Friday, June 18, 2010

Reason for hope on a dark and lonely road

My mother, as I've detailed here before, is trudging down the long road of dementia. It's an ordeal that many have faced, a problem for both those afflicted and their families dealing with the myriad of problems that are part of this disease.

One of the greatest hurdles, ironically, comes from the bizarre system of medical care that's been created in this country. It's a system that provides remarkable aid for all sorts of mundane and catastrophic situations -- broken limbs and sore throats, heart disease and cancer. But the healthcare community seems to still be stumbling around in the dark ages when it comes to treating any form of dementia.

The problem, and I'm speaking now from experience, is that when patients grow old and lose the ability to pay close attention to their care, they and their caregivers fall into a bottomless pit, filled with an assortment of doctors -- primary care physicians, neurologists and psychiatrists -- physician assistants and physical therapists, all making suggestions and all passing the buck.

My guess is that people and caregivers dealing with any sort of chronic ailment probably face the same issues. The problem isn't the disease, but the number of healthcare workers involved in treating ongoing ailments and the archaic system of communication that remains at the heart of our medical community.

In the last year or so, my Mom has gone from living in her own condo, taking half a dozen different medications, following the advice and instruction of one doctor -- her primary care physician -- to now living in the "Memory Care" ward of an assisted living facility. Today she takes 14 different pills -- meds for blood pressure and cholesterol, depression and insomnia; pills to boost her appetite and quiet tremors and hallucinations. There's another half-dozen pills prescribed for use as needed for aches and pains, stomach upset and anxiety. She has a neurologist, two psychiatrists, physician assistants and physical therapists. I've lost count of the number of nurses and aides responsible for her care.

At first blush all this attention might seem to be a good thing, something to celebrate and not condemn. There's only one problem -- these people don't talk with one another and there is no central database where information is stored and updated. It's up to me, my brothers and other caregivers to make sure instructions are passed along correctly, that aides charged with handling meds are doing so correctly, that the orders of one physician countermanding the orders and prescriptions of another are correct and carried out. This is absolute madness.

But there is a bit of good news. Today started out badly, very badly. It ended on an optimistic note.

My brother and I met at Mom's assisted living facility to pick her up for another appointment, this one with yet another physician assistant at the geriatric hospital where she has been treated several times. In the last few weeks, Mom's condition has worsened significantly -- she's no longer able to walk, to feed herself or take care of any of her personal needs. She's lethargic, speaks only if prodded and is now showing signs of Parkinson's, one of the nasty little side effects of the form of dementia (it's called Lewy Body) that she's battling.

So what's the good news? The physician assistant seemed to be more shocked by Mom's condition than either my brother or me and set about finding out what the hell has been going on with her care. She pretty quickly announced that it was clear Mom was over medicated and dehydrated. She studied the med info they have on file at the hospital and checked out the folder I brought along that details recent visits and med changes. She then repeated the line I've heard so often from physicians and other healthcare workers in recent months, "this is what we're going to do now."

But unlike her colleagues, after making several changes and suggestions, this physician assistant detailed a plan of action -- new meds, plans to contact the med nurse at Mom's assisted living facility, notes to care workers about the importance of hydration and the need to monitor Mom as old meds are stopped and new ones are started.

Most startling and refreshing is I just got off the phone with the physician assistant -- she called me! The details aren't really important, it's the fact that she took the time to touch base with me about a topic she thought important regarding Mom's care. She then added that if Mom doesn't perk up in the next couple of days that I should give her a call and there are some additional tests that she'd like to order.

It was about then that I recall something she had said in a sort of absent-minded way while looking over my mother's chart earlier in the day. "If this was my Mom, I'd certainly be concerned about her care." It was just a little break in the professional facade, a bit of empathy that hopefully means we might have stumbled onto someone special.

To be sure there will be additional challenges in the coming weeks and months. But I'll grab hold of help and hope anywhere I can find it. And on this day it seems we were handed a small gift that just might lighten the dark road my Mom is navigating.

1 comment:

  1. Thank goodness you found one good care provider who'll steer you through the system. Prayers sent up for your entire family!