REPRINT 2010 – Challenges of a Long-Distance Caregiver

My parents and my aunt represent two ends of the aging spectrum.  My parents fall into the category of “healthy,” independently living older Americans.  That is, while they have fairly serious multiple chronic illnesses and increasing impairment (arthritis, blindness, hypertension), they are moving through their seventies still coping pretty successfully.  My aunt, on the other hand, represented an increasingly uncommon demographic: an early death in her sixties from an untreatable acute illness.

My Uncle Hubert Langston is something else.  All his life he has been something else–a wild child, a hell-raiser, and a black sheep.  Now at 68 he is the proverbial train wreck.  He has hepatitis C, Parkinson’s disease, and diabetes, he is deaf, and he has end-stage renal disease requiring dialysis two or three times a week.  I’m sure there is more, but I think that’s quite enough.

Uncle Hubie lives in a house he bought a few years ago with his wife, about 90 miles South of Las Vegas, right on the Arizona border.  He is retired, living on social security. His wife, who also has serious health problems, still works in a clerical job in the gaming industry. Their adopted son Billy was a soldier deployed in Iraq when this was happening.

In the summer of 2008, my uncle had been in a steady routine for several months. He took the bus to his dialysis appointments, made dinner for his wife, Aunt Christie, and watched TV – which I suspect may be improved without the sound, anyway.  But this stability was shattered when he came home from dialysis one day ranting and raving and then ran out of the house, seemingly out of his mind,.  My Aunt was obliged to call the police out of fear for his safety, and they took him to the local hospital.

There he was physically restrained (probably necessary), put on the tranquilizer Haldol (vitamin H as it is known in the business), but not dialyzed.  He was diagnosed as having overnight-onset Alzheimer’s disease: a largely imaginary condition.  No one on his medical team seems to have considered the well-known difficulty in maintaining electrolytic balance while on dialysis or its possible cognitive side effects.

This precipitated a fairly typical family crisis – Aunt Christy feeling overwhelmed and guilty, my Dad in California feeling guilty and overwhelmed, leading to my Dad asking me to “go out to Nevada and help out.”  Despite being a first-born parent pleaser, I know my own limits of knowledge and patience.  I declined and adamantly insisted that we hire a locally knowledgeable geriatric care manager.  It took some ranting and raving of my own and forwarding of various links, but we found someone who seems to have been helpful.

In the process, I explored the Nevada Aging and Disability Resource Center website.  A more pitiful collection of outdated links, dead ends, and unavailable services would be hard to imagine.  There was literally nothing helpful I could find.  Google was much more useful, leading to a professional nurse care manager we hired from a firm operating in Southern Nevada.  [Since these events, the website has been redesigned and looks much more useful.]

In the meantime, having diagnosed my uncle as having Alzheimer’s disease and deciding there was nothing more that could be done for him (the infamous Medicare improvement standard), the hospital gave the inevitable Thursday afternoon warning of a Friday discharge.  The plan took my aunt totally off guard: “But they haven’t done anything for him!” she wailed.  They proposed discharge to a far-off skilled nursing facility with the rare combination of dialysis and psych capacity.  However, my aunt was inconsolable; even in the short term she feared the placement would either split them apart and/or cause her to lose her job.  The nurse care manager got busy working on a better placement and asked the hospital for more time.

Meanwhile, while Uncle Hubie was clearly still in an acutely altered mental state, it seemed very unlikely to me that he had Alzheimer’s, which has a gradual onset.  It seemed more likely to me that he was delirious as a side effect of the dialysis or even underlying kidney failure and the hospital and attending physician had just started making stuff up.  By turning to resources at the Medicare Rights Center, I learned more about patient rights and hospital discharge than I had previously been motivated to master.

It turns out that on paper, the Medicare discharge appeals process is very good.  Like most of Medicare it is designed by very sincere government employees who are trying their very best to look out for the interests of the beneficiaries.  So I called my Aunt and told her how to appeal the discharge.  She asked me to do it for her.  So I dutifully called Nevada’s Quality Improvement Organization responsible for managing discharge appeals for CMS.

Unfortunately, implementation of policy is often not so good.  Their telephone number wasn’t answering, their answering machine was full, and their server kicked the e-mail back to me.

Turns out it didn’t matter anyway, Uncle Hubie wasn’t hospitalized in Nevada!  He was just over the border in Arizona.

My newly acquired caregiving assertiveness was for naught.  In a few days, he was transferred to the skilled nursing facility and after a month to another one closer to home.  The care teams in both places were sure he was there for good and got my aunt working on Medicaid applications right away.  However, without there ever being any brilliant diagnosis or breakthrough treatment, Uncle Hubie gradually got better.  His delirium cleared and some light physical therapy (i.e., walking) helped him recover strength lost while being immobilized and inactive.  He did have some wild times when minor but stubborn infections and changes to his medications seem to have caused his delirium to return. But, with the monitoring of the geriatric nurse care manager and support from Aunt Christy, he finally returned to a normal mental state and came home–after more than two months.

A happy ending, yes, but the relatively good outcome seems much more an accident (even a miracle) rather than a predictable process you would want to count upon.  And I shudder to think of the expense in uncovered services and co-pays, much less what Medicare paid.  My Dad (Hubie’s brother) covered the care manager who helped paste together systemic dysfunction and put a band-aid on the incompetence of others.  Is this the system we should have?  What should I have done?  What should I do now?

Post Script

Several years had already passed after these events when I first wrote about them.  In the years since, my Uncle Hubie chose to stop his dialysis treatments (as do many)  and passed away.  Even with the most appropriate care there are many limits to how well people with serious illness can be served and supported.  These limits and the inevitability of death, should not be an excuse for less than competent care while people still live.