Utilize Resources to Support Aging Parents

As an adult child, it can be difficult to know the best way to support an aging parent. You may be very well-intentioned and just not know the most effective way to manage that boundary between child and parent. Those roles can shift as a person requires more care and attention.

Having access to health information is an important topic in this discussion. Health information is protected under the Health Insurance Portability and Accountability Act (HIPAA) that was passed by Congress in 1996.  HIPAA requires the protection and confidential handling of health information.  This would include information from your mother’s neurologist. Typically, a medical provider will ask the patient to complete a form that specifies to whom they have permission to release information. 

If your mom and dad want you to have access to this information, they need to make sure they have listed you on that form. Without proper consent, the doctor would not be able to provide you with protected health information, such as her diagnosis. You might ask your dad if they have listed you on these forms. 

Another suggestion would be to ask your dad if you could attend an appointment with them, or ask if they received any type of note from the visit outlining what was discussed. This would allow you to have an open conversation with them about the changes and what you can do to support them.

If your parents executed power of attorney documents that name you, some attorneys will include a separate document to provide access to protected health information. If and when they need you to act in that capacity, this can be a helpful document. 

If your dad feels she is “getting better,” that may be accurate, he may want to believe that, or he may be trying to protect you from the reality. He may or may not understand the full scope of the change and diagnosis. In some cases, the person is just not ready to accept the diagnosis.  The term “dementia” gets tossed around quite a bit, so you want to make sure you have an accurate diagnosis explaining the cause of those symptoms. 

You can support your parents through this process by having open conversations with them and asking questions and observing changes for yourself. Early and accurate diagnosis with cognitive change is very important for many reasons. It can identify possible reversible causes for the change like depression, vitamin B-12 deficiency or a urinary tract infection as well as provide the best course of treatment for a disease like Alzheimer’s, Lewy body or vascular dementia that is irreversible. Knowing what you are dealing with is the first step in getting the right plan of care in place and identifying what type of support is needed. 

As an adult child, these conversations can be difficult, but they are important to have. They are the starting point for many life care issues you are likely to face in the coming years. Planning and open communication are key to continued quality of life and aging with dignity. 

Try to keep an open mind, be willing to listen and accept the changing roles in your family. 

Let your parents know that it is OK, and you want to support them. Watch for signs of caregiver stress for your dad, and encourage them both to continue to live life but to modify tasks that become too frustrating. 

There is a line between taking over or dictating what they should do and being a part of the support team. They may make different decisions than you would, so the goal is to open the door to identify options and resources. You can help provide them with emotional support, educational resources and hands-on support as requested. Taking this approach enables you to address your concerns while allowing them to continue to navigate the challenges of aging.