Nine years of White weekends: A new chapter?

I'm late this year in acknowledging the ninth anniversary of my first White weekend.  I was in Florida visiting family, so it slipped my mind. I'd like to say it was because the visit was so much fun, but it wasn't.  My 48 year old sister, who has Down Syndrome, is in the advanced stages of Alzheimer's. She lives at home with my 76 year old parents, whose lives now revolve around caring for her.  Just before Christmas last year, my sister had a seizure in the middle of the night and apparently aspirated while she was lying unconscious, which led to pneumonia.  While in the hospital, she wasn't allowed out of bed for fear that she'd fall. She falls a lot, it began happening a few years ago and was one of the first signs of dementia.  The hospital staff didn't want to fill out all the paperwork that would be required if she fell, so they kept her in bed for almost two weeks. When my parents brought her home to continue recovering from the pneumonia, she got out of bed a couple of times, and fell a couple of times. Despite having a physical therapist come for a month of sessions to work on her strength, she's been in bed ever since.

Understand what this means--  She can't get up and walk to the kitchen for meals, or to the bathroom. She can't even stand up to get into a wheelchair.  She has to be fed in bed, and as for the bathroom...  I spent my recent visit helping my parents, who have their own health issues, change my sister's diapers. My sister is not only sedentary, she's massively overweight. And yet, when it's time to roll her around to clean her up and change her disposable underwear (and often the sheets as well), she suddenly has the strength of three people and it's like she's auditioning for a role on G.L.O.W., Gorgeous Ladies of Wrestling.   

So this is how my parents live these days, an endless, exhausting round of feeding, cleaning up, washing up, working with a temporary nurse and occupational therapist to try to figure out how to get permanent help paid for by Medicaid because they don't want to put my sister into a care facility and they can't afford to pay for help.  Oh, and while I was visiting, my brother called and told us he'd been laid off (again) and he couldn't come visit because his car was broken down.  

I came home from Florida to my quiet, shabby, comfortable apartment in Maryland and have had trouble sleeping because I feel guilty that I have the luxury of getting into bed at night knowing that I can sleep without interruptions and then get up the next morning to drive to work at a job that pays me a decent living.  And that on the weekends, I can go out and do fun and interesting things without worrying too much about what it costs, or having to take care of anyone but myself and a pair of cats.  I shouldn't have much to complain about, should I?  And yet how can I go happily about my life knowing what my family is dealing with?  We're not a close family and expressions of affection are strained, but just because I don't feel close to them doesn't mean I can't recognize that they didn't ask for their lives to end up this way. So the sense of obligation is strong.  I feel guilt that I'm not doing more for them, but then the obligation smothers me and what more can I do, anyway?

All of that aside, it feels lately like a chapter in my life is ending and I've no idea how the next one might develop.  Going down the Jack White rabbit hole nine years ago was the beginning of this chapter that seems to be closing--  Nothing's changed as far as my addiction to Jack's music goes, but the peripheral stuff is definitely shifting.  I made a lot of friends through his music, and now, lately, it feels like I'm losing many of them.  A couple of them died, others became friends with other people, some are taking breaks from social media, and some maybe weren't really friends to begin with.  Considering how much of the fun of new records and tours from Jack revolved around making plans with and seeing all of these people, feeling that I don't have these friends to talk and plan with anymore has diminished my excitement about the recent announcement of a new Raconteurs album and a potential tour.  


 
I'm self-aware enough to realize that my own behavior is part of the problem--  Any hint of rejection makes me withdraw. It's been the pattern throughout my life, from elementary school on.  I make friends, something happens to bring those friendships to an end (changing schools, changing jobs, moving, disagreements, whatever), I end up alone until some other impetus brings some new people into my life to try to connect with.  I've never mastered the art of reaching out.  My hermit crab shell fits too tightly.  I keep feeling like I need to make more effort to maintain the connections with some of these friends that I feel slipping away, but some of the times when I've tried to do that... it hasn't worked.  So instead of reaching out, I step back, back to the familiarity of being on my own.



And I really thought all of this 17 yr old "woe is me" emo angst would've been done with by the time I reached middle age.