Again. We have gone round and round all morning. I have given him every minute since 8 o’clock so he could know I am listening to him. He has kept on and kept on about hating Rocky Mount and how I censor him. I let him talk and kept silent. He apologized for fighting with me and said how he should just realize I don’t talk easily in the mornings. I thought we’d found some peace and I wrote G a list of things to do for me. Steve wanted me to have him go outside and stack the wood pile right now. I said later is fine because it’s raining. He said “I always did those things regardless of the weather.” I said I know it, but now, we are protecting ourselves from getting sick. I mentioned calling the city about the tarp that breeds mosquitoes lying in the yard of the house next door. He came back with putting a chain link fence around the front yard. I said I’d like the falling down fence on the other side of us knocked off the posts and laid against the house. he went off about stupid people and RM not caring about how people keep their property. I felt myself cringe physically, and asked him if he could try not to go off onto other examples and stick to the conversation. He jumped on me about cutting him off and not letting him be himself. He headed back into his early morning tirade and I said NO. I’m not listening and he said I guess I just won’t talk then. I said Fine. Don’t talk and as he continued with his flood of how I won’t let him express himself, I raised my voice said THAT’S RIGHT and put my earbuds in. He tried to talk louder and I turned up the music. I hate to hurt him, but I can’t stand another moment of this today.
Now he’s in the bedroom crying again. Shit. Shit. Shit. There is no winning in this situation. It sucks for both of us.
Welp, he’s back on a foley catheter. Prostate is swollen bigger and he can’t pee. I feel so bad for him but he refused to have it treated when we had money to cover it. Now I have to refile for his medicaid.
Strokes are so cruel. They take love and twist it. They take self, and diminish it. Stroke leaves us with the semblance of desired reality without the substance of our relationships. It’s a cruelty that can be invisible unless you live with it. it’s doubly cruel when the person knows they aren’t right inside and yet can’t fix it. All the memories and facts and knowledge are there but it’s inactive except during tv shows or brief encounters with strangers. With me, he’s just sad and wants to be somewhere else. We didn’t get to sell the GA house and take the money and fix this one, flip it, and move to the mountains. We got interrupted and stuck in Rocky Mount. I can make a home anyplace, out of anything. Steve doesn’t have that skill. All he sees is “it’s not the mountains’. I can’t move us without him and he’s not able either and he can’t stand it. This is not something that can go away or heal up and disappear. I’m sorry I make people sad or uncomfortable, I really am – I’ve even been told by a lifetime friend to only post the good stuff. She told me I was being vindictive by posting because I want others to suffer too. I’ve blocked her from seeing my posts to protect her. I’m sorry I’m different too. I wish this was like a broken bone where it would heal and be done and over. I wish SO MUCH.
Steve wants to be better. He wants to want to go on living. His mind that can’t work his arm and hand and leg and half his mouth says “What’s the point?” I have people I can talk to via an online support group. I have you guys. Steve doesn’t. There’s not a physical group close enough to go to, and he can’t manage one on his phone. HE HAS A PHONE. His family doesn’t call. His friends don’t call. Ken does, but Steve thinks it’s only about playing trivia. I can’t afford to drive us to Atlanta so Steve can play trivia and Steve thinks that’s the only reason you call. Please just call and chat with him. Somebody call and tell him how Shelby is doing. Sheila, Janah, he loves you guys. he’s outside the loop. He cried when your mama died. He cries when his friends and family hurt and there is nothing he can do. He can’t even leave a note on Facebook.He doesn’t think anyone loves him or misses him or needs him. Do you all get me and understand what I am saying? This stroke has fully isolated him. Do you really think a pill will fix how he looks at these things? Do you see why he wants to die? He walked the hall last night over and over crying to God “Please take me.”
Forgive my rant. this morning. I’m not trying to bring anyone down OR rip Steve a new one. That was not my intent. I want him to CENTER himself and find his emotional BALANCE. I want him to buck up and be STRONG like I have to be. I want him to see that I love him. I want him back. These meds are not good for anyone. I want him to to choose to be better so there is less strain on me. It just gets to me sometimes. He’s healthy. HE’S HEALTHY. He was supposed to take care of me – what a joke… another cruel residual of his stroke. It’s awful to know if he had someplace else to be he’d have the impetus to get better so he could leave. Not because he doesn’t love me. He just doesn’t want to be here. That’s what he has fixated on. I told him not to say it ever again. I don’t care. Unless he gets better, this is it. He should be thankful we have a house we can’t loose. I’m sorry his stuff is gone. I just went through the same heartache when kayla gave my things away. I cried off and on for a good long time. Then I went on and started replacing what is gone. I understand. He said no you don’t you can’t. You haven’t had a stroke. I said keep it up, you are making me sick too. He cried and I cried. He got up and dressed and we took the dogs out with us. He stayed in the car with them.
And tomorrow, G turns 21.
What a wonderful way to live. Right?
Thank you God…for not taking him. I swear I’ll try to find my joy and hold it close. The little things hold my sanity. The squirrels chasing whatever it is they chase, make me laugh. The dogs give me smiles. My knitting settles me. Thanking God holds me together. When I reach for my husband that hollow after stroke LOOK answers me, I turn my face away and cry and carry on.
And I guess that’s it… I told him to walk the circle and shake a leg. I laughed, he didn’t. He just got up and struggled on.
Life moves on and shifts and rolls and eases and squeezes. So tired some days. Steve has his intellect in tact but his emotions have a disconnect. When he tries to engage them, it (he) becomes upset and cries out. He loses his words and makes these god awful noises. He bangs his cane and walks like a stomp and paces and it’s so disconcerting.
On Tuesday I was seized by an intense need for silence. My mind screamed I can not listen to more of this! Not listen to stories point by point that I lived and also have heard a hundred times. Not listen to what everyone we know is doing wrong or that is bad for them. I intensely needed silence. For 2 hours Steve focused on the houses next door and each item that was wrong with them. It shifted to Charlie (a brother that’s been dead since 2003) and then the yard at the house in Georgia (which we sold last May). I wanted to go bang my head on the wall to drown the words out.
I tried redirecting and it didn’t work. I tried asking directly and there was still another example or 4 or 8. OMG. I swear I tried to just nicely ask and he came back with who else do I have to talk to? (guilt and license to continue). I tried saying please. I ‘resorted’ to interrupting. Now he’s mad and not INTERESTED in talking to me EVER. He said “All you want to do is set me off so I lose control…” he’s never going to talk to me again.
I guess he can’t win and neither can I. I have tried to give him all of my attention for days on end and it’s too much for me to maintain. I can do it until he starts reliving the tough parts of my life for me (telling me how I should have handled every single situation, followed by the question “Am I right?” and saying Yes, is giving in and releasing ME and saying nothing pisses him off) and then, I did a knee-jerk correction and that’s all she wrote.
Now he’s definitely not speaking or acknowledging anything I say. Our son was in his room belting out “It’s Raining Men” and it was funny as anything. He wouldn’t respond. So childish. I tried my hardest to say I had to have a little quiet and off we went into the wild blue yonder of Stroke world. SIGH.
I can’t keep a pain journal anymore. Every Journal entry I post is about Steve. Every prayer is about Steve. Every breath is about Steve. I want to fight back and say ENOUGH, but I can’t. I have to put ME back in the box and continue on. I have to be the happy lady and just ignore him and his words or lack of them, and his fits because he can’t handle anything. I’m not allowed to change the subject or pick the conversation or challenge any thought. I want to say “Take your miserable self back to Georgia!!!” And instead I write on my FB wall and my friends disappear and it feels like there is no one left. No one to listen or touch or say a nice word to me. I’ve lost my husband, my love, my self, all in the trappings of his stroke.
He says no if I offer to make him coffee or a sandwich or a plate of food. He doesn’t respond to any question or gesture or kindness or apology. He gets to do this and I have to take it because I am the carer. There are days I really want to say FUCK that but all I really want is my husband back.