This is a story about a son taking care of his father. The father initially had a diagnosis of Parkinson’s Disease. Many years later, the diagnosis changed to multiple system atrophy. (I do wonder if that was the correct diagnosis given the father’s inability to know how to use the bathroom. I’m thinking here of Lewy body dementia.)

The son feels out of his depth. He says:

“Broaching the subject and confessing desperation was like uttering the password to a secret brotherhood of beleaguered, overwhelmed, weary, or sometimes just resigned adult caregivers. But the sect seemed ashamed to be seen.”

The son asks the father to move into an assisted living facility. And, “to no one’s surprise but his own, gave my father more rather than less independence.”

And:

“…I emerged from the whole experience not a little indignant. The medical infrastructure for elder care in America is good, very good. But the cultural infrastructure is all but nonexistent. How can it be that so many people like me are so completely unprepared for what is, after all, one of life’s near certainties? … I am now convinced that millions of middle-aged Americans need more help than they are getting, and that the critical step toward solving the problem is a cultural change akin to the one demanded by feminists in the 1960s. … There should be no need for anyone to go through this alone, and no glory in trying.”

Three resources are mentioned:

“Had I looked harder, I might have discovered the Web site of the Family Caregiver Alliance (caregiver.org), which offers a wealth of fact sheets; the National Alliance for Caregiving (caregiving.org), which offers an online tool to help coordinate care; strengthforcaring.com, which offers ‘Share Your Story’ and ‘Meet Other Caregivers’ bulletin boards. To get this stuff, however, you have to go look for it, which means you have to have some idea of what you need, and I didn’t. What I needed was for the experts to find me and tell me what I needed. And, indeed, to explain why I needed it.”

Here’s a link to page 1 of the article:

http://www.theatlantic.com/magazine/archive/2010/03/letting-go-of-my-father/8001/1/

I occasionally check out the blog of Dr. Wes Fisher, an internist and cardiologist based in Illinois. He posted about two misconceptions commonly held about hospice back in January 2010. The first is thinking that the hospice is going to “save you from the day to day challenges of caring for your loved one.” (There was some discussion along these lines in a recent post here with the subject “Hospice questions.”) The second is thinking that hospice will come in and make lots of revisions to a medication regimen.

This blog post mentions two resources:

* a government publication on Medicare Hospice Benefits. See:
http://www.medicare.gov/publications/pu … hosplg.pdf

* a Los Angeles Times article from 1/22/10 titled “Hospice care helps patients and loved ones,” which I think is a terrific overview of hospice. See:
http://www.latimes.com/features/health/ … 1030.story

Here’s a link to the short post by Dr. Wes Fisher and the full text:

http://drwes.blogspot.com/2010/01/hospi … tions.html

Posted by Dr. Wes
Monday, January 25, 2010

Hospice: Some Misconceptions

The Los Angeles Times had an earlier starter piece on hospice care recently with some remarkable figures:

Over the last 25 years, the number of Americans turning to hospice for end-of-life care has climbed dramatically — from 25,000 in 1982 to 1.45 million in 2008, as more and more people choose to spend their final days in the comfort of home or a patient facility with a home-like environment rather than in a hospital pursuing aggressive treatments.

I have been involved with hospice twice now – once with my father several years ago, and recently with my mother-in-law who just died of pancreatic cancer.

There are many references out there about hospice, and for a general overview for those thinking about hospice for themselves or a loved one, I’d steer you toward this introduction (pdf), provided by the government. Through both processes I have had a chance to see several misconceptions about what hospice is and how it works for patients who elect to stay at home during their last days. I cannot speak to inpatient hospice services since my family members have not elected to use those resources. For those that might not have a lot of family around, inpatient hospice care is probably a better alternative.

In many ways, hospice brings together a team of support personnel: doctors, nurses, chaplains, social workers, etc. to support the patient and their families through this difficult process, but there are some preconceived ideas that might not be clear to those who elect to go the stay-at-home route:

* First, hospice is not the cavalry, swooping in to save you from the day to day challenges of caring for your loved one. They can mobilize the equipment, the 30-60 minute visits by their staff (I am unaware of doctors making house calls, but trained nurses assess the patient then relay the status to the treating doctor), or arrange for help bathing and dressing the person occasionally, but they will NOT be there 24/7/365 when things get tough to wipe their bottoms or give them their medications. They’ll teach you how to do things, but at home, it’s still up to the caregivers.

Not that this is all bad. There is something very therapeutic about reconnecting in such an intimate way with someone you love. Still, it’s the constancy of this care, even in the middle of the night, can take it’s toll and create intense exhaustion and depression in caregivers, particularly when there is only one caregiver performing these duties. But being at home affords other familiar touches that just aren’t replicated in inpatient facilities. Probably the biggest smile we received from my mother-in-law was when be brought our therapy-dog cocker spaniel up on her bed (she loved that dog) – a no-no at most inpatient facilities.

* Medication revisions are more limited than I expected. It was interested to see family members acquire a regimented approach to medication administration at first. Through no fault of their own, it was not uncommon to observe that every medication was ultimately trying to be forced down the gullet of their loved one in attempt to be conscientious caregivers. No one unfamiliar with medical care and medicine rarely realize that perhaps many of those medications become superfluous during the dying process. No one wants to withhold care initially, we’re trying to help! But as their loved one’s renal and hepatic function decline during the dying process, doses of medications (particularly narcotics or steroids) might need to be reduced slightly to maintain a certain level of alertness or to avoid drug-induced delirium from complicating their loved-one’s care. Not uncommonly, drugs previously thought critical to the well-being of their loved one suddenly become less so or completely unnecessary. Obviously, making these decisions is very tough for lay people when you’re in the trenches of day-to-day care or when a loved one can no longer swallow. I found this was a source of considerable angst. Remembering to communicate with the hospice nurses during their visits or calling to ask about these issues can go a long way to allay any apprehensions and misgivings, should this occur.

In all, hospice was a very nice experience for us, but the experience was more about the family rallying to provide care than hospice providing the day-to-day care. I am aware of others who have found these limitations of what was offered at home by hospice to be an eye-opener. Many were caught off-guard about the need for their involvement and the depths to which their hands-on care would be needed. Hopefully now, a few more people will understand what’s required and not feel so guilty about the care they deliver when they go through what we did.

-Wes