It Cost Me $700,000

My wife volunteered instead of working. The disability system read that as never having worked at all — and everything after followed from it.

The number

Seven hundred thousand dollars.

That is what it cost me to care for my wife.

Not the total cost of her illness — insurance paid for a good deal of the strictly medical side. That is the number that came out of my accounts. Savings first, then retirement. It did not damage my finances. It ended them.

Who she was

Lori spent thirteen years repairing hospital laboratory equipment. Then she stopped working for money and started giving her time away.

She was good at the job. It was skilled work — she kept the machines running that other people's diagnoses depended on, which is a detail I find harder to sit with now than I did then.

And at some point she stepped back from it. She volunteered. She did unpaid work, for other people, in her community, for years.

Because she volunteered instead of earning, the disability system counted her as not having worked. Not as having worked less. As not being covered.

What I assumed

That there was something. Some program, some door, some office where you take a diagnosis and they tell you what happens next.

I think most people believe this. I did, and I am not a naive person about systems. I had been a working engineer for decades. I assumed that a catastrophic, documented, progressive illness in a woman in her forties would land somewhere in the safety net, and that my job would be paperwork and patience.

The paperwork was real. There was nothing at the other end of it.

The specific discovery came in pieces, over months, each one arriving as its own small surprise — which is its own cruelty, because you never get to absorb the whole of it at once and adjust. You just keep finding new floors underneath the one you thought you had hit.

The four doors

Every one of them was shut, and each for a reason that made perfect sense on its own.

I've written the mechanics out properly in the companion article, because they matter more than my story does. Briefly, though, here is what we ran into.

• Disability insurance. Social Security Disability requires not just work, but recent work — roughly five years of it out of the ten before the illness begins. That produces a cutoff called the date last insured. Lori's had passed. Nobody sends you a letter when it does.
• Medicare. Under 65, the only routes are age or disability. She was too young for the first, and with no disability entitlement there was no second. Had she qualified, Medicare would still not have started for about 29 months. ALS is exempt from that waiting period. Alzheimer's is not, and no one has ever explained to me why.
• SSI. The needs-based program has no work requirement, which sounded like an answer until I saw the limits. A couple can hold $3,000 in countable assets. A working spouse's income counts against the applicant. I was working. That was the end of that.
• Medicaid. The spousal protections are real and I do not want to disparage them. But they engage after you have spent down, not instead of it, and they are built around nursing homes rather than memory care. For a long stretch we were simultaneously too well-off to qualify and nowhere near able to afford what she actually needed.

Married, employed spouse, not enough recent paid work, under 65. There is no program for that person. I have looked.

What it actually meant

Savings, then retirement. In that order, and faster than you would think.

I am not going to itemize it. Anyone who has priced memory care knows the arithmetic, and anyone who hasn't will not be helped by watching me do it.

There is a particular quality to spending money you know you cannot replace, on care you know will not produce recovery, for a person you love, month after month, while working. You are not making a decision. You are watching a subtraction.

And you keep doing it, because the alternative is worse and because she was my wife.

I am fifty-four. The retirement I spent thirty years building is gone. I do not say that for sympathy — I made every one of those payments on purpose and I would make them again. I say it because the arithmetic was not a personal failure and it was not bad luck. It was a hole in the design, and I fell into it in a way that was entirely predictable to anyone who understood the rules.

I did not understand the rules. That is the part I am trying to fix for you.

What I would have done differently

One thing, above all others, and it takes fifteen minutes.

I would have checked her insured status at ssa.gov. Years earlier. Before there was any reason to.

You can see it in a my Social Security account — the earnings record, and whether disability coverage is current. It would have told us that the clock was running out while she volunteered. We could have made a different choice, or at least an informed one. We might have bought insurance while she was still insurable. We would certainly have applied differently, and sooner, and argued harder about when her symptoms actually began.

The rest of what I'd do is in the companion piece: apply immediately, fight for an accurate onset date, see an elder law attorney before the spend-down rather than during it, find out what your state's Medicaid actually pays for.

But if you take one thing from this: if someone in your household has recently stopped working for pay — to volunteer, to caregive, to raise children, to recover from something — their disability coverage is quietly expiring, and nobody is going to tell them.

That is true whether or not dementia is anywhere in your life.

What I want changed

Start with the waiting period.

I am a caregiver, not an advocate by temperament. But one thing here is plainly indefensible.

A person approved for disability waits about twenty-nine months for Medicare. ALS is exempt from that wait, correctly, because the disease moves too fast for the wait to be survivable. End-stage renal disease is exempt.

Alzheimer's disease is not. Neither is any other dementia.

There is no clinical argument for that distinction. A fifty-year-old with Alzheimer's is not going to be restored to work by twenty-nine months of patience. Every month of that wait is a month a family pays for everything, at exactly the point when one earner has usually already stopped.

That is one line in a statute. It could be changed.