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Hello everyone;

My User Name is LgSeaunier

First of all, thank you to the moderators for accepting me into the group.

 

My lover and I have been together for 47 years. We were about to move to our dream property and build a house there, when on Monday April 13, 2020 11:10am, Stroke rose its ugly head. We were at the Post Office. He fell and I rushed around the car to help him up. He looked up at me with scared eyes as I tried helping him off the ground, but his arms and legs were like cooked noodles. Fortunately, a stranger helped get him into the car and I drove to the hospital, taking wrong turns all along the way. ER took him inside and due to covid-19, I didn't see him again for two weeks (which was a new kind of hell). The image I saw over and over in my mind, was my lover piled in a wheelchair --- whipped ---. Finely, the day before he was discharged, the hospital staff “trained” me on how to take care of him. I say “trained” because the staff talked at me, not to me. They rushed through all the information and told me to come and pick him up the next day. When I walked onto the ward the next day, 5 minutes before discharge time, a nurse pointed my lover out to me. His clothing disheveled like they just threw him into them, and he was sitting in a wheel chair with his belongings in bags at his feet. The staff, in my opinion, couldn't wait to get him out of their hair. From then until I got him home, was all a blur. I was rushed so much, they really didn't explain anything, I didn't even know what really happened with the stroke!! Why did his right side not work right? A weak later I found out the right side was the effected side, I didn't know what that meant. Over the next five months, Physical, Occupational and Speech Therapies canceled all appointments and told us not to come back. My lover has gotten belligerent and angry on the most unexpected things. He has hit me and at one point socked me in the left eye. Anything I say is always the opposite, including what color the sky is. I am physically ill from all of this. I love the man but he hits me!!! He never did that in 47 years, not even in fun. I'm always 30 seconds too slow on everything anymore. That includes bodily functions, yes folks, I can't even poop fast enough (not sure I should post that, but it's true). He will not let me have any time for myself. Most days working 10 to 12 hour days, but a couple of days he insisted on 15 and 18 hours at a stretch. According to him, I never need a break or any time for myself. After all, “you have me!” If I take a breather, he whines about it until I tell him “I'm sorry, I was wrong.” He demands that he always be with me, no matter what I say about it. When I stay in the car to try and have a break, he demands to stay there with me until I decide I can't stand him bugging me with questions of “what are you doing” and “let me see that.” Me time gets over really quickly when you can't stand your lovers' voice whining at you. I have told him “I'm sorry we're not joined at the hip”. That made him sock me in the chest. I'm 62 he's 73 and he calls me Daddy. I tried going through the training to get paid for being his Care Giver, but working 10 to 12 hours a day and not able to get everything done, I'm over extended and exhausted as it is. I hate going to doctors. Every time I do, they find something else wrong with him. So far he has Stroke, Aphasia, chronic dry eye, neuropathy in legs-arms-hands and feet. To top it all off - - - he has Endocrine Carcinoma – Cancer (I hope that's spelled right) which is why he is currently wearing my pants. I'm blown away when I think about him being 296lb five months ago and today he weighs 145lb. There's much, much more, but you get the issues I'm living with. I know what should happen, but I don't have the strength. I have a detailed plan on how to get out but I doubt I'll use it. After all, I love the man.

Did I mention I have two heart attacks under my belt and I'm Disabled too? No? Well, it's true. We make a heck of a couple. He with a walker and me with a cane, what a sight.

 

Well, that's my story. I'm open to anything as long as it isn't mean spirited.

Thank you for reading

 

“Hey Daddy, do we need our pickles?”

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Hi LG, I hope it's OK to shorten your name. It sounds like you are on the rough road. I'm a strokee not a care giver So I'm not sure if my point of view is going to help you, but I'm going to try.  I suspect a lot of the neediness and violence is a function of frustration on his part. Neither of you got the care you needed at the start of this journey.  A lot of effective stroke recovery is about early intervention and persistence. The trick now is going to be to draw a line in the sand and try to find a way to start again.  One thing you will need to discuss with him is that violence is not OK no matter how much he hates his current life and situation. But also be aware that sometimes brain damage affects our control over our emotions and reactions as much as it affects our control over our bodies. He can relearn like he relearned to walk, but it will take time and work on both your parts. You should probably get both of you into counseling as soon as possible, and it may also help to talk to your doctor about depression medication for you both. 

 

My reaction to the stroke was very much a determination to be independent again. So I was very stubborn and pushed people away while he seems to be going the other way.  It will be hard but you might need to do the tough love thing and make him look after himself more.  The more we try to do for ourselves the more we can do, I certainly did and still do make amazing messes when things go wrong, a full yoghurt tub on the kitchen floor is not unheard of when trying to remove a foil seal.  But I have learned to laugh (better than crying) rather than react with violence and my family are very good at the let her do it herself unless/until she asks for help no matter how much they hate to watch me struggle with simple things like buttering bread.

 

One of the big things you will hear here is "Care for the carer comes first"  You have to take more time for yourself and your health. The sooner you can arrange for an outside support person to help you both, the sooner your relationship can start to go back to lovers and mutual care. Part of the problem is probably that the power balance in your relationship has been thrown off.  He feels lost, dependent and helpless, and is probably scared that you will leave. So he reacts irrationally and tries to push you away.

 

I will say that it is OK to leave if that is what you really want/need to do. However you came here looking for help so I'm guessing you actually want to stay. However he may never be the person he was before the stroke. and your relationship may never get back to what it was.  This is a hard and long road, if you chose to walk it do it with your eyes open.

 

One other thing we often say here is that life post stroke is different to life pre stroke for the whole family, not just the strokee. Not necessarily worse or better but certainly different.

HUGS

-Heather

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Oh LG...that's tough.

Your great love for him is amazing. 

Thanks for sharing your journey. 

I agree with Heather.  Tough love coming up!

💚👑

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Thank you for your kind and encouraging words. And yes, it's OK to call me LG. These are the first words of encouragement that has been spoken to me. It's nice to not be ignored. Thank you 

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Heather &GreenQueen;

I took the first step based on your advice. I "drew a line in the sand" today. He ranted for 5 hours about it. He wanted to leave me for good and have me put in jail, among many other things. All for not wavering on him tending to himself in the bathroom. I'm proud of myself  for not caving in this time. 😀 thank you Heather & GreenQueen for giving me the strength. Through this "journey" I'm really in need of encouragement and support. I'm so grateful I found and was accepted into this group. Thank you-thank you-thank you.

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I Must report in again. My lover pleasantly surprised me this morning. He wanted to practice his speech, so he took out the sentences given to us when we had therapies and read them very clearly. Then he started practicing calling me by my name rather than Daddy - - amazing - - I finely have hope for us again. He finely wants to try doing things for himself. And all it took was to draw a line in the sand. Thank you for helping me see beyond my own desperation and discouragement after 5 months of belligerence and anger. Perhaps now we can move forward to a new future. 

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That is great to read. Your whole experience has been moving. I would really like to share your introduction and situation with my wife and caregiver. You faced an exceptionally tough time. I gave my wife a hard time constantly and was so mean at times it made me cry when I was alone. So see you have already helped others here. We are *beep* at the world and anyone normal at 1st for awhile because we aren't anymore. We eventually realize that if we don't put our big boy pants on and do something for ourselves no one will. 

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Hi LG, So glad to hear that things are improving for you both. This thing is hard, but you are now heading in the right direction.  Drop in any time you feel the need for support. Janelle (GreenQueen) and I are in Australia so we often "cover the night shift" and are available at weird times. You are not alone in this struggle, reach out about any little things or big things. And remember there will be steps forward and steps back, so try not to be too discouraged when things go the "wrong way". It's about picking yourself up each morning and deciding to continue, I do hope both you and your lover are able to make that mental shift.  We can't go backwards to what was so we have to go forward, and we might as well make it as pleasant as we can.  Chose to be happy

All the best

-Heather

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So, I have a question for you, LG: What is going to happen to him if your own health issues worsen, and you are no longer able physically or mentally to take care of him? Does he have family who would step up to the plate? More likely, he will be placed in a nursing home.  Which is not necessarily a bad thing as long as the nursing home is a good one, and there are good ones out there, you just have to find them. Rely on word-of-mouth to find a good one .I would think that he would qualify for a Skilled Nursing Facility because of his cancer issues, and choose one that has therapists on staff, so that he can work on his own issues while there.  Ask if after health issues are cleared he can be transferred to a Behavioral Management Facility to work on his behavioral issues. This kind of facility is much more rare than nursing facilities, but they do exist. Who knows, there may be one nearby. I'm suggesting that if his hitting behavior continues that you consider placement, with the goal being to return him home once he has better control over his behavior.. But please don't try to do all of this by yourself. Try to find a neuropsychiatrist for him. A neuro-psych can evaluate him and help you decide what to do. They are specialists in treating behavioral problems caused by neurological problems. They are somewhat hard to find. Try looking for one in large metropolitan areas, or near universities or colleges. Good luck, LG, AND KEEP US IN THE LOOP AS TO HOW YA'LL ARE DOING.  BECKY. 

 

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LG, OK first.. I felt the emotion in your post.  I can't even imagine.

Covid-19 has really caused many health care workers to rate the patients. Is it fair NO but rather you get out and get sick. SO BACK TO YOU

 

Angry is sadly a something we all go through. In some form or another. I would get angry at my (ex) husband (( divorce not from stroke)) because in my way I wanted to give him an excuse to leave because I felt so bad about myself. Then it became jealously. I mean he got to leave.. yeah to go to work but he got to see people and in my mind he was talking to "normal" people.

 

You are not doing anything wrong. His stroke and recovery happened at a terrible time in our country and it's not YOUR FAULT.  Maybe you can join a Zoom ( because most places are doing it) stroke group and see if they have caregivers. You need to chat with folks who truly get it, not that we don't here, who may live closer. As times get safer, go out to get coffee. Maybe the two survivors can chat. 

I was angry for a long time . I was 34 when I had my stroke and there have been younger but when you see someone who can 'do" things... the green-eyed monster comes out.  But you know, and clearly from your words, and might tell him ;I'm doing this because I love you'. But don't forget not to let this encompass your life.His stroke was in April and the world is scary so it's still raw. The first year is generally the toughest to go through. Just know, things will get better. His brain and life got shaken up so he's ,understandably, upset.  He can and should do some things at home.  The more he does for him self  and learns new tricks, he'll see the world opening up to him.

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I tell him I'm doing it because I love him. He barks back NO YOU DON'T. I'll be posting something rather lengthy, but informative. Thank you ksmith for posting. I greatly appreciate each and every person who listens to me. Thank you all

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** WARNING ** ALERT ** this is quite lengthy and in your face near the end. Apologies for that.

 

Dear StrokeNetwork;

 

I am overwhelmed with all of you, more of that later. First things first however.

 

Heather; you were the first to post. That post I will refer to often, your idea of “draw a line in the sand” was the first I tried. I knew I could do that one and an outside person suggesting that, gave me the strength to not “cave” this time. Thank you for your encouraging words, they mean more than you know (you might understand how much later). Thank you also for helping me understand that little things and big things, are both important.

 

Janelle (GreenQueen); I can tell by your posts and your picture, you are a caring person and a fun person to know. Something on my point of view however, not yours. You may say “we got you” but please don't say we got your back. I've had people tell me that and they never did. Like I said, that's my thing not yours. Thank you for your support and kindness to me.

 

Willis: Your post move me the most. You saying “see you have already helped others” left me wobbly and weak. Keep reading and you'll understand why. And yes. You have my permission to talk to your wife and Caregiver about me. The more people that know, the more people will know that strokee abuse, or any abuse for that matter, is unacceptable behavior. I hope we may speak again in the future. Perhaps I could ask a few questions about things from your perspective. I'm always willing to learn other points of view. Education is always a good thing! Thank you for posting Willis.

 

Becky1; You made me cry as well. No one I've dealt with during these 5 months, ever once, had any concern for me. I asked them questions, and they told me to “go ask the appropriate people” and left the room. How does a person ask the appropriate people when you don't know WHO that is !! So thank you for your concern for me. Also, the advice you have, I will keep under advisement. I must tell you however, at this stage of this journey, if I were to hand him over to a facility - - I would run. There is a place I would much rather be, and that is in my intro letter. To answer if my lover has family that can help? No. Both parents are deceased and he is an only child. Fact is, other “relatives” did not tell him his father passed. He only heard when a lawyer sent him a letter six months after his fathers burial.

 

alansd; Thank you for those encouraging words. Being strong is the only way I can be at this point.

 

And now to me. My acquaintances know I don't talk about myself, but I must now, given the circumstance. I must confess, I never thought anyone would be interested in anything I would have to say in this group. The only reason I joined, was to have a place to vent. I never thought for an instant that anyone would read or care what I posted. And it didn't matter! I - - could - - vent ! And that alone would help me. yesterday I had an awakening that left me so wobbly and weak that I couldn't comprehend my surroundings. literally !! So far, I have four people who are actually listening to me and care for my well being. I've never had that before. I'm a hassle to my family and they don't call me anymore either. This is why I see this journey as a rotten cherry on top of the stale cake of life.

 

I hope I can remember everything here. Last night was a hell filed evening (I hope I can say it that way). It was later than he likes to stay up, usually in bed by 7:30 – 8:00 pm. My lover reverted backwards. He quickly became belligerent with spiteful hatred. He told me he never, every, ever, ever, loved me. He wanted OUT never to see me again and he wanted all his stuff not letting me even have what's mine. I never, ever do anything for him - - and then it got worse - - worse than it has ever been. He verbally ranted about how he didn't know who he was (not even his name) or who I was or where he was and on and on it went. He wanted out and I'd better not stop him! This went on for about two hours and I thought it best if I just let him get it out of him. I had my back turned to him, pretending to be reading, but I was shaking from head to toe with what he was rant-yelling at me (I'm getting upset just telling this tale, so I'll move on). After he calmed down, I told him I needed ME time, and he adamantly started up again. “YOU DON'T NEED IT!” After he went to sleep sitting in the car, I started shaking more and more. I tried my usual trick and started reading a book and looking at pictures of my hobby interests to distract the mind (one of these days, in my “spare” time, I'll post my interests in the appropriate string). But my mind was starting to play mind games again, and I tried calming myself and once more letting everything go (I perfected the technique). This worked again so I started reading. At midnight I started gathering things from the car, getting ready to take him inside, and to bed. I was so livid by the time we got to the bedroom, I started pleading with God. I've never done that before, after all - - he doesn't need to hear me complaining about my life - - others do that enough to take up his time. I pleaded with God throughout my nightly duties (I won't get into just what I demanded of Him). Then as I lay in bed, I asked Jesus to please calm me, I needed to sleep. Less than five minutes later my body calmed and I went to sleep a few minutes later. This morning, my lover started remembering things again and he remembered my name and where we were, though he still calls me Daddy. If memory issues persist, I will tell some “Quack” Doctor about it. What I'm about to say, in no way reflects on any Care Giver in the world. I have the utmost respect for all of you. In the entire medical field, if a person has a PHD somewhere in their name, they are all QUACKS !! give them webbed feet and they would sink like the Titanic ! I have felt like this since grade school and every time I go to one of those quacks they prove my theory each and every time. They wouldn't know how to quack properly even if a duck taught them how to do it ! - - - - - - Apologies, I started ranting, sorry about that.

 

Why don't I hand my lover over to a facility? Because, I must do everything beyond my power, to do everything humanly possible, to help him. That way, I have no regrets if the worst happens.

 

Thank you for reading the rather lengthy ramblings of an old, exhausted, and a rather desperate man. I'm contemplating whether I should give my name, what do you think, feedback is good.

 

I like ending things on a humorous note. A few weeks ago, my lover said something funny. I have no idea what it means and he didn't either. “Daddy, can we get two peanuts in the air?”

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Heather. I just reread your first post and I understand what you were saying. Though emotional to read, I realize that post stroke will never return to what once was. It's okay though, because I've learned through my life how to swing with life's changes. And believe me, they change all to often and much too quickly. That story of opening the seel on yogurt was it? Humorous, made me chuckle. Like you, I always try to find the funny side of things. Thank you for those kind and thoughtful words. 

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Hi LG, Whether you use your name or not is entirely up to you, this is the internet, so if you want to stay behind a use name that is also fine. It sounds like life has kicked you in the teeth a few times so do what is right for you, when its right for you.

 

Many of us also know about QUACKS and have met our share of them. We are dealing with a condition where the science is changing and even the good ones don't always keep up with what the current learning is. Add to that many people desperate to get back what they have lost and we are very vulnerable too.  If you have a look through this site you'll find quite a few references to "out there" treatments and therapies that people have considered or tried.  One thing you need to know, and I'm not excusing his behaviour, just explaining. The more tired we are the less well our brains work and the more we regress. So morning (rested) behaviour and ability will almost always be better than evening (tired) behaviour and ability. Also as our brains have to work harder to do everything so we tire very easily and from doing what used to be simple things.  Early on even being awake is tiring.

 

What he is doing is sounding more and more like stroke deficit rather than normal emotion. I think the suggestion of finding a Neurophych to do an assessment and help devise coping mechanisms and/or therapy/training is probably urgent. Even though you don't like quacks, this particular type of quack can be very helpful. Note that a Neuropsychiatrist is as different from a psychiatrist as a psychiatrist is from a psychologist.

 

Memory issues are quite common after stroke regardless of age, but there is also a stroke induced dementia that might be something you need to talk to the Doc about, Although if he's feeling/acting so belligerent it will be hard to tell what is stroke and what is something else.  Especially with the complications of his other health issues.

 

Do you have a way to assess his pain levels? Stroke can do some nasty things and neuropathic pain is likely to make even the nicest person snap.

 

Enough about him back to you. You story pains me so much I just want to reach across the world and hug you. This is so hard, and really you are doing an amazing job, even if, right now, he can't/won't see that.  I do hope one of the caregivers sees this thread and joins in soon. From memory a few of the regular care posters have dealt with this sort of behaviour and may be able to give you more relevant ideas than me.  Maybe a holiday for you, while he goes to a facility for a month or so isn't such a bad idea. I know you are scared that given the opportunity you will run and not come back. But you can't keep going with this level of violence both physical and verbal. Please at least look into an outside carer coming into your house even if it's just for a couple of afternoons a week so that you can go out.

 

Fingers and toes crossed you find a way through this mess.

Keep us posted

-Heather

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LG I just want to encourage you to give yourself a break. No caregiver can do 24 hours a day, 7 days a week indefinitely. Something will give and it will be your health. So what can you do? Employ a carer, someone with experience in dealing with difficult people, someone who can stand quietly and firmly reply to any of what you are going through. Even if it is only two or three hours, time that you have alone will give you a downtime emotionally.

 

Remember no-one is entitled to abuse you. NO-ONE. And just because you love them does not make that acceptable. So do "time out", step back a step and say something like: " Okay you have a point but I am not prepared to listen right now. I have work to do so I'll get back to you later." This is like making a space to step into. It worked for me and my husband so it is worth a try. I used to go out into the garden or into another room. You as a caregiver do have a lot to do so the excuse is genuine.

 

The "you don't love me if" is emotion blackmail so if you think he would understand that just tell him if not go back to the "hey this is not the you I know and love" kind of reply. There is also distraction and redirections. Find something he likes to do and offer that as a way of showing you care, favourite food if he gives you time to cook it, a game he likes to play, with Ray it was very simple board games. Redirection is putting on a favourite TV program, suggesting going on a drive, you will know his favourite things to do.

 

Sometimes it is hard to stop a verbal attack but if you see the signs of it coming stop it before it happens if you can. And remember NO-ONE is entitled to abuse you. NO-ONE. Even if you love them.

 

Hope this helps you defuse a very difficult situation. As the others said in so many different ways, we are here for you. That is what this site is all about

 

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Hey LG

You have some awesome responses there, lots to think about and maybe act on.

 

I get where you are coming from with  the "got your back" thing.  

Lots of people used to say to me they could get hit by a bus tomorrow...

Don't know about you, but I don't know any maniacal bus drivers ready to run over unsuspecting pedestrians for no reason!!

 

I haven't got your back...What I have got is empathy and compassion.  We all do. 

 

So very glad you have found us, and willing to talk / vent.

It's good for the soul.

💚👑 

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L G , What an incredible bunch of letters I've just read, everyone of you has an excellent ability to find the right words to express to explain the situation and in many cases offer helpful advice. Others ,like myself, cannot contribute to the conversation but need to add our sympathy. 

Like most of the other contributors I am the victim of a stroke rather than the carer but your letters made me quickly examine my attitude to see if I had been guilty of any of the attacks you have had to endure. 

Please keep us informed of your progress towards living a realistic life again. 

Deigh

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LG, I just want to make sure that you know I wasn't saying that you should place him now, even though there are some advantages to that

, But I meant(even if I didn't say it right) that you should consider placement if his hitting behavior continues. Because that can be very dangerous behavior for both of you. Placing him would be the only option you had to protect him from himself, and to protect you from his uncontrolled rage. Whereas, if you became incapacitated, and an uncaring relative were at the helm, he could be placed in the first home which had a bed, regardless of how appropriate it was.

 

 

 

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LG, the more and more I think about your post, we often forget what it's like to be back in the mind space of new stroke. I've been a little over 11 years but I have the blessing/curse of losing a lot of my earlier memories. (( that's a whole different conversation for another day))  and I can't even begin to understand what it must be like for someone who had his life, with his love and the way things were to be changed in an instant. For that, I can only share what it was like for me. I woke up in a new body and my body knew how to do things but my brain said NO and I lashed out. Rather rudely, as my grandmother use to say. But in all honesty, Sue had said it well. I was guilty of emotional blackmail for I was jealous and saw my life as over then and there. But over time with therapy  ( Cognitive Behavioral Therapy) and PT/OT, I was able to  see that yes life did get better. Was it like before.. NO but it was better than that moment. On a secondary note and truth:: When I came to chat groups, such as this and my local groups, I was so angry because nobody understood what I was going through * Coming from a survivor POV* and I didn't want to go therapy or anything for i can't do it now. Well..... what I learned was recovery is like a turtle walking through peanut butter. Slow and steady.

** from the family and caregiver POV I've observed** Because he knew how to do this before after a little hard work ,he'll be able to do it again. This was another thing that would cause me to lash out. OK  this is the best way I can explain this.. bare with me.. it's a dosey.

 

So imagine your brain is made up of pasta noddles , uncooked.  now if you would hold them in the middle upright. The top is his brain and bottom is to his body. If you squeeze the noddles so some break but remain in  your hands. OK

His brain knows what to do but the information is trying to go to the bottom of the pasta towards his body. Well, those avenues are now broken and out-of-service. He has to follow thew pathway to find a new route. This may take time. It may be easy for you to figure out a new pathway but it isn't clear to him and that is frustrating.  He's trying to figure it out and you (( again not you per say but most caregivers and families I've talked too)) get impatient and say I'll do it. Well over time, why should he do it because he knows he  can't do it and will make you do it.

 

I think that you are such a wonderful partner 💞 Keep up the good work and stay positive

 

Down below is Sue's important statement ::

 

 

image.png

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I would like to thank all who has given feedback and thoughtful ideas to help my situation. I am overwhelmed that there are others who understand and actually want to listen to me. Saying nothing about caring about my well being. I lay quietly in bed when my lover is asleep, and cry about it. Thank you all 

 

L.G.S.

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Oh Deigh; I must respond to you. You reevaluated your own behavior because of the things I'm going through - - WOW - - I can only respond by saying, if I can do that to just one person, then that makes what I have to endure worthwhile. Thank you for posting that, you brought tears to my eyes.

 

Posts like yours encourages me more than any other post could  thank you - thank you  - thank you 

L. G. S. 

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becky1

I know what you were saying and I did not take it like that at all. These are helpful thoughts. No need to worry about saying something the wrong way. If I don't understand how something is said, I will ask for clarification.

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Ksmith; Love the  uncooked pasta analogy. I have an odd understanding of the world and I understood what you said.  It's entirely sensible. Thank you for telling your story on my thread. 

LGS

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