Are you prepared for a trip to the hospital? Being an informed hospital consumer can help you work effectively with hospital staff. Even more important is being an empowered advocate on behalf of the person with LBD.
Retired hospital administrator and LBD caregiver, Larry Gore, has experienced these bumps first hand. Combining his personal and professional experience, Gore shares these tips for LBD caregivers.
During Intake: Inform the intake personnel that the person has been diagnosed LBD. This diagnosis should be noted in the chart so that all departments (like anesthesiology and the pharmacy) have access to that information. Inform the intake person about medication sensitivities in LBD and request instructions be written in the chart that traditional antipsychotic medications should be avoided. (If possible, share a copy of the LBDA’s Wallet Card.) Provide a list of all of the person’s routine, daily medications.
Contact the family doctor and neurologist: Inform the primary care physician and neurologist that their patient has been admitted to the hospital. If either doctor practices at the hospital, ask them to stop in and write orders in the chart that no traditional antipsychotic medications should be prescribed. Some doctors may even describe this as an allergy. Ask the PCP or neurologist to stay involved as long as their patient is hospitalized.
Meet the treating doctor: Ask if the person’s routine, daily medications can be continued during the hospital stay, with special attention to medications that treat LBD symptoms. Also, find out what time of day the doctor makes rounds so you can plan to be present.
Working with nurses: Introduce yourself to the nurses for each shift and inform them about LBD. They are your primary resource to help avoid or resolve problems during the hospital stay. Ask the nurse to confirm that the person’s current daily medications have been ordered and to notify you if any new medications are ordered or any standing medications are discontinued. Invite the nurses to call you with any questions or concerns, regardless of the hour of the day.
Be proactive: Staying in the hospital can be difficult for a person with LBD, due to the change in environment and people. Family members should stay with the person with LBD most of the time, to provide emotional support and additional assistance. This can go a long way to minimizing behavioral problems that might have otherwise been treated with medications. Some hospitals may be able to supplement family support by providing a sitter when family cannot be present. If something in the hospital’s routine is upsetting the person with LBD, such as repeat visits and questions by students in a teaching hospital, inform the nurse. Ask to speak with a social worker. These are often under-utilized resources and can help facilitate communication of the patient’s needs.
Alert the staff to concerning changes: As the caregiver you know the LBD patient better than anyone.
Watch the patient closely for changes in behavior that might signify the addition of medications or the discontinuance of medications that normally help stabilize the patient. Feel free to ask questions about all aspects of their care. Keep in mind that hospital staff members are busy and frequently are understaffed. Be helpful, patient and kind to staff members. Even when you are worried or upset, remember that showing kindness and professionalism will gain you more cooperation in the long run.
Problem resolution: If there is a problem you can’t get resolved by starting with the nursing staff, ask to speak with the charge nurse or the nursing director. Some hospitals also have patient advocates, which is another resource to try after the charge nurse.