The Patient-Caregiver-Practitioner Partnership
“’I’m sorry she’s not being cooperative,’ I said…’All I can tell you is that she has Alzheimer’s and she just doesn’t understand what’s going on.’
‘Oh,’ the nurse responded in a puzzled tone, ‘she has Alzheimer’s?’
Her question left me absolutely speechless. This nurse, who had been assigned to take care of my grandmother for the day, didn’t know she had Alzheimer’s disease, even though it was noted in [Grandma’s] Waverly chart….”
Excerpt from Goodnight, Sweet: A Caregiver’s Long Goodbye, Chapter 16 “The Hospital”
This. Right. Here. How many caregivers have encountered a similar situation? Their loved one is in the hospital where it is discovered that a breakdown in communication has negatively affected the patient. Either the team going off duty failed to communicate information or the team coming on duty failed to read the chart and get acquainted with the patient’s medical history.
It all started innocently enough. Not long after my grandparents were admitted to the nursing home, a speech therapist found that Grandma aspirated nearly every time she swallowed. Back in 1997 the recommended protocol was to surgically insert a PEG (percutaneous endoscopic gastrostomy) tube as an alternate means of feeding her. While she was recovering, her nurse called me at work and read me the riot act because Grandma was being “high maintenance.” When I mentioned that Grandma had Alzheimer’s, it was glaringly obvious the nurse was unaware there were any issues other than the PEG tube procedure. Her solution was to place restrictive mittens on Grandma’s hands and then just leave her alone in her room—which necessitated my having to leave work to go sit with her.
It really bothered me because I had gone out of my way to tell everyone who had anything to do with Grandma’s care that she was an Alzheimer’s patient. In addition, her diagnosis was noted in her chart from the nursing home which had accompanied her to the hospital. But on top of everything else, it seemed unbelievable to me that a trained medical professional couldn’t at least listen to Grandma, observe the way she was behaving, and rightly conclude she was suffering with some form of dementia.
Back in June, I began to address this issue with my article entitled “Searching for Dr. Right.” As I have continued to encounter caregivers in various situations, I’ve heard different versions of what I personally experienced more than 20 years ago after Grandma’s surgery. The June article dealt with how to go about finding a good doctor who fits in well with a patient’s needs and personality, whereas in this article I want to respectfully highlight a sense of frustration caregivers feel toward some members of the medical community. There are those who are so rushed in their patient care they don’t realize crucial details are missed, and it negatively affects both patient and caregiver.
I would like to point out that the medical community is chock-full of heroes. There are any number of par excellence nurses, doctors, therapists and aides who are working daily to make life better for their patients. During my tenure as caregiver for my grandparents I encountered some of the most wonderful professionals who completely understood the dynamics of the patient/caregiver/practitioner trifecta. However, we also encountered some folks who probably should have been assigned to the stock room to roll bandages until their shift was over.
As caregivers, we understand we have to be the voice for our impaired loved ones, but there is also a reasonable expectation that medical professionals will endeavor to be as well informed as possible about their patients, taking time to understand the facts and medical history of their patient’s case. So what can a caregiver do to ensure that their loved one receives the best care possible?
Cultivate a Friendly, Professional Relationship
I was very intentional about meeting the staff members working with my grandparents. I made sure to thank them for their hard work and for how attentive they were. I engaged them by asking questions about what role they played in my grandparents’ overall care plan. I made it a priority to let them know they were truly valued and appreciated. These actions yielded very positive results; the staff was always friendly to me, they were available when I needed to call on them, and most important of all they treated my grandparents well.
Be Present When Possible
My policy with my grandparents’ nursing home was to come in at different times during the week—thereby avoiding predictability. If the staff didn’t know when I might pop in, I calculated the likelihood of their being more attentive to Grandma and Grandpa was reasonably high. I did have other life responsibilities besides just caring for my grandparents, but I made the random visits a priority.
Don’t Be Afraid to Shop Around
If you find that you or your loved one are having difficulty with a particular practitioner, do not hesitate to look for another medical professional to take their place. I do not recommend chronic “doctor-hopping,” but if there is incompatibility in the practitioner-patient relationship it is highly unlikely that either one will flourish in that environment. Finding another practitioner may be able to relieve a lot of unnecessary stress.
When the patient, the caregiver and the practitioner are all on the same page, the patient receives the best care possible, the caregiver’s stress is lowered and the practitioner is able to grow professionally. Where there’s mutual trust and respect, everyone can thrive.