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

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.

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

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

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.  

xoxo 

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.

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.

photo via

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

Henry Ford