What Caring for My Aging Parents Taught Me That Medical Education Did Not

“the what-I-wish-I-knew list about caring for my aging parents, medically and otherwise. [..]

  1. If you have the feeling that something may be an issue for your aging parents, it is almost definitely an issue. Do not put off something because it is likely to resolve itself; it will likely get worse, not better. As a pediatrician, I find myself frequently recommending to many of my patients and their parents to monitor their current condition and let me know if things change or get worse. This is in general the wrong approach for aging parents. It is better to deal with a manageable issue now rather than a big problem in the future.
  2. Make sure you know about all your parents’ financial accounts. [..] Simplify their life (and yours) by closing unnecessary accounts. We decided that my parents should have 1 credit card and 1 bank account, both of which I have access to on my cellphone. I check them almost every day.
  3. You (and they) may need emotional support from people you would not expect. If, several years ago, someone had asked me about the most important reasons to hire a financial planner, I would never have included emotional support as one of them. Now I would rank it near the top. Having someone who knew my parents before they started to decline is incredibly helpful as we make financial and other important decisions on their behalf. The fact that my parents trust their adviser so much is a tremendous help. The same is true for their realtor.
  4. Advocate for your parents in the best way you can, but do not expect everything to be cut and dried. Try to attend medical appointments with them whenever possible. Make a list of their medications with photographs of the pills included. Talk to the physician directly and make sure they know you are a medical professional. Do not expect clinicians to communicate effectively with each other.[..]
  5. Use technology to help you (and them). Although my parents struggle with technology, that does not mean it cannot help them. I do not have any financial stake in any particular technology company, but there are several that we have found extremely useful. Medminder (www.medminder.com) is a company that offers smart pillboxes that reminds my father when to take his medications and alerts me via telephone, email, or text message if he has not yet taken the medication. Pillpack (www.pillpack.com) is a pharmacy service that packages the medications by day and time so that loading pillboxes is much easier. Tile (www.thetileapp.com) offers the ability to track multiple lost devices, such as cellphones and wallets. Gogograndparent (www.gogograndparent.com) allows senior citizens to use Lyft or Uber via a simple telephone call, rather than having to navigate the app. (I thank my cousin, a social worker, for that one.)
  6. Do not expect too much from the medical system. Physicians, even caring and dedicated ones, may be unwilling to have difficult or unpleasant conversations. Neither the ophthalmologist nor the primary care physician, both lovely people and good physicians, seemed willing to risk my mother’s irritation by telling her that she could not drive (although clearly this was unsafe).
  7. You must have the difficult conversations if the physicians will not. You may need to have difficult conversations with your parents, your siblings, your children, and others. Regarding medical professionals, if you can, consider having a conversation with your parents’ physician(s) before the visit, so they understand your perspective and are not surprised when you ask them about issues (such as driving) with a specific agenda.
  8. You may need to get them daily help. A supportive and trustworthy aide (or aides) can be a tremendous help. My parents now have aides daily; I can immediately tell by the tone of my mother’s voice when the aide has not arrived that day. Once you get a system established, everyone will be much more comfortable. Aides who drive can be a compromise for senior citizens who want to remain independent but cannot safely drive themselves.
  9. Do not forget to keep some perspective and occasionally laugh. These issues are harder on your parents than they are on you. Obviously, they did not choose to have dementia or Parkinson disease. They will need some time to mourn their losses: physical strength, independence, friendships, and living life on their terms.

Full editorial, Rappaport DI JAMA Neurology, 2020.11.23