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. ❤
omg…now I’m an enabler. I practice being kind and loving and letting my family come to their own decisions in their own time – and now I enable. There is no winning. I am so angry right now I can’t stand it. People take advantage of me knowing I am the support and lover through the darkness in their lives, and right now I want to tell them all to…. and I can’t say it.
Make your own oatmeal. Make your own sandwiches. Get your dog. Get a job. Go to f-ing bed. Get up when it’s daytime. Empty the trash. Wash your own grunge from the toilet. Clean your own side table. Open the door and come out of your room! Don’t tell me I said you could sit there or not come here for another year….don’t tell me I said you can sit in a chair and loose your legs. Stop blaming me and do what you should do. This means husband AND kids.
That handicapped sign is MINE not Steve’s. I push through so much f-ing back pain without a word to anyone. When I go down which I know is coming sooner because of caregiving, what will happen to us all? I could scream and there is no point. My son, my husband, my daughter, other people… what do I have stamped on my forehead? FOOL? NO. I do not. I am kind giving and I love selfish, taking, using people.
It is YOUR place to be responsible for yourself. You know darn well you are using me. Stop it! Just because I love you doesn’t mean you get to sit there and whine how you CAN’T and leave me to clean your mess. I live here too so I clean it up – all of it because I can’t stand it while you grieve your trash.
Enabler… F* that. Wives and mothers and carers are all enablers I guess. Just growl… If I did what I wanted, I’d have a home of my own that no one cried about hating day in and day out. I’d not have anyone here but my dogs. I’d see my grandkids and not have to be bombarded with negative chatter all day. I’d have my table in the dining room and a desk for the computer. I’d have an attic with only christmas ornaments in it. I’d rent a room to someone to help me be able to take care of MY needs. I wouldn’t have to fight someone constantly to get up and walk around.
I’d go walk into the yarn store. I’d take a class. I’d play my guitar. I wouldn’t have a tv on 24/7. I wouldn’t have a tv at all or a cable bill. I would be making payments on a car that I like instead of one easy for someone else to get into. I want to sing with my music and have someone love me enough to come to me for a change. I want to sleep in the dark.
I’ve given my whole life to other people who call me selfish, who close doors in my face and say the meanest things and I give it to GOD because it is my place to LOVE.
Enabler… I feel like Jesus when he threw the money changers tables over… forgive … love… turn the other cheek. When is it my turn to be loved and valued? I am a wife. I am a mother. I am a grandmother. No one gives a hoot but ME. I get to be the poor grandma and I can see from pictures the little things I gather are not needed and too simple. I’m tired of having people blame me for their own sh**.
I go to my pen and to my knees and I will gently put ME away again. I want to sit outside and drum to my God until my hands are numb.