What is a home? It used to be where our family resided, together. Now it is broken and about to be reconfigured.

At this time, Robert’s Medicare coverage in the rehab has expired. The statements arrive in the mail, endless papers with printed numbers that sometimes exceed my ability to imagine. Anyone who touches or talks to Robert puts in their dibs. So now what? Let me explain what is happening.

Robert cannot come home. He needs equipment to lift him, he needs people to help him. With everything. None of his activities of daily living can be achieved independently. He is wasting. When spoken to on FaceTime he listens. His mind is easily crowded, he sometimes responds, he can respond, his voice is strong, but what comes out is sometimes growling and angry. He occasionally comments on my blatherings of the day: I try to conjure up something that is interesting, I try to hook him with ideas. Today I rambled on and on about the royal family and how they are portrayed in The Crown. His eyes kept closing.

Are you sleeping?

No.

But, the din in the background is enough to knock you into dreamland if just to escape from it; that constant buzz of voices in the “dayroom,” loud laughing bursts from an aide, a lady on the other side of the room singing in Italian have all become an internalized, acquired and the accepted, constant drone. It is about 11:30 am and he is exhausted. He is lying on a bed, his head slightly elevated on a pillow.

He is in God’s waiting room.

In the meantime, at my command center, I am jolted to action by a visit Monday to the elder attorney. It is time to apply for nursing home Medicaid. Medicare is no longer contributing. This is the end of the line. This is what millions of people have done before me, this is how our country works, so listen carefully and think hard. This country, our country.

For those who hate Medicaid and its premises, well, you have every right. It is primarily for the poor. We don’t like to think about the poor, here in the US of A. We associate the poor with lazy good-for-nothings who refuse to work and get-away with stuff. Pull back the curtain and take a good look at what is going on here. This could be you one day.

You can be in need of Medicaid if you are “middle class.” You can work your entire life and your funds can be threatened because of health issues that you said you’d never have to face. No, not you. YOU said you knew you would die in your sleep at the end of your life after you reached at least 100: Your house can be in jeopardy even if you have a will. Your property, your savings, any inheritances. The laws change and change again and if you haven’t taken the time to protect what is yours you can be in for a blindsided surprise. You may have done these applications and procedures for a parent, but it is different for a spouse.

What strikes me hard is that even though I have always been a queen of paperwork, (it was part of my job): I sit and tackle it and pick at the mountain until I am done, but, how does a person who might have difficulty, who isn’t so sharp, or who is aged or infirm bear  this process of never-ending mountain climbing? They may just walk away and give up, and then do you know what happens? You get a monthly nursing home bill of an average of $20,000. THAT is for ONE month. The government would love it. And even if you complete the process, the government will likely approach the “healthy” spouse and ask that person to cough up some financial help from the money they earned over a lifetime of working from their savings.

What does this entail? Just to do an application? Gather round me my children. I know my friends who are here and reading from other countries will likely be astounded.

There is, at present, a five-year “look-back.” The government is willing to help you pay for the nursing home if you are destitute. If you are not destitute, you soon will become so: The “healthy spouse” gets everything moved to their name, along the way. The unhealthy spouse becomes worthy of living on the street in a box.

The look-back begins for us as of 2016. The attorney requests the following:

Every statement from 3/2016 to the present for any and all:
banking institutions;
brokerage institutions;
retirement funds:
stock and bond certificates;
annuities;
tax returns.

For whom?
for every account, be it joint or individual,
open or closed

All of what you have is tracked and reviewed. They want to see if you have given money away as gifts, what the big expenditures are.

Trusts that have formerly been set-up for “Community Medicaid” are dissolved. All that work I did in the fall has to be changed. This is a different situation now. I am  aware that my household income will be reduced monthly, drastically.

I left the attorney’s office on Monday with a full head and a heavy heart. The was another mountain to climb and river to cross. I began making the rounds to banks, then, for three days I made call after call, contacting institutions via people working at home. There were glitches: Some needed letters from Medicaid to do the printouts free, others wanted lots of money for the printouts: I am supposed to get letters from the lawyer to avoid those fees. I made charts and checklists. I make follow-up calls.

In three days since the attorney I began the process, the wheels have began to turn.

I told Robert what I was doing, never mentioning that he would likely be staying at the current facility. That the nomenclature was changing and that he was no longer officially in a rehab facility. That he needed much more than that. A nursing home. He thanked me for taking care of him. On some level he got it. Indeed he knows.

And despite his calling the place inept and inefficient, and despite my reiterating how people are taking good care of him and are caring, and despite my reminding him that he is getting care that I can’t give him. And despite Covid and all that goes with it, he knows.

And so do I.

When a person is at the end, when they dwindle and can’t thrive, as they disappear before your eyes…When you ask what you can bring them and there is no response. When you ask if they want to read and they exclaim, NO!, (despite their previous existence, when they never stopped reading)… When you think that maybe a radio and headphones are a good idea, you suggest it and they exclaim, NO!, again. And you don’t know what else to say or do.

When you wonder about their home; their body, where it went, what happened to it, that sanctum that once dwelled in our house, a sanctum within a sanctum, you realize, how the floors of their home have collapsed, the doors are blown out, the storm has invaded through broken windows: You have become destitute in the eyes of the government and that is good, because at that point, they will only take your monthly income: your pension, your social security and maybe more: It will go to pay for your bed and the institution in which your formerly strong body now resides, no longer for theater tickets, museum admissions, books, concerts: not for your previous existence.

You are in your home away from home.