You know what makes being the caregiver to a disabled adult (24 years old) suck so damn bad and why it is the most aggravating job that I will NEVER do again (sorry to our family that is aging, but when you can no longer take care of yourself, into a home you will go)?
When you care a LOT more than they do.
When everything you try to do for them that is good for them is met with a fight.
Like opening the curtains every day so he can see the sunshine.
Like asking him to drink water every day to stay hydrated.
Like putting 1 scoop of vegetables on his plate so he gets some vitamins.
Like trying to urge him to have an applesauce squeeze pouch instead of the s’mores poptarts.
Like asking him to call his family that loves and misses him.
Like asking him to have some independence and look for things he needs just for himself online that cannot be purchased locally.
Like asking him to check his bank account balance over the phone.
Like having him make appointment arrangements for himself.
Like asking him to be accountable for his own hygiene and ask for a toothbrush, a washcloth, some deodorant, a Q-tip, a fresh bathroom rag, nail clippers, a napkin, a new shirt when it gets dirty, a bath when he needs one (before he needs one, in fact!).
Like asking him to be courteous of us cleaning up after him and to warn us that his pee rag is sopping wet because he spilled a little when he went before we pick it up with our bare hands.
Like thinking ahead when he knows he can only pee in his urinal twice without spilling and letting us know he needs it dumped when he finishes going the 2nd time instead of when he needs to urgently go a 3rd.
Like being mindful of his own medicinal needs and to remind us that he needs to take his laxative drink now because sometimes we are running around or cleaning up or cooking, consoling a cranky baby etc. and it slips our minds.
Like letting us know when he starts to get hungry instead of waiting until he is starving to want something right now.
Like begging him to get into his chair today to go down to the park and see some of this world in all of its beauty.
Like trying to have a meaningful conversation with him to be dismissed as soon as the last word leaves our mouths so he can tell us about the blue fire he made in Minecraft.
Yes, he has many needs and yes, we are here to help him because in his position, he cannot physically do very much himself, however when he doesn’t even care about his own needs, when he continuously refuses to take care of the things he CAN take care of for himself, how are we supposed to feel? Every single day it is a fight of some sort, a plea, and ultimately a long, inward sigh of sadness.