Writings of Constance Ore ( 1937 – 2010 )

This is hard to do. My stomach is sick most of the time, even without eating, and my energy is such that the oxygen needs to be on all the time. I sleep a lot. There is the night voice that comes and says, “Too bad you’re in hospice; before, you could get some red blood and feel better for a while”. Then I am awake and the rational thought returns; there is no other route selected for me.

Think of all the people one sees going out and about in a wheelchair, oxygen bottle near, the nose piece in place. What other lives lie behind them? Last week, John-paul got the wheel chair, the oxygen, the dog’s leash, the Mama and the dog all put into the car, and we drove over to the walking trail that is near town. Alphie thought he had gone to heaven, and behaved accordingly for the first moments that we were in this new space, but then settled into the walk. I had on a sun hat and sun glasses, so I was pretty certain that I would not be recognized. I do and I don’t wish to be seen – One has to be brave about going anywhere because you are no longer who you were before. We met a young woman whizzing along on her bike, and as she passed, she flung “Hi, Connie” over her shoulder – perhaps the good looking man pushing me and the great chocolate retriever loping along gave hints of identity.

The illustrator is traveling this week, so we must do with words only

Our actual 50th wedding anniversary took place on Saturday, while our celebration took place in April. This was an excellent plan because I would not have enjoyed food, and the gathering would not have happened in the same fashion since I do look pretty sick now, and people would have been at a loss for words. We celebrated, of course, with Heidi the chef of the day and Charles bringing in many flowers.

I think Charles and i thought that 1) Nearly zero immunities because of the disease and 2) Pneumonia, historically the illness that gets one over to the other side, meant that I would die very soon. Sadly, we were wrong. I say “sadly” because the disease takes just a little bit of who and what you are each day. This is hard. Now my balance is challenged so I really do use the walker with the tennis balls on the ends of the pieces that keep you upright as you fling your shiny and clear green oxygen tube over your shoulder and go forth. Unfortunately, due to a general lack of all the skills required, I have rolled over Alphie’s tail – just the very end, but causing great affront as conveyed though his big sad eyes. I also have given over to John-paul the morning walk through Sanctuary because of not enough energy. He takes the camera and brings back lovely photos of sunrises, spider webs, and other delights, but it is not the same.

This Tuesday in August I slept all day. Last night I was sick to my stomach, and when one is also dependent on heavy duty drugs, then the problem becomes what goes, what stays, what went and how can that be sorted out. (I chose to not do the pain pills, to the hospice nurse’s relief.) I now think “well, that wouldn’t be so terrible. . .perhaps it would take me to the quiet and peaceful death that we all hope for.”

So goes life at Sanctuary right now. Charles and John-paul keep everything in order, with mowing, trimming, cooking and care. Alphie has one ear and one eye on John-paul much of the time because the rides, walks, and general good times are begun there. I pray a lot, and I hope to die before I get to experience the complete offerings that the disease has to offer.

Since beginning the Blog, many of you have written in response “I’m (or) Mom (or) Dad (is) in Hospice now”, to tell me about the profound step that this comment encompasses… The thoughts about antibiotics and other meds that might take this away were there right behind the eyes, but the rational self repeated again that there is no way to delay or hurry death. We all die, so everyone you meet today will join you and hopefully whatever has been your own most glorious mental image of heaven will begin to surround you. I don’t know the great mystery.

The disease is most profoundly involved in my left lung. If I take a huge breath, the lung informs me “Don’t do that”. The loud, constant hacking must be annoying, but the caregivers assure me it is “nothing”. I think “hah!” but drop the subject. My life has not changed greatly since last week,that is, in the cadence of how the days move but as I go through it feels like its takes me a long, long time. I am inhaling oxygen and I reel a little when I walk, so you can imagine someone hovering, right? My energy no longer exists and I am getting confused about what day it is.
There. That is the way this feels today. I think I’ll give “The Disease” a big font.

We have found the readings from the Psalms to have the cadence of comfort…Psalm 121, Psalm 112, and on and onward. The best prayers seem to come from childhood. “Now I lay me down to sleep, I pray thee Lord my soul to keep. Asking thee to watch and keep, and to send me quiet sleep.” Perhaps that prayer repeated hundreds of times throughout this life comforts because here is the same God that made me always feel safe. I think we all had a “Pneumonia Moment” when we signed the Hospice papers, and the fact that I am still here is a happy surprise.

Most of us have sung “This Train is Bound for Glory, This Train” at some camp or another, and meeting the hospice nurse was standing on the platform and choosing that train over all the others. The most compelling thing from Hospice is the philosophy of “quality of life”. One has to shift the hope away from other outcomes and also force the brain into “living in the now”. Measured that way, I have a good quality of life at Sanctuary. My pneumonia was conquered by the antibiotics and my lungs are nearly clear now. I use the oxygen each day because of the shortness of breath, but I also go for short walks outdoors with Charles or John-paul.

I’ve just had my weekly meeting with the hospice nurse, and things are looking good. She gave me more information about the very last days – I think one is eased toward “the end” through these conversations. For example, I have a small rattle in the lower lobe of my right lung. (The pneumonia was in the left lung). I will use a device that encourages coughing out the unwanted material, but if the pneumonia comes back in the right lung, I will make a decision, and that is whether or not to ask for antibiotics again. What I hope is that the lung does not give in to any illness at any time. Over all, today has been a good day.

The former senior pastor at Plymouth Congregational said in a sermon, “If anything has life, then it will die.” I can’t remember what point he was making, but this statement has been helpful to me. I look out over Sanctuary and its incredible growth and teeming life, and I think, “All of this is going to die, and so shall we – everything dies”. What happens then is everyone’s own conjecture and as you can see from the comments, there are many beautiful scenarios. No one knows, though a good number of people would say they can feel spirits moving across the universe. For me it is time to “live by faith” as suggested many times and in many ways in the Bible. This is actually a difficult thing, to have absolute, unquestioning faith in God, but when one makes that great leap, peace will follow and the future becomes possible.