Open, honest communication between you, your loved one and the healthcare team is crucial. While you depend on health professionals for high quality care, they depend on you for information about the patients’ health status and living experience, and for properly carrying out professional advice.
So, who is on the healthcare team? The primary care physician will likely be your main point of contact, but there are many specialists who can participate in your loved one’s care:
- Neurologist (preferably a movement disorders specialist)
- Nurse practitioner or physician assistant
- Physical therapist
- Occupational therapist
- A specialist in the diagnosis and treatment of speech and language disorders. Can also assess and treat swallowing difficulties.
- Social worker
- Registered dietician
- Psychologist or psychiatrist
What You Need to Know
It is important to make sure that the person receiving care feels empowered in conversations with healthcare providers. As the disease progresses, many aspects of Parkinson’s disease can be demoralizing – for example, requiring assistance going to the bathroom – so it helps if the person with PD is involved in decision-making as much as possible. After all, you are talking about his or her care.
Go to All the Medical Appointments
Whether the appointment is at your house or at a medical facility, be present at every appointment with your loved one. You are there to be supportive and take notes, but also to ask questions and share information. Your ability to communicate with the healthcare providers can influence the quality of care your loved one receives. Be honest and ask direct questions. If something is wrong, the provider should say so, but it helps to ask. If you have doubts, get a second opinion. Even the experts do not always agree about the best treatment.
Fill out the Medical Appointment worksheet before the visit to make sure you are prepared.
Remember, the health care providers see many patients in a day and only see your loved one with PD for a brief time in the office. You are with him or her all the time. Therefore, it is important that you prepare for each visit and know all about your loved one’s medical conditions (PD and others), including medications and other treatments, so you can make the most of your time with the provider. Go to each appointment with a written list of questions that you want to cover as well as problems or improvements that have arisen since the last visit.
Being at the appointment is also important because of rules about privacy and confidentiality.
You might have heard of HIPAA, the Health Insurance Portability and Accountability Act. Unless you are physically in the room with the patient and the doctor, you cannot expect the doctor to give you information about your loved one’s health and treatment just because you are related to the patient, even if you are the spouse.
What the Healthcare Team Needs to Know
- A full list of all medications – not only anti-parkinsonian medications. Use this medication form or keep a list electronically, so it is easy to update.
- New symptoms or side effects
- Improvements or worsening symptoms or side effects
- Things that seem to either relieve or trigger symptoms or side effects
- Difficulties in taking medications – e.g., are swallowing problems affecting medication intake?
- How the person with Parkinson’s is doing with other medical conditions – e.g., diabetes, hypertension, COPD, etc.
- Any hospitalizations or ER visits since the last visit
- Change in the caregiver plan – e.g., are there new caregivers at home? Did you hire help since your last visit? What is the aide helping with?
If you have a recording device, such as a smartphone or digital camera, use it to film your loved one’s “on” and “off” states. This can help the health care providers see what “on” and “off” means for the person with Parkinson’s, and adjust treatment and care recommendations accordingly.
Ask for written information about the medical situation from the healthcare team, so you can review it later and make sure you understand everything. You can share the document with other family members, friends and caregivers.
Beyond Communication: Engage the Healthcare Team
It is worthwhile to get to know all the members of the health care team caring for your loved one. These individuals can teach you how to provide proper care for the person with Parkinson’s. As the disease and symptoms progress, this will become particularly important. If the person with Parkinson’s is hospitalized or receives therapy at a rehab facility, ask the staff to show you proper caregiving techniques for tasks like lifting, transfers and bathing. Learning basic skills will build your confidence in the role of physical caregiving.
Communicating with the Healthcare Team in the Hospital
Three out of four people with Parkinson’s do not receive their medications on time when staying in the hospital. With more frequent hospital visits and a high sensitivity to the timing and dosing of Parkinson’s medications, people with Parkinson’s face great risks in the hospital.
Tell every member of the hospital staff you interact with that your loved one needs his or her medications on time, every time. If you do not have one, get an Aware in Care kit. The kit includes items to prepare you for a planned or emergency hospital visit as well as information and reminders for hospital staff.