If you ask people over the age of 65 what they fear most, I find that most people do not say a heart attack, but rather a stroke. "I don't want to be a burden to my family" is what many patients tell me. With improvements in health care technology, we are living longer. Some people are doing quite well functioning on their own, whereas others cannot live independently. And we all know there are things we can do to stay healthy longer -- keep blood pressure under control, keep lipids in a normal range, eat more fruits and vegetables, and exercise regularly. But there's one other factor that research has shown reduces one's risk of being admitted to a nursing home -- and it's raising a daughter.
I see this in my medical practice. The overwhelming majority of time it is the daughter that brings the parent in for medical visits; it is the daughter that the parent typically moves in with to avoid a nursing facility. And it is the daughter that calls asking clarifying questions after the visit. It is the rare occasion when it is the son who is the caregiver. Now in recent years, I do see more men taking care of their aging parents, but it's still a small percentage. And I understand there are numerous societal reasons why this occurs - including the persistent stereotype that it is women who are supposed to be caregivers. And as a father of two boys, I certainly hope that societal norms change over the next 20 years!
In the meantime, we need to give more support to these daughters that are taking care of aging parents. And I will admit, I rarely ask the caregiver how she is doing. I rationalize it by often saying to myself that she is not my patient, and her health is not the focus of the visit. But I need to change that. Physicians, and the rest of the health care system, needs to stop overlooking the physical and emotional needs of caregivers. I recently heard the phrase that these caregivers are the "invisible patient" at the visit - and I see how it is true. We basically ignore them.
Caregiving is extremely stressful. Until you're providing it, you really have no concept of how difficult and life-changing it can be. We often just assume that these strong women don't have any health needs, but that's far from the truth. Caregivers often have their own health needs, and more often than not, they neglect them. "You only have time for so many doctors' appointments, " one patient recently told me. "Mom's come first."
On the rare occasion that someone does say something to a caregiver, it's mostly platitudes -- "You should try to get more sleep." "You need to make sure you eat healthy." "Try to exercise." Most of these are simply unpractical unless we give caregivers help. Caregiving can be a 24-hour job, and even when it isn't, it's still an all-consuming responsibility. As physicians, we need to start paying attention to caregivers at the appointments, even if she is not our patient. We should be asking probing questions as to how they are functioning, their quality of life, as well as their support structure. We need to start offering psychosocial and even pharmacologic intervention. We also should engage social workers much earlier on to address the needs of the caregivers rather than just the patient. After all, when the health of the caregiver deteriorates, so too does the patient.
Along with the health care system, society needs to recognize the importance of caregiving and make it easier for people that want to provide it. This includes offering alternative and flexible work schedules, financial support through tax breaks and tax incentives, and a reliable process for respite care. And please let's develop and make available new technologies such as improved and innovative remote monitoring devices, affordable lift systems, and even new social networks to help both caregiver and patient avoid social isolation.
We need to have a national discussion on caregiving. With diseases like Alzheimer's becoming more prevalent, caregiving is going to become more important. And I don't know about you, but I want to keep my loved ones in their homes as long as possible. Let's start to change the way we think about caregiving in a way that doesn't force one to sacrifice her (and hopefully his!) own health to help others.