Sittin On A Porch

Sittin On A Porch
Our little back porch

Wednesday, August 27, 2014

life with hospice

I have been very tired. Part of it is the meds, and I was trying to get out and do something, no matter how small.  Maybe that needs to be scaled back a bit.  The day after Josephine the Counselor came out, Gwynn, the Nurse came for a visit.  She was very nice and has a comfortable way talking about things I would rather not talk.  I liked her right away.  I thought she would have been by for our weekly visit, there was an impression on my part that she was going to try and come on Tuesday/Wednesdays.  I am sure that in this line of work things aren't very predictable. 
I understand.

I spent most of the days resting on the bed.   I have become very fond of our bed.  I love my sheets, my quilt, the pillows.  The bed and I are becoming good friends.  For all those years, napping was a bother.  And now, it is one of my favorite ways to spend time.  Its nice not to feel like I have to do a lot of stuff.  I am very satisfied with the life I lived.  I was not even good with some of the things I tried.  Others I picked upright way and was quite successful.  I am just happy I tried things.  I have never worried about whether I finished it or not, as long as I got to try it.

Today Andy, the Hospice Clergy came by for a visit.  I was thrilled.  Andy was in Casablanca, the first play I was in her.  I also met Mary, Rich, Colin, Jack, Jan and most of the Opera House Stage Company great group of volunteers.  For the next five or so years I continued to learn and work with the Stage Company learning lights, stage managing, sound and sound effects, and any thing that allowed me to play with my best friends.  I mean play.  It was fun, it was hard, it took a lot of hours. 
And it all started with Casablanca.

A friend from when I was another person, and here we are sitting and talking and enjoying our reminiscing and just talking.  We talked about the house and how he knows where we used to live, and when he drove into the gate he thought what a beautiful bright wonderful piece of property.  I said, "yes, my honey had asked if I wanted to travel or buy a home.  I chose the home.  It was rough, there was a lot going on to get from there to here.  But here we are, I'm in heaven.  Our home is surrounded by the most beautiful trees and vegetation, and a lovely house, barn like with a green metal roof.  But it is the love that  radiates out from the home, and that was what Andy saw.  I will look forward to talking to him in the future.  I guess I should also bring up what people might be expecting.

I need to sleep.  I rest all day, but I am not sleeping enough and I can feel it.  Saturday the oxygen man came and dropped off my concentrator and some travel bottles.  I am not taking the bottles anywhere.  No, I see myself more and more staying at home.  The only reason I am wearing this hose tied around my neck is because the meds affect my breathing, and if there is a simple solution to minimize my stop breathing, okay.  I have got it tied around me several times.  It is a single hose, but add in sheets and my twisting and turning and sometimes it may take a while to get away from the bed.  I barely notice it, so when I lay down, but not walking around.  Not yet.

Poppy and Perriwinkle are starting to meld into flock.  Poppy is a bit bigger, but she is way more fuzzy than Perri.  Hyacinth Ladean is part of the flock and everyone seems to be happy in their little chicken world.  I sit on our tiny back porch and watch my chickens and ducks.  The cats visit.  The dogs want to play ball.  It has been a little cooler in the mornings, and early evening and Bug and I sit and look out over our home.  We are happy.

I am happy.
I feel so loved  Ms Moon has made beans and rice, and then brought over blueberries and yogurt and  I am not eating more, but I am eating better.
I talk to my family and beloved ones, but mostly everyone is giving me space and time.  They limit their visits and their phone calls.  Thank you everyone.  But remember this is going to take time and lets pace ourselves.  I will try and stay closer to keeping my record up dated. 
But I am tired at times, so no guilt or worry I will be back as often as I can.
I am enjoying the peace. 
Peace is good
forgiving myself
forgiving others
accepting my life
I think this is how I feel
and I like it
 

10 comments:

  1. Just keep being at peace. And not in pain. And enjoying every bit of it you can. What do you want me to bring next?

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  2. I'm so glad Andy came by. You just have to love him. And, as you said, he was part of our magical Casablanca family. Do you have any way to watch DVDs downstairs? I have copies of some of our shows if that would be entertaining. Jack is up to his ears in building the set for "Barefoot." I'm hoping I can steal him away sometime on Friday so we can come by for a visit. I'll keep in touch. Love you.

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  3. Sending you love, dear friend!
    --Louise in Tallahassee

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  4. Good to read your post. I wish there was something that I could do. But am happy that you are at peace and love your house.

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  5. Love coming to you all the way from MN...you are on my heart and in my mind. I know that sounds crazy since we've never met, but I have found your blog so helpful to my own life and my own challenges of being ill.

    I was thinking how I might have handled the diagnosis of lung cancer, and I wonder if I could have lived the way you have lived these last years....fully and sweetly. You traveled and even married and renovated a house! I might have hunkered down and waited to die (I'm not exactly sure how I would have handled it), and I deeply admire you for embracing your time with zest and an open heart. In this world it is HARD to have an open heart, and I'm so happy you were able to seize all life has to offer. I know it's also a sadness to be so sick and leaving the ones you love, and I pray that you will find all the comfort you need.

    I wish you much peace on your journey going forward.

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  6. Reading quietly here. Grateful for your peace.

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  7. Thinking of you Kathleen, up here in Toronto Canada. Hope your peaceful feeling is continuing.

    -invisigal

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  8. Hi Kathleen! My name is Cameron Von St. James and I had a quick question for you! I was wondering if you could email me at your earliest convenience at cvonstjames AT gmail DOT com :-) I greatly appreciate your time!!

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  9. Thinking of you !!! way up here in Watkins Glen ,New York

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  10. Kathleen,
    First, I wish for you peace and comfort during your transition to hospice care. Secondly, I've followed your blog (as a lurker) for years and felt that you had some inside line to survivorship and that somehow you'd outlive all of us despite the odds. I've hung on to your posts thinking you had a special purpose (and I still do) to share life while beating the odds.

    As a nurse, and a family member of so many who've traveled a similar path as yours, I applauded and silently cheered you on but never thought I'd be reading a hospice post.

    But now, I see that your path is redirected and for that I am at a loss for words. However, I am comforted at your acceptance of hospice because quality of life can be improved even though cure isn't the option.

    Thank you for sharing your story and journey and for including all of us. Perhaps I and others failed along the line as blog lurkers did not reach out to support you in the physical or cyber realm, but please know that your life, story and blog reached many of us and that you are still cheered on with blessings, and that you are loved beyond your disease.

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