Learning about Palliative and Hospice Care

On Monday, James and I met with a couple of ladies with Palliative Care.  Holli is a nurse practitioner and Paula is a social worker.  They helped me to understand what we will likely be facing in the next little while.  They explained that palliative care focuses on quality of life.  There is still the option of seeing the doctor or going to the hospital if needed.  James has complete control over the decision of when to enter hospice care.

Hospice care will essentially help to care for him for the last six months of his life (roughly).  They use a scale of 0-10 to help determine how his quality of life is, with 0 being the best and 10 being the worst ever.  Last week he told Holli that he was probably at a 7, on Monday he said he was maybe at 6.  But Holli and Paula helped me to understand that it is not a matter of whether he is fighting to live or whether he is giving up, palliative care helps to focus on goals.  He is simply working toward a different set of goals right now.

One of his goals is to be able to spend Christmas with Bob and Teresa's family in Pinedale.  He really wants to have a fun Christmas with the kids.  Another of his goals is rebaptism.  We do not have a definitive timeline on that right now, but it is something he is working toward.

I did ask him to try and not die on my birthday...  I like my birthday, I don't want a reason to not like it, it helps me get through the winter, having something like that happen would make me sad and not like it.  I did realize though that if it happened, I could live with it.  I might not like it, but I would live.

At any rate, his prognosis currently is as such: they had started a different antibiotic for him, it is a lot slower acting than many of the other options, but he is allergic to all of those other options.  It does seem to be making some improvement, but it is slow.  He has had some trouble with his gastrointestinal system.  Seems to have stuff not moving well through his system.  His stomach feels overly full and that increases his trouble with breathing.  He has been taking miralax and they tried to get him to drink golytely, but he just could not choke that stuff down.  He has had some relief but not enough to really feel better from that.

With any luck, he may get to come home on Thursday (tomorrow) but we are kind of playing it by ear.  They want to be sure they have machines for him to use here at home, as well as all of the proper medication.  They will keep him at the hospital until they can make sure he will have everything he needs here at home.  He gets lonely, and he misses me and Foster, we'd go up more frequently if gas prices weren't so high and we could afford it.

Holli and Paula are going to meet with us again tomorrow at one'o'clock to talk some more.  I do not feel like I am in despair.  I do worry for James, I do not want him to have to suffer, I feel like he has suffered enough and I just want him to be as comfortable as possible and not have to linger for longer than necessary.

I have always known his wishes, he does not wish to be intubated (have a tube put down his throat to help him breathe).  He does not wish to be resuscitated if he were to die or quit breathing.  He has never wanted to be placed on a list for possible lung transplant, and at this point if he were to change his mind, it would likely be too late.  I have had 15 years of marriage and 22 years of knowing him to come to terms with these things, and that is fine.  It has taken years of going through almost a grief process to come to terms with some of these things, and that is okay.  I am at peace with whatever may happen.

We haven't always had an easy go of things, but I have enjoyed the time I have had with my Jamus.  I have my moments sometimes I am fine, other moments I fall apart, but that is okay too.  Paula explained I was likely going through some pre-grief, I was like no kidding...  I do feel like I am grieving his death before he has died, but I am preparing myself.  Some people don't have the opportunity to prepare for such things.  I consider myself blesses to have the opportunity to not be shocked or traumatized by a sudden death.  My beliefs help me to know that I will see my J again, and that helps to ease the pain.

Holli explained too that CF patients are lucky in a way to be able to partially orchestrate the last time of their lives.  They have some control, some options, they can make choices so that they and those they love can be saved from some end of life things that other people cannot do.  I hope I do not sound morbid, I am not meaning to, I just know that this has always been at the center of our marriage.  James' ultimate demise has been the center of his life, his whole life.  Sometimes it is hard to live when you are continually told you are going to die.  I think J did a pretty good job considering.  He has things he wishes he could have done in his life, both in and out of his control, but overall, I believe he has lead a pretty good life.  Sure he has regrets, but honestly who doesn't.

I know I can say for both of us, we are so especially grateful to everyone who has kept us in their thoughts and prayers, who've fasted for us, or placed our name on prayer rolls.  I maintain that were it not for prayers of everyone on my behalf, I would not be upright.  While I know J often still doesn't feel well, he has shown some improvement and we have been educated on what to expect in the coming weeks and months.  In between hospital visits I asked him how long he thought he had, he said maybe a year.  Although it was a sad moment, it helped both of us to mentally prepare for what we are facing.

We would like to ask that if you have it in you to keep praying for us, please do.  If you can keep your thoughts turned to God's will and acceptance of His will, that will help all of us.  I will try to better and keep people updated, but sometimes it feels like it changes minute to minute or that I don't have anything new to report, so forgive me if I don't always give an update.

Thank you all again, B and J