Stepping into the role of a family caregiver is a significant responsibility. Being a caregiver is not just about attending to the physical needs of your parents or loved ones; it’s about being their voice, their advocate, and a part of their health care team.
Navigating the complexities of long-term care facilities can be challenging – but by being an active participant in the process, you can improve the quality of healthcare your loved one will receive.
If you are unsure if you can be a strong, effective advocate for your parents or loved one, we assure you that you can. Below are some ideas to keep in mind that can help you become an integral part of your loved one’s health care team.
A collaborative relationship with the health care team is vital for effective advocacy. Start by introducing yourself to the staff and express your willingness to be involved in your loved one’s care. Some of the key members of your loved one’s care team to get acquainted with are:
Do your best to be confident, calm, and respectful in your conversations with everyone. Everyone shares the same goal of providing the best possible health care for your loved one.
Make it a point to regularly attend care conferences and meetings so you hear and understand your loved one’s progress, concerns and changes. You can also discuss future goals with their care team and make sure everyone is on the same page with your loved one’s care plan.
Clear and consistent communication is the best way to ensure everyone involved in your loved one’s care is on the same page.
Before you meet with your loved one’s healthcare team, write down any questions or concerns you have about their care, or changes you might have observed while with them to inform your conversations and better direct the care being given to your loved one.
It can also be helpful for staff to know more about your loved one, too. Share their story so they can have a better understanding of who they are, what is important to them, and what makes them unique. This might include:
Establish a regular check-in schedule with the key members of your loved one’s care team. Consistent conversations can go a long way toward minimizing misunderstandings and improving health outcomes for your loved one.
In all conversations, both verbal and written, be respectful of everyone. Take the time to acknowledge and thank them when they are doing things well. Saying ‘I’m sorry’ when appropriate can go a long way toward maintaining respect and proper communication, as well.
Establishing a regular schedule for visitation and interaction is important for your loved one emotionally and mentally.
You should take note of any rules or restrictions around visitation, whether it’s a maximum number of visitors, hour restrictions, health-related rules for visitors, or other directives.
In addition to checking with the long-term care facility, ask your loved one or take notice of a specific time or activity that makes them comfortable and at ease. It might be better for them to have visitors in the morning or evening, depending on when they are most alert and active. Some people benefit from having visitors throughout the day; it all depends on what is right for you, your loved one, and your family and friends,
Keeping a guest book or journal in your loved one’s room can be a good way to know which family members and friends are stopping in, and for those individuals to communicate with one another.
Whether you have physical notebooks and folders or a dedicated folder on your phone or computer, staying organized is key when advocating for your loved one.
There are going to be medication lists, provider lists, power of attorney and healthcare proxy forms, and many other legal and financial documents to keep track of. Keeping everything organized will be important. AARP suggests having a “to-go folder” for medical appointments or emergencies so you have a list with medications, insurance information, key providers, and health conditions.
Noticing changes in your loved one is also important, whether it’s their mood, energy level, behavior, or health. Everyone involved in your loved one’s health care brings different areas of expertise. You bring personal knowledge and experience, while medical professionals lend their healthcare knowledge to the care plan.
Make it a habit to document any significant changes in your loved one’s health, mood, or behavior. Share this information with the health care team during meetings or through regular updates. This documentation can be invaluable in detecting patterns and making necessary adjustments to the care plan.
Whether it’s about a new treatment or a change in routine, don’t be afraid of showing curiosity and concern about the care your loved one is receiving. Asking good questions often leads to more comprehensive discussions and better care outcomes.
Because you are making decisions for your loved one, having a thorough understanding of your loved one’s health condition, available treatment options, and their impacts is crucial to them receiving the best possible care.
While your healthcare team wants you and your loved one to succeed, you are allowed seek second opinions if needed, as they can provide additional perspectives and reassurance.
Most importantly, make sure that your loved one’s voice is heard. Encourage them to express their preferences and concerns, and advocate for their wishes during discussions with the health care team. This collaborative approach not only enhances the quality of care but also empowers your loved one in their health care journey.