Sittin On A Porch

Sittin On A Porch
Our little back porch

Wednesday, September 10, 2014

My goodness life gets busy when you go onto Hospice

I have met the administrating nurse, the counselor and finally Ms Gwenn my nurse.  Then over a weekend a very polite young man delivered my Oxygen concentrator and left two bottles almost the weight and shape of me in case we should go exploring out into the real world.  I feel like I need to raise my hand and ask to make sure everyone is certain that this is happening to me.  Granted I am tired and have been miserable at times, but who isn't?  I feel like I am in a great hoax and any moment someone is going to pop out of a trash can and say surprise, this was all just a big joke.  I am not sure how I would feel about that.  Confused of course, grateful maybe, definitely grateful for my life these past four plus years.  I have loved my last few years of life and I am aware of more laughter than pain, my sitting quietly versus throwing up and being sick like that.  I have experienced pain, but I would have to say on the small doses they tell me I am taking they are handling things just fine, I think.

The air guy came out to the house to bring my toilet seat, shower seat and the air stuff.  He suggested that I wear my machine anytime I am at rest on the bed or reclined in my leather corner favorite reading spot.  He said that is helps minimizing people just breathing slows down to a point where they don't wake up.  Well, that was helpful news, and yet sometimes ignorance is bliss.  Now I feel obligated to wear this thing when I am laying down, especially at night when we go to sleep.  I have no desire for my husband to wake up next to me gone.  However, you can see the simplicity of simply slipping away.  The machine sucks in air then shushes it out.  It has blinking lights is about half the height of R2D2, but not as cute and continuously farting hot air.  I have to close the closet door at night because of the light, noise and heat.

I kept taking it off in my sleep the first night.  The second night I got tied up in the sheets and tubes so that at one point I couldn't get out of bed.  The following night I ended up pulling out a handful of hair at the back of my neck where the tube had gotten tied up with my hair.  I have finally managed to get the basic requirements down to use this machine.  I think it actually might be helping.  sigh.  So now I am using it anytime I am resting or sleeping.  I still have no intention of going outside with one of the air tubes.  They weigh as much as I do and have the same figure.  A small skinny cylinder.  They say people and their dogs start to look alike.  It would appear I am starting to look like my medical supplies.

Linda and Susan, my best friends from college flew to Jacksonville and drove over to visit.  It will be our last birthday that we can all spend together.  Susan's the day before mine, Linda's is less then two weeks later.  So they brought a carrot cake, my favorite birthday cake and we sat around and laughed.  Susan had take all the time to go through early photos of our camping trips, of growing up from college into careers, marriages, children, parents, and now I take a big step away.  It was wonderful having them here.  It was painful understanding as our little group was changing.  This wasn't supposed to happen for years to come.  But leave it to me to just go off and do something different.

Susan said that she has seen all but one of the houses I have lived in over my entire life.  She said that this home and property better fits the perfect house definition then any of the houses I ever lived.  I had never thought about it, but she was so right.  Linda, is not what you would think of as someone who seeks out nature.  But the second day they were here, they pulled on my wellies and my ducks and follow Bug out into our swamp.  Right after we had several days of rain.  It was swampy but the three of them came back laughing and immediately washed themselves with hot water and Dr. Bonner's peppermint soap to hope they did not take home any poison ivy.

Here is a photo of my honey and my buds:

Linda, me and Susan before they headed out on their swamp walk

Linda, Bug and Susan swamp walking
They tried very hard not to wear me out and really did limit the amount of time we had.  We did go to downtown Monticello.  We introduced them to Wag The Dog and the brand new clothing store where the florist used to be located.  It is a serious store and looks so shiny and new for Monticello.  Very nice and I do hope they can make it.  We then went to eat at the Brick House and made sure we did not sit at the wobbly table.  The food was good, as always and we had a wonderful time.  I was tired so we could not take time to visit the antique stores.  Susan said she was going to try her best to come back with her honey Jim within the next few months.  Bug wants to take Jim (Susan and myself also) out in the boat.  So I do hope they can work it out.  When one of these ladies says she is going to do something, she does.

I have rested since they came.  I am feeling better, maybe eating better, but still sleeping a lot.  I received my end of life box, or as I call it, my death box.  It includes a well thought out collection of enemas, pills, and liquid drugs of the most common situations at the end of your life.  I think she thought I was upset that it had already arrived, like they were rushing me or something.  She took a lot of time explaining how long it takes to get the box, and if something unforeseen should happen, like a fall, we might need this box and by the time it got here I would have not immediate access to these drugs.  I was not upset.  I was just trying to figure out how to get them to remove the enemas.  There was not a hammer in the box as I pointed out to Gwynn.  She looked confused until she understood that that particular orifice was EXIT only.  No one was putting anything up there as long as I was conscious.  It has pain meds, anxiety meds, super anxiety meds, nausea meds, constipation meds and anti-drooling meds.  Right there in your box, put away up on a high shelf where I will remember where it is, but have it in the kind of lock down you would keep a hand gun in your house.  I am thankful it is here, but again I feel a little foolish because I am just not dying that fast.

I spoke to the counselor when she suggested a visit that maybe I was using up a lot of expensive resources that Hospice could be using on people who are actively dying. 

Yes, that is a good word for it.  I do not thin that I am actively dying.  I just happen to be dying.  So all of these visits and worrying over me just sees over blown.  They smile and shake their heads I think they have heard this before.  I am in no way denying where I am and what is going on.  I just feel that people don't realize how I tend to over achieve, and I won't mind if I over achieve the longest person alive in Hospice in Big Bend.  We will see.  I don't want to work at anything.

I am very happy being taken care of.  I did not grow up ever thinking I would be taken care of.  I went to college and got a degree and a teaching certificate to make sure I would have a broad sense of careers.  I always felt responsible for taking care of my parents.  Not that my brothers didn't take care of things.  Some of them and their wives were real troopers.  But I did everything I could given my situation and that I lived 4 - 5 hours from Palmetto.  But neither of my parents ever gave me the impression that I would be a stay at home anything and be "taken care of".  I would have a career, be an equal partner in the marriage, not some one who sat at home watching soap operas and eating bon bons.  Not that that is not a life for some.  Just not me.  But I have to admit that I am enjoying letting Bug take on most of the work and responsibility.  I do what I can.  That includes laundry sometimes, sweeping the bedroom, hallway, bath and Florida room.  Not all at once.  That is three jobs that must be rested in between.  I did do all of those things today, and yes, I am feeling pain.  But I have realized that I prefer pain management over pain control.  If they give me something stronger then what I am on now I will become a drooling, sleeping troll.  Currently I do not drool particularly.  I am working to find the balance each day of how much control do I need at any moment, rather then saying 4 hours take another pain pill.  I was starting to get sick on the pain meds, but since backing off, and even with using the 4 hour anti nausea pills (which do not make me a sleepy) I am learning to appreciate the pain.  Some less then others.  But it is constantly learning and simply staying ahead will have to wait until a little further down the line.  I am just not ready for that yet.

The music therapist came today.  Bug disappeared out of here like snow in August in Florida.  The therapist was a lovely young woman.  A member of the dream team, but she was unaware.  I told her to go back to the office and check.  We did not know where it came from, but Bug and I believed it.  She played the guitar and sang.  Her instrument was voice, and yes, she has a lovely sweet voice.  She sang a few songs, we talked and got to know each other a little and she promised to come back every two weeks.  Okay, I am willing to use that resource.  It was wonderful just putting on my oxygenator lay back on our bed, with fresh clean sheets and quilt, close my eyes and get lost in the music.  It did make me feel better.  So much so that is when I finished working on my little list of things I can help with, as long as my husband doesn't have to notice.  I know, it still makes no sense to not take full advantage of a get out of jail free card.  I can do anything I want.  I want to still do a few simple things that we all must do.  Sweep, wash laundry, clean the sinks in the bath and the kitchen.  Just find a way to set a time limit so I do not go overboard and over do it.  I am getting better at all of this.

I wish there was a place between the Oncologist and Hospice.  I am not able or willing to continue with treatments, but I am not dying very fast.  They need a place where people like me can get our meds and have minimal medical supervision who help move you back into treatments if there is a new chance, or who will hold your hand and take you into hospice.  But for now this is what I have, and they take very good care of me.  And then my Honey is simply a magic man.  How he gets everything done in a day that he does, just amazes me.

So every day I spend time with my chickens.  Poppy and Perri are growing up so cute.  They will always be small, but the ducks and Hyacinth Ladean keep an eye out for them.  Bug built the ducks several duck houses.  Enclosed one, open cage ones that you could scurry into and be safe from attack from above.  He thought their little homestead out he took a lot of time and thought to try and provide them with everything they would need for safety and enjoyment.  He took Lily and Willie and walked them over to the pond.  I had high hopes that they would take to the pond, and they did.  They walked right down in it and swam the length of the pond, got out and walked back to the chickens.  They joined the chickens again and have not given any inclination of returning to the pond.  They seem quite happy in their little bucket.  Ms Moon had predicted this behavior and I could not argue with her, but I had hoped the ducks would fool all of us.  They did not, and our ducks are quite happy officially as chickens, and the flock is settling in and such precious times just sitting on my little porch and watch all of this.

The cardinals have finally accepted the new location of the birdfeeder.  It is safer for them and less bird seed mess for us, but all the birds stopped visiting us.  The cardinals are a good start and the first birds to check out the feeders when Bug first put them out.  So I can watch my chickens/ducks from my little back porch or I can watch the bird feeder from the Florida room. Every evening about the same time, I take a chair down to the pond and Bug and I are taming our fish.  He just thinks we are feeding them, I know from The Little Prince that we are actually taming them like the Prince and the fox. sigh, happy life

Bug picked up the last garden soil for my flower beds.  Azaleas I rooted in mixed colors running along the side of the barn.  I have hydrangeas that I could fill up another wall with cuttings, so no plants bought so far.  The last side will be a mixture of various plants that I have and love.  But this will still leave all my fruit trees.  I hope he doesn't mind if I plant the trees along the fence line.  I am going to dig up a few plants from the trailer, but not many and only those that are lowest maintenance.  Have I ever mentioned Bug is not a gardener.  We will have a plant planting party at some point.  I have done this before and my dear precious beloved ones showed up with shovels and can do it spirit and my orchard at the other place was planted.

I wish I could explain the happiness I feel.  The sense of relief, a sense of time to live one moment at a time.  That I look around me constantly and my beautiful house radiates happiness back to me.  Pennies are appearing again.  The green of the end of summer.  That rugged dark green that has survived the drought, the rain, the heat and humidity of the growing season of June, July and August.  The trees and vegetation stand tall and happy at this most bountiful time.  The color of the flowers turn deep yellows and blues.  Some of the trees and vines are actually starting to get a touch of fall color.  The air has been drier here the last couple of days and the mornings are cool and comfortable.  The evenings cool off earlier and I am happy.

I know I say that a lot, but it the biggest part of my world, happiness.  I used to say gratefulness was the biggest part of my world.  And trust me gratitude still overflows my cup, but now just being happy takes up like 80% of my waking hours.  No fear, guilt a little better under control, and just a smile on my face.  Bug takes me out to lunch, but runs most of the other errands without me.  I appreciate all my dear friends who I have time to talk to more.  Ms Moon is still making us dinners and Bug is in heaven.  Geeta has also started bringing food, but not so much and I need to be careful when I eat her food because I don't eat it every day.  Carrie Ann & Co brought me a quiche a week or two ago and they are all asking what else do we want.  I don't know, I am too busy being happy.  Smiling, singing, and soon to be planting plants.  Life is wonderful.

And more updates as I am able to write.  I had a pinched nerve issue in my neck, right where my C6 and C7 vertebrates are.  It caused minor pain, but total inability of using my right hand, and my left isn't so great.  Bug has been doing our version of traction and it is helping.  I was able to type this.  Hand writing is a different story.  It is very uncomfortable and with each letter written now they because less identifiable.  They are scratches and my arm gets weaker and weaker and then finally I just have to stop.  At least I am able to do work some days on the computer.  The rest of the time, well, I guess I just need to celebrate the joy and happiness with Bug, my animals and myself.  Not bad at love.

It has taken so long to get this written, but finally it is done, hopefully mostly understandable.  And I have my little farting breather on and my drugs are working and now time to sleep. 
Sweet dreams.