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.