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

Monday, November 28, 2011

The Wood Pile

-Diary Entry-
Close to Thanksgiving my husband announced that he wants to watch as many Christmas movies as possible.  He can't get enough of them.  We eagerly watch any Christmas movie we can find -from classics to modern day stories.  If we can catch one that we have not already watched, well, that just makes our day. 

While watching a scene in one of the Christmas movies, a married couple, in their golden years, prepared for the holiday.  Within their cozy home, the wife sat on the couch, untangling a box of holiday ornaments as her husband walked in from the cold-outside, arms full of firewood to light in the fireplace. 

 I don't know why but suddenly my heart did a flip and tears sprang into my eyes.  I looked over at my husband who lay in bed, thin and frail.  I realized that during my golden years, he would not be bringing in my firewood.  I mean, logically, I already knew this.  But, it took my heart a bit longer to catch up to this notion.

Thursday, November 24, 2011

Happy Thanksgiving!

How lucky is my family to spend Thanksgiving with each other? 
I feel as though I won the lottery!!  I didn't think we would make it this far.  Counting my blessings that my husband is still here and we are all together, safe and warm, on this day.   
I hope each and everyone of you are surrounded by those you love and that this holiday is filled with much love!  xoxo

Wednesday, November 16, 2011

You must have been warned against letting the golden hours slip by; but some of them are golden only because we let them slip by.

James Matthew Barrie

Thursday, November 3, 2011

Details 11/03/2011

With my husband in the end stages of Pulmonary Fibrosis, I tend to write about the emotional side of things and often gloss over the physical parts of dealing with this illness.  Many people who suffer from this disease have different courses of treatments to try and experience a wide range of issues.

For my husband, he was diagnosed just a little over a year ago and during this time last year, he was able to rake the leaves on the lawn and was still embarrassed about using his oxygen in stores or public places.  He was on 2 liters of oxygen back then. 

At that time, he was the first one up in the morning to bring me my coffee and throughout the day created his own schedule of getting cleaned up for the day as well as helping out with dishes or watering plants on the balcony.

As time progressed and we received more assistance from in-home care, he no longer prepared his breakfast or lunch as to reserve his energy.  He also took physical therapy and learned exercises in order to retain his lung function.

Slowly, the level of oxygen he needed increased.  He would sleep on 4 liters and go up to five, while awake. 
Then, about a month ago his SAT's seemed a bit lower and we had to go to 8 liters during the day and 6 at night.  Pretty soon, anything that had to do with movement took great effort from him.  Such as washing his own hair.  So, I pitched in to help him with this. 

About two weeks ago, he needed a bit of assistance getting to the bathroom.  Someone to hold his arm as he walked there. 

As of last week, at 100 pounds, my husband was carried to the bathroom for his last "real" bath and since then, he cannot leave the bed. 

What is it like to be in end stage Pulmonary Fibrosis? 

At this time, he is on 12 liters of oxygen at rest.  Things like sitting up or moving his arms cause his SAT's to drop down into the 50's.  It takes additional oxygen through the mouth to get them to slowly climb back up.  He no longer craves big, juicy steaks and now sticks with small portions of nourishment that are bland and easy to digest.  Eating also causes his oxygen to drop.  Water or Pedialite must be dropped into his mouth with a straw as sometimes, he cannot hold the cup.  He is given Morphine, orally, to help with the oxygen craving.  This helps him to sleep and forget that he has to work so hard to breath.  This will become our primary course of action to assist him as he progresses even further.  

We have a schedule.  Periods in-between his personal care and rest, when he enjoys spending time with family.  He is all there, mentally.  He responds well and knows exactly what is going on although he does forget which day of the week it is.  When I squeeze his hand three times for... I Love You.... He always squeezes back three times.  Even when he is asleep. 

Every morning when he awakes he is always thankful for another day, which amazes me...his desire to live.  

For us, that is what it is like to be in end-stage Pulmonary Fibrosis.  

Tuesday, November 1, 2011

In a Safe Spot

My hubby's illness has caused him to lose much weight and therefore, he no longer wears his wedding ring.  Couples share many inside jokes and one of ours is when I ask him,
"Where's your wedding ring?"
He always replies, "In a safe spot." 

I really have no idea where that spot is, but I always know when I ask that question, he will respond in the same way. 
No matter how he feels or how deep asleep he is, if I pose the question to him he always says that his ring is in a safe spot. 

As his illness, Pulmonary Fibrosis, has progressed, it has become very obvious how serious a disease it is. 
In a few short weeks, he went from bathing himself, to unable to leave his bed. 
Being an annoying wife, I still ask him that question,
"Where is your wedding ring?"
 He still answers, 
"In a safe spot."

Although, me being me, I had to go one step further.
"Well, I hope there is a sweet love note with it.  You know how I love, love notes."
To that, no reply from him.

This month was my birthday and he commissioned our in-home care provider, McKenzie, a shopping list of presents that I told him were not necessary.  But he did it anyway. 
One thing I absolutely knew was on the list was a pair of slippers.

As romantic as my hubby is, he is also practical.  Every year on my birthday, I get pair of ballerina slippers to keep my feet warm through the winter.  Oh, and of course, a card.  My hubby picks out the most sentimental cards ever!  Guaranteed to make me cry. 

This year, as I reached into my gift bag, through the pastel-colored tissue my hands found the slippers. 
"Do you see the card?" He asked.

But, I didn't.  There was no card in the bag.
"Oh, no!  I had a card for you filled out and everything.  It was in a creamy-gray envelope.  Are you sure it is not there?"  He asked.
"I don't see it, Babe.  Don't worry it will most likely turn up"  I said.

I did not find the card and he seemed very worried about it, but maybe one day, I will find the card where I will find his wedding ring. 
In a safe place.

Saturday, October 8, 2011

Brush Strokes

From the moment I was born, I lifted my head to take a good look around.  My eyes were curious, bright and focused.  This is the story that I have been told and this is the person I have been, since the day I was born.  Several months ago, my Grandmother was passing on.  She was in a hospital bed and quite aware, yet, seemed content within the process.  As she dosed, I sat beside the bed and held her hand. 

She opened her eyes, saw me smile, and asked, "Why are you always so happy?"
"I don't know, Grandma,  I just am."  I replied.
My mother chimed in, "Don't you remember, Mom, the day she was born, lifting her head and already looking around?  She always had that joy."

On the drive home, I cried much of the way.  I found comfort in the way she lived her life, not in the length of her life.  She had outlived her own husband and parents, as well as some very difficult times.  Through it all she always held true to the person she was.  She laughed, oh, how she laughed!  There were times, usually when remembering something that touched her heart, she cried.  But, everyday she kept going.  As sweet and frail as she was, she was one tough cookie.  I've always admired that quality and aspired to age in that manner, if possible. 

I view life itself, like one, great-big canvas and each experience a brush stroke of colour. 
A beautiful painting, still in creation, never forsaking each brush stroke as they build upon my soul's portrait. 

Here, now, I find myself shaken by my husband's disease.  Not so much the mortality of it, but instead in the daily efforts that occur.  It is my great honor to share in this difficult journey hand-in-hand with him.  All of my strengths, from deep within, are called upon in order to do so.  Then, one day, suddenly I find myself wondering where did I go? 

I try to remember the ways I thought or the feelings I had before this and I cannot find a connection.  The only way I can describe it is looking at an old, faded picture of someone who resembles me.  I'm not sure how to define myself anymore or who I will be once he is gone.  This experience has definitely changed me.  Yet, I know the brush still strokes against the canvas.

Thursday, October 6, 2011

Coming together is a beginning. Keeping together is progress. Working together is success.

Henry Ford

Friday, September 30, 2011

Are You In the Present?

Nearly from the beginning of our journey with Pulmonary Fibrosis my husband was approved for in-home care.  At the time, it was not so much because he needed it, but because the person who evaluated him knew what a rapidly progressing disease this can be.  Sadly, in our case, it has been true. 

It has been almost one-year since then.  During this period, we have had two, in-home care providers.  I am so grateful that we were able to receive this service.  It has also taken an adjustment for him, and our family, in having a stranger step into our lives.  As helpful as it is, still, we must acknowledge that he needs assistance with everyday things.  It takes a personal effort to learn to be yourself, while your life is completely changing, in the company of a stranger.

I believe it takes a good heart to go into the in-home care profession.  We have also learned that it takes more than that.  One should be dependable, empathetic, trustworthy and a good listener.  These are things learned as we went along.  I suppose you could say at the beginning we were rather "green" in what to look for. 

The first in-home care professional was 19 years of age.  Which never bothered me, as I knew how hard I worked at that age and after all, it wasn't that long ago (my sense of humor is showing).  Nevertheless, when she asked if she could hold her wedding in our backyard, I really should have known it was a bit of a red-flag... 

Call me thick-headed, but I told myself, "Ahhh, to be young and in love!" 

I did grant permission, as long as no guests came into the house and she was responsible to clean-up after the event.  Of course, the wedding never panned out.  She stayed about four months, although when she told me she could no longer bring my husband his morning meal because she didn't feel comfortable in waking him; I knew she would not have the fortitude to go down the road that we were on. 

How do I gauge my instincts in these things? 

I simply ask myself, "If this were my eleven year old, lying in bed, would this be acceptable for his care?"

Now, for the men out there who just cringed...Trust me, I know my husband is not a child.  Still, one must have a defining line in acceptable quality of care and that is how I determine mine. 

The second nurse was ten years older than myself.  She was quite capable and had no qualms about bringing my hubby his nourishment.  Quite opposite of the first in-home care provider, she was going through a divorce.  Several times she started her shift in tears and it really broke my heart.  Although, I have kids who needed to be registered for school, a full-time job and the reason she was in my home- a very sick hubby.  By now, his disease had progressed. 

Within the third week, and due to her impending divorce, she let me know that she felt the death of a spouse is much easier to deal with than a divorce.  After all, in a divorce one still has to deal with the other person moving on in life.  Well, I disagreed.  Death is never easy on the person dying. I wondered if she had looked at it from that standpoint? 

Also- A woman's got to do what a woman's got to do!  Therefore, she did inform me that when a "real" job came along, she would have to take it.  As of last Thursday, that was exactly what she did.  She now has a better job at our community hospital.  This comes at such crucial point in my hubby's care. 

But, don't worry - we are all human and things happen and this time, I know what we really need.  We need a person that has their own life, but who lives in the present moment.  When they are here in my home, they understand what is currently happening, in the moment, here. 
Really, when I think about it, isn't that how we should all approach each moment- To be in the present?

photos via #1, #2, #3, #4

Wednesday, September 21, 2011

What If?

Written By:  Donna White

What if you were told you have a terminal illness today?

What if you were told you only had 3-5 years to live?

What if you lived a very active life and woke up one morning
unable to get out of bed and every breath you took was a cough?

What if you spent six days in the hospital and left having to wear
oxygen 24/7 -for the rest of your life?

What if you knew your lungs were basically turning into concrete
spreading like a cancer does from the lower lung lobes, up?

What if you had Grandchildren that you would not get to
see grow up?

What if-  you saw the tears falling from the eyes of your children,
husband, wife, friend, Mother, Father; as they watched you become
weaker and knowing how helpless they felt watching someone they loved,
and treasured, fighting for every breath they took?

What if you knew what it was like for someone not to be able to
take their own shower alone anymore?

What if you knew what it was like to not be able to walk from one
end of your home to other without feeling you could not get enough air
to breathe?

What if you became close to a group of people struggling to breathe
and watched as member after member died from a devastating disease?

What if you knew IPF affects approximately 200,000 Americans and an
estimated 40,000 Americans pass away from IPF each year?
Would you want to help spread awareness about a devastating disease
that is taking lives in order to find a cure?

You can help save a life!

and click "like".  Clicking "share" on different links posted on FaceBook to bring awareness :)

** PFF -IPF Awareness Week -September 18 - 24**

Donate to the Pulmonary Fibrosis Foundation at:

Monday, September 19, 2011

Top 10 List

This week is Pulmonary Fibrosis Awareness Week!

To help kick it off, I thought I would comprise a Top Ten List-

Top 10 Things That are Hard to Do With End-Stage Pulmonary Fibrosis

 10)  Think of the future
 9)  Get out of the house
8) Be independent
7)  Make Love
6)  Bathe
5) Walk
4)  Eat
3)  Talk
2)  Wake up
1)  Breathe!

Unfortunately, this list didn't end up being very funny.  Although, there is nothing funny for the approximate 148,000 people who have Pulmonary Fibrosis within the United States, or the fact that there is no cure.  If there is one thing you can put on your "Top 10 List", it would be great if it were: 

To get started, check out

Friday, September 2, 2011


As the Pulmonary Fibrosis progresses within my husband, I realize that if I am going to keep things honest regarding our experiences, then we may have some tough times ahead on this blog.  This is particularly difficult, not only because of personal aspects, but because I realize that there are many people who are reading this who also have this disease and it is very important to stay positive.  All I can do is stay true to the heading on the blog, which is, "An honest description of one family's struggle with a life threatening illness...",  and keep in mind that every family has different struggles, none are the same.

So, you may be asking yourself, "Why are there pictures of cute, little pups on the screen?"

Well, their names are Abbey Rose and Khloe June. 
They have been with us during this experience as well.  These little guys probably spend more time with my husband than anyone in the house.  They rarely leave his side. 

They are entertaining with their antics of fighting for the same toy and trying to edge-in for the best spot on our bed.  They are funny little ones.  The Chihuahua thinks she knows how to yodel.  Which is pretty hilarious and when she graces us with her best yodeling song, she then thinks she deserves a treat.  The Pug, on the other hand, is a big old meat-head.  She just bullies her way into any situation and strangely enough, she loves to do hair.  If you let her get a hold of your hair, she will tease it until you look like you came from an 80's rock band! 

If anyone is feeling sad in this house, they know. 
They will come and try to lick your tears away and lay with their head rested on their paws looking at you with sad eyes.  I believe that dogs are very intuitive and their love -genuine.  They have been a beautiful source of comfort, companionship and laughter for my husband and I feel blessed that they are with us to share along in our family's journey as well. 

No matter what form it comes... 
What would any of us do without the loving friendship of our companions?

Sunday, August 21, 2011


Right on the cusp of my husband's decision not to pursue a double lung transplant came another decision needed to be made.  The next decision was to allow his status to be changed to hospice.  Hospice is the idea that you suffer from a terminal illness to which there is no cure to pursue.  It helps to provide comfort and care in the way you desire during this time of your life.  In order to be placed on hospice your doctor must agree that you would only have three to six months to live.  We became aware that his medical staff has been believing this for quite some time and it was only a matter of us realizing this... 

My husband chose to go onto hospice, which for us was a strange transition; knowing we were now moving towards the end of his life.  The care and support has been fantastic, as under hospice, a nurse comes to see him once a week and discusses his health, medications, and needs.  He no longer has to go to visit a doctor. 

A booklet about hospice was given to me to learn about the stages of death and how, as a caregiver, I can prepare myself.  There were many descriptive areas within the book, although one of the sentences I read gave me pause to think. 

"As a caregiver, you must realize that it is now too late to change your loved one." 

I found this slightly humorous and true.  This would not be the time to really get my point across to my husband about leaving the toilet seat up. 
Things like, "Can't you see things from my point of view?"  or " "Why do you always ___________?" (you fill in the sentence), simply do not matter. 
This is his time to process and maneuver through this tremendous life experience.  His primary focus is not scoring points with me, rather; it is a dance of surviving and letting go -all at the same time. 

When I mentioned this later to the nurse, she smiled and said, "I always wondered why that sentence was necessary in the hospice book.  It didn't seem like it fit into the rest of the information."

To me, it speaks volumes.  You see, some of the push and pull is part of a healthy marriage.  If a marriage is to be 50/50, an equal partnership, then part of that is hoping your spouse will meet you half of the way.  Never wanting to change who your partner is, but always offering layers of who you are for your spouse to adopt.  This goes both ways. 

Now, it must be understood on my part, that the 50/50 time of our marriage is now over.  The offerings of who I am within our relationship is like a ship drifting out to the edge of the horizon until it disappears.  It is time to focus on who he is.  It is the acceptance of ---
The person he once was, is the person he is.  The person he is, he will always be.   

photo via

Wednesday, August 17, 2011

The most perfect communion of soul with soul, the most exquisite fellowship of mind with mind, are possible only where undoubted trust and undying love are possible, nowhere else. Nothing so ennobles and purifies a spirit as the exercise of faith in somebody.