Care Giving For Yourself

It was in October that my husband was diagnosed with Pulmonary Fibrosis.  Looking back at the span of his diseases progression, I realize that at that initial point the impact of the disease was primarily emotional.  Physically, the only way he was diminished was by a slight cough which sounded like he was clearing his throat.  In all other ways, physically he seemed fine.  By December the following year he had passed away from this disease.  He remained active up until the two months prior to his passing, at which point fatigue seemed to overcome him and he became weaker and weaker.  

In the October of his diagnosis, I was physically fine, too.  We both were just two normal people.  Very active and seemed to have a beautiful life ahead of us.  I was his caretaker, confidant and friend.  The initial point of his being diagnosed, it was primarily emotional for me as well.  As he progressed in his illness, I progressed in my level of care for him.  Taking care of my beautiful husband has been the most profound and rewarding experience that I have ever had.  It has also been the most difficult.

Have you heard that over long periods of time spouses start to look like one another?  Or perhaps, an owner of a dog will start to take on a resemblance of their dog?  I think it is because we grow close to the souls we love.  We empathize.  If they are happy we are happy, and if they are hurt, we are hurt.  

When someone we love feels ill, we feel ill too.  If they cannot catch their breath, we feel light headed.  If they are scared of what the future holds, we are scared.  But, here is the catch....   If we are a caregiver to that person, then in that moment, we cannot just collapse, we have to swallow it down and get it together.  After all, logically, we are not the ones that are sick, right?  Furthermore, the person that you would normally run to when you are not well, cannot deal with or accept what you may be going through.  As a caretaker, it is a scary place to be to know that there is no longer anyone left to run to.

There are moments in care giving, that when the patients back is turned that tears begin to stroll down your face.  Or, when you are sitting with them and telling them words of love, that your heart feels gripped with fear and dread.  When your partner is sleeping and you listen to the rise and fall of their breath and you lay awake, sick inside.  

When a loved one passes away, people tell you that their suffering is over.  But, you are still here.  Is your suffering over?  

When you advocate for the disease, you meet others who have the illness your spouse or loved one had.  The disease that you witnessed first hand.  The patients will tell you that because you are just a caretaker that you could never understand the frustrations of having the disease first-hand.  But, you do not say anything because you do understand.  You also understand what it is also like to see it through to the full progression.  Past the point that many patients are aware of.  You swallow this down.  Meanwhile, your husband or loved one is gone.  

As I mentioned, it was in December, almost two years ago my husband passed away.  It gets cold in the winter here.  During that time, I spent most of my time in a blanket.  My primary source of socialization, sitting at my computer.  Dark circles under the eyes, but, always putting happy-faced icons at the end of my sentences.  Everyday, a struggle just to get through.  Time passed, not in sections, but by minute.  If I could just get through the next minute, and the next...  Then, something needs tending.  I tend to it.  I feel glad I did and wait for the next minute.  Then another something needs my attention, and it goes round and round.  Until, slowly I notice what needs attention before hand.  Somewhere along the line, counting time by minutes, turned into measured days and I realized that it was time to turn my attention to me.  

Eventually, I started to see the sunlight.  I almost felt guilty about that.  At first it hurt my eyes, but then it felt good on my skin.   I began to feel proud that I had made it through and continued to take care of what needed tending.  I am surviving.  I am to the point that I have realized that this is not enough.  I have realized that I am not the one who died.  I am still alive.  I still have a purpose in my life and I want to do more than just survive.  I have also realized that Pulmonary Fibrosis has made me sick.  I had forgotten myself, physically and emotionally.  As my husband became more ill, so did I.  As he began to let go of life, so did I.  When he died, I did not.

I have to Give Care to myself now.

Tid-Bits About Pulmonary Fibrosis (Part 1)

~For all the other Supermen and Wonder Women that fight for life every day~

●  Approximately 48,000 people are diagnosed each year with Pulmonary Fibrosis

●  Pulmonary Fibrosis is 100% fatal (without a lung transplant)

●  Every 13 minutes someone dies of PF.  That's roughly 111 people each day

  

●  3,323 will die of PF by the end of this September

●  Approximately 40,000 people die each year of PF

●  Pulmonary Fibrosis means literally "of the lung Scarring"

●  It is impossible for lungs to function when they are full of scars.

Written By: ~Anonymous

**  Thank You, Anonymous, for allowing me to publish the information you have compiled regarding Pulmonary Fibrosis.  Some of the information is heart-breaking to read, although for those of us who have experienced a loved one with the disease, or have it first hand, sharing information is our most powerful tool.  ~Breathing

Twisted Knots

Hi Babe, It is me.  In December it will be nearing the 2 year anniversary when you departed my arms.  Only a few months away.  I have been working along my little path and even when I can't see where it is leading, I have been sure to stop and soak in the beauty around me.  For that alone, I know you are proud of me.  Fall is now here and the leaves on the trees are changing color.  The coolness in the air surrounds.  

I have been maintaining and managing to the best of my abilities.  The house is buttoned up with the exception of one repair that I would like to make before Winter sets in.  If I can get that completed then all my homestead goals will have been fulfilled for this year.  The garden has been the best it has ever been.  It was a record year.  I think it was because I laid straw down to keep the weeds out and it worked very well to hold the moisture in for the plants.  

The river bank?  It is still the same river bank, growing as wild as ever.  Although two trees, the same ones you kept cutting down so it would not obstruct our view, came back. They were growing big!  So big, in fact, I knew it was something that I had ignored and once they began to take over, I contemplated just letting them grow.  I wondered if I should just let them grow and tried to imagine not seeing the water from the house anymore.  I thought it might be a blessing as a windbreak.  But, deep down I knew I was just justifying keeping those big weeds around because I didn't know how to remove them.  So, I made a phone call and had someone cut them and immediately was glad I did.  I vow to catch them early next Spring so that they will not grow out of control anymore.

You have really changed my life.  Given me the opportunity to see what my own capabilities are.  I am even thinking about my future.  Trying to imagine in a very real way what I would want the second half of my life to look like.  I can only see a foggy outline.  Snippets of things like me still living and taking care of our home, River-Rose.  Each year living more simply and naturally.  I realized that I only envision myself doing tasks that make me extremely happy- only have to do with the family we once had.  Now, our immediate family has dwindled as my oldest has left the nest and our youngest has just become a legitimate teen at 13 years old.  I try to imagine what the house will sound like when there is no one to call out to.  What type of thoughts will roam through my brain as I live my existence alone?  Will I be comfortable with the stillness?

I realize that you and I had an age difference and that is why we joked you were the geezer.  Still, your life ended too short from Pulmonary Fibrosis at age 50.  Which is an age that I think is still very young.  When I transfer that to being a widow at my age, it seems I have a long road to walk down in solitary.  This is not how I pictured things would be for me when you and I were healthy, before this disease came into our lives. At the same time, the idea of being alone does not cause me enough discomfort to want to be with anyone else.  To the contrary, it actually prompts me to discover how I can be more at peace with myself.  To perhaps imagine finding a different kind of joy in my journey.  And that is why I contemplate.  I realize that I must imagine what things I want to bring into my life that will fill my future days.  I cannot be complacent in a comfortable area.  If I would like my life to be a journey of joy, I cannot wait for joy to knock at my door, I have to reach out and work for it.  

Money, travel, clothing, things, may bring a little better sense of security to ones mind, but it doesn't change what lives in our mind and soul.  I have picked up and left and driven for days.  I have found the most beautiful, exciting, and serine places.  In the wrong frame of mind, none of it filled me.  I could have the ocean outside my window, sitting in a beautiful room, and still be filled with twisted knots.  

Just a thought, My Love.  Thank You for bringing me to a moment in time that I have been forced to be truly honest with myself.  Even though I have not discovered the answers, the period of discovering purpose is a gift in itself.

With All My Love....