Transitioning from child to caregiver

Jan 24, 2014

When aging parents are diagnosed with a chronic illness or terminal disease, often roles are reversed and adult children become the caregivers. The transition can be difficult, but extremely important to the parent's quality of life. Lorraine Rapp and Linda Lowen, hosts of WRVO's health and wellness show “Take Care,” recently spoke with Dr. Leana Wen, an emergency physician and director of patient-centered care research at George Washington University, about how to deal with this stage of life.

Linda Lowen: What do you think an adult child can do to make this moment easier when the dynamic changes and the child becomes the person who’s really involved and possibly helping in the decision making?

Dr. Leana Wen: It is very difficult, as you said, to navigate that relationship, because on the one hand you want to do your best as the caregiver and take control. But on the other hand, your parent is an adult, they’re someone who is used to caring for you, much less having that role reversal and giving up their autonomy in your favor. And you have the guilt about how much to be there and how to balance caring for your elderly parent and maybe with a lot of other issues too, like caring for your children or your work, or other things. So I’d say that there are a couple of things that are very important. The first is to have other people in this discussion as well. And by other people I mean, definitely people in health care -- so involving someone that you trust, a primary care doctor, a nurse, knowing someone else who can also help you in these discussions, and be the mediator of sorts if there are any difficulties. Also having other people, such as family members or friends, who are also involved; so perhaps your sibling who is involved, or perhaps another parent who can be involved in that mediator role.

Linda Lowen: Is this a conversation that should be started when we’re all in a state of wellness?

Dr. Wen: This is absolutely something that we should bring up when we’re all well and of sound mind. I see this so much. For example, I see elderly people come in to the ER with life-threatening emergencies. But they are usually chronically ill with something else – maybe they already have terminal cancer, maybe they have dementia, maybe they’re already in a nursing home with many other medical issues. And yet, we do so much to resuscitate them, in a way that, many times, their families are not even comfortable with. However, because they never had the discussion with their loved ones in the first place, we end up doing all of these extraordinary measures that perhaps are not even the most humane thing to do.  I would encourage everyone, no matter your age, to have a discussion with your parents about what would you want to do. And the answer may be, “I don’t know.” The answer may be things will change over time. But begin having the discussion early.

Lorraine Rapp:  There are privacy laws in place now -- HIPAA laws – it limits what the doctor can share unless the patient has given permission to release their medical information. How do you make sure your parent agrees to sign the document?

Dr. Wen: So HIPAA, which is the Health Insurance Portability and Accountability Act, is probably the most misunderstood law that I see in medical practice. So many people think that it means that medical information cannot be shared with other people. But it’s only if the patient disagrees. So if the patient says, “sure you can talk about it,” which is what I see in 99.999 percent of the cases, you as the family member can absolutely discuss with the doctor.

More of this interview can be heard on "Take Care," WRVO's health and wellness show Sunday evening at 6:30 p.m.  Support for this story comes from the Health Foundation for Western and Central New York.