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

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

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!

http://www.facebook.com/PulmonaryFibrosisFoundation

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:

http://www.pulmonaryfibrosis.org/

photo via

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: 

Make a difference and raise awareness about PF. 

To get started, check out
 www.pulmonaryfibrosis.org

photos via

Companions

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?