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.
Our handyman friend is here to fix our fence and deck over the next few days. It’s so hard listening to Steve try to talk and and have conversation. Half sentences and lots of you knows and veer offs from the subjects. The other man is a Steve also and he’s just letting him talk. Bless him. I could easily cry but what good would it do..
My pastor had texted about getting Steve to come with him on a drive and as I read it, my phone called him back. I had the best conversation with him. Totally moved me outside of myself. I’m so sorry for all that happened this morning. In God, I am not limited. We are going to keep moving forward on this journey and whatever lessons lie before us, I pray they come with a side of Mercy and Grace. I’m sorry for spilling over onto this group of lovely ladies and I thank you each so much for being here to lift me up.
I had a small burger patty and some blueberries with sour cream and a pinch of sweetener for lunch. That’s one of my favorite things 🙂 Plus, the doctor noticed I’d lost some weight. YAY! I decided the 55 lbs I put on since Steve’s stroke, has to go.
His blood work came back excellent. His PSA has stayed the same (prostate is enlarged) b/p and cholesterol are great. Diabetes is still controlled with diet. Steve’s fine except he decided to be a whiner and carry on about hating Rocky Mount again. How can he hate it? He never goes outside. He got all ticky and made me drop him off instead of coming with me on errands. Fine. I took my time.
It’s hard to always do everything alone. I love him but it’s not enough for either of us. I sure wish he’d decide to still LIVE. We are both too young to go on like this. I’m not going to stop doing what I can because he won’t join in. Unless he’s tired and strained, his mind is good. He has what I think of as EPISODES of difficulty now, which is so much better than before. Praise god for that improvement. His taking Prozac has help ME more than I can say. I feel guilty for wanting MORE and I feel like he’s released our relationship except for the part of me that feeds him and cleans up.
99% of the time I manage by putting on my smile and thanking God and putting everything out of my mind. I can ‘busy work’ with the best. Still… sometimes I find myself kinda wishing I didn’t remember how we were. The dogs were all on his bed the other morning and I slid over so he could get in my bed, with me. Out of habit, he raised his arm and I moved against him and we laid like that for a couple of minutes then he rolled over saying his shoulder hurt. I got up and cried.
This message sat for several hours during which time I let myself get angry. He was complaining about our home and where it is, loudly, and I let him have it. I told him how I felt about US and ME and his own body not being enough to inspire him to walk and work on himself. I’m paying a lady to come in tomorrow and clean for me. She will add the shine to things I can’t manage; mostly dusting and floors.
Steve has and could, fold clothes for me and with me – He was getting his own coffee and putting his dishes into the sink and picking up his own trash, and he fed the dogs and washed their bowels. Now nothing. He won’t even put his peanut butter on bread. I feel eating out of the jar is gross. I know he’s weaker – he is back on his cane because he said his ankle was going to snap in two. He won’t take a Tylenol. Now he can’t walk well again. He moves only to the bathroom or between chairs – 8ft. I called boloney on his not being able. He doesn’t want to be able. He just wants it to go away and be over. I get that, oh God how I get that. He finished his trivia game online and hung his head for a bit then went off to bed at 5:30. I wish I’d of bit my tongue.
I so seldom get angry. I rarely verbalize it. Today I did and then I felt instantly bad. He didn’t do this on purpose. He didn’t have a stroke because he wanted to. I want to raise my voice to the sky and scream. Why did this happen? We were nice people trying to build our lives and finish raising our kids. We were lovers and friends and confidants – and now WHAT???? I am so tired of being alone. Some days I do it better than others… today wasn’t one of those days.
The people came and brought the saw and the rocking chair. They got here and Steve headed into the bedroom with his BLANKIE – his word. G and I drug this big old thing through the house and into the back room and set it on the rug so He could inspect it. I went in and told him to get up, come see your saw! And he said “NO I’m not interested.” I want to let my words run on because I’m so hurt from this morning, but I won’t and I’ll get over everything…but this morning… really hurt me.
The lady who brought the saw with her husband was really nice. She hugged me tight when I told her I’d take care of her grandma’s chair. These people didn’t want to sell their stuff. Just pushed against the wall like the rest of us.
Sigh… half the day is done. Next Tuesday I’m getting my brakes done, a tune up, and oil change and inspection. I’m taking care of business. I’m OK.
❤ ❤ ❤ ❤
He hates me and wants me dead again. He came at me with his cane and I took it from him. I am a big gal and have Martial Arts training for defense so I’m not afraid, but man, this is tough. He asked me how much we have left from the money from the house sale and I told him. He’s screaming, hitting walls and slamming doors. I can account for every penny spent and he’s screaming idiot at me. I have kept my cool and he’s back in front of the tv. When he came at me, I told him I’d call the police and I will… How can this be part of our lives? We were friends and lovers and parents and now we aren’t. Sigh… where to write and put this??? Only here.
Here’s the shame of things…hubby has to get mad to his core to help himself. He cried and yelled and carried on all night. Then he got up this morning, made his own coffee and carried it while holding his cane (not using it) clear into the living room – a good 20 feet!
He refused to let me help because I am now the same scum as the rest of my family, but the lines have been drawn that I will not allow to be crossed. I’d say we are doing better even though he’s still mad.
I swear…one thing after another. Now he wants to talk about a divorce. I won’t say a word. If he leaves. he can figure it out on his own. Every bit of this is on his damaged mind. I didn’t even answer him. I am having heart palps though and I know I need to go eat something. I try to keep quiet. Guess this is my time to bite my tongue. I don’t need I’m sorries. What I need to know is what kind of real damage he can do to our household besides kick me back to 1,020 dollar a month income and try to take my dogs. Just GROWL.
I was supposed to go camping this weekend with the church. I am so worried over leaving them all here without me. Our Son, Geoffrey, has Asperger’s and will stem from this behavior. Our pit will growl at Steve’s screaming and Steve will scream at him more. Before this fit throwing he said he wanted me to go, but how can I? I have to decide today preparation wise. I have food to make for myself and for Steve and G. I have packing to do and instructions to write out. I could just stomp my feet over all this ugliness.
I left Steve with our son and went to church today. I only made his coffee before leaving at 9:00. I got home at 1:30 and asked if he had gotten himself anything to eat. Of course he didn’t. He decided to wait for me to get home. I’m leaving him to go camping with the church in 3 weeks. I’m going to leave food them both, but if he only sticks a spoon in the peanut butter jar, that’s his fault, not mine! He can’t “carry” stuff. He could at the end of last year, but he’s regressed. He talks about when he’s better, but he doesn’t do things for himself that he COULD do. It’s frustrating. He could ask Geoffrey to help him, but he won’t do that either. I try not to do too much, but it seems I need to move back into living my life and if he chooses, he can come along, or I’ll have to leave him at home. He’s so welcome to come along… I can’t stop doing all things because he had a stroke. It’s closing in on 2 years …
Well, today he hates me again. He’s been screaming and accusing me of being cruel. I just am tired of butting heads. I am tired of being in charge always and him being in a dream world. I lost my cool when he raised my hand vac out of my reach and I said give me the ___ vacuum. Oh my – I’ve heard 3 hrs of how I have no right to even go to church and he has to work so hard to get there…blah blah. We have argued since yesterday and I am so exasperated. I do it every time – I start believing he’s ok in his thinking like he says – since he’s been ok for a month. Like a fool I have an expectation. I KNOW better. He’s not ok. None of this is ok.
I told everyone we are having work done on our house and the man doing it has become a real friend to us over the years. I had a little crush on him once upon a time – he’s a handsome man with curly hair, tall, and muscular…classic builder. The body is just a machine and gorgeous. I appreciate him coming so far for us. I’ve struggled the last few days – The contrast between him and Steve is so harsh. Used to be I could say Steve was the only man I ever felt really drawn to. Today, I feel so sad and overwhelmed to be stuck in a place emotionally where no need is ever met. I say it and there is no response. I am not lusting after the handyman even though he is eye candy. I am missing the relationship part of my marriage. It’s got me teary this morning… no intimacy and sexless at this age – at any age, is something I can’t dwell on. I have to push wanting it out of my mind. I could use a little prayer for me if you can spare it.
Steve’s gone back to bed today for the 3rd time. He’s not even trying to do anything for himself. I’ve let the cat out of her bedroom, and he won’t keep her off his food. He won’t put his fork down and push her off his lap. I got onto him about helping with her manners and he got upset and went back to bed. I feel like a witch. I have things to do and besides him and our son and his video game, I want to shake something. Time to turn on some music and shake ME! xx
I got up at 6 to the lovely sound of screaming and carrying on in the bathroom. An hour later, he did it again. I got up, made me coffee. At 8, he made his way into the living room with his blanket. He sat himself down and covered up – and ignored everything I tried to say. Silent treatment in force. I made his coffee, sat it next to him and left for the Lowe’s.
I got my paint! I love the colors. It was so expensive! It’s going to feel so good to have this house painted and in shape. I got home, checked my own oil. I came inside and told Steve I know he’s mad at me, but I’m mad too. He sits in that chair with a blanket constantly and has stopped doing everything but throwing fits. He hasn’t eaten since yesterday. I’m not cooking for him until he asks or the food that’s already made is eaten.
I know it sounds harsh, but I am not going to throw my life away waiting for him to do something he isn’t going to do. I’ve decided to volunteer at a local nursing home if they will have me. And I’m also going to join a pinochle group at the senior center. Something for me, and something to help others.
Yesterday he screamed that he hated me and wanted me dead. He won’t act on that, but he hurt me. This relationship is crumbling because he’s lazy and blames everyone but himself.
The last thing I’m going to do is get my teeth pulled and fixed. Then it will be a fixed income forever I guess. But our home will be good and I’ll be ok, and our son will be ok. I think I’m going to let go and see what happens. I’ve been stuck to his every breath for almost 2 yrs now, and he was gone from July before that. Everything I’ve focused on for 24 yrs, has been HIM. It’s got to change because it’s overwhelmed me. I can’t take things like they are anymore.
My Steve is fixated on an online trivia game and he’s so upset. He’s getting ready to cry and loose his words and he will be so embarrassed for our friend to see him like that. I told him he has control of this right now, stop pushing to that uncontrollable point, and he won’t. I swear I want to pull the plug on his computer – but I also feel consequences are important. How can we decide these things? I get upset instead of acting out of love, you know? I need to let go of the personal part I think and go sit with him and talk about it. Sorting out loud…. and with LOVE.
I’m not sure what’s happening this morning. Our Pastor came over to watch Football and give Steve some company last night. Steve talked at his loudest, highest pitched voice, grandiose, opinionated, and non-stop for 5 hours. It continued after Pastor left and has been going on since 6 this morning. I don’t prefer the silence, but the anger and intensity and the bragging – it’s hard. I just don’t know what to do besides to go forward with my “plan” for me, regardless. I’m not leaving the man, don’t get me wrong. I just don’t know what to do to manage myself during this stage – Everything is PROVE IT – TELL ME, Repeat things 3 times in perfect description – now he’s screaming at me again. I have to agree with him verbally or he pounds me with his words to make me say he’s right. Everything is prefaced with 3 examples and ‘I’m not wrong in thinking this.’
I understand that the belligerence is an aspect of the brain damage, but how do I, as a wife, give him context for how I react? I can’t. How can I explain to him that I am so alone and reacting so badly because I caved and used my ‘assistance device’ to be able to even face him another day? I have a girlfriend facing putting her post stroke, cancer ridden, seizing, dying husband with dementia into a SNF, who also has a boyfriend and is 10 yrs older than me. She keeps telling me how we can’t give up our own needs – and I try to give her support and keep that approach out of my mind. I believe he and I are ONE. That’s why we feel this so intensely because it is happening to US as a unit. WE are damaged and WE are in pain.
He’s practically out of control right this minute, with shaking his fist at the world – he’ll do EVERYTHING for HIMSELF and ___ the rest of the world. I don’t want his silence, I want his healing. Like Linda keeps reminding me, his brain is damaged. How are we gonna make it through this? One day at a time, one moment at a time…