Discussing long-term care with aging parents

  • By Marc Agronin,
  • The Wall Street Journal
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Many people view the possibility of needing long-term care as a fate worse than death, and try to deny, resist, postpone or denigrate the idea. This resistance can be fierce, even in the face of significant physical or mental changes that compromise safety and require close monitoring and assistance. It’s frustrating and even heartbreaking when these attitudes persist and block you from finding the care that a parent or loved one needs.

Simply raising the topic can be hard enough, especially in a role-reversal, when a child needs to assume a caregiving role for a parent. So how can you compassionately navigate the emotions and broach the topic in a way that engages your loved one in a discussion, and yet moves quickly to a practical solution?

Here are some ways to frame the conversation and keep things constructive.

It’s like talking about insurance: One way to normalize the subject is to compare it to activating insurance for the unexpected or unwanted occurrences in life. Here, selecting long-term care is simply a way to face an undesirable crisis or unexpected transition in life. The discussion can focus on the various forms of care that a person can choose, ranging from home health aides to assisted living to nursing homes.

Emphasize autonomy and choice: No one likes the idea of losing their independence. Everyone wants to see themselves as always being in control of their own decision-making. Center your discussion around the person’s strengths and aspirations, and focus on the potential options and choices that they have. As they struggle with the current health crisis and inability to fully care for themselves, ask them what their Plan B is and if there isn’t one, offer to work on it together. If they reflexively respond to a discussion about long-term care with an empathic “No” or “Never,” ask about the consequences of not making a choice (i.e., someone else will make the choice for them). Such questions may prompt deeper insight and acceptance of their circumstances, which may lead to more expeditious decisions.

Focus on transitions: In many cases, long-term care is not a precipitous event but a gradual transition that starts with home-based services and becomes more structured over time. Educate yourself about all the locally available services and centers ahead of time and then bring this information to a discussion about what will be the least restrictive, most acceptable (and even desirable) option in the moment. Emphasize that the life changes leading to long-term care do not have to be so abrupt, drastic or irrevocable. Talking about and planning various pathways before a crisis can increase the likelihood of having time to make good choices. Help them to understand that the current situation could get much worse and would leave them with fewer choices if they don’t act soon.

Sometimes the discussion is an end in itself: Talking about long-term care doesn’t mean that a person has to make a decision right away. There is value in the act of talking itself. A calm and measured discussion shows your concern and support. It enables the person to vent their feelings and talk about their values, choices and goals. It builds trust and strengthens your relationship, setting the stage for more detailed discussions and decisions–even ones that need to take place in the very near future.

Involve professionals if needed: When even the kindest and gentlest approaches don’t work, you must consider whether the person is simply too angry, depressed, resistant or cognitively impaired to make a reasonable decision. This is a difficult space to be in. Forcing the issue can wreck a relationship. Ignoring the situation and hoping for the best will, sooner or later, limit your parent’s options and control over the type of long-term care that’s available. In those circumstances, it’s key to involve mental health specialists who can assess the person’s mental state and decision-making capacity. Perhaps you can alert these specialists about your concerns for your loved one’s sustainability in their present living situation. Depending on their findings, they may be able to facilitate the conversation and help inform the most appropriate plan of action.

It’s a tender undertaking, to ask someone to acknowledge setbacks or to contemplate their potential losses. But, armed with options, research and reassurance that much of what’s most important can be preserved, your initiative can give your loved one a more healthful, secure and fulfilling future.

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