same life path, different JOURNEY

This weekend is ushered in with many more smiles than several before and I accept it completely. I had the experience of firing and then hiring a hospice team and the over all experience was a bit more draining, physically and mentally, than I had envisioned when I felt, in that down deep space in my gut, that a hospice change was eminent.

After the third medication was delivered without the proper dosage and amount and after sharing my concerns up the line of command, I was more than convinced that the only option before me was a new hospice team. So as of Thursday evening late I am now a client of JOURNEY HOSPICE. My decision was well thought and discussed, considering I never imagined being 'forced' to make a change and like moving, it too had its stressors. But knowing that I had six months worth of experience as a patient, I knew what care I needed and what care I had the right to expect.

Now that the transfer is complete I believe the opportunity is before me to focus more on a 'wellness plan', less on micro-management of people that conveyed their competency, their passion, their concern only to learn that when the lights turned off at dusk, I too was another number and those proclaiming to be worthy of befriending were merely following a structure that was mostly mandated and directed by federal standards and the rest, by a set of guidelines imposed by persons who have, at best, been instructed to be more clinical and less emotional in a care situation that only separates the clinical and the emotional by subjective job descriptions.

All the words of 'we are hear for you, this is your care, we care deeply about your well being', were spoken without feeling, but with order of instruction from hospice administrators. To not hear a parting word was little surprise ,but the feeling of loss does linger and the feeling of mistrust does allow me time to reflect. Another memory has been etched in my mind and what I will and do remember has the potential to keep me guarded at first, with my new team from JOURNEY. The knowledge gained from ST. Michaels is invaluable and will prove useful to myself and others who are placed in the position, to determine the quality and participants in end of life care, this caring specifically being mine.

The very thought of non-attachment to my situation and to me proved itself after I gave word, out of respect, of my intentions, to those caring for me, only to be left, strangely, without any well wishes or signs of remorse or concern for my overall health care or the mistakes and inconsistencies that I could no longer nor should have to tolerate. The bottom line, I was a number and the players, some without the authority to correct a pointed out and previously discussed situation showing signs of incompetence, parted without being able to correct a growing problem, for administration was not willing to listen to my concerns and correct them, including replacing some team members. I watched my faith in their ability to care clinically, emotionally, stop on all levels and the promises of never walking alone prove false.

Being more knowledgeable through my experience, my family and untimately me were able to carefully and methodically choose a new team that has shown the ability to think outside the box in their care for the terminally ill and THIS makes me feel good. Knowing what worked and what failed with my previous team, allowed me the ability to walk cautiously and listen for 'buzz' words that needed to be spoken to me and to my family and again to me with conviction, to make a decision on future care.

That decision now made, I feel refreshed and balance like I felt once before, upon accepting my disease and embracing my terminal fate as my own.

tuesday 07.09

I sit and rock back and forth and sometimes back again in a chair that no longer exists, however; the rocking continues and my vision becomes blurred as a drop of sweat makes it's way from my forehead past my brow.

When the knot in my throat makes me quiver and sometimes shake, my once firm hand is there to catch the now falling tear. Sometimes I miss the tear and the taste touches my lips that are locked in silence.

sunday 03.09

I am still trying to determine what kind of weekend I am having, remaining in Texas and away from Florida. I have role played situations and created a plethora of thought, many unwarranted and the rest probably unjust as it simply is my mind self sabotaging any type or degree that I had of self image and although I am quite bothered that I allow myself to have these thoughts at all, I am equally bothered at the non response I have gotten from too many that I was supposed to see on my journey east and that response has been none at all.

It is another simple case of, if it is not there, it does not exist and life goes on. Only in my mind, it still exists so I am surprised when I call one who just two days ago was talking to often, making detailed plans with me, is no longer available or able to receive a phone call. And if it were over a few hours I could better digest what I figuratively am thinking but because the silence is so pronounced now, over a series of more than two days, I do not understand ones and mores inability to pick up the phone or respond to a left message or a sent e-mail.

All the while I realize that plans do change and rapidly at that and probably the worry is for nothing, just another reason I can give to keep from sleeping at night. Obviously I need to explore this issue further only because it seems to be a recent pattern of mine and the thoughts once so positive and so light have become a darker color that if I allow, and a few hours I have, my mood becomes somber and fight, so valiant, less important.