June 17th and June 18th

Some background: My mother has been a type 1 diabetic for over 50 years and is now in kidney failure. A year ago she was a social butterfly, leading her HOA's social committee, emceeing the community fashion show, and playing bridge a couple of times each week. Her health began slipping about a year ago. A cane by March, then a walker. We were doing the responsible thing and planning her move from independent to assisted living. She was scheduled to move into her new apartment on July 1st. During the two-week interim, in addition to at-home care, I stayed nights with her on the sleeper couch.

We thought we were ahead of it.

On June 17th, we talked excitedly about her new apartment, and she told me all about the lovely lunch she'd had at Olive Garden with her granddaughter and great-granddaughter. It was a good day. An ordinary, wonderful, good day.

On June 18th, before dawn, I woke to sounds I will never forget. I ran to her room and found her unable to speak, stiff as a board, drenched in sweat, and near death. I called 911.

What followed was three days in the ICU, then four days of ICU delirium, a temporary, dementia-like confusion that no one warns you about and that is terrifying to witness in someone you love. Everything was unstable and changing faster than anyone could anticipate.

The moment she was moved out of the ICU, while I was still trying to digest all of this at a speed no one can actually digest it, the case manager met with me, handed me a stapled packet of nine skilled nursing facilities, and said, "You need to get on top of this. We can't choose for you."

Nine facilities. A stapled packet. A deadline. A mother in delirium down the hall.

That is a lot to handle at once. Here is what I learned, some of it the hard way, so that you don't have to.

Lesson One: The Cost Will Take Your Breath Away

We visited three skilled nursing facilities. The private-pay rates ranged from $467 to $550 per night, which comes to $14,000 to $15,000 a month for a private room. And to be clear about what that buys: a room similar to a hospital room. Not a suite. Not a resort. A hospital room with a call button.

I've quoted long-term care costs to clients for years. Seeing the number on a rate sheet with your mother's name attached to it is a different experience entirely.

Lesson Two: The Medicare “20 Days” Is a Myth, Sort Of

I was told confidently, by all three facilities I visited, that Medicare covers the first 20 days in a skilled nursing facility, period, whether the patient is improving or not.

That was not our experience.

Here's the reality: after a qualifying hospital stay, Medicare can cover up to 20 days at no daily cost, but only for as long as daily skilled care is medically necessary. It's a ceiling, not a promise. As Mom improved, the facility moved to release her after just 7 days. We pushed back and managed to extend her stay another 5 days, 12 in total. That was it.

Two takeaways for you:

Don't build a plan on “Medicare will cover it.” Medicare covers short-term, skilled, medically necessary rehabilitation. It does not cover long-term care, and it does not guarantee a number of days.
You can appeal and advocate. We got 5 more days because we asked, questioned, and didn't accept the first answer. Someone has to be the advocate.

Lesson Three: Four Considerations When Choosing a Facility

First, let me paint the picture of the moment this decision arrives, because no one chooses a facility on a clear-headed day.

You're in shock that it has even come to this. You're still recovering emotionally from having nearly lost your mom or dad. Then the delirium sets in, and no matter how many times the doctors tell you it's temporary, a quiet fear takes hold: what if this is who they are now? You are shocked, scared, and sleep-deprived. And that is exactly when you're handed the task of finding the right place for them, while trying to wrap your arms around their finances and still carrying your own work and family responsibilities.

That is the moment someone hands you a stapled packet of nine facilities and tells you to get on top of it. You need a filter, fast. Overwhelmed by the task, I reached out to one of our clients for guidance, a man who has spent more than thirty years in this industry running facilities. I so appreciated the extensive analysis he and his team provided and the professional guidance on how to evaluate facilities. Seriously, in that moment, it was a treasured gift that meant more than I can say. Recognizing that few of us have access to this kind of insight, I thought I'd share it with you.

A packet may show several scores from different sources. Focus on the official Medicare ratings. You can check them yourself, free, at Care Compare.

Here are four considerations that can make a difference to the quality of care:

Health inspection scores. The overall star rating is a headline; the health inspection score is the story.
Staffing hours per resident per day. This may be the single most predictive number in the packet. More nursing hours per resident means faster response times, fewer falls, and better outcomes. Ask for it specifically.
Ownership matters. Nonprofit facilities, as a group, tend to outperform for-profit ones on staffing and quality measures. It's not a guarantee, but it's a meaningful tiebreaker.
Look for recent surveys. A glowing inspection from three years ago tells you about a facility that may no longer exist. Ask when the last state survey was done and ask to see it. Recent deficiencies and how they were corrected, tell you how the place actually runs.

And one more thing no checklist captures: visit unannounced, at a mealtime. Smell the air. Watch how staff speak to residents. Trust what your gut tells you in the first five minutes.

Lesson Four: I Needed to Prepare More, and I'm the Professional

This is the humbling one.

I help families plan for exactly this. And yet when the crisis came, I discovered gaps in my own family's preparation: conversations we hadn't finished, documents that weren't where they needed to be, decisions we'd assumed we could make “when the time came.” The time came at 5 a.m., and it did not wait for us to get organized.

So let me ask you what I now ask myself: If the phone rang tonight, would your family know where the healthcare power of attorney is? Would they know your wishes? Would they know how the care gets paid for, and for how long? And would they know who to call for help?

On a Lighter Note: The Towels

For years, my mother would quietly go behind me and refold the towels. I'll admit it, The way she folded them was beautiful. And I never bothered to learn, because I always figured someday I'd get around to having her show me. We have time.

One of the odd regrets I carried while she lay in the ICU, near death and then lost in delirium, was this: the towels. I thought, "Every day for the rest of my life, I'm going to be mad at myself that I never took one moment to let her show me how."

So once she was stable, I literally brought a towel to the hospital. The first attempt was unsuccessful because the delirium hadn't lifted yet, but once it passed, she showed me how.

Now I have it. And someday, long after she's gone, every time I fold a towel, that little task will bring a smile.

Don't assume you have time.

Where Things Stand

I'm happy to report that, while this remains an ongoing journey, on July 8th Mom left Sarasota Memorial Rehab and successfully moved into her assisted living apartment. One week later than the plan called for, but she made it.

On June 17th, my mother was planning her new apartment. On June 18th, everything changed. The distance between those two days is one night's sleep.

Plan like it. Because what I thought I knew and what I know now are two very different things, and I'd rather you learn it from this letter than from a stapled packet handed to you outside an ICU.

What I Thought I Knew and What I Know Now - A Second Letter from Victoria