Q: So, how are doctors like Zen masters?
A: You go to them seeking answers and all you get are more questions.
Ba-dum-dum.
Questions seem to be all I have lately, and no one seems to be stepping up with any answers. The questions began on Monday, when Dad’s lung doctor – who was supposed to be telling us whether Dad had COPD or pulmonary fibrosis – pointed his finger back toward the cardiologist, with an assessment that the problem really was congestive heart failure. The cardiologist flat out told us two months ago, that, no, congestive heart failure wasn’t a part of Dad’s problems at all. Instead, he said his tests showed lung issues, so we needed to see a pulmonologist. We left with the understanding that lung guy and heart guy would talk amongst themselves and see if they could get past this impasse.
Then came the question of when Dad might be coming home from rehab. Initially, the insurance company wanted him discharged by Friday. But then came word that he also is dealing with a methicillin-resistant staph infection in his urinary tract. He’s now on antibiotics for that condition, and the insurer says he can stay until Monday, so he can get a bit more rehab, but then he’s out. I went back and forth a few rounds with the insurer’s case manager, but I’m doubtful I gained him any more time. I’ve also got the nurse practitioner who covers patients from Dad’s primary-care practice checking him out to see if she can see a real need for him to stay longer, but there’s a strong likelihood he won’t meet the criteria for more time.
The issue is that a rehab/skilled-nursing facility is intended for patients who have a medical condition that needs skilled attention or a physical issue that can benefit from physical/occupational therapy. Just having to take another pill twice a day doesn’t meet the standard for requiring skilled nursing, and the therapists believe they’ll have Dad as far along as he can get with them by Monday.
I have a big fear right now regarding Dad’s Monday release. He won’t be finishing up his antibiotics until two days after he gets home. Then, we’ll just have to see if symptoms return. When these antibiotic-resistant infections first started becoming a broader problem, the guidance was to test, again, two or three days after the antibiotics were finished to see if the bacteria was re-emerging. Now, though, since many of us are colonized by these bacteria, such testing may simply be pointing out evidence of non-problematic bacteria, and resulting antibiotic treatment could actually help the bacteria become more resistant.
And, a second concern is that he just isn’t physically ready to be back here, that he could benefit from more physical and occupational therapy. I put this concern to the insurer’s case manager, who put the ball back in my court, with a question of her own: given that there’s only so much such therapy can accomplish, do we have a long-term plan in place if more therapy doesn’t make things better?
The only real plan we have in place is to hope that’s a bridge we don’t have to cross.
But on Friday the nurse practitioner made me realize that we actually may be on a direct course for said bridge. I was talking through my fears regarding the infection with her – especially that Dad could end up back in care very quickly if the infection hadn’t cleared his system. She responded that, with or without the infection, she wouldn’t be surprised if Dad were to need to be re-admitted within as little as a few weeks, given all that was going on with his kidneys, blood pressure and assorted other problems.
Now, one could argue that such a likelihood should be an argument, in itself, for Dad’s continued care. But that kind of custodial care just isn’t what a rehab facility is intended to provide; instead, it’s more the province of a nursing home – the threshold of which being the bridge we just don’t want to have to cross.
So, while I’ve gathered some answers about the immediate situation – the infection is likely not as scary as I initially thought, but Dad’s currently limited mobility actually may be the best he’s capable of doing – larger questions remain. Whether (he’ll eventually need nursing home care, or die before that happens) and when (either of those eventualities will come to pass) are the biggest of these unanswered queries, and I don’t think doctors will be much use in my search for the answers. Instead, I’m attempting to take what I’m calling a Zen-sational approach, and keeping an open mind to allow the answers find me, instead.
March 15, 2010 at 9:38 pm03
Well, I gotta say I think you’re pretty much of a saint to undertake all this. I know the path you’re walking all too well.
At 88, I think your dad’s just pooping out, like an old car. It’s no longer just tune-ups and oil changes, but major system failures. Just when one is brought under control, another fails . . . and will continue to do so, until the machine cannot be made to go further. But you already know this.
My dad’s last years followed a similar pattern. There was the quadruple bypass, the torn sternum, the infection picked up in the hospital, the perforated gastric ulcer, the always-serious-in-the-elderly urinary tract infections (which were continual, once they started), the COPD, the low oxygen levels, the breathing treatments, the colitis, the falls, the trips to the ER, stints in rehab, stays in nursing homes, months at home, back to the ER, and so forth. The longer he traveled this road, the weaker and more confused he became. And combative. For someone like him, and maybe your dad, too, modern medicine was a curse in the end.
My dad was 80 when he had his bypass and endured three more years of life before he mercifully died four years ago. Sadly, he was alone in a nursing home, because, through it all, it was discovered that my mother had early-stage Alzheimer’s Disease–and a drinking problem requiring hospitalizations of her own (and rehab!)–so could not care for Dad at home. Never mind that she was over 80, too!
The one thing I would ask Dad, if I could, is this: Would you do it all over, again, or would you take your chances and maybe go out suddenly and quickly with a stroke or heart attack?
As far as the COPD or the pulmonary fibrosis, I wonder if it even matters at this stage of the game. Do you think your dad will return to his formerly-vigorous self, or are you hoping to just keep him plugging along for as long as possible, no matter what.
During one of my dad’s periods at home, his oxygen canula had dislodged from his nose while he was napping. After a while, a visiting nurse arrived and found that his oxygen reading had fallen to a dangerously low level. An ambulance was summoned, and Dad was carried away to the ER, admitted to the ICU and intubated. But, what if the visiting nurse had not arrived? What if we had left Dad napping in the next room, while we went about our business, unknowing? What if?
May I just say that you’ve written so compellingly in your blog about many of the issues, thoughts and feelings that plague those of us who are, or have been, caregivers for the elderly. So, thanks.
October 17, 2012 at 9:38 am10
I started out reading the Health section of the New York Times, surfed a link to your blog (from an announcement of your Dad’s passing) – & So far have read this far, March 14th, 2010, the day I detached my unconscious Mom from life support. She died in my arms.
Thank you for sharing your journey! I’ll read all the way to the end – even though I know what happens.
I’m beaming my thoughts of love & light to you on the Cape. I still possess a big teddy bear I won at the Barnstable County Fair on summer vacation as a kid…
Walking with a dog makes everything surreal more real – so you can touch it, find comfort & peace.
((((hug))))