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.

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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?

Bridges

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.   

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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.

REUEN THOMAS