My Dad is now being kept comfortable. After 4 rounds of antibiotics and iV antibiotics the Drs. said his pneumonia was continuing to get worse and that antibiotics were not helping the aspiration pneumonia was caused by the PSP and there is nothing more they can do but keep him comfortable.
Today I was told by the nurse that his coughing is so bad they are going to start him on morphine to help with the cough and any pain he may be having. I asked her whether this was a sign he was very close to the end and she said "you never know with Donald, he just keeps bouncing back."
I live out of state and was just there the second week of NOvember. I am going back for 2 weeks starting December 20 and all of our immediate family will be at Mom (Dad's in a nursing home) but our plan is to bring Dad home to be with all of us, even if that means hiring an ambulance to transport him. I guess my question is does the morphine mean he is very close to leaving use and should we celebrate Christmas early.
The nursing home he is in has wonderful caregivers, who he just loves. But they never really tell us (perhaps they don't know) how close Dad is to leaving us. Any ideas/suggestions would be greatly appreciated.
Hugs
DeeDee
Written by
ddspan
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sorry to hear about your dad. im sure you have some wonderful memories as i did. my husband has psp and it is so hard for me I lost my partner to this disease 5 yrs already. I have help all day but i take care of him at night and it is so hard. I dont sleep too good since he constantly moving around..and waking me up. he doesnt talk very much and it is hard to understand him. my kids are great but all live a plane ride away. they come as often as they can but they have their own families. im so sad all the time. be well bubbie
Thank you all for your kind words -- you always manage to make me feel better. Bubbie I understand exactly what you are going through Mom who is 85 was Dad's sole caretaker (she dd get some help from hospice) and we (the children) all live in different states. We would each try to get down 2 times a year but it still was not enough relief for Mom. She was worn down, bruised and didn't sleep much. Finally this April when Dad could no longer move from his wheelchair to the toilet or sitting chair without being lifted (Mom weighs 112 lbs) we all came together and talked with Dad about a Nursing Home. We checked all the ratings, went to the top 5 rated in our area and picked The Royal which we thought would be best for Dad. It's small only about 80 patients, clean and the staff is incredible they just love Dad because this disease has made him happy and very childlike -- although he can no longer talk he smiles a lot). We were blessed to find this place and when Mom was ready to let go everything fell into place and Dad was able to get a bed there. The Royal has been a major blessing in our lives.
Didn't mean to go on and on but Bubbie my message to you is please take care of yourself. This disease seems to touch everyone in the family not just the person suffering (who is actually the one who suffers the most - no doubt) but it leaves family members with feeling of guilt (why can't I live closer -- I've been away 30 years), how can I do more to help, etc. There really aren't many answers to those questions however again I say Bubbie and family members please take care of yourself too.
To those with the disease you are courageous, admirable and believe me loved and admired by many. You all are always in my prayers.
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CBD-How do you cope?
Fighting death 
Choices?
Morphine & Oramorph. 
Love you lotses dad xxx
