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Losthubby

After 2 years ..still many questions

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Hello,

   I’ve read many posts and you all are so strong I feel bad about posting and asking about what I’ve been through.

A little background on us, we are both fairly active, live on a working family cattle farm as a hobby, she had her job I had mine. She loved being outside, cut grass, weed eat. We traveled did a lot of things. 2 kids

my wife at age of 44 had a 6 cm blood clot in brain. She has never smoked or done drugs or any health issues at all. The day before took care of grass, at the pool and finished off the day watching skunks eating cat food on front porch. I have worked from home since 2004, don’t have to travel. On a Monday morning I came upstairs to get something and found her on floor of bedroom. She had 1 of the best neurologist in county working on her. 1 week in ICU, 6 weeks of in patient therapy. This was 6/6/16. We will be 19 years of marriage in April. After 3 months of blood tests, neurologists sat down and said had no idea why or how or where blood clot came from. The only thing that we know is it happened when she was sleeping. The last part to add, her neurology psychologist did 2 days of tests determined that the biggest parts of brain on the right side was logical thinking and reasoning. Some short term memory issues. Last March, out of the blue lost my job. Eventually found something but took a lot longer than expected. Lucky to still be working at home. Physically, her left arm is completely gone, no use or movement. Left leg some movement in left hip. A LOT of tone issues in left leg and ankle

  With that said, and not nearly as bad as others here have it. Before stroke, we were like to puzzle pieces that went together. Now, I don’t know what to think, or where to start. She keeps saying she wants her husband back, because I don’t treat her like I did before the stroke. Accused me of cheating on her ( no I did not ), thinks that I would constantly send emails out bad mouthing her, to friends. I can go on and on. She cries a LOT, most of the time, no idea why. Her mom has lived with us for the last 15 or 16 years and once in a while will come up to me and say I don’t know how you deal with her. Again I work from home I even ask..when did I do that, do I sneak out in middle of the night? And it’s now getting worse and it is wearing on me, and feeling completely overwhelmed. I have been seeing a shrink last few months. She is constantly taking shots and digs at me, complaining that i didn’t like a post she put on Facebook. She doesn’t believe anything I say, thinks her own 14 year old daughter doesn’t like her. The same daughter who volunteered to learn how to straight cath because we needed someone else to know how to besides me. I’m sure at the age of 12, most daughters would want to, but as she said, if I have to I have to.

 I can go on and on...but it’s wearing me down. I talk to her best friend all the time and keep her informed. I’m approaching my limit and frustrated. I’m thinking of marriage counseling, but the whole logical thinking and reasoning, will counseling be able to get through to her?

 I don’t get to exercise like I use to or spend much time at farm. The other thing that is frustrating is, outside of therapy, she does nothing at home to help herself. No exercising, just putting weight on left leg or anything to help herself. She sits, eats, watches soaps and hgtv. That’s it.

i’ve said a couple of things over last year or so, but no change. What direction do I need to go.

 Thanks 

 

 

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Hi losthubby, and welcome to the site.

 

I'm the survivor, have use of all my limbs, and can do most things except drive, so I really can't help.  I'm sure there are caregivers here that will advise you better than I ever could!

 

One thing I do know is that it's important for you, and your family to make time for yourselves.

 

:hug:

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10 hours ago, Losthubby said:

She cries a LOT, most of the time, no idea why.

Tis is a very common side-effect of stroke.  It is called Pseudobulbar Affect, PBA.  It is also referred to as Emotional Lability.  Click here to read about it. 

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Hi Susan,

   Right now, she doesn’t believe anything I tell her, believes I don’t like her. Nothing I say makes a difference or matters anymore. If it’s encouraging her or giving her ideas on how to do something on her own. She doesn’t make an attempt to help herself. This is bad, but she will only bath herself maybe once every 2 weeks or so. And ... she doesn’t smell good, but she gets *beep* off when we try to tell her things. She yells at her mom. We have a chair lift for the tub, not cheap. Shower chair for walk-in shower. We have tried to provide everything for her to help her, but won’t put in the effort to help herself. She only used the lift maybe twice, now collecting dust. It’s frustrating. Everyone knows she doesn’t put forth effort. Has given our daughter a complex over bathing. Daughter knows she smells, and when this started, daughter will shower every day even if she doesn’t leave the house.

  If my wife saw these posts, she would go through the roof. She thinks I’m bad mouthing her to others. She doesn’t understand I’m reaching out for help.

    Steve, thank you for posting that. Do you think at this point she would be...accepting to what a marriage counselor would say? She got mad and upset at the neuro psychologist when she got test results back and wouldn’t go back. I have test results locked up in fireproof lock box. I’m just lost and not sure where to turn to. I’m already seeing a shrink to help me....in some ways.

thank you for the notes and advice 

 

Jim

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5 hours ago, Losthubby said:

Do you think at this point she would be...accepting to what a marriage counselor would say? She got mad and upset at the neuro psychologist when she got test results back and wouldn’t go back. I have test results locked up in fireproof lock box. I’m just lost and not sure where to turn to. I’m already seeing a shrink to help me.

I think it's unlikely that a marriage counselor could help your situation.  That would probably exacerbate the problem.  It's your wife that needs help and not your marriage.  I understand that your marriage is suffering but the affects of her stroke is the problem.  You even said how good your marriage was BEFORE her stroke.  I think you should be commended for hanging in there with her.  Some spouses just leave after their loved one has had a stroke.  Stroke is an ugly thing and changes the personalities of many stroke survivors.  It's not uncommon for them to lose their motivation to do things on their own.  I'm thinking that you might want to go to a neuropsycholigist but without her present.  Explain to them everything that you have told us about her.  Maybe, they can tell you how to best deal with your wife.  Ask them if prescribing an anti-depressant might help her.  Actually, it sounds like you both could benefit from taking an anti-depressant.  Seriously! 

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Lost, What a lot of people don't realize is that a stroke can do more than affect the physical part of a survivor-it can also affect the survivor's personality. Whenever anything is very different about a person after having a stroke than it was before the stroke, you must consider that the stroke is the cause. It seems that this is probably true of your wife. So, when she makes these accusations, it's not her that's making them, but the stroke damage.  The stroke has messed up  her thinking processes just as it has affected her arm. If I were you, I'd make an appt. with the neuropsychologist who has already seen her, and discuss the situation with him. Neuropsychologists and neuropsychiatrists are experts at this kind of behavior. Traditional talk therapies, like marital therapy, doesn't work in situations like this because it doesn't address thought processes. And thought procsses are the problem. Good luck. Becky 

 

 

 

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Steve, that is something I haven’t thought of. We are both on meds already, I’m just holding on, but not sure what is helping her. I’ve begged her neurologist, general prac. For help, neurologists gave her something but...I don’t know. The other thing that is in the back of my head is, her mom has lived with us for the last 15 years, neither have any other place to go, makes me feel worse thinking about it, and I feel like a bad person for complaining because I know she has been through hell, but I’m miserable and unhappy also. Just torn on what I should, or need to do. Hope I’m making sense and not rambling. But me going to see the neuropsychologist might be an idea.  I have trouble sleeping at night worried, thinking, wondering. And I’m on sleep meds.

That is something that have talked to my psychiatrist about, to me, my future looks so bleak...that I don’t see a future with me in it or ever see myself happy again. I feel selfish complaining about how unhappy I am. Just a hot mess

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Hi Lost don't feel selfish about complaining. You need an outlet when things get bad, we all do. It can be so hard when you can't see the way out or even a few steps forward. asking for help is the first step and you are taking it! Well done.  It could easily be that everyone in the house is felling stressed and helpless and that won't be helping any of you. Stroke affects the whole household not just the survivor and none of you chose this.  Maybe talk to the psych about an interval of respite care for all of you, each one of you going somewhere different for a holiday from each other. maybe some inpatient rehab for your wife, where she can learn that looking after herself is possible and preferable.

 

Hang in there

Hugs

-Heather

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On 3/6/2018 at 11:38 AM, Losthubby said:

my future looks so bleak...that I don’t see a future with me in it or ever see myself happy again. I feel selfish complaining about how unhappy I am. Just a hot mess

I think most caregivers feel this for the first few years.  My stroke was in the brainstem.  It caused lots of serious permanent disabilities - quadriplegia, loss of speech, swallowing problems, short-term memory loss, incontinence and many more.  My disabilities affect my wife greatly but with time she has learned to cope.  She has accepted her bleak future but it did not happen overnight.  It takes years!  Each year there were improvements as she learned how to take care of and live her new lifestyle. 

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The whole situation is overwhelming. Here is something that I can’t figure out. I know being tired and fatigue are huge players in TBI  but ... I wonder though, is she doing her best to get better? I met with my psychologist on Tuesday and she brought up the point that she is so fixated on me, doesn’t do any of her exercises. Maybe this all comes back to her not accepting her “new her” and maybe I haven’t accepted the new her. Anyone know how I can accept it, assuming I haven’t? On Tuesday she brought up the analogy of on an airplane, and putting on the air mask before helping others. Sometimes I feel like she won’t let me. Frustration builds...

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I'm not a caregiver right now, but when I was in ninth grade, my dad had a horrible car accident.  He was in the Intensive Care Unit for an entire month before they felt it was safe to move him into a regular hospital room.  One of the problems he had was a concussion (a TBI).  My sister and I were too young to visit him in the hospital, but when he finally came home three months later, he was a different person.  We used to think of him as the "nice" parent (my mom was a yeller).  But after the accident, he would start yelling at us about all sorts of little things that seemed unimportant or even incorrect.  It was so hard; and no one explained to us that his head injury could change his personality so severely.

 

I realize now that we had to go through a period of mourning, because even though our dad was still alive (thank God!), the person we knew was no longer there.  It took months to adjust to this, and it wasn't easy or fun, though it might have been a little easier if someone had explained to us what was happening.  But we eventually found our way back into a relationship that worked.  Part of that was probably due to the fact that as my dad healed from physical things like broken bones and adjusted to other things like the idea that he had a bad heart (he passed out while he was driving, probably from a heart attack), he seemed to mellow out a little bit; not 100%, but closer to the person he used to be.  Also, we all had time to get used to each other and start finding ways to make our relationships work, which made us less impatient with each other.

 

I guess my point is that it sounds like you, your wife, and your family are all grieving this loss.  It's a hard place to be, but there is a light at the end of the tunnel.  Life won't be the way it's been in the past, but you'll find a new way to live that works for all of you.  I hope you'll keep hanging in there and trying everything you can to make it work, but in the meantime, be kind to yourself - you've suffered a tremendous loss, and your emotions need time and care to heal just like your body does when it's seriously injured.

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Coming to terms with stroke can take years-for both survivor and caregiver. It's not an easy thing to accept.  And at 2 yrs. post, I wouldn't expect that both of you were accepting it. And if her thinking processes and logic were affected, she may have a difficult time ever acknowledging that she even had a stroke. My suggestion is to "let it go" for now. What's important right now is that she learns to function within the parameters of who she is now. Don't just swoop in and try to help her do something; let her find out for herself that she needs help. And let her ask for it. This may help her to realise that she needs help from time to time. Good luck, Becky

 

 

 

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Some of what I have read resonates with me. My stroke affected my psychological health dramatically. I became paranoid, blaming, untrusting, worried that my fiance at the time was going to leave me, cheat on me, lie to me, and more. Honestly I would get so upset and in some way I knew my thought process was just not right but it felt so real. I couldn't control how I felt or my reaction to my thoughts. In some way I was terrified of being left alone one day that everyone would leave. I had uncontrollable panic attacks, uncontrollable anxiety, depression, of course there were times when couldn't and didn't work as hard as I could to get better. That day changed my life forever. Some things got better and others did not. I thought therapies were to fix me. Make me who I was before...I still struggle with the fact that I can't fix me all the way. My savior was a Dr. My psychiatrist, he is determined to not give up and to help me as much as he can. He is not afraid to treat me...ask many stroke survivors and they understand. I am so much better now. (Regardless to say I am no longer with my ex and he did cheat on me...I know that all the times I accused him that my brain was not working right.) I know how much my behavior stressed him. I needed help and I wasn't ok to get it myself. Don't get me wrong I fully place the blame of his infidelity on him and I left. All I can say is thank God for my Dr. Thank God.

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Hi Losthubby

 

First of all, it sounds like you are going through hell.  You must be a really string and devoted person to keep going.

 

Standard disclaimer -- I'm not very touchy-feely (never have been, but the stroke has made it worse).  I feel hugely sympathetic and wish that I could make you feel better, but don't know how to tell you that.  So here does with the stuff that I can deal with (practical ideas): 

 

I've been very aware of my personality and mood changes over the past two years.  Nothing as dramatic as your wife's, but significant enough to make me feel really ashamed.  The fact that it's not your wife saying those things is probably no consolation, it must be really tough living with that.  But right now, she is not the same person.  I guess the biggest question is whether she will ever come back, and if not, what should you do?

 

The only real advice that I can offer (from the other side of the situation) is that you need to make time and space to look after yourself and your daughter.  Get out, visit friends, go for a walk, anything.  My wife has been amazing, but one of the things that she has insisted on from day one is that her life is HER life, not a subset of mine, and that it has to stay like that for her to be able to function.  Initially she would spend a lot of time with me, but also spent a lot of time with friends so that she could keep going (her work was amazing and gave her three months off to deal with the situation).

 

If you don't look after yourself, you won't be able to help her.  The same applies to your daughter and mother-in-law.

 

So get out (maybe in shifts, maybe all together).  Try to get her out too -- being cooped up cannot do her mental state a whole lot of good -- maybe just walk her around the farm in a wheelchair, or take her on outings to the nearest town.  Get paid help (housekeeping, looking after your wife to give you a break, help with the farm management)

 

Obviously, some stuff depends on the person.   I've always been pretty self-sufficient, so my wife started to force me to do stuff for myself while I was in hospital, like giving myself Fragmin injections or walking unaided (but with someone hovering nearby).  It was very uncomfortable (physically as well as emotionally); once I was able to cope with those, she added new challenges.  It's still tough (I've just done my company's year-end books for the first time since my stroke, took about 6 weeks to reconcile and get it ready for my accountant instead of two days).

 

And now that you have found this forum, use it shamelessly.  Initially, I would read it daily as a way of keeping going.  I still lurk a lot, and find that just listening in on others' conversations helps me over the bad patches that always crop up, or give me things to cheer about and take vicarious pleasure in their achievements.  Steve deserves a medal (several medals) for what he has done here.

 

Sorry to be prescriptive; that's just me.  We're with you on this.

 

      paul

 

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On ‎3‎/‎4‎/‎2018 at 11:33 PM, Losthubby said:

 She keeps saying she wants her husband back, because I don’t treat her like I did before the stroke. Accused me of cheating on her ( no I did not ), thinks that I would constantly send emails out bad mouthing her, to friends. I can go on and on. She cries a LOT, most of the time, no idea why. Her mom has lived with us for the last 15 or 16 years and once in a while will come up to me and say I don’t know how you deal with her. Again I work from home I even ask..when did I do that, do I sneak out in middle of the night? And it’s now getting worse and it is wearing on me, and feeling completely overwhelmed. I have been seeing a shrink last few months. She is constantly taking shots and digs at me, complaining that i didn’t like a post she put on Facebook. She doesn’t believe anything I say, thinks her own 14 year old daughter doesn’t like her. The same daughter who volunteered to learn how to straight cath because we needed someone else to know how to besides me. I’m sure at the age of 12, most daughters would want to, but as she said, if I have to I have to.

 

 

I said much of the same things as your wife and that to ran down my husband. We ended up getting a divorce 6 years after my stroke but NOT because of the stroke. I often felt like I was a disappointment for him or afraid because of I was unable to be the wife I once was, I accused him of the same.  She truly doesn't feel that way .  She's scared because now she isn't the same, you'll leave. My therapist told me, " your husband wouldn't be here if he didn't love you". That was what I was afraid of. She isn't happy with what happened to her and doesn't fully understand how stressful it is for everyone else. I know I didn't. 

 

Cries alot

 

Yes I still cry easily. Emotional liability https://en.wikipedia.org/wiki/Pseudobulbar_affect  basically means she may not have control of her emotions.  Also, she may just be upset. I mean no one envisions themselves changed for ever. That's a huge pill to swallow. I know It's hard. It's hard to understand what is right and wrong .  I  hope things have gotten better since 2016 :smile:

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Hi Lost.  When I read your story it’s like a mirror image.  My husband had a massive stroke at age 58.  Nobody could figure why.  We were packing up to go meet a new grandchild when he went down. I’m an RN and it took me a few minutes to figure out what was happening. Fortunately he regained almost everything physically except for a limp and no use of left hand and decreased range of motion of left arm. But the personality change!  Going from a guy who always thought of others first to a complete narcissist.  Irritable most of the time.  I call him Walter because he reminds me of Jeff Dunham’s crabby dummy.  He looks like my husband but has a totally different personality.  He also developed epilepsy from the stroke so it’s not like I can go anywhere - I’m afraid to leave him alone.  Will it ever get better?  I don’t know but I do understand what you are going through.  Hang in there.  

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My apologies before my comment. It is very very common that a stroke survivor gets sorta stuck on their own issues and is less likely to notice others issues around them. I am not saying at all that it is ok just that it's common...stroke deficits for many survivors is IN THEIR FACE (Like A SLAP) a lot of the day and everyday. It also was/is the single most destructive and life changing event in many lives...survivors and loved ones. It is our knowledge how truly lucky we are that we lived through it. For those that never find out the reason for their life threatening stroke brings fear, anger, frustration, constant worry because we don't know if at any moment this living hell might happen again. Many times the area of the brain is damaged that may control mood, personality, patience, a lot of cognitive issues and it's brain damage that the survivor can't fix or help. It can be destructive...especially to relationships. No one has the best answers for what is acceptable at times. I know for myself I live everyday with the effects of my stroke. It is unrelenting. My course of action is to try and do what I want even if it may be different than before. Gosh this is so hard! I get that just slapped feeling several times a day and I know it's made me obsessive about my issues.  Some people just can't deal with the aftermath of changes that happen after a stroke. The first person who wants to is those who have experienced one...to know they may not can better an affect for a long while if ever. This is not to downplay anything that a loved one/caretaker goes through. Talk about two sides of hell. I am so sorry that many of you have had to deal with such challenges. It really is not fair to anyone involved. Just giving a survivors perspective. God bless.

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Losthubby, I can relate to your story, and I'm very sorry for what your going thru with your wife.   My boyfriend has had several strokes, it's been a horrible year.  He can't or won't do anything for himself.  He hates me, lashes out with awful words, accusations,  hits, bit me, pulls my hair, he is a monster. A totally different person.  He sits and does nothing, would stay in bed all day if I let him.  Won't do any exercises, therapy was a waste of time he won't even go outside unless I force him kicking and screaming.  Threatens almost daily he will call the cops and have me arrested.  I'm struggling to wrap my head around this.  He has no family, so I am his only help.  I am to the end of my rope and am thinking about calling it quits but don't even know how to go about putting him somewhere.  I would hang in there if he would not be abusive BUT i cant stand it much longer.  I sleep with my bedroom door locked because im afraid of what he might do.  Strokes are horrible...

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Wow...please take care of yourself. You might need to ask at hospital to find options. Don't wait to long. Will be praying for you. 

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