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…
Last December, out of the blue, I got a text from a friend I’ve had since my oldest daughter was 3 months old. It shocked the heck out of me. My best friend in the world said this to me – she loved a man who had multiple strokes and didn’t marry him because he took too much effort. And then she said this to me without any conversation passing between us for 6 months! —————– Maybe it isn’t so bad, but here I am 9 months later and I have nothing to say to her. We loose things and relationships and our partners and then we have to figure out how to rebuild our lives, too. I’m struck by the “it’s not fair” fairy’s wand, way too often. I am not hateful or mean or uncaring. I have a blog. Most days it feels like I’ve lost everyone from my life.
If he’s fully aware of the day and knows the ____ day he should be grateful and shut up. Are you sure he doesn’t have PBA? It’s totally common after strokes….what isn’t common is all this drama! Sorry, I know 3 other people that have had back to back strokes -2 that live alone even and after a year 1 of them is back to work. the other gets disability but is recovering and even volunteers at his kids school, the third is still battling other health issues including a brain tumor. I would get him to the doctor to see if there isn’t some underlying issue and get him on an antidepressant! I personally wouldn’t want to be that miserable and be alive either. Don’t enable him Amber its really NOT better than being dead.
where did this come from? After talking to Kaiha?
I was told it’s not PBA.
it’s grief and depression.
We all made a “pact” not to talk about you. Actually been concerned about you for several months.. look PBA up online (uncontrollable crying laughing) it just seems like there is no desire to be any different.
you’re right – he has no desire to be any different except BETTER. He’s not even close to better and it is awful for him. He didn’t ask for this. I am far from enabling. If he had a place to go back in Atlanta, I’m sure he would go there but he’s stuck. I may put my feelings out too often, but except for a few people online, I feel pretty forgotten on my end. My kids don’t call and maybe it’s the stroke there too, but Steve’s not the monster they act like he is. You realize the hospital records say his temp was 84 degrees when they found him. There was no reason for him to even be alive and yet here he is. I try to tell him to be thankful for his life and people pop up with that opinion that no, this is not better than being dead. How dare you? It is better. He’s healthier now than he’s ever been but he has damage and it’s not the kind that is going to kill him, it just limits him. sometimes he’s clear and present in his mind, and sometimes especially when he’s upset, he’s not right. The mind directs it’s energy to the part that is hurting and it takes away from the other abilities. He also has to use and exercise every part of himself or he has to start over. His stroke was hemorrhagic and is the least common kind. I can’t explain it all, but add the depression which I couldn’t get the drs appt moved up to address – and it’s miserable all around.
We are in a new place, no friends except online, no support except online and I’m sorry you have to see it. But we aren’t going away.
I guess I just hear lots of justifications for inappropriate behaviors don’t want you to go away just want him to move forward so many MORE in worse shape than he is. Your right he IS alive and he shouldn’t be.
That’s me – justifying how people are so I can talk myself into keeping on in relationships that most would cut off.
I do it for everyone who treats me bad or ignores me when I love them. Kaiha’s been no peach this last year. And I’d even let Kayla and Kansas back in to abuse me if they asked. I’ve reached out to my mom and to Steve’s brother – all people who most would turn their back on. But not me… I justify so there is always a door to open. I am not trying to be negative, but it’s pretty lonely on my end except for a blurb or two on FB. I’m sorry to rant. It’s just a time where I’m trying my best to keep my head up and make it through another empty Christmas.
I hear your words they just are just the same ones every year. Your kids treat you bad, close the door! Drop Steve off on the doorstep of the old house and go back home, close the door! Choose life and happiness don’t put that family junk out there. Move forward alone because alone is not bad company! I need to stop for a bit I’m sorry I’m snapping at the girls and it’s not their thing.
it’s fine – enjoy your day.
And amber Christmas is just another day… don’t make it something it isn’t. You know I love you even though it doesn’t sound like it. I’m sorry I want you to feel the love and I’m attacking please forgive me. Sometimes silence from others simply means they have jobs and bigger local family obligations and expectations. Sweetie I think of you several times a day.
I know it is another day. There is no way to be alone and it be ok. You get that right? It’s the anniversary of Steve’s stroke and 7 yrs of unemployment. That didn’t touch you except through me. People are real good at the hit and run advice and then they disappear for months. And yes, you do it too. Things like long term care giving affect the whole circle of life. If people would check in sometimes so there was contact regularly, those of us stuck in situations would be able to shake off the aloneness . I can’t even see to read this right now. I’m crying and can’t read. No, I don’t know I’m thought of several times a day. What I get is that people are uncomfortable because I talk about the daily struggle. I guess you can click unfollow and not see it. I also don’t mean to attack – but man. FB is all I have for support. I fight feeling like I should deactivate it every day because it’s too hard for those looking in.
Start a blog Amber ppl can go read when they are mentally prepared Facebook throws it in our face! I don’t open it everyday to see your struggle sometimes I need the strength to move on!
Do you know how that sounds?
I know you don’t read my stuff – just click the unfollow button.
I won’t be doing that.
then understand I am doing the best I can and you are gonna see my guts spill from time to time. I don’t get to mentally prepare either.
Well that sounds vindictive I’m suffering so somebody else needs to suffer.
really? Go have your Holiday Lisa. I’m not being vindictive because you are uncomfortable. You can choose to see what I say or not see it. How is that vindictive? You can pop in when you feel like it. Unfollowing doesn’t mean we aren’t friends. Do what you are comfortable with. I have to live this daily and FB is where my support is. Why would you even think of taking that from me?
Think about how hateful you are becoming, I wouldn’t take anything from you Amber.
I think you should read today’s exchange Lisa. Surely you don’t mean how this has come across either.
Probably not but I don’t feel like I know who you are anymore, it seems you “like” being a victim I thought you were getting past all that.
this conversation is done. I don’t owe you justification for anything. Just unfollow me. That’s your simple answer.
I won’t love you any less – and I do love you.
Never said you did. I thought it was honesty and concern for you, sorry for upsetting you more.
I have all these words inside about this and mostly I hold them back. You see so little of them because I don’t say them.No one wants to hear them. I just over reacted to love and concern stated in a way that hit my raw nerves.
Sometimes I wonder if anyone ever survived a stroke gracefully? 2 yrs, 3 yrs, 5 yrs, 7, 10….do all friends think we are selfish and dramatic and hateful and vindictive? Is it our plight to suffer in silence so we don’t inflict our lives on others? I guess I was kind of missing having a friend this morning and ran across THIS just as I was almost going to reach out.
And then my neighbor called me. She wanted to check on us. I think it’s important to keep our perspective straight even after being broadsided. Which happens a lot.
Giving, loving, serving, staying thankful and praising our God. Or sending out love to our fellow man if we aren’t Christian in whatever way we do – I really think it’s the only way we will be ok in the end. Plus, if I ever have to deal with the loss of my own mind, I want kindness and joy to be what’s left of me. ❤
I decided to take this off of the reply thread I was responding to because it became too long. Before the stroke, we worked, we watched tv, we grocery shopped together – we played trivia, we hung out. I knitted while he watched sports. What did you do that you still do?
I get the nightmare part about this whole thing. From the time I was a kid though, life has been hard. I’ve always had to look for ways to cope.
My gramma used to tell me life is about balance. I clung to that all the years my kids were growing up. 1 was depressed. 2 were ADHD/bipolar, one had anxiety disorder, one has Asperger’s. I have 6 kids… It was my job to hold balance. — and now they are grown.
Kids growing up happens faster than you can believe. It’s the same with every day of our lives, isn’t it? We can’t change what has happened, only how we react to it. I used to tell my kids there may be bad moments, but never bad days. My husband would get so mad at me for being positive. He said he was gonna put “Pollyanna” on my headstone. I used to laugh and say go ahead. I still feel that way. “I am and always will be the optimist – the hoper of far-flung hopes – the dreamer of improbable dreams.”
Find a method to the madness. (It’s why I like Doctor Who so much. He is a hero with a screw driver, two hearts, older than our universe, able to be male or female, a time lord. lol he’s a madman with a box!)
Don’t beat yourself up!!!!!
Start every day saying thank you. Allow yourself permission to say no, to not do a chore, to let some dust settle. Delegate as much as you can. Make eye contact with your husband. Keep a blessing jar. Write down the good stuff. Don’t take phone calls; screen them so you only talk to who you choose. Stop apologizing. There are things we can see one day that we can’t see during another so change your plans when necessary. Pace yourself. Use pie plates to serve dinner in (they hold paper plates, collect crumbs and sit on laps well). Simplify everything. Play music. Collect mantras. Keep index cards with inspiration on them – from songs, to sayings, to scriptures, to recipes, Make notes about things that work. Share ideas. Keep a book in the bathroom. OR tape an inspirational poster to the back of the bathroom door so you can read it when you sit.
Find something for your hands to do when you are sitting. I knit. Tarsha colored and did her school work. Someone else might do a different craft. If you can’t craft, set up a card table with a jigsaw puzzle on it. It will make a difference. Carry a worry stone – whatever it turns into, stress releases through our fingers.
If something seems too hard, break it down into parts and see what you can change.
Always begin when you remember. ❤