Disappearance

My world shrinks every day.  One of the unspoken side effects of being a caregiver (at least I haven't read or heard much about it) is the actual minimization of space defined as mine within my own home.  I've read plenty of things about the disappearance of communication, intimacy, connection, resources and finances.  But no one seems to talk about the reduction of personal space.  I guess it depends a lot on the nature of the illness of your spouse or sick child, but it is definitely a growing issue -- as his needs increase, as his ability to navigate wanes, the very space I can exist in diminishes daily.

My husband is in very advanced stages of diabetic complications.  I can't say final stage, because he continually beats the odds and defies expectations of medical professionals.  I've prepared for the end, and begun putting our affairs in order, and resigned myself to being a single parent more times that anyone should have - I can't even remember how many times at this point.  All exercises in futility returning back to our ever-adjusting "normal".

As his conditions advance, or really, the better word is worsen, his eyesight failing, his balance more off, his ability to drive his motorized wheelchair declining, the space in which I can keep my things, my livable environment gets smaller, and smaller.  Our furniture gets rearranged more and more, condensing in layout.  Our counter tops, tables, and other flat surfaces strewn constantly with his medications and other paraphenalia, as he needs them out to see them since his dexterity is failing as well, and whereas we used to have medical stations set up - his ability to sort through them gets more and more difficult with every passing day.

The days he does manage to get up on his prosthetic legs, everything needs to be out of the way, since his eyesight is so bad, and he can't feel what he steps on, nothing can be left on the floor or in the way.  Not that that's a great way to live anyway, but sometimes one forgets to put their shoes away after a long day, or you forget about that bag you put down when you came in the house carrying everything because you're the only one who can.

Conversely, because he doesn't see so well, and because of his dexterity issues, he doesn't always realize what he's dropped.  So the floors are often covered in residues, and various detritus that your feet, that CAN feel, find painfully or at the very least, uncomfortably.

Our bathtub is filled with various medical supplies, our entire master bath filled with his things.  Our bed, most often half covered with his clothes, or prosthetic accessories, or just his tools that he uses to get through the day.

I rearrange the furniture quite often as his ability declines, squeezing things closer and closer together, out of his way, and into mine.  I suppose I could rid of a lot of things, but in my heart and ever increasing delusional mind, in some way I hope he either gets himself better so that I can return things to normal.  Sometimes, it goes the other way - I'll be honest.  That he gets so bad he'll have to go into a facility of some kind, so that things can return to normal.  And then the guilt sets in.

My social life is almost all but gone - though I know my social media accounts appear to indicate otherwise.  People know I'm on call all the time, and to be honest, rather than leaving an evening I'm enjoying, it's just easier to stay home.  And then if I do choose to go out, I grapple with the guilt of leaving him alone, or leaving my kids on watch, and eventually become consumed with believing that people are judging me for coming out at all and not being a more dedicated spouse.  This may be the hardest for me as I'm quite a creature of connections.  Which is probably why I'm so involved on social media.  If I can't be with people in reality, at least I can connect virtually.

With each passing day, my label of caregiver, becomes a mockery of what it's supposed to be.  As my resentment for our situation grows, my disdain for his behaviors increases, and my longing for a semblance of a "normal life", a return to healthy, adult relations builds...my caregiving becomes more of an empty title, rather than an apt description.

To be continued...