When I arrived this morning about 8 AM, I’ was feeling guilty for arriving so late and leaving at 5PM yesterday. His catheter is full of blood. Apparently he has been pulling in the it. I had to wrestle with him a bit to keep him from ripping out his IVs.
They are going to take him down to radiology soon to take a look at his bladder. I had thought they were looking at a thinning of the bladder wall, but the infection specialist told me they were looking at a thickening of the bladder wall.
A thickening meaning a growth of some sort.
The infection specialist is still trying to determine exactly what antibiotics to give Daddy. I’m getting the distinct feeling that this is something really nasty going on in his feet. Infection specialists,…. and the comment from the other doctor of “you don’t want to take this home.” …. I’m wondering what on earth it could be because he had the infection before the surgery. Could it be something from home?
Oddly enough, our regular GP hasn’t said much. I think he just doesn’t want to be the bearer of bad news. He was in the room when the infection specialist appeared. He excused himself pretty much immediately.
The infection doctor, after examining Daddy, motioned to see me out in the hall.
He was very nice, understood that I was a bit in the dark about all of this. Of all the medical staff, he is the first one that when I said LBD, knew what I meant, and knew immediately where Daddy is in the stages.
He said “You know your father is in entering into the late stages, don’t you?” Yes, I know. I told him that of the information I had found that he was entering the final sub stage of stage 6. He nodded. He then asked if there were other family members that were responsible for end of life decisions.
“No, just me.”
“Do you know what your father’s wishes are concerning being tube fed?”
“He would not want to be kept alive unnaturally.”
Then the specialist said that we most likely need to be getting a Hospice involved.
The dreaded “hospice” word…I could not help tearing up. The specialist was so nice. A gentle hug about the shoulders. He then said he would meet with the other doctors and discuss the plans for future treatment or lack thereof, and tell our GP that I’m wanting a direct concversation about what’s next.
I don’t want Daddy to see me crying. It seems even when you know what the news is before hand, it’s still a surprise when it actually arrives.
8 comments:
3rd Wife said...
Pauline, I don't know what to say. But you know where to find me if you need to get out, get away, reminisce, or raise a glass (or two!).
And Please(!), of all things you're feeling, don't let guilt be one of them!
kddove said...
Remember.. for the most part, Daddy has already gone. And try to think how you'd feel if in his place. If he has said no unnaturally keeping him going, he said that when he still understood it, and meant it.
And Ditto on what 3rd wife said...
Stella said...
You have carried this valiantly for years. It may be time to lean on other's shoulders. No second guesses about what you could have done differently. You have cared for him with love, as you will continue to do. I'm so thankful for Hubbie.
hassana said...
My prayers are with all of you Pauline. Believe me, the kind of care and attention that you've been giving to Lewy for the past so many yrs requires unusual strengths and patience .I'm sure Lewy is very proud of you Pauline and I'm also sure that he feels every bit of your unconditional love, keep it flowing, this is what counts now.. Hang in there, stay strong!!
pearose said...
Pauline - I am so sorry to hear the news. You have the support of your friends and remaining family. I'm here in any way you need me and will be glad to help out if needed. You are in my thoughts and you have my deepest empathy about upcoming decision-making moments. Give yourself and Lewy a small hug for me. You are all loved by many - know that we're here.
pearose said...
Pauline and Hubbie - how ya doing? I don't have your cell number and I also don't want to intrude, but was wondering how everything is going. You are in my thoughts and will be for days to come.
oldfriend said...
(((((hugs))))
Bailey said...
Hello -
I read your blog about your father. I too had to enlist the help of hospice for my father and myself.
I wanted to let you know I am a documentary maker and hospice volunteer in Atlanta, Georgia.
I've produced a short documentary about end-of- life decision making, palliative care, caregiving and hospice.
It's called 203 Days.
You can view it in its entirety at the following University of Connecticut website along with a study guide.
It is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 year old woman who is living with her daughter.
http://fitsweb.uchc.edu/Days/days.html
203 Days recently won the First Place 2007 Film Award from the National Hospice and Palliative Care Organization (NHPCO).
If you'd like more information please go to my website
http://bbarash.com/bb_203days.htm
I hope this film is helpful to people who want to know more about some of the most common experiences for caregiver and patient at this difficult time.
Bailey Barash