Friday, December 30, 2011

Make A Difference in The New Year

If you have ever read this blog or found yourself here for the first time, Thank You. 
This has been a labor of love on behalf of my husband who found himself diagnosed with this disease. 
There are many others out there...
Please help make a difference in the world by getting involved. 
Spread the word about Pulmonary Fibrosis. 
Do me this one favor and click the link--

Wednesday, December 28, 2011

The Ring and The Card

As I wrote about in a story called "In A Safe Spot", my husband used to toy with me about the whereabouts of his wedding ring.  For quite sometime, the ring no longer fit on his finger. 

I found it not long after his passing.  It wasn't really that hard to find.  All I had to do was open up his closet and there is was, in a white box. 
I wear it everyday. 
I miss him so.

There was discussion about a lost birthday card, that he had all filled out and could not find.  It would have been the last card he actually signed -just for me.  I have not been looking for the card, although I was recently sent a box of chocolates. Well, all really good chocolates go, not in the kitchen, but in a little cubby, behind where my hubby sleeps. 
That way the kids do not eat it all ;) 
So, I went to the little cubby to place the box of chocolates and what do I see in the corner?  A soft gray envelope, just as he described it, slid into the corner.  I pulled the envelope out and without opening it, held it to my heart.  I knew I had found his lost birthday card to me.  You might think I am silly, but of course, I cried a bit.... and then put the card back where it was found. 
Unopened and unread. 
I really miss him.

Tuesday, December 27, 2011

The Christmas Slippers

In an earlier post, I mentioned how my husband comprised a Christmas shopping list for our friend's daughter to pick up.  My hubby had to do this because he was too sick with Pulmonary Fibrosis to go out and unsure if he would make it to the holiday, my husband was so sweet to ensure that I would have presents under the tree on Christmas morn.

My husband's life did not last until Christmas, although sure enough, under the tree, there were packages and presents to me from him.  Before opening some of them, I felt I already knew what they were.  The young girl who did his shopping told me he was very specific about his list. 

There are just some things my hubby got me every year that I could always count on.  One of those things are slippers.  He wanted to always make sure my feet were warm around the house.  The style he always purchased for me were similar to the picture above, ballerina slippers.  So, when a certain package was handed to me on Christmas morning, I knew for sure it was my slippers.  My heart tugged a bit as I began to open the present.... 

Then, as I pulled them out of the package, I was surprised to meet these Christmas Elf slippers. 
As I write this, I have to chuckle.  For sure, this would not be what my husband would have normally picked.  Although, the sweet girl who shopped for him thought these are the slippers he wanted me to have. 

For the last few days, I have been walking around the house in these big, curly-toed, Elf-slippers.  They are actually pretty warm and not as difficult to navigate in as one might think, with he exception of walking up stairs.  While they are not my usual, romantic ballerina slippers- I can't help to think my husband is somewhere watching me wear these and is having a really good laugh.

Sunday, December 25, 2011

Blue Jean Boy

Last night on Christmas Eve, I had a dream about my husband. 
He was just glowing and beautiful. 
His blonde hair, soft and curly.  His complexion, just dreamy. 
It was like he was covered in a light.  He was wearing what looked like a black tux. 
With a white shirt beneath. 
I was surprised by this image until I looked all the way at him and noticed his pants were the blue jeans he always wore. 
He looked so healthy and just the way I know him to be. 

 But, like a fool, I said, "Wait!   Where are you going?  You know you can't go out." 

Just then, I noticed that he did not have any oxygen on.  He was standing beautiful, pure and ready to go. 

"I have a doctor's appointment." He  said. 

"Is it possible you are actually getting better?"  I asked him. 

Then, the dream was over. 
It was my first dream about him since he passed. 
I look at this like the best Christmas present I could ask for. 
All day today, as you can imagine, I missed him.  I kept looking up and asking for his approval. 

"Do you think I am doing okay?  Can you see that I am trying very hard to handle what, I suppose, you believe I can?" 

Still, what could a wife want more than to see her hubby so lovely and glowing. 
So handsome and assured-
as he was last night in my dream.

Saturday, December 24, 2011

Presents From The Sky

Last night my family had visitors.  My husband's best friend and family.  My husband's best friend is the person who introduced us and through my hubby's illness, his best friend never shied away from visiting him and just hanging out. 

Now, you have to realize that these two are tough men.  They have travelled the roads together, as my son likes to call them, asphalt cowboys.  They would take their trucks through the most of inclement weather; situations that would frighten most people, yet, did it with steady hands.  They have seen a lot together and shared many stories.  My husband and I have watched their children grow up as they have watched ours and we are lucky to have friends, who truly do have our back. 

So, in my room the whole group walks.  The Christmas tree next to my bed, glowing.  His daughter places an armful of presents in my lap.  Her shoulders begin to shake and she starts to  cry.  She says they are from my hubby.  He had asked her to buy my presents and she wanted me to know that each wrapped present he was very specific about.  These presents had been thought out by my hubby with no help or input from anyone.  They each had a special meaning for me.  We hugged and cried for a bit together. 

Then, to see his best friend's face well up with tears was more than anyone could handle, and soon the whole room just let it all out.  Later, they placed the presents under the tree.  This morning, I did what I would do in any situation, I picked up each one and shook them, just a little.  I was hoping it brought a smile to my husband's face to know that some things just never change. 

I am lucky to have shared the time I did with my husband and his thoughtfulness never ceases to amaze me.  I hope that everyone who reads this feels the same thoughtfulness on Christmas morning and and your heart warms with the contentment of sharing the holiday with the ones you love.

photo via

Wednesday, December 21, 2011

Questions For My Hubby

Did you meet God?  What is it like?  Did it feel like a warm hug?
Do you now know all of the secrets in the world? 
Can you see beyond our Universe?
What do you feel like?  Are you healthy again?  Do you feel at peace?  If so, it that the only feeling you have or are there others?
Did you meet other people, your father, my grandmother, our dog Jade?
Can you see generations ahead, our children's grandchildren, even their grandchildren?
Can you see generations behind, people in your family that you have never met?
Are you in one spot or can you go other places?  Do you decide the places you can go and if so are there any limitations?
Do you have a purpose where you are at? 
How do you move around?  Do you just think about it and it happens? 
Do you sit down?  Or just hover?
Do you think of me?  Can you see me right now? 
Do you know how much I love you?

Saturday, December 17, 2011


My dearest husband passed away on Thursday, December 15th.  As I write this, I still can't believe it.  It's funny that this whole time I have been writing about his illness, yet, did not expect his passing. 

There were many signs along the way and myself, as his caregiver, who had been there with him nearly every moment of every day -was still taken off guard by his leaving.  As a couple, we spoke openly about the inevitable day that would come.  He was never scared about what would become of his spirit, only scared about the process itself.  I, too, wondered how it would be.  Sometimes, while he was sleeping, I would watch him.  Staring at his face, my heart swelled with so much love and the questions of how I would handle it if he began to pass away.  Of course, my first thoughts were of reviving him with CPR and knowing me, in that moment, I would forget his advanced directives, not to be resuscitated.  So, I would remind myself that if anything occurred, my job in those moments would only be to be there for him.

For about 3 days prior to his passing, many signs were given to us that the end was on its way.  There were physical signs.  Many of these things are personal in nature, but I know he would want anyone who reads this to be informed.  So here goes. 

His urination became less frequent.  He had the desire to go, but often, nothing would happen.  When it did occur it was a very dark amber color.  Three days prior to passing, there were black flecks in his urine, which apparently is a sign of kidney failure. 

Of course, there is also the obvious need for high-levels of oxygen.  We had two concentrators, Y'd together to support 20 liters of oxygen that went through a nose cannula.  Then, we also had a liquid tank that supported 15 liters of O2 that also went through a nose cannula.  So, basically, he had two cannula's in his nose supporting 35 liters of air and that was barely enough for his needs. 

This made his throat very raw and sore.  I swabbed his throat with honey and glycerin and he felt that helped, although due to the sore throat, he barely wanted anything to eat.  At this point, his primary diet was yogurt or soup broth. 

A couple days before, I notices that his feet seemed puffy.  They were swelling.  I believe it is because his heart had become enlarged from working too hard.  But, I also thought that it could also be due to lack of circulation, so I had them lifted a bit higher with several pillows.

Emotionally, there were plenty of signs as well. One day, he asked his best friends daughter to visit him.  He did not want me in the room.  Later, after he called me in, he asked me if he could borrow some money. 
 "Only if you pay me back."   I said with a wink.
He then gave the money to her and I knew that he was sending her out for my Christmas presents. 

He also became more dependant upon me, never wanting me to leave.  Two days prior, his nights were very restless.  I would wake up to him fidgeting with hoses and doing all sorts of stuff.  When he did these things, they caused his SAT's to drop and at times, I had to become very firm and let him know to not do that.  I was here and what did he need?  During these moments, I am not sure if he knew what he needed and sometimes he needed many things all at once. 

He always prided himself on getting ready for the day.  A shave, shampoo, a bit of cologne and a change of clothes.  This we performed together like a ritual.  Closer to his time of passing, he would ask if it was really necessary.  That he just wanted to stay in bed. 

Even our time in bed was different.  Usually, we would watch movies or shows on the television.  As the time got closer, he primarily kept his eyes closed, but amazingly would know exactly what part of the movie we were at.  On his last day, he slept quite a bit.  Over the normal periods of sleeping.  At one point we had a visitor and although he was sitting up, he still kept his eyes closed and the sound of speaking too loud seemed to cause him pain.  He did not speak much. 

After she left, it was early evening.  He was propped up with eyes closed, he looked very comfortable.  The Christmas tree in our room glowed and Miracle on 34th street was starting.  I called my youngest son in and asked him if he would like to watch it with my hubby.  I also let my son know that even though his eyes are closed he still hears every word that we say, so feel free to talk to him as well.  I stepped out of the room and took care of the house.  When the movie had ended, my son left the room and I came back in.  My husband opened his eyes and asked for something.  I noticed that his right eye looked different than his left.  The pupil appeared to be dilated.  While I was in the process of grabbing what he had asked for, he essentially told me it was too late. As I sat next to him, both of his eyes opened very wide.  They had a far off look.  I began to call his name.  I don't know why, I grabbed a picture of his daughters from behind him and held it in front of his eyes.  I kept calling his name, asking him to look at the picture and begging him not to go.  A moment later, he closed his eyes and he was gone.

There were so many signs.  But I really did not want to see what they meant.  I wanted to only acknowledge each one with a remedy of some form.  I told him that morning that I thought he had a flu bug and that we will get him better from it and even though I can't cure his disease, he would feel much better when this flu goes away.  In a way, I feel my actions deminished what was truly going on -his dying process. 

I wish I had faced what the signs meant so that I would have known the right words to say in the very moment that he was leaving me.  I would have professed my undying love and gratitude for all of the beauty that he brought into my life.

Friday, December 16, 2011

Said The Rose

I am weary of the Garden,
Said the Rose;
For the winter winds are sighing
All my playmates round me dying,
And my leaves will soon be lying
'Neath the snows.

But I hear my Mistress coming,
Said the Rose;
She will take me to her chamber,
Where the honeysuckles clamber,
And I'll bloom there all December
Spite the snows.

Sweeter fell her lily finger
Than the bee!
Ah, how feebly I resisted,
Smoothed my thorns, and e'en assisted
As all blushing I was twisted
Off my tree.

And she fixed me in her bosom
Like a star;
And I flashed there all the morning,
Jasmin, honeysuckle scorning,
Parasites forever fawning
That they are.

And when evening came she set me
In a vase
All of rare and radiant metal,
And I felt her red lips settle
On my leaves till each proud petal
Touched her face.

And I shone about her slumbers
Like a light;
And, I said, instead of weeping,
In the garden, vigil keeping,
Here I'll watch my Mistress sleeping
Every Night.

A portion of the poem, Said The Rose
Author:  George B. Miles

One of my favorite poems and dedicated to my Dear Husband who sent me roses every week, from the day we met, for over a year.  Never missing a single time.

Wednesday, December 14, 2011


Every morning, after my husband wakes up, we take some time to build up his SATs and work the stiffness  out of his body.  After all, his body is primarily in one position for most of the time and it is good to work the kinks out.  Off goes the covers and the morning air hits his body, then we begin to do our version of "yoga".  

Our "yoga" consists of myself, bending and lifting his legs into all sorts of positions.  Bringing them up close to his chest and turning his hips from side to side.  To this, he moans while joints pop and creak.  Ahhhh, it does feel good, though.  At least that is how I imagine it, living vicariously through him. 

"This is what happens when you get old."  He says this morning.
"But, Honey, you're not old!"   I respond.
To this he replies, "I know!  That is what I've been saying.  Someone sure got this wrong."

He is right, you know. 
There is never the "right" person that this should happen to.
Pulmonary Fibrosis affects many people of all ages and gender. 
I don't like it. 
I don't like any of this one bit. 

Saturday, December 10, 2011

15 days

For the last couple days, my husband cannot seem to keep his oxygen levels up.  He is very weak and for the sake of keeping him comfortable, his best bet is to sleep as much as possible. 

While waking from a nap I said to him, "Merry Christmas, Baby."
"Do you think I will make it to Christmas?"  He asked.
"I don't know, Babe."  I replied.

Good thing his eyes were closed so he could not see my face, twisted in a grimace.  Trying to lighten the mood, I asked him if he has been a good boy this last year.  
He shook his head "no".
"Oh, yes you have!  Well, you have had a few moments here and there, but nothing to worry about."  I told him.

"So, what would you like for Christmas?"  I asked
"Gelato."  He replied.

Well, we do not live in Italy, but there is a little store near by that sells a good version of the yummy treat.  I asked him if he wanted the Vanilla Bean or the Dark Chocolate Fudge and he said he would like both. 

He then drifted off to sleep again and ten minutes later awoke long enough to ask if the Gelato was here yet.  Of course I hadn't left to get it yet, but told him it would be soon.  A bit later, he asked again.  Suddenly the need for me to get a hold of Gelato was quite intense.  I counted the moments that the children would be coming home from school so that I could run and get the ice-cream. 

Later, in the car, I headed for the store.  Our town looks so pretty this time of year.  The farm fields dusted with snow.  It was clear outside and just about at sunset.  In the distance I saw the prettiest moon.  So big and heavy on the horizon.  It was glowing in a white and blue tone.  It reminded me of all of the moon's my husband and I have gazed at.  It hits me that we do not have many more moons to share. 

How strange it feels to know that Christmas is only 15 days away and neither my husband or I know if his life will last that long. 
No matter where I go, it seems like he is in everything I see.

That night, he ate his Gelato and let the coolness sooth his throat.  We talked about the first time he had tried Gelato, on our honeymoon, and all the things we did together. 
It was a beautiful night.

Wednesday, December 7, 2011

Layers of an Onion

The other day my husband did something that completely shocked me.  I won't say what it was although I was hurt and upset by his actions. 
You may ask, "How can a man of a mere 80 pounds, at the end of his life, still make his wife upset?" 
Well, apparently it is entirely possible.  Trust me. 

I racked my brain, why would he do such a thing to his wife and caregiver?  The person who has stood by his side this whole time and would move mountains for him, if possible.  Shortly after this occurred, a nurse told me that in her 30 years of experience dealing with dying patients, often the person departing from this world will, indeed, do something that is out of their norm and upsetting to those closest to them.  She feels that it might be a form of departure.  In some strange way- a gift to the caregiver, to just make them upset enough that they can separate their heart, just a little, from the situation in order to make it all the way through such a heart-wrenching experience.  Sounds good in theory.

Maybe it is a combination of many things. 
Getting to know someone can be like peeling back the many layers of an onion and when a person is nearing the end of their life, all of the emotional layers of that person slowly show through. 
One of those layers is control, or lack of it.  How terrible it must be to no longer be able to control the environment around you or your body itself.  To have others involved in your very intimate personal care.  What is the cause of needing control?  I believe it is fear. 

I don't know if I agree that the experience was exactly a gift, but I do agree with the nurse and it did cause me to take a step back and ask myself, "Who is taking care of me?" 
Am I emotionally and financially prepared for the day my husband departs? 
Do I remember the person I am inside and what am I doing to cultivate that person?
This is the first time that I have truly asked myself these things and I know that in order to find the answers, I will need to work through my fears and pull back the layers of my onion.

photo via