Caregiving in a Crisis

Being a caregiver during a hospital stay can be tough. However, with some careful planning, you can feel much more confident knowing what to expect. Take time to get to know the care team in charge, take notes, and ask questions as often as you want/need. Here are some different things to keep in mind:

• Prepare a bag ahead of time. Bring personal items and  keep track of them throughout the stay. Here are some items to include:
  • Copy front and back of ID and health coverage card (e.g., insurance, Medicare, Medicaid) of the person you are caring for.
  • Glasses
  • Hearing aids and fresh batteries
  • Dentures
  • List of medications (with dosages and schedule) and a supply of medications
  • Cellphone and charger
  • Relevant medical information
  • Personal information sheet to be shared with providers
  • Comfort items like pictures or spiritual objects
• Courtesy and patience go a long way. It can be frustrating when the person you are caring for isn’t getting the immediate attention that you think they need, especially when they are scared or in pain. It's crucial to stay calm and respectful, particularly when talking to hospital staff. Express your needs and support the person you are caring for firmly and kindly. Remember, the staff is doing its best and working hard. They have many other patients who need their attention as well.
• You have rights as a caregiver. The CARE (Caregiver Advise, Record, Enable) Act  supports family caregivers. It helps when the person you are caring for is hospitalized and during their return home. The CARE Act allows patients the opportunity to designate a caregiver. It requires the hospital to inform you when the person you are caring for is being discharged to another facility or back home. Hospitals must give you an explanation and demonstration of the medical tasks you will need to perform at home. Additionally, you have the right to a translator or interpreter if needed. This includes sign language interpreters. You also have the right to receive all written materials in your native language. Ask for a patient representative or social worker if you have any concerns while at the hospital.
• Mind the medications. Share details about their current medications and any new prescriptions. Talk to the medical team if you see any bad side effects from the medication the person you are caring for is taking. Make sure the person’s medication list is accurate and updated. Download the Managing Medications Worksheet.
• The person you are caring for may experience delirium. Keep an eye out for signs of delirium, such as sudden changes in awareness, mood, attention, perception, or thinking. Learn more about delirium.
• Ask respectful questions. Every hospital is different, so it’s important to become familiar with the policies and practices that will affect you and the person you are caring for during their stay. Here are some example questions to consider:
  • When do the healthcare providers usually visit?
  • What are the visiting policies?
  • What are the meal policies/choices and what times should they be expected?
  • When does the staff change shifts?
  • Who should you expect to visit the room?
  • How often do they change the linens?
  • Do they expect you to call when the person you are caring for uses the restroom?
• Try not to rush discharge. Preparing for discharge is important when caring for an older adult in the hospital. Remember your CARE Act rights. Hospital staff must give a clear Discharge Care Plan. They should also talk it over with you and the person you are caring for before discharge. The plan will cover ongoing care details. It will discuss the care level the patient needs after discharge. It will also provide demonstrations and instructions for post-discharge care. This includes giving medications, managing wounds, helping with mobility, and using medical equipment if needed. Good discharge planning can lower the chances of hospital readmission for the person you are caring for. If you need help with a care transition, call the PA Link (1-800-753-8827).

Crisis situations can happen if a caregiver can’t provide care anymore. This may be due to illness, burnout, or other unexpected events. Prior to a crisis, it is important to have a plan in place, so the person you are caring for will be safe and kept out of a dangerous situation.  If a crisis arises, having an already identified backup care option can increase the chance of consistent care for the person you are caring for. In these cases, it's important to find backup care options.

• Identify backup care options. Make a contingency plan for when you are unable to provide care. Identify trusted family members, friends, respite care services, or emergency placement options. Contact your local Area Agency on Aging. Ask them about emergency respite care or protective services.
  You can manage hospital discharges and advocate for the right placement if home care isn’t possible. Here are some different things to keep in mind:
• Advocate for alternative placement in discharge. Clearly state your inability to provide care. You are not legally required to take them home if it is unsafe. Request a hospital social worker or discharge planner to help find another placement. They can also explore options like home health assistance.
• Know your rights. Hospitals cannot discharge a patient if it is unsafe to do so under federal regulations. Refuse unsafe discharge plans and request appeals if necessary. Contact a patient advocate a legal aid organization for additional support. Learn more about legal assistance.

The Elder Abuse Helpline is staffed 24 hours a day, seven days a week. Call 1-800-490-8505 to report suspected abuse or neglect.