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

What Caring for My Aging Parents Taught Me That Medical Education Did Not. David I. Rappaport. JAMA Neurol. 2021;78(1):7-8. Nov 23 2020, doi:10.1001/jamaneurol.2020.4454

As many children are, I was convinced that my parents would never truly get old. In their 50s and 60s, they were active, vibrant, and independent. Their many years of thriftiness had left them a solid financial situation, which my father maintained in exquisitely detailed Microsoft Excel spreadsheets. My mother, a master organizer, deftly planned everything, from our family’s international move to her weekly mahjong games. They managed 2 homes: 1 in the Northeast US and 1 in Florida. They frequently traveled with friends and relatives, sometimes not sharing details with their adult children until we received emailed photographs afterwards. My mother volunteered at her local children’s hospital—my place of employment—with enthusiasm for almost 20 years [...]

Slowly, however, things started to change. My parents seemed to have increasing difficulty staying organized. Instead of me calling them, they began calling me—at first weekly, then daily, and then multiple times per day. My father’s blood pressure was out of control, and he could not tell me what medications he was taking. My mother’s scoliosis, a problem since adolescence, now caused her to have significant difficulty walking. She looked thinner each time I saw her. Their physicians seemed not to be communicating well with each other. Finding their cell phones became a daily project.

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The move from their home of 30 years was the next step. They simply could not manage the house. Once spotlessly clean, it was now increasingly cluttered with tchotchkes from circa 1993. The garden was overgrown, the dishes dirty. After work, I typically spent an hour every day helping organize, donate, and throw away their belongings, so that we could put the house up for sale. Thankfully, the renovations went smoothly and the house sold quickly. Although not without drama, my parents moved to a retirement facility nearby.

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So here goes, the what-I-wish-I-knew list about caring for my aging parents, medically and otherwise. If this essay helps even 1 person or 1 family, it will have been worth the effort.

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.

• Make sure you know about all your parents’ financial accounts. Finding out that my parents’ credit cards were used fraudulently after they had long forgotten about them made detective work very difficult. Make a list of accounts and get online access to them as soon as you recognize that your parents are showing any signs of cognitive decline. 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.
• 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.
• 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. Even with the best plans, not everything will go according to the textbook. For example, my father repeatedly refused to do the Mini-Mental State Examination (MMSE). “These tests are designed to elicit failure,” he declared, of course without any knowledge of anything about the test. An incredibly kind geriatrician did not want to stress him by forcing him to do it. We eventually decided to treat him with medication despite not having a formal test result. My mother, in contrast, tried to cheat by studying for the MMSE the night before.
• 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.)
• 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). Instead, one suggested an independent driving assessment program (and my mother balked when told it cost several hundred dollars). Navigating the medical system, including issues associated with insurance and disposition, also will likely fall to you. Thankfully, my parents have not required considerable inpatient hospitalizations, but colleagues whose parents have required inpatient and rehabilitation stays indicate that fighting with Medicare for extra hospitalization days is de rigueur. Social workers and care coordinators can help, but the ultimate responsibility will be yours.
• 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. Some of the most difficult conversations I have had with my parents included issues involving comparisons between them and their friends of similar ages. My mother often asks, “Why can’t I drive if all my friends are driving?” “Everyone ages differently,” was my usual reply. (I also remind her that several of her friends have died.) “I may want to play basketball like Lebron James, but there’s really no comparison. Let’s focus on you.”
• 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.
• 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. Their stubbornness (I call it status stubbornosus) may be difficult now, but it has served them well in other aspects of their lives. When asked during the MMSE to list as many words that start with the letter f as she could, my mother promptly replied, “F***.” She and the geriatrician agreed it should count as a real word. “Can’t make this stuff up…” I texted my sister.