I feel like a whirling dervish: we all know what it feels like to be so confused that our heads spin, literally, the feeling can make us dizzy and nauseous. The flip-flopping, the weighing of choices. It’s overwhelming. I just want to do the right thing, to make my mother comfortable, to keep her out of a nursing home if at all possible. But there are so many if’s. I am going to speak to an elder lawyer in Florida by phone on Thursday. I just need some direction. Whatever I look at, think about, or weigh all ends up with the boogey man at the end of the tunnel: MEDICAID.

My mother was a secretary for a social service agency. Over the years she and my father scrimped, watched their spending, went without, lived modestly and never over their means. My father passed away quite a while ago–he and my mother moved to Florida because it was too costly for them to stay in New York City and because my mother doesn’t do well in cold weather. They managed to save a nest egg over the years and that is what my mom has been living on. She managed well and made a few investments. The last four years in the assisted living have been draining what she has but now it is hemorrhaging. Her expenses are astronomical.

The issue is, when your assets are down to the bottom you are considered poor, in need. Eventually you apply for Medicaid (you’ve already been on Medicare which you have to apply for within three months of your sixty-fifth birthday.) If you need a nursing home–full time care, you have to pay out of pocket if you have assets, $10-13,000/mo. until you are drained of your money and your dignity. You need care and you are now impoverished. At the mercy of the state and federal governments. I’d rather not see this happen to my mother. That leaves me in a quandary. I am faced with so many decisions. Decisions that affect my days and my nights. I can’t find the answer.

Should I:

• -leave her in the assisted living ($2,577./mo) with a live in aide ($6,000/mo)? This can’t go on long;

• -move her to an apartment that would save on the rent ($800-1,000/mo) but she would still need the aide ($6,000/mo) and then have the additional expenses that the assisted living covered: utilities, cable, food; meals, cleaning, and laundry would be done by the aide. But I have to consider: moving costs, the possible need for more furniture if someone lives in. Two months of rent in advance. It would take months just to break even after this outlay. Eventually the money runs out and where does she go?
  

• -explore another assisted living facility as the current one looks nice but operates poorly–won’t repair stuff in a timely fashion if at all, rodents in the apt! That would still be another move, a lateral move: moving costs and the same monthly fees. The thing is that Medicaid does pay toward rent and care in some assisted living facilities BUT you must share an apartment, something my mother would never do (most of the residents have dementia) or possibly have to downsize from her small one bedroom to a studio. That in and of itself is a slap in the face to someone who has paid her way all these years. Mind you, there would be no money for an aide let alone for one to live-in. If you must have someone with you then you’re in a nursing home.

And then I ask, will she:

• -outlive her money and then have to go on MEDICAID? (poverty: govt takes all and puts you in a nursing home)  Not sure if you can stay in a rental apartment but she can’t be alone, but then she can’t afford an aide full time) it would make sense if one didn’t need something as restrictive as a nursing home, to be able to live in their own place and get care. Hello: it costs much less!

• -die before the money runs out? (at this rate she will be broke, spending assets, close to $10,000/month)

• -get enough from social security and her meager long term care policy to alleviate some financial pressure? (The issue is that nothing can cover the cost of the aide)

• -be able to get her Veteran’s survivor benefits at some point and would it help defray these costs?

I think that if:

• -she is put in a nursing home she will languish and die– they are terrible, neglectful places! remember what happened to her in those rehab facilities? They are actually nursing homes. You have nothing personal, you share a hospital room with a stranger. That is where she deteriorated, didn’t eat and got pneumonia.

• -she stays in the current assisted living when the time comes they will accept MEDICAID but she’d have to move into a smaller apt: share with another (not good as many of the people have dementia), be downsized to a studio apartment. Again she’d need an aide, but at that point there is no money to pay for one. She’d have to make do with limited services from the assisted living. That could be a disaster.

She will never live with another person. She has just recovered from pneumonia and is only about 80 pounds, very fragile, is fearful of getting sick from other people. There is community dining but the aide brings up her meals. She doesn’t want to be around people; many of them come down to meals ill and she has gotten sick many times. She is dependent on another person for all her activities of daily living.

When I spoke to her yesterday she insisted she could stay alone at night, without the live-in. “She should go home at night, I don’t need her.” “Oh, really, I said, and how are you going to get to the bathroom?” Even if she is able to make it to the bathroom, her balance is poor. That is what caused this whole thing to begin with months ago: she lost her balance and fell, fracturing her right arm. She had been in and out of the hospital at her request for blood pressure instability issues likely exacerbated by the fact that she was living alone and was frightened and anxious. Now she is a big shot seeking her independence, the way things were but may not be in the future.

She was angry: “No one is giving me credit for how much better I am. I’m stronger!” I felt like I was bickering with a pre-teen who decided that she could walk home at 11:00 pm after a dance.

But I am the one dancing … whirling like a dervish.

 

This series is linked: see “continued here.” Also, below the line there will be links for the previous post and the next.

The series starts here

continued here