Planning elder care is fraught with emotional minefields. Perhaps nothing is harder than when dementia or Alzheimer's strike, and a loved one’s skills or judgment has degraded and family action is required. This may mean taking away car keys, insisting that a caregiver comes part of the week, or that the elder move to live in a facility. This is always easier if you know that your parent, when entirely competent, had expressed a preference for how to handle the situation. The trouble is that we find that many families have not made such plans.
This is the first of a series of blog posts on lessons learned on navigating that difficult terrain. In future posts, we will address how to handle situations when someone’s competence has declined due to dementia, stroke, or other factors. For today, we will assume the elder is competent to make decisions. This leads to our first recommendation:
- Start the conversation before action is required. This conversation is rarely easy, but the more hypothetical it is, the easier for all of us to deal with the approach of mortality – our own and that of people we love. Even then some people resist – “That’s not going to happen to me. I’m going to die of a stroke like my dad” or “If that happens, we’ll have to deal with it at the time” might be common dodges. But however difficult the conversation, it will not get easier by waiting until the elder’s abilities have declined. Start early, and sensitively.
- Keeping it hypothetical is often easier. “Dad, we all hope you live to 100 and die in your sleep. But if that didn’t happen, what would you like us to do if we realized you weren’t able to drive safely?” “Mom, this is still a long way off, but if you got like Aunt Edith and couldn’t make good decisions any more, would you prefer to have care at home, or to move to a place where people could be sure you had everything you need?” Even if you’re sure Dad won’t make it that long, or you suspect a Mom’s judgment may have already begun to falter, you do not need to make an issue of that now. For today, the goal is to understand clearly how someone would want decisions made if he or she were not able to make them. A hypothetical discussion may reduce resistance.
- Clarify that you are not trying to rush decisions. Your goal in raising this point is to handle a situation that may not even be required in the future. Be sure your loved one knows this is not a smoke screen to fool them into agreeing to something against their will.
- Emphasize that you want to help the person have what he or she wants. Resistance is often strongest when people are afraid they are losing control. The more you can reassure your loved one that the point of this conversation is to maximize the chances that decisions are made the way he or she prefers, the more likely you will be able to have a productive conversation.
- Remember that the goal is to understand you loved one’s desires. This is not the time to bring up changes you want to make. In this discussion, you are focused on learning from your loved one what he or she wants. Answers should sound like, “Even if I have dementia, I want to stay at home as long as possible so I can be in my garden. That makes me happy.” Or, “If you suspected I could not drive safely, then I would want to be evaluated by Dr X because Betty would have taken away my keys 10 years ago if she could.”
- Respond sensitively to resistance. Remember that your loved one likely suspects that this day approaches far more rapidly than he or she wishes. Denial may be the only protection they know from fear and great sadness. Unreasonableness is often frustrating, and you may need a lot of patience to conduct this discussion. It may take several different discussions and you may have to find a way to return to the topic without nagging.
- Ask for help. Often a family friend, clergyperson, or counselor can help start a conversation that is more difficult within the family. Do not hesitate to ask, if it will help move the discussion along.
Families often delay these conversations too long. Delay is a natural, although very risky, response. We find that families who have had these discussions in advance, and know in their hearts that they are doing what mom and dad said they would want, are more at peace and are better able to make difficult decisions if and when the time comes.
See also When Dementia Strikes: Difficult Conversations, Part II
This post was originally published in the Concord Journal on March 8, 2012.