Bill's Thoughts Sept 22, 2012

Thanks John for the update, it is very helpful as we cannot see what Dad is going through without your help.

I had a discussion with Tom this morning and felt I should also share my thoughts with you.  First, I know Dad is in a terrible place health wise and what the outcome will be.  I feel guilty because I don't want him to die and I feel guilty because I do want him to pass on, not sure if that makes sense or not, but either way I feel that I am a bad person for thinking these thoughts.

I do know that I don't want Dad to suffer anymore than he is or has and there is very little likelihood that he will improve.  I have been reading everything I can find on end-of-life scenarios to better understand or identify when Dad's time is near.  There are not a lot of good articles, but the ones that did give some insight tell me that we should expect:

- Profound weakness, this means unable to get out of bed or to even turn over in bed.
- No interest in food or drinking, with several sources stating that a patient can live 30 days without food or about 2 weeks without liquids.
- Trouble swallowing food or pills
- The patient will be very drowsy, often sleeping most of the day
- arms and legs will feel cool to the touch as the patients circulation slow downs
- The patients fingertips turn blue as due to the lack of oxygen.

I share this with you because I want you to know what to expect and to try and understand the process.  I am sorry if this is more detail than you might want or if it causes you uneasiness in anyways.

I see that Dad has some of the signs listed above and I am going to call Dr Heidari and Trang to see if they can give me more specific details as to what to expect in this process.

I told Tom that I do not want to stop him from having a conversation with Dad about how he would like to spend his remaining time and for them to spend as much time doing whatever Dad feels up to. I am against taking him off of antibiotics until I can get more answers.  I want to ensure that if Dad does live a few more months that he will not have the infection come back.  That might mean keeping him on his current antibiotics until such a time that it does not matter, which could be now, or switching him to another, less invasive antibiotic, or to have the doctors tell me that they believe the infection has been reduced to a level that Dad should not have to worry about it coming back.

If he needs antibiotics, more specifically his current ones through the picc line, I would like to see if we could reduce the dosage back.  I am also not against switching to an oral antibiotic if the doctors feel that it would be adequate.

I am also going to check with Hoffman Hospice to see if they will or will not administer Hospice while Dad is on antibiotics.  I believe that if Dad needs to be on an IV antibiotic that we will not be able to get him 24/7 care at home and that Rosewood may be the best alternative, but that is jumping the gun.

I believe Dad also gets to make the decision, but we need to provide him with as much information as possible to make the decision.  I have, as most of you have too, seen Dad in tremendous pain when the infection came back.  I also believe that Dad, while he has gotten much weaker, is still fairly strong and is not within a couple days of passing away.  But I am not God, and only he knows for sure.

I will be heading down Monday morning to spend time with Dad and to help in anyway in assisting Dad along this journey.  In my opinion there is no good choice or a selection of painful choices.  I do not want to be a roadblock for anyone spending quality time with Dad, but also do not feel that Dad sleeping 20 -22 hours a day in his own bed right now if necessarily better.

I appreciate you letting me share my thoughts and again, I hope I have not offended anyone as I truly believe we all want what is best for Dad and that we all love him very much.

Love to all,

Bill