Judy, that'sI what great about stroke net, you can come and "vent", and be understood!   Please don't feel bad about wanting to cry, I had a stroke and did cry. Better to get it out then keep it inside.  I never though about caregivers till I came on stroke net and saw what they went through.  Having a stroke effects everyone, but we who had  the stroke, we are so selfish that we just think of our self. Plus your husband like my self, we want to do what we always did before the stroke, it takes a while before we accept that we can not do what we could before Mr. Stroke some of us never accept it. 

I feel that you may had to put your foot down with Ray going to the shop, may be a talk with the doctor will help and hearing from  a medical doctor, that it is not safe for him to be in  the shop. That way you have no fear about  upsetting him and he having another stroke.

Remember Judy, you have to look after your self. Get your rest, try and get some fresh air, you need some me time.

You are both in my Prayers

Yvonne

Judy: coming from the other side, I find it remarkable that Ray still wants to do what he did before the stroke. For Bruce, yes he tried but just became too frustrated to want to continue. His work (I drove him twice a week. His boss was great and Bruce was OK with the computer, but he felt he was too slow and the math just wore him out) took months, stuff like chain saws, raking, ladders was just one attempt.

So, to you. Is there a neighborhood kid you could reach out to? Maybe come a couple of afternoons a week. I would also call the Shop Teacher at your local High School and the Troop Leader of your local Boy Scout troop. All these kids need community service for high school and badges. Other alternative is to talk to local mechanics to see if they have a kid who might like to help out and learn.

I do agree with Yvonne that you need to step back and tell him it is OK if he wants to go out to his shop but you are not going to do the work. You set him up on his work bench, get him safely seated and just stay close to monitor for safety. And you never know Judy, letting him work through his disabilities with just some minimum help with set up, he may flourish in his recovery when he succeeds. Could be a positive.

Go easy, honey. All of this is a learning process and just so singular to each of us.Thoughts and prayers, Debbie

Ray wanted to go under the house to his workshop in the beginning of his recovery from his 1999 strokes but he couldn't stand upright by himself.  I did bring things up to the verandah for him to do but in the end he knew he couldn't do any of it.  There is a limit to what you recover.

In your husband's case ask a friend to assess his safety or hire an OT to put him through the paces.  You don't need to be his apprentice, though I do often wish Ray could have taught me his handyman skills.  Find maybe a retired man with similar interests who would put in an afternoon a week with him if you can.Your local seniors center might be a good place to start looking.

Sue.

It's a weird world we live in.   Trying to judge what we can safely help them accomplish and what is just an accident waiting to happen.   Whenever Bob is ANYWHERE, I am on point, and yes it is exhausting, - and these are places that are not filled with crap - but it all works out that way anyway.  

For instance, if I have him walk or stand, some well meaning person may come up and give him a hug, or lay their hand on his shoulder, and cause him to lose balance and fall.   They don't realize that he is like a circus guy on a tight rope, one little shrug this way or that and he falls off the wire!   So, I have him on a power chair, which causes people to call him 'come this way, trying to lead him thru the middle of a crowd of people and to the main entrance that has a 2" difference between the ground and where the drive starts (which they step over without thinking).    People don't get that he is blind on one side, and could run over people and that he has cognitive lag, which is kinda like driving drunk.    I go there the day before to scope out the place and look for all safety measures, but when we get there, they constantly stop him (which disorients him when trying to get inside to the location) and want to talk and call to him, the whole time I'm trying to lead him in the safe path I've already scoped out - he's not safe till he's at the destination and stopped!   

Anyway, point is, other people in the mix are just one more safety issue, in my eyes.    I don't really remember much about all of your hubby's problems, not sure you posted it all, so it makes it harder for me to visualize his problems and his abilities.   Mine basically can't do anything, but feed himself the food that I cut and put before him.   But, we have a good life, and laugh each day, oddly!    I don't look for what is wrong, but try to find and exact some piece of joy each day, trying to not let that day escape, before it's given me something good, no matter how small.   It might just be something funny we heard and had a little laugh over, or something on tv, or time spent together doing therapy, or me rubbing his back - he loves that, or us playing a simple game together... even if that is just me giving him a word to make a sentence with.

PS - you know I think part of the problem is so many people are riding scooters these days, and they really don't have the same kind of problem as a stroke surv does.   They think nothing of stopping them and talking to them in the store.   But take someone that is dependent on my cuing him to get him into the building safely, and keep stopping him and calling to him to come this way, (while I'm leading him the other way) and it is a real pain in my....uh... head.    I generally come off as an old shrew in these circumstances, because I don't give in and they think, "he could do more if she'd quit trying to control him" - because they don't live with him and really have no idea.

How come everytime I write a long blog it seems to disappear hahaha. This is the second time I wrote a long comment and when I clicked on add comment it went away.

when you go to re-write, wait.   There is an auto-save feature that will pop up if you wait on it.

I've also copied my test before hitting the button, just incase.    Not so much since I found out about auto save.     I am seeing it right now, on the bottom of this message I'm writing, there is a gray bar and it says VIEW AUTO SAVED CONTENT.   I'm surprised it is showing, since I replied since then.    Open a reply window and see if it will appear for you.

Thank you Sandy for the info. I will try to rewrite some of the things I had said earlier. I had addressed your questions about Rays situation. Rays deficits are he cannot walk unassisted and his left arm and hand are not functioning.  He can see on his right and left but only if he turns his head in those directions.  He is completely dependent on me and like your situation he can eat what I put in front of him.  This is still early in our journey so hopefully things will improve. One of my biggest complaints are is lack of motivation to exercise. He only does what the therapist have him do, but at home he mostly sleeps or lies or sits.  Also some of the people have mentioned for me to get help. We live up in the mountains and there are only 24 homes up here and most of the people work. There is not anyone who can help me at this time.  We have one young man who comes over a couple of times a month, but he has a part time job, goes to school and now has a girl friend.  I am sure things will work out. The past few days have been a little extra hard because due to bad weather I have had to do a lot of jobs outside that Ray would normally do. Like get gas for the generator, start the generator, clean up things around the outside that the high winds have caused damage to.  So many of the man things around the house are things I am learning to do.  I am a 72 year old woman and becoming the man of the house at this stage can be overwhelming.  All of the things I am writing this time are not what I had written earlier hahaha.  Anyway I really appreciate being able to come here and pour my heart out. You are all my family and I do depend on your words and caring. I will now try to post this

Another thing I wrote about earlier and lost is the fact that most people have no idea about a stroke. When they see Ray they say, oh he looks so good. But they don't see the broken parts inside. They see no blood, no bruises, no bandaids, not scars.  They don't see the inner turmoil.  They don't see the pain and the work.  That is why I love it here. Because you all do know what we all know and see. So thank you for being here for me as my stroke family. Love Judy

I know exactly what you mean, about what others don't see, I was just telling a friend about that tonight, after an excursion we had.    I need to write a blog or something, about it, rather than hijack here.    But we all know about the concept others have compared to what really is behind the scenes.

Ray sounds a lot like Bob in physical problems:

1. can walk with gait belt and spotting (no balance), affected leg

2. blind from nose and all the way right, can't scan, even when I'm telling him  to do it.

3. no bathroom controls

4. cognitive lag

5. sequencing problems

6. can usually follow a one line command, but not always

7. arm & hand don't work, but top of arm can lift from shoulder muscle

8. Bob has little initiative also.   I don't ask him, I just say, ok, now we are going to do some leg lifts, or whatever.   I don't give him the chance to say no, just do like the therapists and say we are doing it and proceed.

There is no one to help me either, but I'm one of the few that actually hates help, they just get in my way.   Every job is mine also, and I just try to think of it the same way women who become widows do.   This is my house and I will take care of it.   I am happy that I have my husband with me though, I enjoy making a home for him.    I would never have thought I could do all I do, I amaze me!  

I want to mention something else..... it's weird to others.   When people used to ask me how Bob was I'd say GREAT!  and that was actually a problem, because they all thought he was getting back to normal.    So, I kinda modify that now and say well, he has lots of problems, but we are getting along great!   or some such.    But for me.... for me, when I look at Bob, I don't see all he can't do, I just see Bob.    It helps that I was a home body, and some one who always waited on him hand and foot.    I think people who worked and had their own friends at their 'work life' have a feeling of being trapped.   I thank God I don't experience that.   I'm also happy for him that I always waited on him.    If he was used to always getting things from the kitchen himself, then every time I brought him something, he'd think, "I can't even get a drink for myself".   But the truth is, he's got 42 years of experience of me delivering things to him, and it all feels normal to him - so thankful for that!

PS - If you have the extra money, and your hubby uses diapers, guards, wipes, bedpads, start trying to build up a stock of them, so you don't run out and have to go out in a snow storm to get them.

What wonderful strong independent women you are and I wish I had you in my life seriously. I am a brain stem stroke survivor and that feels weird even writing that. what did I just admit to? Anyway stroke is the kindest sneakiest deadliest force because it is like a pick-pocket as it robs you and you are blissfully unaware of what has been taken.  It is a blessing and a curse.  I was in the hospital and there was an alarm on the bed so I wouldn't get up without help. I set it off all the time. I would just pop up as usual when I had to get to the bathroom and there was trouble. I do the same at home so I have a walker right there blocking the path at the bedside to help me not forget to use it and not fall. I am able to walk a bit on my own but not much but so much. I constantly overestimate what i can do. Perhaps a good therapy strategy since I am game for anything but I do get into trouble. It is a mixture of wanting and being unconsciously just doing what I always do. It is still weird to say I had a stroke. There is this strange acceptance it happened to me but then it is like it didn't happen to me and maybe I read about it for somehow it seems removed from me and then it doesn't and it is right here hitting me over the head. I cry then. So perhaps the disconnect is protective as I ease into this new situation. I am sleepy all the time on the meds it is side effects of things I take. I am also just worn out just sitting up and watching television. We take for granted all the things that the brain does when we are awake and doing stuff and that even sitting takes balance and muscles work so it can be exhausting when the brain is damaged and it is rewiring to heal and work better. It is exhausting for me just to look around when I am out in public because of the stroke and when I get home I am done in. For me a day outing requires a day resting. I am not depressed sleeping at all. I need the restorative sleep and physical rest. The brain in using other areas to help the damaged parts and the physical weakness I have on my right side makes it really a totally challenging day when I go out and do stuff, even the stuff I love doing,

You are so kind to assist him this way and I am sure he thinks he is going to be doing it all by himself sooner rather than later,  In time he will realize he isn't doing his old job at all. This hurts so deeply it is a horrible pain to acknowledge that an important piece of your life is gone. I cry and fight it many times. Perhaps it really helps him to go out there and be part of it all and I like the suggestions about getting him a really qualified assistant  somewhere.  he may be able to accomplish more out there with a qualified person who can do so much more which will make him happier and he may participate more out there in a project.

He is improving all the time and holding onto this piece of his life can help but it isn't working with you so let him choose someone who can do the real work he needs to get done. Why can't there be a restored car with him leading the project. That will boost his spirits and you can supervise his rest and meal stuff.

You need some help around the house so hire someone to come out and get you set up for winter is my suggestion. Do it guilt free. If you get it done right then you can do the other things easily. I am suggesting having some fire wood easily accessible and getting trees and bushes trimmed up and stuff cleared out so there is not outside clutter or fire hazard. This is a one time thing for now so perhaps there is some men from a church or an organization that may volunteer to do this. Then get things mail ordered or delivered on a schedule or some automatic pharm refils to free up your time doing that kind of stuff. If you are comfy in the kitchen then get help in the other areas guilt free.Have a plan for medical emergencies with your doctor and nearest hospital. I agree that stocking up on supplies is a smart thing to do. Get in touch with an in home health service agency for getting respite care so you can get out alone sometimes,

Of course you are angry in a big way over the disruption and fear that has overtaken your world. I would worry if you weren't. I am wondering if perhaps you get things prepared that maybe the anxiety and fear would lessen as you take control of these circumstances. Sometimes it is the little things and not the big things that cause the most trouble. remember the straw and be kind to yourself. You must because you are needed so you need self-care and self-compassion and real help in the house, If you get some start up help maybe that will be enough or maybe you can apply for some regular help as well. Google is my best friend for finding information so perhaps looking to see what agencies can help you I wonder if some are free or low cost,

You have it in you to continue this but anyone in your situation would require assistance so no shame in seeking as much help as possible and even think of it as for now because maybe in time he won't need so much. I hope you remember to get your sleep which is so important, and i hope that in the middle of this that there can be some fun and sense of humor restored as the stress of the other things is resolved. I am sure you want to protect him but perhaps he can feel useful if he is included in the decisions a bit or maybe he just wants to rest and sleep. It isn't lazy it is restorative and necessary for the brain to do work after a busy therapy day. The brain works when sleeping and it is an interesting topic to read about.

Betsy thank you for all of your thoughts and suggestions.  It is good hearing from a stroke survivor as none of the caregivers really know what is going on inside of  your heads. I will think strongly about getting someone to help, but thats a hard one for me. Actually not hard for me, but hard for Raymond to deal with.  Since we live so far up in the mountains its harder to have access to people who maybe could help.  I also think my husband is slightly embarrassed by the mess in his big buildings. There are tools, parts and things all over the place. He is sort of a hoarder and he is also a mess pot.  There is one man who does come over and helps with the restoration of the truck he was working on before his stroke, but he won't help Ray as far as walking with him or physically being there. He has his own physical issues and mostly is volunteering to help to give Ray more incentive. I could put Ray in a chair up in his shop while the man works, but Ray immediately wants to get up and help. That is what happened last time. So I am forced to stay up there and watch him and be the helper man.  Hahaha, I am a seamstress, not a machanic. And of course now that the cold weather has set in, and we got over an inch of snow two days ago. We now have ice outside, so even going up to the shop is a no no.

But I do hear all of the things you are saying.  And I will try harder to get more help for me.  And I will try and include him more in a safe way.  Thank you so much for all of the suggestions everyone. It helps more than you know. Its a busy day for me, but I wanted to respond to this last post.