From the blog

Not Sure It Is Time? How to Make the Care Decision Without Certainty

Readiness, the calm, certain knowing most families imagine, is not how this works. The families who wait for certainty often wait too long.

There is something many families do not realize about the moment they finally make a decision about care placement. It may not feel the way they expected it to.

Families who have been circling this choice for months, sometimes years, often imagine the moment will arrive with clarity. Something will happen, or enough things will add up, and the path forward will become obvious. What many find instead is that the moment arrives quietly, with ambivalence still attached. They make the decision and continue to wonder if they are doing the right thing. They feel grief and relief at the same time, sometimes within the same breath.

That is normal. It is what making a good decision under real uncertainty looks like.

There is no perfect moment

I talked about this with Matt Reiners on “Connecting the Dots”. With so many different types of decisions, there is really no perfect moment. Families wait for that particular moment when everyone agrees. They wait until it becomes obvious, or until they think everyone will be on the same page. That may not be realistic.

Dad may be caring for Mom, who might have some memory loss, and covering for her. A son or daughter lives in another state and is not seeing the same thing.

The families who wait for certainty often wait too long. The families who act before they feel completely ready, who trust what they have learned and move forward with love even when doubt is still present, tend to look back and recognize that they got it right, even if it never felt that way at the time.

What “right” looks like

The time is right when the signals are clear enough, the research is sufficient, and the available options are better than the current situation. It does not require that every question be answered, that every family member agree, or that the person you love has accepted what is coming. It requires that the weight of what you know points in one direction, and that waiting will not make the situation better, only harder.

One signal families often underweight is the state of the primary caregiver. When the person doing the caregiving is depleted, when their own health is being affected, when they can no longer provide the level of care the situation requires, that is a signal about the loved one’s needs as much as it is about the caregiver’s limits. A care arrangement that is wearing the caregiver down is not a sustainable care arrangement. The person you love deserves better than that, and so does the caregiver. I wrote more about that in when a spouse becomes a caregiver.

Name what you are unsure about

Uncertainty at this stage is not a sign that you have not done enough work. It is usually a sign that you are taking the decision seriously.

Uncertainty is easier to work with when it is specific. “I’m not sure” is hard to act on. “I’m not sure the memory care at this community is the right fit, given what I saw on the tour” points to a question you can look into, or a concern you can raise directly with the community. Write down what, exactly, you are unsure about. Then ask whether more information would resolve it.

Two kinds of doubt

There are two kinds of uncertainty at this stage, and they need different responses.

Informational uncertainty means there are things you still need to know. Things like a community’s Medicaid policy, a tour you have not finished, a cost that needs to be confirmed. That kind of uncertainty has an answer. All you have to do is get the information, which may mean knowing the questions to ask. I wrote more about how to evaluate an assisted living facility and how to pay for long-term care.

Emotional uncertainty is different. It is the grief, the guilt and the fear that no additional fact will resolve, because it is not really a question about information. It is a question about love, and loss, and the hardness of what you are doing. That kind of uncertainty does not need to be resolved before you act. It needs to be acknowledged, carried and moved through.

As I told Matt, the guilt does not go away. Maybe it is a different form of love that you begin to feel. "My mom/dad is really happy there" might mean you made the right decision. So it just shifts over time.

Trust the pattern more than the moment

Memory, function, and caregiver energy all go up and down from day to day. Your loved one will have good days and bad days. Decisions made on good days tend toward delay. Decisions made on bad days tend toward panic. Neither is reliable. What is reliable is the pattern over weeks and months, and telling normal aging from real decline is how you see it.

The question to ask is not “Am I certain?” It is “Do I know enough, and is waiting better or worse?” If the honest answer to the second question is worse, you have your answer.

Get a second opinion

If you have done the research and still feel stuck, an outside perspective can help. A geriatric care manager, whose job is assessing care needs and evaluating options, can offer a judgment about timing and placement that is not filtered through the love and grief that make your own judgment harder. A physician who knows your loved one well can weigh in on the clinical picture. And a friend who has been through this, who has sat where you are sitting, can offer a perspective no professional can fully replicate.

None of this means you cannot make the decision. It means you are taking it seriously enough to want the best information available.

Keep their voice in it

Where it is possible to involve the person most affected, it should be done, not as a formality, but as respect for the person whose life this decision will shape. For someone with intact thinking, that can mean a real conversation about the options and what they most want their days to include. For someone with moderate memory loss, it might mean a tour where they can form their own impressions. For someone with advanced dementia, it might mean making sure what you know about who they are, their history and the things that have always comforted them, is built into the choice. How to talk to a parent about assisted living is a good place to start that conversation.

After you decide

Almost every family second-guesses this decision at least once, especially in the first weeks after the move. That is not a sign you were wrong. It is a sign you care. The question to hold onto is not “Did I make the right choice?” It is “Did I make a thoughtful, informed, loving choice with what I knew at the time?” If the answer is yes, you made the right decision. The rest is adjustment, not error. I wrote more about the first weeks in adjusting to assisted living.

Waiting for certainty is a reasonable impulse and an unreliable strategy.

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