The Visits that save our days...a no quilting post

The boys came back tonight...now it is an every Monday night thing. 

 See, here is Mr.O'Quilts awake enough to practice speaking with his Dynovox speaking machine..

 Evan asked to have a visit with his father alone without his siblings. 

 Here we are this afternoon at McDonald's play place. 

 His dad brought him his favorite thing...Legos.

They had an hour or so of fun making it together.

 People struggle to understand the concept of the visitation belonging to the child and not the parent.

Children own visitation. They have a right to regular supervised visitation with their parents..

I am exhausted.  

I am just putting this out there without quilting so my dear man's relatives can see that My dear man has swung back around from sleeping away his weekend.

He is still alive, I am still alive and hopefully we will all sleep peacefully this night.

Cotton and Steel revisited...

With the children away...Grandma should play??.

Instead, I did nothing.  I slept and sat in my recliner by Mr.O'Quilt's bedside while he slept.  

I read a mystery and dozed off. I guess my To-Do list will still be there later.

Tonight with my little darlings asleep, I got the mojo going. 

 Cotton and Steel, you might say..

I have a girl friend who is absolutely  Cotton and Steel.

.Because of her, 

I started piecing the backing...in hopes that I can get it basted on Wednesday night.

Randomly piecing a backing is so much more fun

 than following a pattern of someone else's fabric and design.

Grateful that I have some clarity after a weekend of rest.  Voila..backing process.

The weekend update on my Dear Man.  He slept the entire weekend..

While you were sleeping Dear..your neurotic wife got online and Googled ....

 ALS  and symptoms of respiratory insufficiency.

Mr. O'Quilts has:

Orthopnoea...shortness of breath while lying down  

Dyspnoea...shortness of breath when talking or moving.

Disturbed night time sleep

Excessive daytime sleepiness

Difficulty clearing secretions

Difficulty swallowing

Inability to eat or drink through his mouth

Fatigue

Depression

Poor focus and concentration

Nocturia..more urination at night than in the day

A weak cough

Sweating

Difficulty talking.
Almost complete paralysis as he lies in his hospital bed.
 

So why?? did I have to Google this?  None of this is good...none at all.

So what to do about it...absolutely nothing..that is the problem..ugh

On one of the sites there was a Caregiver helpline...It said...caregivers must accept what they cannot change...again..again and again...

He does not even have to mouth the words anymore to me...

I know them....Go Sew...

Start...Stuck...Done...Repeat

Here is my latest UFO found buried deep deep deep...London Olympic quilt...2012

Ha ha ha...I do believe that some of our ancestors did this too.  

And, we go around trying for that perfect dating system!!

Now that the granny  block quilt is basted, I vowed to put the next WIP up on the design wall pronto.

Motivation!

Muggs' sailboats...one late and one early...gotta love them all.

 

My heart started thumping again...a bit...for Cotton and Steel.

I decided to work on the backing..These colors are grand.

 Just read this...

5 reminders of finding strength in grief

My darling says he is not in pain and not frightened.  He is just sad

He says that he is worried about me and the children and can do nothing about it....

 I am sad and worried about him, and can do nothing about it...

We accept the disease and the sadness and take care of ourselves.

I know that this is not brilliantly new news...but it does take awhile to get around the bend.

He took some morphine last night for his breathing and swallowing.

I ask how breathing and swallowing is for him...he answers...bad, bad, bad...

Moving on to ...presents...made..
Thanks to Annette at the local ALS clinic...flower  pens for teachers' presents. Annette has them all planted in a flower pot on the counter at the clinic..cheering us on..

 All from the dollar store...plastic flowers, pens, florist tape and a bit of electrical tape for the end.
The kids were thrilled to give their presents to their teachers today.

 A Lego birthday present...IKEA tray with Lego board and Gorilla glue...
wonderful to carry that special Lego project around.

 Breakfast with my girl today (2pm) and tomorrow a workshop on Youth Violence
Gotta get those CEU's...although I really do not know how I will stay awake...really...
Our update.
xxoo

Just Do the Right Thing...

Amongst the daffodils is the granny top finished...Thank you all for the feedback.

Doing the right thing is so hard sometimes...but the rewards are oh, so sweet.

My daughter-in-law is turning 30 on Wednesday. 

It coincides with her one year celebration of being drug free.

Today she spent the day with her children at my house.

I was exhausted and the kids were thrilled.

But..then...after all day, her friends were having a surprise birthday party for her.

I so would have preferred to crawl into bed early..but....

I drove her home and the kids and I hid in the back yard to join in the surprise.

Lynsey told me over and over thank you for letting them go.

She is doing so well.  She has 11 roommates.

They love her so much that they put on this party.

The rainbow behind the clouds.

My mother would be proud...lol.

My man has been in bed all day on this dreary Sunday.
He is still able to whisper the words to tell me to go sew.
And..to put his two cents in on occasion!!

TBTG

Going to bed now...a wonderful day after all.

One more of those totally personal posts ...no quilts

Mr. O'Quilts showing off his new collar...Now my man has been collared before...but by choice!!
In twenty months...from tennis pro to this...My very brave dear man.

 His mood remains positive and loving...

Sitting outside this morning,  memories engulf me...On the left there is a haze in the distance over the pond,the air is crisp and I feel it is Autumn and we are driving north up the coast in California.  Lovely...Then I hear the grass being cut in the field next door..and smell the freshly cut grass ..That is beloved spring??  Looking forward some trees are bare and with the crisp air,I think it is autumn again, in northern Virginia the apple season.  Very relaxing...I love autumn....
But, to the right the pear trees are in bloom as are the daffodils and tulips..Spring..
I am confused,  That is not such a rare thing now-a-days. This morning is a comforting confusion.

I am reading a book I had wanted from the library.  A Three Dog Life, by Abigail Thomas.  I heard good things about this book.  I want to, need to read a book that I have heard good things about.
I did not know what it was about.
Now I know.
It is about living with grief.  I cannot put it down.
In spite of myself, I fell asleep in the sun..red faced with warm diet Coke...it is now summer:)

My man is stable in his condition.  We are celebrating that good news today. He was lying in his hospital bed, attended by Stephanie, his caregiver.
I was reading in the sun, pondering life. He has now joined me..but he does not ponder.

Several excerpts from this book attract me:
About a storm and a dock coming loose in the waves..."How great to be enjoying the ride, however uncertain the outcome". and about aging
"being cautious is new territory; my specialty was leaping, not looking".
I loved the book so much,,the articulation and writing style.  I thought about buying and owning the book, but my book buying days are over and this one is a library  book.. my new book venue.

Now that I have finished reading my new friend...I feel that lull of what to do next...as my dear man has his chest shaken in a vest before he eats into his stomach tube.
Life is such a strange thing.
 What if we had moved up to the mountains like some people we know...
Retirement barely started here...we are 20 minutes away from one of the 5 best ALS clinics in the country. Crazy life.
From relaxation back into worry.
The caregivers now say that my man is dead weight and now requires two people to move him in bed.
  I cannot bare to even think of where this might take us..

Better to just sit in the sun today.
xxoo

Skidamarink a-doo

Thanks to Aunt Maura we have one St Paddy's Day pix!!  Irish socks:)

For some reason, I can do nothing.  I think I need a Sit-and Sew to organize myself, I need to be able to get to the pool, a need a fire under me...I am just sitting here looking out my sewing room window at the blue sky and my bottle tree,,,,with a long list..and I do nada...

.Lunch would be nice, but I do not feel like making it. 

Maybe I should just sew some strips together instead of focusing on finishing anything...
Kids update:
One in bed with nose bleed
One in bed with a stomach ache
One crying because the boys get all the attention and that is always her poor life!!
Next day at Urgent care with 9 year old...Strep in the throat and Strep in penis...Really..just really!
He is home in bed with Mindcraft..

 Here we have a poorly lit border example...with a dark teal binding..it might work.  I am not too invested in this UFO, Granny/Album...so it is time it was done..
A quilt is not finished until the binding is on!!!
I am kind of stretched thin today..waiting now on the buses instead of the nap.
The latest of the latest for my dear man:

The neck brace, as the muscles in his neck are now weak.  If he is able to get into his wheelchair from the bed, he now needs this to transfer to support his neck.
Good things...Our Wednesday night quilting group had a great time.  Jean was here, a big deal since her radiation, and chemo, etc.  She helped me organize my stabilizers..I have a tendency to just go buy more instead of foraging in the mess bag..Thank you Jean...we have missed you mucho.
I was able to have lunch with my pool friends the other day.  I met a new friend there whose husband died of ALS two years ago..It was great to see someone who has actually survived this horror.
Thank you  all for your emails and comments and packages and notes and support.
Thank you Declan for coming and making such a big difference in our lives.
.Too bad immigration from Dublin to Charlotte for you and Geraldine is not in the cards.
xxoo
Skidamarink a-doo  

The Perfect Day to Chill

The lovely relaxing rainy day..JoAnn's fabrics has a sale today and tomorrow..25% off all fabric..sale and not sale...and you can also use your 50% off and 40% off one full price fabric.  Now, I only went to LOOK.

.I mean I did need to get out of the house for some respite...hmmm

I so so so loved this..I would never have paid full price...but with all the discounts, I could not walk away.

I am trying to border this quilt with

very little success.  I guess I will 

just leave it plain on the design wall 

until another idea hits me.  I am having a hard time pulling my fabric

out of the shelves.

The fabric is so tightly packed in...I really need another shelving unit!!! 

 Sewing, nodding off in my reading chair, looking through magazines!!

A perfect day.  Especially with the grands at their cousin's house.

 Here we have the saintly Uncle Declan in from Dublin for a week.  Who else would try to teach a five year old and a six year old, the names of the pieces of chess?

He is so helpful.  He learned in one minute how to put on the breathing mask,  he sits and reads in the room while Mr.O'Quilts sleeps. he walks the children to their buses in the dark with a flashlight..which they think is an awesome adventure.

The latest update on Himself is new machinery.  I just hate it when new machinery comes, because that means that my dear man is getting worse.  Now he has a Sip and Puff and he has a vest.   The vest wraps around his torso and squeezes the phlegm from deep down to be suctioned out.  It shakes his whole body and exhausts him.  He is supposed to do it twice a day separate from food....I have not watched this yet...Really, it is way too much.

Actually, just posting this makes me want to go sit by my fake fire and read again..
It is.too too much.

What a Day for a Daydream!!

On every Black Friday...I get so excited about their flannel sale that I feel like I am going to Las Vegas instead of JoAnn's fabrics.  This last time, I got tons of flannel for $1.24 a yard with my coupons.  This fish flannel was going to be perfect for a certain anniversary.  Until today, did I not realize that the anniversary was in May and today was already 83 degrees in Charlotte...The pillowcases were were preemptively delivered tonight!! No one uses flannel in Charlotte in May.

The Hospice nurse visited today...Jeeze Louize these women cannot keep  their hands off my man!!

The kids were all over the stethoscope and pulse taking..Caregivers in training.

Uncle Declan is taking them to Karate...TBTG
While we were having a quilting group here, Mr. O'Quilts and his bro were working on the Dynovox speaking machine.  Our ALS clinic had it in their loaner closet so we gratefully did not have to buy it.
There is a little dot on his eyeglasses that types and reads word that speak for him. With some practice he may even be able to text someone.
How very lucky are we!!

 Everyone has their thing...A perfect picture here..: Christmas M&M's in a Halloween tin:)

 xxoo

The Serious Side

It is the time of the year...

With all the Irish hoopla around here for 37 years, one would never guess that my background is Swedish.

Well...here we go...Bro-in-law O'Quilts, Declan has arrived from Dublin.  He will be staying for a week to visit my dear man. Oh, Lordy...He has not even been here a day and he has already changed light bulbs, filled bird feeders, listened to me moan, fixed a table..so much help. Today, outside, it was 82 degrees in Charlotte..The boys skyped another brother, Kieran in Galway...so nice.

 I am so worried about my  granchildren with another loss...called ALS.
So Guess what?? From an online ALS caregiver support group came this great information:

Hope Loves Company

It is a non-profit company to help support children whose lives are affected by ALS.

I signed up for help for the three grandchildren who live with me.

They sent a book and three teddy bears.

We read the book last night and each child went to bed with their new teddy bear.
9 year old Evan was out and about for this picture.
 Here they are now after school, taking their new teddy bears for a ride. Nice to be 5 and 6.

I ordered this helpful book online on Amazon.

Just gotta accept and get with the program..Of course having a great support system to lift us up is worth millions and millions.
Last but not least....Look at the cute bird fat quarter the obsessed found at Hancocks!!!

 

Little Blue and the Happy Bee Day

Little Blue (Kenmore mini) and I had an outing today....to celebrate the need for self-care!  With my arthritis, she is all I can carry in my little Walmart cooler..

.She is the same weight (11 lbs) as those little black expensive specials....:)

The "no think" work I always have with me on these occasions is shown here..

Scraps are so much more my style. I just emptied my box of 1.5 inch strips with  some red squares and I am always good to go.

 Today, I so wanted to go back to bed for a cozy sleep after the early school buses..

But, I made myself get up and go to my morning bee...It is called the "Queen Bee"!!!
Obviously a play on words..so much more fun as Charlotte is known as the Queen city.
In the spirit of no moping, I wore my bee necklace.

 This little gem is a pin that my mother won in a game in the assisted living facility where she and her Parkinson's had lived for 12 years.
When a resident died and no relatives claimed possessions...the loot was put into a box for winnings at Bingo..or my mother's favorite, an auction...with play money they were given by the facility..
My mother "won" this lovely.  I think it is adorable and wear it on a chain.

 My bee day was already going to bee good one, I could tell.

My friend Ellen was there...She is a known artist in our community.  She was making her grandchild a super cape out of this fabric she had had on the shelf for 20 years.
I think you know where this is going...Fabric hoarder that I am, I just could not let it bee, she allowed me some of it and I took this fat eighth...
You see, poor me does not have enough fabric. Love!

 The O'Quilt family is happy to bring to you tonight a happy post!!

At this hour, this growing old lady is munching M&M's. and posting..
My dear man is stable tonight...knock on wood..and the world spins soundly
xxoo

The Rant and the Relief

The RANT:

 My Cotton and Steel quilt top.

I hate it...now really, amongst things to hate, like ALS for instance...hating my finished Cotton and Steel quilt top is quite minor.  But I hate it anyway.

Suggestions to self...I could..

1.  Use it as a back of a quilt.

2.  Donate it

3.  Put it away to look at it another time.

4.  Ignore my present feelings and quilt it up and let the kids use it.

5.  Cut it up and re-purpose it.

That is all I can think of.

And I am embarrassed that I attributed all that razz to Cotton and Steel...eg..

Women are made of Cotton and Steel and I, too am going to be like that.

Well, the thoughts and the process did get me through two months of sadness..
 I will give Cotton and Steel that!!!..
.I think I love the name more than I love the fabric.

That is my rant for the day..

The RELIEF:
He is not dead yet!!!!!

My daughter-in-law came for the day for her supervised visitation.with her children 
She is doing very well for now...soon will be picking up her one year chip, drug free...Soo proud I am...
She is very smart and handy.  She was able to assist the caregiver to get my darling out of bed,
into the Hoyer lift and into the Carolina blue and sunshine!!

And lucky me...was able to sit beside him and hold his hand...
Love..just the two of us!!!
xxoo

A personal, no quilting, putting it all out there...post

This personal post is for my dear man and his extended friends and family around the world who read this blog for updates on our personal tragedy.
It is also for myself, as I firmly believe that the healing is in the talking and the sharing.
xxoo  I am so grateful for all of you.


I think I am losing my grip..again which leads to my not being able to control my asthma.
. 
My favorite caregiver stayed until 11 last night to help..I pray she doesn't quit..
A mistake in the Trilogy humidifier led to near disaster.
Late at night was about..the alarm on Trilogy breathing machine..calling the emergency hotline...water gushing into his mask..getting it just in time as he can no longer swallow....Replacing the hose..stabilizing the mask..it is still uncomfortable for him, but he says it is ok.
.Doing the 20 pillow thing again..nothing helps because in the past two mornings, we find his head unsupported and the pillows in disarray.
.
Why cant I get this into my heart that I can fix nothing of this...nothing...
   I cannot even seem to make him comfortable at times.

  He is always asking for double Ativan..I certainly do not blame him..
.My head knows...my heart rebels..
" Do not go gentle into the good night, Rage rage against the dying of the light.."
 Oh, Dylan Thomas...you knew...but what good does it do?????

Evidently my disposition is fragile...All of this just brings me right to the edge..
I need to talk with my husband for comfort...not available so much.
I need to talk with my mother for comfort, not available at all.

The last two nights, even the caregiver was exhausted.  I hope she doesn't leave us.  I am beginning to think that even an assisted living facility would not take him at this stage...not that we want to do that..

Here we go again, anxiety at midnight.
I wanted to name this post..."Where is the Calvary", but then, once again...the Calvary is all around us once I stop to look..
It is just that nothing fixes the core issue...horrid ALS stealing my love away

My man does all the finances, the bank accounts, etc. the taxes...everything. 
I had thought that my daughter and I had access to it all..but then...
I was feeling money distress and went to Mr/O'Quilts.  He was having a good 3 minutes and was able to check his I-pad...Now he cannot type, read his I-pad.  Even holding the I-pad is too much. After this three minutes, he could no longer talk and struggled to breathe.
But for three minutes, he was able to check his Paypal account and tell us the code.
The Calvary  had come and we did not even know it.
Today we found family and friend donations in his Paypal account that equal a month and a half of caregiving.
I cried...my style lately...
I cried with relief and I am forever grateful for his large extended family and friends for their generosity.
Powerlessness, acceptance and gratitude.
Please please accept this post as our love for you and our tremendous thank you.

Faits Accomplis

Brown Bear, Brown Bear...is today's finish....see the comfy flannel backing.

.I think that this quilt, with a copy of the book, will make a nice baby present.

. This was quite an accomplishment as it is the last of my long stored basted quilts.
Finally quilted!!..

 Voila.. the seven 12 inch blocks I have finished for Muggs' beach house quilt. 

 I am thinking that twelve blocks will be enough with lattice for a throw quilt.

Featured....the President's Day block, Christmas, Sunshine on a stormy day, birthday block, Valentines, Halloween and I do not know what else...Next up St. Paddy's Day and Easter...lol..

My sister gave me this cool picture frame years ago...I put my own picture in it at that time.

..feeling blue that my time was gone and youth had flown...blah blah...melodrama...

That was years ago...now I keep it up to remind myself that though I was young once,
 I am still here.

With that funny...comes the update on my dear man.

Two mornings in a row, when I got up at 6 to get the children to their school buses,...
I found Mr. O'Quilt's head hung low, with pillows all over the floor.  The night before last, he called the monitor and I was up at 3 am trying to work it out myself...I ended up calling my sister to come over at 3:30 to adjust his dead weight body and support his neck.
.He is a two man lift at this stage.

Anxiety all  over the place.  She offered to stay the night...but, oh, no...
Himself would not have it. 

 He says wait until he is worse...OMG...worse??? 

 Please God let me have enough money to keep him at home. 

Crazy American health care system for catastrophic illness.

Little Pillow Mania

I am into pillowcases. Every time I turn around, my dear man has lost another function and therefore needs another pillow. These little pillows are perfect for someone who is sick.  They are a bit pricey at $8 or $9 each, but I find at JoAnn's Fabric store with a coupon, they are just right.
The latest loss is in the neck muscles of my dear man's neck....So when he wakes in the morning, his head is unsupported. One of these pillows is under his left paralyzed arm, under his right almost paralyzed arm, under his chin and on each side of his head.
I am grateful I can sew the pretty pillowcases.
Then....OMG....
Here comes the respiratory therapist!  She brought a big cumbersome breathing vest and Friday she is going to bring a "sip and puff" portable breathing machine...We probably should get another red cart from Harbor Freight to put all these things on..We can attach a plug strip to the top....Now if my dear wants to go outside...the Hoyer lift will put him in his wheelchair.  He will be pushed outside with his catheter bag, his feeding bag and the red cart with two large apparatus attached to be plugged in outside.
 I want to throw up.
I really want to be braver.
I want the courage of Mr. O'Quilts!!

Five men friends came the other night to visit Mr. O'Quilts...TBTG my dear man felt well...He so enjoyed them.  When my guy is happy, then this Mama Bear is happy too:)

Happy Birthday Emily

Happy Birthday to my wonderful daughter!!!

One of the greatest joys in my life

xxoo