Have You Talked with Your Parents About When They Die?

Last semester FF was dutifully (not a word I often apply to him) doing his homework for his Intro to Sociology course at the local community college. And this question came up. Yes, that one up there in the title. Oh boy.

Sociology was an interesting but sometimes challenging course for him. In addition to examining the sociological perspectives on how we humans interact, oppress, manipulate, nurture, and mate with one another, for an assignment he had to observe a crowd of people and then break a social norm. (He walked around Kroger wearing a clown nose.) And, of course, write a 4-page paper about it. As you can imagine, it was just a thrill ride for a young person with autism whose only goal in life is to fit in. The final paper was a scintillating 6-page introspective look at a day-in-the-life-of FF.

A little side step here: Probably the very worst type of writing assignment you can give to my not-so-little non-writer is one that requires him to write about himself. There was many a time in elementary, middle, and high school when a well-intentioned teacher caught an earful of insolent, bellicose protest for handing FF the "Keep a Daily Journal" directive. I would imagine that to him it's like asking goldfish to not only jump out of his bowl but also to flip flop under the warm caresses of a blow drier set on high for a half hour or so. 

And yet he's making some progress. "The brain is a muscle," so says a meme that pops up now and then on the internet. I really do believe that the more he stretches and pokes and prods into the areas that are incredibly difficult for him, the more capable he becomes. He completes online modules independently. He checks his assignments and grades regularly.

Doesn't mean it's always easy. Doesn't mean he no longer experiences bumps in the road. He does. He still doesn't understand why it's important to be polite or tactful. He will tell you he's ready to live in an apartment, but he doesn't do laundry, clean anything, recharge his phone, or get himself from point A to point B. He can't articulate a life goal yet. He needs to be reminded to take his medicine (although he refills his med strips by himself). He has no friends. He does not communicate with anyone via phone or email other than his parents.

This is FF's version of high-functioning autism. 

That brings us to the Sociology 101 questions: "Have you ever discussed the issue of aging (your parents' aging) with your parents? Have you made decisions, together, on what do do in the future?"

Little does that Soc instructor know that these are the issues that pester and poke at every parent of a child with a developmental disability. 

His answer was, essentially, a little bit. They (the parental units) talk with each other a lot about it, but not as much with me. 

True. He knows that we plan for his future and for that of his sister. He knows that we have limited guardianship for him, though I really don't think he understands the full extent of what that means. We've told him that we have set up a special needs trust for him and though we haven't explained all the details, we've tried to let him know that we're saving for his future. He was thrilled when the ABLE Act passed, because he understands that it means he can now receive benefits (he's not on SSI or Medicaid) but still save money for himself. He won't need to promise to be poor for the rest of his life.

That's all good as far as it goes. But here's the problem: We haven't talked about or really dealt with the "what if" possibilities with FF or Daughter Dearest. Those range from the very drastic and most terrifying: We're both killed in some catastrophic accident next week, and the two of them are left to figure out life on their own. Who do they call first? What should they do? Could they stay here in our home with supports? Where would they find those supports? Should they move to another state to be closer to family? How would that work? 

And then there are the aging, getting sicker variations: One parent has increasing health challenges and the other dies of something unexpected. Or, both parents are failing fast--my husband has an existing heart problem; my family has a history of both heart disease and Alzheimers--and FF and DD need additional supports. Who do they call to advocate on their behalf if we're no longer able to do that for them? 

During our short conversation about the Sociology assignment, FF told me they'd watched a video in class about aging in America. Then he bluntly laid it on me that he would not be the person to care for me if I needed help or had to go into a nursing home. Uh, yep, I knew that. I really need to live to 120 with the vim and vigor of a 50-some-year-old and then say goodnight. 

That professor opened a can of worms with her question. Or rather, the can was already slightly open; she just cranked up the lid. 

We've already done the basic architecture--financial planning, guardianship and the special needs trust--we just need to put more detail into the blueprint. That will mean encouraging and even pushing them to practice independent living skills. It will mean painful discussions with them and with far away family.  And it will mean contingency instructions for DD and FF. We're nearing retirement age. 

The clock is ticking. Aaaaargh!