At This Week's Ask Us Anything...
Honor Agency Or Protect Peace?
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Q: My mother-in-law lives with us. This has been manageable so far. However, we have noticed some additional cognitive decline recently. We are starting to consider the possibility that we may not be able to care for her in our home indefinitely. She’s in a good place emotionally, and I’m a little worried that showing her some facilities may make her anxious. But I would also like her to have the opportunity to communicate her preferences while she is still able. We are wondering if it would be helpful to start looking at facilities now (even though the “if” and “when” the facility would be needed are unknowns) and if so, should we have her tour these places with us?
A: Great question and, as with so many questions about aging, illness and end-of-life, the answer is not always straight forward. You are balancing so many factors – wanting to be prepared for an unpredictable future and not wanting to cause your mother-in-law unnecessary stress while honoring her preferences. You are trying to balance everyone’s needs and limitations, including your own, which is no small task.
Wanting To Be Prepared For An Unpredictable Future
As a death doula, I have spent a lot of time helping clients plan for a future that may or may not look like how they expect or hope. In my earlier days of this work, I would feel frustration when things didn’t go as planned. All that work for nothing. But as I’ve gained experience, I’ve learned that there is great value in due diligence. It provides a since of control in a situation that can be so uncontrollable. It can ease stress by gaining knowledge and understanding of possible outcomes. And there can be great comfort in being able to say “I did everything I could”, even if things ultimately fall apart.
Not Wanting to Cause Unnecessary Stress
This is such a valid concern. Even if your loved one knows that a facility is a possibility in the future, actually touring potential facilities makes that possibility more real. Most people are not excited about the prospect of a facility. No matter how much they understand that it may be the best choice, no matter how nice the facility looks, most people would rather live out their days at home. So knowing the risk of possible stress, the question should also be asked “What would be gained by showing my mother-in-law the facilities?”.
Honoring Agency
Most people want to make their own decisions as long as possible, and we, as caregivers, want to honor their agency. One way to do this is by giving someone the opportunity to have a say in their living situation while they are still cognitively capable. By having your loved one look at facilities with you, they have the opportunity to express their opinions about what they like or don’t like about the rooms, the eating areas, the staff, etc..
Other Facts to Consider
Most facilities have a waitlist. So even if you decide to tour the facilities, it will be difficult to say “for sure this one” because you won’t have any idea how long their waitlist is until you actually need it. And you may need it immediately, depending on the situation.
Some facilities have fancy things like doormen and happy hours. These may have great appeal to someone who is taking a tour. But as mentioned above, people generally don’t want to be at a facility. They would rather be at home. And even if these shiny things ease the discomfort in the beginning, it is usually short-lived.
Sometimes loved ones say things to make their caregivers happy. If they think their caregiver wants them to like a particular facility, they may say “This is wonderful, I think I could be very happy here.” when they don’t feel that way at all. Even if you decide to have them tour the facilities with you and they are cognitively capable of giving you an opinion, it may not be an honest one.
So what to do?
As the caregiver, there is no harm in touring the facilities without your loved one. Even if you can’t predict when they may need it, you can have an idea of your top ones based on things like geographic location, cost, staff ratio, etc..As mentioned above, this due diligence can provide comfort and a sense of control. But unless your loved one has specifically asked to join you on these visits or has shown unsolicited enthusiasm about transitioning to a facility, it may be best for you to tour the facilities alone. Although honoring agency is important, the unfortunate fact is that even with a say in these choices, the outcome is often similar. People don’t want to be at a facility and sometimes it is necessary based on the caregiver’s limitations. Time is short and if someone is currently stable and enjoying their life, the better option may be to protect their peace, have some ideas waiting in the background and deal with this difficult transition when the time comes. Because as much as we wish there was a magic pill to soften the heartache of moving out of a home, there simply isn’t. Sometimes, when there aren’t great choices for the future, the best path may be the one that preserves happiness in the present.