I am astonishingly lucky

I very frequently feel uncomfortable when I realize that, despite everything sad or awkward that has happened to my loved ones, there is nothing wrong with me. I’m not the one who went blind during my late teens, not the one diagnosed with diabetes or multiple sclerosis, not the one having to stay in a job I don’t much enjoy to keep good health insurance for the family. I am, perhaps, something of an oddity within the sibling community as an adult sibling who is very much in touch with my family but in no way in charge of my sister’s life. (Although there is a vocalization bias here; folks who aren’t worried about or seeking help with the new or changing responsibility for their siblings are a good deal less likely to say anything on SibNet, for instance.) The amount of buffering I experience from the precariousness of my sister’s current existence became even clearer last night.

My sister has had three staff members who work daily shifts with her for a bit more than a year. One no longer works the shift she had been covering because of changes in her life. Another will be moving away from the area at the end of this month because of changes in her life. The fourth member of their team is a supervisor; one of the ones we liked got promoted and now has family stuff of her own to deal with, so she’s less accessible as a resource within the organization. I heard last night that the current supervisor…is no longer supervising. Which leaves my sister with a single staff member, who cannot (and should not) singlehandedly care for Lily.

My father said that Lily might have to live at home next month.

If the staffing gap can’t be filled quickly, Lily might have to move back home.

Let that sink in for a minute. I haven’t heard of any other program that Lily could join that would support her living on her own this way. My parents were finally getting some relief from the strain of managing Lily’s life – they have been shielded from much of her insomnia, from her desire to be young and loud and social as they moved towards wanting calm and general quiet, from her need to be out doing things when there are errands to be run, employment to fulfill, chores to be done – you get the picture.

Over the year and a half or so that Lily has been in this program, her vocabulary has blossomed. She’s using more complete sentences. Admittedly, her stubbornness has picked up a bit, but this is the most complete freedom she’s known, so it’s understandable. My parents have actually had time to do things together during this period, like watch television shows or go out for the occasional brunch.

There is a lot more to the story that I’m not sharing here, of course, mostly to try to protect the wonderful women who have done so much to help our family. But I am honestly feeling a bit of trepidation – yup, had anxiety dreams last night – because having to tell Lily that there’s no more apartment would be heartwrenching, and there are some factors at play here that make me fear we won’t get a good staff in place in time to keep her apartment. (I’m not known as a pessimist for nothing!) And it also breaks my heart that, living as far away as I do, there is pretty much zero I can do (short of taking a leave of absence) to make life easier for my family if the system does break down and Lily has to move home…and I suspect that my parents would do everything they could to get me to stay here and work. It’s no small thing to have a job that is in my field and lets me do cool science when the economy isn’t great, and it’s no small thing to have a job that puts my doctorate to use.

So: I am astonishingly lucky. My body doesn’t cause too many problems for me, I’ve got a job and a home and food and heat, plus enough luxury to have some amusements and be able to give to others. And my parents are still able to be the management team my sister needs to have her own happy and fulfilling life, while living their own and letting me live mine. I am not yet being forced by circumstance to make the adjustments (including sacrifices) that will come when they need me to take on that role.

Here’s hoping, though, that this feeling of potential crisis dissolves rapidly into a happy solution…

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2 Comments on “I am astonishingly lucky”

  1. Lynne says:

    Is there no center for independent living in the area? I thought most states had at least a few. Would it be possible to just switch to a different organization, and have her move home be temporary?

    • Elysia says:

      I don’t know the full list of other options (it’s been a couple of years since we had those discussions), but the way my dad phrased it, the one other program around is the one that Lily was in when she got Salmonella. (We know based on that adventure that some of the staff had contravened my parents’ instructions regarding Lily’s care.) I’ve heard less from my parents about group homes in the area – to put it gently, Lily can kind of wreak havoc on groups and does much better in a one-on-one environment. And I’m not sure if the full consequences of the state’s recent financial…issues…have settled out yet. Special ed and disability services have taken some big hits recently, which (if I recall correctly) has already caused some providers to merge, lest they go under.

      Honestly, I only called my parents last night because we’d been playing phone tag regarding computer stuff that I was trying to resolve. 🙂 I’m sure over the next few days I’ll hear more details. Also, despite my pessimism, I’m still hoping that the staffing shortage can get filled before things like lease renewal come up.


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