PD Inpatient "Care": Inept, Indifferent, Incompetent, Insufficient, Injurious

In my 19+ years as a Parkinson care partner/caregiver, the most exasperating and stressful times have been during hospitalizations of my husband. He has been in three different hospitals, two skilled nursing facilities and one rehab/nursing home. I have yet to find anyone on staff — other than neurologists — who knew very much, or at least appeared to know, about Parkinson's disease. In most cases, most didn't seem to want to know. In the "rehab" facility it took four weeks to get all prescribed medications resumed, even though they had written orders from his neurologist. Timing of medications seemed to follow the convenience of the nurses' schedules rather than what was beneficial to the patient. Forget about the recommended spacing between protein consumption and medicine! Of course, there were many other things that were detrimental to his recovery, such as a serious lack in personal hygiene care. When he developed aspiration pneumonia the second time I had to tell the nurse there was a problem; she obviously hadn't detected any changes in temperature, breathing, etc., indicating she wasn't taking his vital signs. When ready to leave the hospital that time I brought him home. The hospital stays were brief, but my personal distress in seeking good care for my husband in the rehab/nursing home lasted over eight weeks. And they professed to be one of the three highest-rated nursing homes in Texas!

Since Parkinson patients are hospitalized more frequently than their peers and PD is so common in the older generation, I don't understand the apparent apathy and lack of knowledge on the part of most medical professionals about problems faced by PD patients. They seem to have little awareness of PD symptoms; the importance of a regular schedule for medications (most facilities have a two hour window in which the medicine can be an hour early or an hour late, meaning you can get one dose an hour late and the next an hour early or vice versa); a lack of awareness that many pain, nausea, and depression medicines are unsafe for people with PD; and that carbidopa/levodopa should not be abruptly discontinued as it may cause a potentially fatal syndrome.

Why is there not a nursing home (to my knowledge) in the huge Houston area that specializes in the care of patients with PD and related neurologic disorders? If there is one or more, and you have personal experience or knowledge, please educate us so we can mention their name(s) when people call in to ask PFHC for a recommendation.

Through all this gloom, here's some wonderful news! The National Parkinson Foundation (NPF) has launched a national campaign, Aware in Care, that aims to help Parkinson patients get the best possible care during a hospital stay. To protect, prepare and empower PD patients before, during and after a hospital visit, NPF has developed a free kit with key information for patients to share with hospital staff during a planned or emergency hospital stay. For details on what this kit contains and how to get it, see "Aware in Care".

Thank you, NPF!

Sarah Malcolm is Editor of the PFHC Bulletin, the monthly newsletter of the Parkinson Foundation of Harris County. Based in Houston, TX, she has been caring for her husband since he was diagnosed with Parkinson’s 19 years ago. This article was reprinted from the February 2012 issue of the PFHC Bulletin.

Posted: 2/8/2012 5:05:20 AM by Cathy Whitlock

Browse current and archived blog articles written by caregivers, for caregivers.

May 2015
Part 2: Tips for Parkinson's Caregivers to help improve quality of life

April 2015
Tips for Parkinson's Caregivers to help improve quality of life.

December 2014
Keeping Watch

November 2014
Resources for People Who Care for Someone with Parkinson’s

September 2014
I Don't Like Parkinson's, but I Love the People in My Life

August 2014
Baby, oh Baby?

July 2014
When the Caregiver Takes a Break

May 2014
Arriving at Thriving

March 2014
Adult Swim

February 2014
5 Disability Insurance Issues Worth Talking About

December 2013
DBS: How it changed darkness into light

November 2013
Family Caregivers Deserve Special Recognition

September 2013
Saving $49,500 for a Good Night’s Sleep

August 2013
Growing Up with Parkinson’s

July 2013

June 2013
I Wish I May, I Wish I Might

April 2013
5 Grab-and-Go Healthy Snacks for Parkinson's Caregivers

March 2013
5 Caregiving Tips for Lewy Body Dementia

January 2013
Lewy What?

November 2012
How to Support a Caregiving Spouse: Three Tips from My Other Caregiving Half

October 2012
Bobcats and Turtles

August 2012
Build a Ramp

July 2012
A Bathroom That Works

June 2012
Lessons in Care, Lessons in Time

May 2012
Welcome to CareZone

April 2012
Dignity and Empathy in Caregiving

March 2012
Notes from "Movers & Shakers with Parkinson": How You See Your Changing Roles

February 2012
PD Inpatient "Care": Inept, Indifferent, Incompetent, Insufficient, Injurious

January 2012
Caregiver Isolation as Cultural Disease

November 2011
How to Take Care of the Caregiver

September 2011
The Disregarded Costs of Agency Care

August 2011
7 Tips for Hiring Good Caregivers

July 2011
Parkinson's and Your Voice: The Essence of You

June 2011
7 Ways a Care Recipient Can Help Alleviate Caregiver Burnout

May 2011
Lessons Learned About Caregiving for a Person with Parkinson's and Alzheimer's Disease

April 2011
Communicating With Your Partner When Speech and Voice Are Declining

March 2011
Long Distance Caregiving

February 2011
Financial Planning Webinar for Caregivers

January 2011
Caregiving Tool: A Home Healthcare Management System

December 2010
Caregiver Sanity: Three Things I Try to Remember

November 2010
Appreciating Family Caregivers

May 2010
Good Body Mechanics for Caregivers by Kevin Lockette, PT

March 2010
Taking the First Step in Your Own Care by Carol Levine

Currently: 0 (0 ratings)


Each month, we will feature a new column by caregivers on topic important for caregivers of people with Parkinson's disease. Read the latest column now.

Subscribe to this blog