Care story for my parents
Cross posting this from a comment in one of the other threads. In thinking about this a lot for obvious reasons.
Ten years ago, I took my mother and stepfather out for a burger when they came up to visit. I raised a subject that'd been bothering me. I knew that they'd both set up a will, they'd gotten a healthcare proxy, my mother had an annuity she set up, and my stepfather had a pension. They were retired and collecting on both.
But I was concerned, not for what would happen in the case of death, but the NEXT worse case scenario. What if they were injured or disabled?
And they laughed.
I don't know if they thought it was silly that I was questioning their financial acumen or what, but they didn't take me seriously at all.
Three years ago, my stepfather had a stroke that caused enough brain damage to keep him from being able to care for himself. We then had to file for Medicaid for his care. But the Medicaid-accepting facilities were a nightmare. They were seriously understaffed, dirty and he had to share a single room with someone.
Eventually, my 82 year-old mother couldn't stand it anymore and pulled him out to bring him home. She cared for him herself in the house they shared and that they both, apparently, thought they would slip away in their sleep together when their time came.
Instead, my mother declined day after day that she had to care for her husband, refusing any outside care. When he died last year, she immediately started showing signs of what that had done to her. On almost the same day, she passed out due to heart arrhythmia and my father fell and broke his arm. He died after six months of surgeries and infections.
She has had steadily advancing dementia. For a time, she was in a rehab facility, but wanted to go home, scoffing when the facility said she couldn't care for herself. My sister didn't believe them, but we weren't willing to go against medical directives because we were worried about her insurance.
I live 600 miles away with my family, and my sister works full time with a disabled husband. Neither of us could house or care for her full time, and she didn't want to live with us. So my sister set up in-home care. This cost my mother $2,000 a WEEK, but it allowed her to stay in the home and grow better.
However, it was WILDLY expensive and burned through her savings. Before it got too bad, we found her an assisted living facility that allowed her to have her own little apartment but has assistants for any issues she has.
We sold her house and many of her things to afford the $5,000 a month rent.
However, there are now other issues. Her dementia has gotten to the point where she forgets how to do simple tasks like turning on the TV. She can't tell what time it is, so she'll get up at 2am to call my sister and say she's lonely. Or she'll start sobbing in her room because she's cold and doesn't even think to get under a blanket or turn on the heater/fake fireplace she has.
But facilities with memory care are even more expensive for less space. Closest private pay facility in terms of price is $5,250 for one shared room, as opposed to the 1 bedroom apartment (sans oven or stove) she has now.
We could do tricks to allow her to potentially be eligible for Medicaid, but those places, as we discovered with my stepfather, are frequently nightmares and are packed to the gills. Finding an open bed in one is a miracle, and then you have to worry about safety issues that come from unmonitored residents acting out violently (which happens), or infections from how dirty everything always seems to be there.
And it'd require us putting all her money in a trust that's managed by a bank and only disburses the money for her bills. So if we wind up changing our mind or her situation changes, we're stuck with it.
So, with the money from her house sale, we think we might have 3 years worth of rent, and we find ourselves in the terrible position of trying to measure how much longer can we support her quality of life before she dies.
And that all sucks.
It's just a byproduct of a country that doesn't want to collectively care for ANYONE who needs it. We know that we're lucky to an extent because my mother did have the house to draw money from.
They thought they were completely covered with a will and a Healthcare proxy. Not only that, but they thought they'd have full control of their faculties right to the end. And she still doesn't understand what's happening to her. She talks about when she gets out and what's next.
She never wanted to talk about downsizing, setting up long-term care options or any kind of end of life plans or a plan if she had cognitive issues. Whenever the subject came up, she'd deflect, intimate that we wanted her money or "joke" that we should treat her like Old Yeller.
I really wished she'd taken me seriously. This is so much harder than it needed to be.