muggs for the wonderful gift of taking the children today....a gift worth a million dollars on this teachers' work day.

Here we have Dylan, age 4 helping Aunt Emily prime the pump for Granddaddy's tube feeding.
  Care giving is a family affair.
 The HSTs (half square triangles ) from the other night on the design wall to cheer me up.
 And, one more pillowcase:)...On Black Friday, JoAnn's fabric usually has a huge flannel sale. Two years ago, it was like $1.88 a yard.  Last year, it was $2. 29 a yard.  We usually go in the evening when the crowds are all home exhausted, shopped out, eating dinner.  There is no one in the store.  It makes shopping a pleasure:)
Opiates for my husband; Pillowcases for me; children with friends.....a lovely day.

Sunday, November 9, 2014

That Ripley Thing

My dear man has not had any food by mouth for a month.
 He also has struggled drinking water. 
 Believe it or not, 
Today he started back on his mugs of Irish tea.  I was so delighted.  It is a drop of normalcy. 
 Now I was never much into the normal thing..ha ha...but believe me now I crave it. 
 So delighted to see Mr. O'Quilts putting down that Barry's tea today!!
Jo came to visit me the other day with dinner...look at the prized piece she made and gave to me!!
 xxoo For sure a gift of love.
 Tonight I was trying to go through my mess.(again)  I came upon some hand dyed charms...probably from forever ago.  They were screaming HST.  So I made them...just have to do a bit of a trim.
 I am just too tired tonight.
 In my mess, I also found a Christmas ornament from a years ago Christmas sale.
No, these are not cookies, they are felt cut outs.
 See how cute this is. Lynsey insisted it was a reindeer from the movie, "Frozen"  sigh....Don't you know that Grandma?? (I just discovered that it is the question mark key that has flown from my keyboard across the room!!!  I just had to do it with a pen.  That slows down the typing process  lol)

 So exhausted me tonight gratefully shares... a bit of the good stuff:)

Saturday, November 8, 2014

The Day

As I am still in my pillowcase phase, Evan mentioned  a friend's 10th  birthday party coming up.  He said that his classmate really really liked the Carolina Panthers and would I make him a pillowcase.  We decided on a fleece pillowcase as all my grandchildren love theirs...Voila...present made in 15 minutes...
If all of life's problems could be solved like this!

I just cannot believe out of control today.
Bday party invite for the 5 year old, karate for the boys, my sister overwhelmed and needing a day off, me crying over nothing,  cat throw up dried onto karate pants noticed just as we get there...a roach on the floor, my man's feeding tube leaking all over the bed and Emily and I together cannot change the bed,  so we have to wait 4 hours for the new CNA who is 30 min late.
 Me deciding to get a grip by cleaning my keyboard.  I flicked off the keys to get at the everlasting cat hair...and.....a key flew into fabric space...never to be found again...
And, now Tuesday is a teachers' workday...jeeze louize...
Training a new CNA...OMG
Then I overhear the regular CNA teaching the new one:
The Mister....very private, very calm in the bed..knows what he needs, likes to watch sports.
The Wife...high strung and emotional..bring her a glass of red wine as soon as you get here and then she will start sewing.  Once she starts sewing, she will be ok.

Friday, November 7, 2014

Mr.O'Quilts...Happy Birthday to you!!!

To the Mr. from the Mrs.
xxxooo I love you so.
A few folks dropped by....they just could not help themselves...My man is such a prince.
 And you know, he always was turning the tables and praising them...That is who he is!!

 Hugs right back at all of you!

Thursday, November 6, 2014

Humpty Dumpty Changed Up

Oh, are the knowing kind of friend...sending fabric to cheer up sad times.!!!  
I just love all of it!!!
 The other night I had the grands pick out fabric from my stash for Christmas pillowcases.
Immediately, the next day they asked if they were done yet???. 
 Well tonight I did them...I think I am in the pillowcase mode for sure!
Lynsey's Christmas kittens...
 Dylan's patriotic snowmen...
 Evan's blue Santas...
I think I will put them away till after Thanksgiving.
A person should never take Humpty Dumpty literally...
Because it is all about emotionally falling apart, and it really can be put back together again...can't it??

Last night the Hospice on call nurse had to come to give my Dear vitamin K.  You see, his Coumadin was too high and there was some bleeding going on that was not nice!
  Who needs that when you already have blood clots and ALS.??
His nose is all bloody from the Trilogy mask he has to wear at night to breathe. 
 The latest thing is a 24 hour opiate patch to help with the breathing.  It is really working so that is nice.

Sometimes when there is stress, just one little piece of straw can make the entire haystack crumble.
Tonight one of the CNAs decided she was giving me 36 hour notice that she no longer was going to work Saturdays and what had I planned for that??? OMG
 Sirens always remind me of my mother because of her poem..and the way she died. Believe me there were plenty tonight.  I could hardly get out of the Karate studio with the kids when I saw car accidents everywhere with police and ambulances...,
Then my girl called.  She had taken the four year old and the dog for a run in a wooded path where she dropped the keys to the car.  It was the wheelchair van keys and the other keys were locked inside the car.
It was getting dark..OMG...
I do not seem to be able to brush things off lately...I feel sucker punched by everything..

 Stephanie...the reliable CNA decided that I needed another glass of vino tinto tonight.
Once Mr.O'Quilts was settled, she ironed the pillowcases for Emily and I...

She has become a convert. She too is buying a sewing machine... and off we go.....
Thank you Jo for the dinner tonight...and Michael for the awesome birthday present for my dear man.

Tomorrow is his birthday.  I am so grateful that he is still here with me.

Tuesday, November 4, 2014

The Stabilizer

Lynsey has been invited to her first friend birthday party.  A six year old in her class has invited the entire class to a craft party at a store.  The children in the elementary school are mostly from well financed families.  Sometimes I feel that the children have so much, that there is nothing I could get I made her a bag.
The stabilizer.  I used to machine applique from the seat of my pants kind of way.  But, I have converted to a stabilizer.  I like the wash-a-way..just put it in the sink for a few and it has all evaporated.  Our Lynsey approves of the present.
 It is just a funky bag for a 6 year old...Important features..."Frozen" fabric, name on it, little pockets inside and Lynsey approves.
Someone I know goes to the beach for half of her life.
Even though this is a Halloween boat, I think the sea is stable..I mean candy corn:)??? Really?
I was going to be clever as clever could be and name this post the Stabilizer because I just knew Mr.O'Quilts was what level(:  but still stable.

But then, the Hospice doctor and his team made a home visit today :) 
 Why do people not just leave me alone in the land of denial??.
  I have told you before, it is my favorite vacation spot. 
 But, oh, no....I need to be told all the grisly details of what just could be coming down the pike.
I am told that 60% of ALS patients with feeding tubes aspirate and it is down hill after that.  Do I really need to know this??  And, I was told that there are no answers to ALS.  It could go quickly or plateau.
His insides are paralyzed just like his outsides...ugh  This makes bathroom an issue.
He will now be on a 24 hour morphine patch for his breathing.
Good things...
He has a great Hospice team.
He has no pain.
His eyes are still blue.
The Ativan and morphine and sleeping medication are working.  He is mostly awake in the day watching television.  He is still weak and unable to chat, but I will take that as long as he is home.
 The CNAs are way worth the trillions of dollars that I pay them.
Now who is not stable???   I wonder!!
It is a huge effort for me to be stable and not look for the next trauma...just to stay in the day.
A huge effort.
Who helps me along??  YOU.
Thank you for the comments, for the love, for the support, for your words and your gifts, for the fabric, for the gift cards, for taking the kids on outings, for the money in the fund raiser, for the food on my front porch, for setting up Take Them A Meal we do not have 3 meals at once on the porch.
  Thank you for fixing my car and moving furniture, for doing the yard, for the emails and cards and coming to quilting.  Thank you for taking the kids to karate and helping with homework and doing errands.
How can I thank you???  enough??
I can't.
Guess I will just have to play it forward someday when I am able.

Saturday, November 1, 2014

Case in Point...

The Hospice nurse wants my beloved to be turned in his hospital bed every 2 to 3 hours to prevent skin breakdown.  So I got a king sized pillow to help support that process. 
 What does a quilter do in this... case??
She makes a new pillowcase from IKEA fabric:)

Well...ha ha...and interesting..Barbara Brackman treated us yesterday with her.
.Scary Stories.
 Very interesting post on antique quilts gone wrong:)

And, I think that this is a James Joyce quote:

"Fear knows it is not a welcome guest, so it takes all kinds of disguises."

In our case, I think the main disguise is exhaustion...absolute exhaustion.
Thank God for Ava and the CNA's...One of them is working away and my daughter, sister and I are sleeping away...Kids visiting relatives and it is a cold rain outside..The best for sleeping.
We cannot find a Sunday CNA.
Explained to my man that our exhaustion is not from caring for him, rather the emotional exhaustion from his illness...and if I did not care...I would not be feeling this...Nothing to do about it...just carry on.
Saturday nurse says that this is not a case of blood clots but ALS progression.
 How can this be after only 16 months diagnosis??
Denial is a powerful defense...protecting the psyche from what it cannot handle.
 I seem to be the only one in disbelief.
Looking everywhere for the brave wife........
"The Case of the Missing Brave Wife"!!!

Thursday, October 30, 2014

The Right Wise Old Owl..

Last night Marie brought me some owl fabric as a gift...You know fabric can make even a sad heart sing again.  Tonight I took 30 minutes and made a pillowcase.  My mother considered herself a wise old of course, as her heir...I thought I could be one too!! 
 And then the pillowcase came out crooked...owls facing the wrong very me!!...cough!!  
I have decided that the pillowcase should now be on my dear man's bed.  He is really the wise old owl and he does not care if owls are crooked.  That makes him even wiser.
I was already labeling this post "Grim".  Now I am changing it.  We decided to follow the Hospice nurse's advice.  We gave Mr. O'Quilts morphine and the special Hospice Ativan. 
 Now, he is breathing a bit better and more alert. 
 I just hated to do this...but they were right and I am grateful.
Maybe the wisdom is in trusting those whose specialty is is not yours..instead of stubbornly thinking you are right...(not me, of course..must be...himself)!!.
Now the Evan update:  He has managed to use his 9 year old wit to do the I-pad games with one I think he is feeling better.
Again thank you so much for your supportive comments..pls forgive me for not answering them.
Thank you for the friends who are dropping off food and other generous contributions to our crisis.

Wednesday, October 29, 2014

All day, All night, Angels watching over me....

I am now convinced about the angel thing...
Oh, my.  As if we did not have enough going on today.  A phone call from school for Evan, age 9..via monkey bars...a totally broken wrist in two parts.
  All day again in the hospital.
  In fact, I saw some folks from the previous visits who recognized me...!!
Seems that I am frequent flyer, unfortunately. 

So brave is my oldest grand in his Carolina blue cast...
 And, come on...didn't the doctors and nurses say that he sang Disney songs along with their I-pad all thru the surgery!! ha!.  He remembers nothing.
Hemby children's hospital ER is awesome...not to mention our dear Dr. Lee...who seems always to be there to rescue us when we need him so.
I left the house this am at 10:30 and arrived back at 5:30.  A quick Hydrocodone to help my boy with his pain and a quick kiss to his 5 year old sister who was totally jealous...Lordy..
And, then a peek at my dear man.
Oh, no...he was not well.
 A call to the Hospice nurse.  Morphine for the first time help with his breathing.   He seems to tolerate it with no side effects and is a tiny bit better.  He wants me to sleep on the sofa with him tonight..
.So we have one sick upstairs and one sick downstairs and...What can I say???

A big thanks to Angel Ava for finding these CNAs for me.  I now have hired help for 8 hours a day with my sister filling in.  TBTG
And Angel Ava sent a yummy dinner...just in the nick of time.
 My man is just not himself, he is just not well.
We also have on board the door guy...Andy.  One door is complete and the other to be done tomorrow..Angels galore.  I am so grateful:)
One bit this week when I was actually able to chill...I saw these interesting clips...check them out.

Monday, October 27, 2014

He is Home!!!!

No pictures of him home.  Just smiles and hugs and relief. 
 He is still very sick and weak, but he is home. 
 Short post cuz we are all exhausted. 
 He is home on tube feeding only, nothing by mouth. He is home with medication 7 times a day crushed into his feeding tube.  He is home on oxygen.  He is bed bound.
We love him home.
We are trying to move the bird feeders to a place where he can watch them.  We are interviewing help well recommended by dearest..(ava)
A big thanks to Laurel for sending the children books.
.AND for what I found in the middle of the package...just for me...
Organic M&M's!!! 
 Thank you Laurel!!  My man is happy that you have taken care of his wife:)
 There was a book in the lot called something like...Gross Jokes....I can see Evan..age 9 all en--grossed in reading!!
Thank you Muggs for taking the kids today to Karate and to your house for dinner and baths and reading.
It helped so much on this scary first day home.
Packages galore came from UPS...heart beating( fabric..
Hospice supplies..Ha!!

Sunday, October 26, 2014

Cousin Joe Saves the Day

Is it happenstance or the hand of God?...You tell me!. 
 How could it be that Cousin Joe from Dublin would just happened to be working in Raleigh this week and could drive down for a visit during our crisis??!!  He has been the best.  He has taken the grands for a long walk in the woods, he did the dishes just like Nora taught him to, he helped rearrange the furniture in my man's room for tomorrow.  And, he is going to stay tonight and help with discharge. 
 Yup, Mr. O'Quilts is coming home tomorrow!!!!  That is a very good thing.
The Hospice nurses have promised to be on hand at all times to help him and to help us.
 Last night my sister took the kids to the big Karate Trunk or Treat party.
  Look what they came home with and it is not even Halloween yet.  They are all in bed.....hmmm 
and... I have already eaten every single one of the Butterfingers:)
 Here is my cat, Pumpkin with her friends...This is her kind of season!!!
 My new ironing board cover..all duct taped down with the help of Cousin Joe and my sister:)  The stains just would not bleach out of the giraffe one.
And so it goes.  My dear man comes home tomorrow after two weeks.  Ambulance transport is set for 12:30, Hospice home admitting nurse comes at 1:30.  The next phase begins. 
 He is struggling.  There is no change. 
 Cousin Joe and I visited twice today for 10 minutes each time.  My dear told us that that was too much.
  He is so fatigued.  I hate blood clots. 
 They are the complication that we did not expect that have aggravated the ALS.
Thank you for all your comments.  I hate not to reply when you all have been so good.

Saturday, October 25, 2014

What to do?? What to do?? She frets.......

I am home from a 6 hour bedside stint at the Hospice bed.  Himself is sedated with Ativan so there was no communication.  So, I slept too.  He is too weak to sit up by himself, never mind to get into his motorized chair.
 All medical votes say that he will be bed bound forever and ever and ever.
So, I am home eating a yummy dinner left by Andy on my porch and thinking.
I am thinking. Now I have a stomach from thinking!!
I started to read an online article about death in ALS by blood clots when I caught myself.
 I cannot go there. Before I go back this evening, I am going to get out a quilting UFO to focus myself.
My man is ripe for infection with his weakened state.
I am not sure it is good for me to sit and watch him sleep every day...but what to do??

Maybe I will wash my ironing board cover??
 No...I will use these saved treasures to make bags??
 I took out this UFO project box...too much trouble(:
 I guess I will just go back and visit my Rip Van Winkle.....

Friday, October 24, 2014


In polite company talking about money is so not okay.
 I am way past polite company at this point!!
Even though my dear man has saved for his retirement and we are debt free, we are at great risk with a catastrophic illness.
 Getting my politics up again...again.
Just FYI
In America, Democrats, Republicans and Independents alike get ALS, Parkinson's Disease...etc..So in the government, working hard on legislation for catastrophic illness would be much better than all the infighting for control.  
Whew...I got it out...again.., just sayin'.
Friday's update:
Depression.  Himself is now sick of being sick.
He is depressed, anxious, sad, scared and claustrophobic. 
 I cannot wait to get him home for some non institutional TLC.
We are ordering a batch of Prozac or about a very large family bottle!!
(but I do prefer vino tinto)
Today I found out that Ensure complete along with Benecalorie...(formula for his feeding tube) is costing us $420 a month for his feeding alone.  Medicare will cover the Ensure through Hospice, but the extra is $180 on us.  He is loosing weight like crazy so the Benecalorie is important for him to live.
We have now hired a CNA for $16 an hour...He will come 4 hours a day for $64 a day for 30 days is....$1920 a month.  We may need him more.
Now I just buried my mother 5 months ago....and as you know for 12 years, she paid $5000 a month for her care...every bit of the sale of her house...and every penny she had.  That is more than 1/2 a million dollars!!!!
She died just in time to be out of money...
WHY am I going on so?????
Not that we are destitute and need money...BUT for all to know.
I didn't know all this before it happened to us.  Education is important...but then, maybe I still would not have paid attention to the money.
I totally have my Mama Bear up...I love advocating!!!  Mr.O will have the best, believe me.
But why should I have to fight for the human dignity when ALS is already enough.
Whew...I am a mess since my organic daughter is visiting her man working in Minneapolis...well I just decided to indulge!!!!!
I so love my support system..You all..
and....chocolate ice cream in a waffle cone with chocolate sprinkles!!