Hospice came into our home last Friday.  Two lovely women representing the Boulder Hospice were so kind and helpful, gently offering information.  The three of us, Chris, my daughter Kim and I were relieved to find that they would honor my wishes regarding having no extraordinary interventions to keep me alive.  They offer comfort, and support.  Their goals are the same as mine, and that came as wonderful news to me.

What is difficult to comprehend is the cumbersome funding mechanisms of Medicare.  Because of two different federal funding streams, all the equipment that was provided by Apria, the bi-pap, and oxygen concentrator,  the suction machine, all have to be replaced by similar equipment that is provided by Hospice!  I thought that wouldn’t be a problem, but the bi-pap was so different and uncomfortable, I now must adjust to a new one.  They were very accommodating, and changed it for me, but it was difficult and not without some discomfort.  I am so grateful to have the support that Medicare provides, but it seems to me, the bureaucratic nonsense could be simplified, by keeping the same equipment and simply changing the funding.  I would think it would be considerably less expensive, as well.

Emotionally, even though at this point, Hospice will be minimally involved, it still is a major step.  But a necessary step that I am very prepared to take.

It is not without some chaos, however.  All of a sudden, countless phone calls, people coming and going to get me set up, was overwhelming.  We live a very calm, peaceful life in our home, with few intrusions upon our quiet life.  On Tuesday, I wanted to run away, and Chris did, too.  We were both upset about the bi-pap and my inability to speak added to the chaos.    Then, a major problem with the site of the feeding tube erupted.  I thought I had an infection because it was bleeding.  The Hospice nurses came, they called my GI doc and he had me come in this morning. 

Thank goodness, it was better today.  Dr. Dolan, a kind man with a great personality, reassured me that the body wants to get rid of the tube.  Not unlike a pierced ear, the hole will close if the tube in not there.  The cause of the bleeding was not an infection as I had feared, but more of a normal bodily response to a foreign object permanently placed.

I was very sad to have to cancel another planned trip.  I was so eager to go to visit my son, his family and my dad early this month for two weeks, but last week I had to admit, I would be unable to do it.  My stamina is fading fast, although some days are better than others.  I am not strong enough for that long journey even if I used a wheel chair at the airport.  Chris worried about my getting stuck in Chicago overnight, with no oxygen.  I was worried, too.

For all of my adult life, I knew that I was strong and resilient.  If I made up my mind to do something, I would do it.  I worked like a fool keeping our home squeaky clean and orderly.  I seemed to enjoy endless reserves of energy.  It has been hard to let go of this quality.  It is still primary in my mind, but I can no longer count on my body to carry out my plans requiring strength and stamina.  Even climbing the stairs at home is exhausting.  I find myself using the railing to help myself up the stairs and I wonder, who is this stranger in my body?  Or whose body is this?  Certainly, it can’t be mine.

Yesterday, I found myself with a bit of unexpected energy.  Could it be because I injected Starbucks French Roast right into the tube?  Funny, I had thought about this a great deal when my swallowing became so ineffective and I couldn’t seem to ingest the same amount of coffee that I was accustomed to.  When I watched the movie made about the man with ALS that I wrote about recently, I saw his mom give him iced coffee to inject into the tube on a very hot day in Massachusetts.  I thought, Wow!  I can do that!

Mollie and I walked around our neighborhood, while the birds were chatting gleefully all around us.  They know spring is right around the corner.  I saw the grass greening everywhere around me, and the buds on the trees swell.  The sun felt so warm on my hungry face, and when I gazed at my garden with the dead remnants of fall flowers, I noticed tiny green shoots everywhere!  My neighbor stopped by and I pointed them out to her with the excitement of a little child.  I grabbed her with a big hug, I was so happy!

I then walked over to my little tree, a forest pansy, planted late in the summer, with the promise of delicate blooms this spring.  I touched it lovingly, told it I found it truly beautiful.  Talking to plants does work.  We are all one. 

Next week, Quinn and Sarah and our little granddaughter Kila, will visit us from Bend, OR.  They were sick a month ago when we were supposed to go  there.  Andrea and Bill will come as well.  The following week, my son Shaun, and his wife Nancy, their three wonderful sons, and my dad will visit, since I cannot go to them.  In April, my best gal pal Lisa will come from Maine.  Will this be goodbye?  Do we ever know?

I believe that there are many blessings to count when you have a terminal illness.  Especially if you are at peace and able to acknowledge it honestly with family and friends.  People are generous with their loving feelings and offers of help.  My husband offers to prepare my feedings, making it easier for me when I am weary.  He has shown such abundant love for me with a gentleness I could only have dreamed of.  He has risen to the challenge of my illness with gargantuan strength and tenderness.   

People are really good.  Goodness, kindness, compassion and love are everywhere.  It has always been so.  Not just now, because I am dying but all the time.  Let us be aware of that goodness surrounding us and focus that awareness sending the goodness back.  We all need that love.  God help us all to let it in.