February 3, 2010 (Meeting with ORN staff)

Today Brad, Janice, and I met with the social worker, the nutritionist, and the physical therapist at the care center (Orem Rehab and Nursing). 

Probably the most important thing we learned today was that the PT specialist agrees with our perception--Dad has not been improving at all.  The main reason for his lack of improvement is that he has, or at least *thinks* he has, too much pain all over his body to actually try to do any serious rehab.  We asked them to get Dad a neurologist's opinion on how that pain could be caused (if he could possibly have fibromyalgia or some nerve disease, etc).  Since he also had the swelling in his right hand this past week, some form of arthritis could be an explanation.  The social worker also suggested it was possible that he was making up the pain to get attention.  The physical therapist also noted that when Dad says he is in pain, his voice and facial expression are completely lacking any sign of pain--no wincing, no grunting, no raise in vocal pitch, etc., and that those details led her to believe he could possibly be making it up in his mind.  Until we get to the bottom of this constant and ubiquitous pain, there is really no chance of Dad improving enough to be released from the care center. 

Because Medicare will no longer pay for Dad's care if his progress stops, we will soon (within the next week or two) have to invoke Dad's long-term care policy through State Farm and use his Social Security income and other income to pay for his care.  If he is being treated with physical therapy, he cost per day in ORN is $350, which amounts to more than $10,000 a month.  Without physical therapy, the cost is substantially less--$145 per day.  So, we need to make the decision whether we all want to go broke trying to keep Dad in physical therapy, or just give up on him....  The physical therapist is pretty doubtful Dad could ever attain any progress, but I think there is a chance that if we could get to the bottom of his pain, we could get him working hard on his rehab.  Hopefully the neurologist's exam can help us make a more informed decision.

I talked with the VA people today, hoping there would be some hope for veteran's benefits, but I think that is a lost cause.  Unless Dad had served in a war or during a war era or sustained some sort of injury during his army service that has become chronic, there is no benefit he is entitled to from the VA.


Dad has lost nearly 15 pounds since his stroke.  His last-recorded weight (taken a couple days ago) was 160.  He was 172 when he entered ORN and we think around 175 before the stroke.  We've noticed this loss more in the last few weeks.  His appetite seems diminished more than usual lately.  The nutritionist said the nurses' records state that he takes in about 2/3 of all the food they give him, which is never cause for alarm because most people don't like every type of food they are given.  We will try to bring in Dad's favorite foods more often now, since the weight loss is substantiated and we've obtained permission from the staff to bring in food whenever we want. 

Dad's preoccupation with his bowels and with his hemorrhoids was also discussed today.  After the meeting with the staff, we went and talked to his nurse, who is nearly positive Dad does not even have any sign of hemorrhoids.  We asked her to examine him the next time they were changing his brief and confirm that.  At least then we could tell Dad there is no reason for worry in that area and that the pain must not really be there, or is caused by something else.

So there was not a lot of good news today, which we were expecting.  Still, it is hard to deal with decisions that will have to be made soon.