I am so frustrated I cannot think straight. The man now living in our house is someone I do not know. Rationally, I understand the reasons behind his attitude, rage, and depression, and I do try to be supportive, but, emotionally, there is only so much I can take.
He wants a shower but can't wash himself then he fights me when I give him the help he asked for! He cannot eat at all so I hide in the bathroom to eat something...he just about loses his mind if I try to eat in front of him. He takes pain medication - unscheduled - before I can get him into bed and then I am not strong enough to help this 6'4' man down the hall. He staggers side to side like a drunken sailor or gets half way out of the chair and his knees give out. So far he's plopped back into the chair and not onto the floor. I'm suctioning him 3, 4, 5 times a night. Oh - I know it is all a necessity and, believe me, there is nothing I will not do for this man, but sticking a tube down his windpipe repeatedly and cleaning suction canisters (gag) is doing nothing for my humor and attitude. I actually beat up a box of Press N'Seal in frustration. It was on the table, I was way, way past my frustration limit and...bang, bang, bang, the box connected with the table until pieces of plastic and cardboard were flying across the kitchen and I was left holding just the roll of plastic! I hate to say this but...I did feel better !!!!
By the way - Press N'Seal makes a fantastic wrap for covering casts, bandages and peg tubes. If I wrap and press it around his arm or press it against his belly and then seal it with tape everything stays nice and dry. It works so much better than the plastic bag/baggies everyone uses.
I am also in the process of cleaning out my father's house and getting it ready to sell. My parents lived in that house for 50 some-odd years and, other than what they did as a young couple, nothing's been touched in years. The contractors have carted away 4 full-sized dumpsters of junk and there seems to be no end in sight. There is carpentry work, electrical work, plumbing, landscaping, etc., etc., to be done. I'm running between home, Dad's house and work. Plus, all the things that George took care of while I worked has now been added to the daily routine.
No one explains that there is a price to be paid for being a caregiver. No one seems to know what we do. Almost all of the information we've received is geared to the patient. Somehow the person(s) in the trenches is left out. Where are the pamphlets to show how to suction, when to suction? Where is the book to tell me how to deal with the patient's depression, rage, the struggle to return to normal? Where is the 1-800 number that explains the intricate details of forever squirting saline solution down my loved ones' trachea and the cleaning of the resulting glop that is expelled? Is there a diagram I'm missing on giving injections, scheduling medications, measuring doses?
When do I receive the manual that explains how to help him face the stares from people that see the ear-to-ear scars on his neck and the hole at the base of his collar bones? What do I say to him when people hear him speak with the aid of a prosthesis or the electro-larynx and turn to see where the strange noise is coming from?
There is no way to hide these scars and alterations. There is no shirt sleeve long enough to completely cover the scars at his wrist, no collar high enough to completely hide the neck scars. In fact, some of the items used to help him speak, breathe and/or protect his trachea and lungs, accentuate the surgical results.
It is so very, very hard to watch him cry. To keep a smile on my face, a soothing tone to my voice. He is angry. I am angry. When did I get to the point where I know more than the visiting nurse?
I cannot begin to imagine what is happening inside his head. I can only watch and pray. I wonder if he can imagine what is happening in my head? I cannot do this for him. I cannot make it all better or take it all away. This is his journey but I am finding it is a journey for me also.
What I know will fit in a thimble, what I don't know will fill an ocean.