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Guest patannee

At the end of the rope

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Guest patannee

Don't know what, if anything anyone can do for me, but I am so depressed that it frightens me.

 

My husband had 2 strokes, 8 months apart 6 years ago. Physically he is in good shape. Mentally and emotionally, he is a trip. I love him and know his frustration has to be emence, but I cannot care for him without a change. His personality has changed completely and I don't know who he is.

 

He is hyperactive and childlike. He has horrible tantrums if he can't do whatever he wants. He thinks he knows everything and does very distructive things. He took steel wool and paste wax and waxed the van. It completely destroyed the body and it is considered totaled. Of course, insurance does not cover this. I had to have a new windshield installed before it could be driven. I can't leave for an hour without him doing something destructive, thinking his work is incredibly valuable. He brought a grease gun in our new home, removed the pins, took off the doors, and greased the hinges. Couldn't get the doors back on, so when I get home, it's a mess. Grease all over everything, floors, walls and doors, chips everywhere where he used a hammer to remove pins, etc.

 

When he starts to do something that I know is destructive (and he thinks is a very valuable project) and I object or say no, he has horrible tantrums. So far, he has not been physical, but the tantrum is intollerable.

 

He did so much damage to my daughters home that he is no longer welcome there and he has also invaded our neighbors yards and trimmed and sprayed their citrus trees, telling them that he saved them and they would die without his intervention. Naturally, our neighbors have had it with him.

 

Is anyone else dealing with this behaviour? Is there a medication that can be recommended? HELP!!! Thank you and God bless everyone who is a stroke victim or caregiver.

 

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Patannee,

 

I wouldn't want to imagine being a man and having this happen to me. I have always worked and been financially independent. I recall lasting a month as a stay at home mom because I did not like the feeling that I was not productive. It sounds as though your husband is trying to do things to be useful not destructive. He may not realize what he is doing is as disastrous as it is, and his anger may be out of frustration.

 

Have he seen a neuropsychiatrist? They are trained to deal with issues brought about by stroke. The impact of having your life ripped out from under you in the blink of an eye was traumatizing to both of you I'm sure, as well as the aftereffects of dealing with the fallout for 6 years. You probably both would benefit greatly from counseling. Good luck, keep us posted on how you make out, and remember we are always here to help 24/7.

 

Maria :friends:

 

 

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Hi patannee,

 

I firmly agree with Maria's suggestions dealing with a neuropsychiatrist and counseling. Stroke has pulled the carpet out from under him and you are experiencing his anger and frustrations. Unfortunately we strike out at those we love as we feel most safe around them. I'm a single Mom (my daughter is 15). When I have my "moments" she wants to head for the hills. Fortunately, for her and I both, my moods have not been like those of your hubby's. Can his meds be causing his added frustrations? Have you spoken to his doctor? General membership here are not experts but can share our experiences.

 

It is also important for you to have your own outlets/relief from caregiving so you don't burn out. Please keep us posted on how things are going for the both of you.

 

Another suggestion is to guide his "healthy" involvement in what he likes to do/can do safely for all concerned.

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Hi Patanee,

 

I'm glad you found us and posted. There certainly is medication available to help with the issues you are talking about. You will need to find a neuropsychiatrist (preferably) or a psychiatrist to evaluate your husband's behavior. You will probably need to go with him or talk with the psychiatrist prior to your husband's evaluation. You know the behaviors aren't rational, normal or even particularly safe for you and/or the family. I hope it isn't a matter of time before his tantrums take a turn for violence, but for both your sakes you should make it a point to schedule an appointment for an evaluation sooner rather than later.

 

To be real honest I'm familiar with bipolar affective disorder and his antics sound very familiar. The doctor will know how to best handle the tantrums. Good luck to you and come back often.

 

Warmly,

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Dear Patanee: I also feel for you and all you have been going through. I totally agree with the prior posts of seeking psychiatric (neuropsycholist definitely preferred) as soon as possible. I know there are meds which help a lot of the behaviors your husband has exhibited; however, it will take an expert in the field to know what is best.

 

I also agree that you need your own support and/or therapist to keep your sanity. I am the survivor and have come a long way since coming home from the hospital Aug 06. My husband had to deal with a lot, but nothing like you are describing. I will pray for you and your husband and hope you will be able to get help...the sooner the better.

 

It is also better for a doctor to make decisions for you if things get worse..or not better.

Leah

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patanee,

 

i agree that medical intervention is necessary and needed right away to help with your husband's actions. there could be a number of reasons why he is acting erratically. be sure you have a place to turn to as well. as a survivor, i have my moments they but have not been extreme. i've kept a diary of my own so that has helped. www.strengthforcaring.com is a helpful site with information for caregivers. all the best to you and keep us posted!

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I can understand what you are going through to a degree. My husband's behavior has become very odd of late too. However, he has not been destructive like your husband. It just seems like he is having a recurring case of anosognosia but to a milder degree than right after the stroke. That means that even though he knows he can not do the things he used to do, he still thinks he can and insists that he is perfectly able to drive the car, ride the motorcycle etc. and get very angry when we tell him he can't. We need to hide things from him so that he will not hurt himself or anything else. Anyway, I agree with what everyone has been saying so far. Your husband needs to talk to someone who understands how to make him understand that what he is trying to do with good intentions is just not working and that tantrums are not appropriate behavior. Also, as they said, you need to have an outlet for yourself and that's very, very important. Care giving is such a difficult job and you really need some relief. Is there a nursing service that can sit with him so you can get out once in a while? Perhaps there is a day care center that you can take him to so that you can have a day off without worrying about your home. Perhaps someone from your church is qualified to help you or have your kids cime to your home rather than taking him to theirs. He is, after all, their dad and just a s much their responsibility as yours. Also, your health and well-being should be important to them and they should be willing to help if they are watching him in your home instead of theirs. Please keep us posted on how things come out for you.

 

Betty Jean

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]patanee,

i can only add a welcome to the site and say that the advice in the previous posts is excellent. while helping your husband find the right meds i hope you will be able to find a way to give yourself needed respite.kathy

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I'M SORRY WITH WHAT YOU'RE GOING THROUGH. I'M SURE YOUR HUSBAND IN HIS OWN MIND THINKS HE'S DOING WHAT'S BEST AND IS TRYING TO BE HELPFUL. I AGREE WITH THE OTHERS. HE'S THE ONE NEEDING HELP RIGHT NOW. GOOD LUCK AND GOD BLESS. :friends:

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I have no advice I just wanted to wish you and your family the best of luck in finding the help you need. Hugs and best wishes. Diana

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Guest patannee

Hi, Things are getting better. My husband has been under the care of a specialist sense the strokes because he has been suicidal and depressed. They made a diagnosis of vascular dementia and ordered a new drug. He is now sleeping all night, which means I am getting sleep too. What a relief!!! I can deal with things so much easier now that I am rested. He has had issues with sundowners off and on and it was really severe lately. The medication, which is an anti psychotic, also has calmed him somewhat. He still thinks he can do everything and is seeing things that are not there, but is much more calm when I try to explain things to him. I am not cruel, as a matter of fact the doctor said I should be firmer, but he was such a wonderful man with many gifts and skills and I just try so hard not to "put him down".

 

Another thing that is so hard is that his male friends and brothers don't come around much anymore. He is so different and I suppose they are uncomfortable around him. He really needs that companionship and I have mentioned it, but it just isn't happening. We are in Florida winters, so our kids are not close by, but he has a brother about

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patannee,

 

i don't think you're unsympathetic. as a caregiver, you are forced to deal with a different type of loss as survivors. after reading your words, i can tell how much you love your husband and i can sense the deep pain you're going thru. it's unfortunate that your husband's irrational behavior has affected relationships with his brothers and male friends.

 

you want your husband and marriage back to the way things were. the love you have for your husband is boundless and the stroke has affected every facet. hopefully with time and patience, things will get better. seek advice from a neuro psychologist and maybe he/she can offer therapy and/or prescribe the right meds to help deal with issues pertaining to your husband's emotional/mental well-being. anything worthwhile takes time. all the best to you both and i hope 2008 brings positive things for you both!

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Patanne,

 

I have no doubt you love your husband very much. Your feelings for him are expressed beautifully in your post.

 

I understand, too, how much you miss him even though he is still with you. My son is doing quite well since his accident. His injuries have left him with many of the disabilities people experience after a brain-stem stroke. And I think we've all adjusted quite well to the "new" Joey. But I often miss my son. For instance: he has a paralyzed vocal chord so his voice doesn't sound like it used to. Every now and then it does, though, and when I hear it I realize I miss how he used to be. Lots of little things like that.

 

This site has been a great resource. I can vent those type feelings without having to worry about being judged or even misunderstood.

 

Take care and enjoy the New Year,

Lorri

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Thank you for the update. Glad to hear he has some relief from the new medications. Sorry to hear about the guys in his life not being able to "cope" with differences that stroke has brought. Unless someone has experienced stroke first hand, they really don't totally "get" what is involved. Perhaps, if you printed up the Letter from your Brain" in the Classic Postings and Advice Forum for them to read, it may help them understand a bit more.

 

I can understand his issues regard BM. Post stroke, I've experienced difficulties myself, which have improved considerably but are still there to a certain degree. Emotionally, it is difficult to deal with - just proving there is another "thing" in our body that doesn't work like it did pre stroke.

 

I sincerely wish for you both a brighter, happier, and healthier 2008. Take care and (((hugs))) to you both.

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Dear Patanne,

 

You have described perfectly (with the exception that my husband's stroke affected his right side) my husband's condition. I've been dealing with the vascular dementia for about a year and a half now. I know exactly what you mean about not sleeping, "accidents", obsession with bowel movements, the self obsession...........the person he once was vanishing.

 

I think it is really important for us to get out and take time for ourselves in this situation. I'd suggest you look into any sort of respite program for your husband so you can have a few hours out a week. It is so helpful. (Even though I've had limited success with my husband attending, I have another outlet coming after the first of the year, a volunteer will be coming into the house to stay with him a few hours twice a month.)

 

I do agree that we have to take on a different role and the firmness issue is difficult for me as well. It's just hard to realize my husband is different now and I am now in charge of both our lives. I think we have to view this as Alzheimers, though vascular dementia does present a little differently since the decline isn't gradual, rather it takes steps down (My husband now takes Aricept and Namenda). Bill has had tmes of paranoia and psychosis too, imagining a conspiracy, or telling me something is 'right over there' that just isn't there - it is scarey. I do have to remind myself on a daily basis that my husband isn't doing the things he does to irritate me. He doesn't realize the things he does are sometimes inappropriate and thoughtless. His reasoning and sequencing skills are severely limited. Bill has spent a total of four months in a skilled nursing facility, twice for one month and once for two months. Even though it isn't an ideal situation, at some point this may be an option for respite for you. Like you, I have said all along I will take care of him at home unless I just cannot do so anymore.

 

I can "ditto" your post, for sure. One of the persistent questions it seems is "who has it worse, survivor or caregiver?" Well, we prefer not to even go there anymore since it doesn't even matter. I believe the survivors who post on this site are so loving toward us caregivers it is a blessing to know each and every one. I just keep thinking though, I DO NOT live everyday with memory, speech, vision or loss of the use of limb or limbs. I can drive, I can speak, I can walk unattended, I can make decisions for myself, read a book or write my signature. (My husband just asked me what year it is...)

 

So, dear Patanne, we just need to keep on keeping on. We do need to take care of ourselves and each other. Just know you aren't alone and you are loved.

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Guest patannee

 

WOW, I never realized how wonderful it would be to communicate with those in the same situation as I am. THANK YOU!!

 

 

I feel that your advice is really worth listening to, as you know personally what life is like with a stroke victim. For example, this morning he could not figure out how to get his belt on. He patiently worked at that task for 1/2 hour, before he accomplished it. I think it is better if he can do it himself eventually, than if he realizes that I am aware of his problem and jump up to help. I do have to button his shirts most of the time (so I get him pullovers, which go on backwards sometimes) and he cannot tie his shoes (so he wears the ones with velcro straps)

 

I get lots of advice from "friends" and family, but some it is so far out. Like, I had a falling out with my favorite sister-n-law, who I considered my very best friend, as her constant advice on how to deal with my husband became unbearable. Thinks like "he acts like a child, so you should treat him like a child", "you have no life, you need to get out go with us" (meaning a group of couples we associated with before my husband had the strokes.) "Just leave him home and go out and have a good time". "You are a maryter to him". She is a kind person, who means well, but does not understand. More than once she told me that she could hardly stand to be around him. Yes, he is a totally different person, but he is my husband, the father of my children and this was not something he did on purpose to hurt others.

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Gosh I REALLY don't know what to say.

I've read and re-red this thread and your comments but can't come to 1 single shred of intellegent advice.

You as the care giver have a tough job and I'm not in a position to relate other than I myself am fiercely independant and when my wife has tried to help me in the past it would set me off but I had to learn that I'm just not able anymore so I've let her be more involved.

Of course I've had only 1 stroke and have not to my recollection had any similar issues as your husband except for maybe the BMs That sucks and I sympathize tottaly with him there.

I wish you both the best and hope that you can both find a medium to better deal with your situation.

 

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Patannee

 

Good to see you posting again,even if it is out of frustration. I remember you did a lot of posting a couple of years ago about Bill's behaviour after he had his major strokes. I have been eight years loking after Ray so I know that long term caregiver burn-out feeling. I think it is such a responsible and stressful life, looking after someone 24/7 that we feel isolated, frustrated and a lot of other emotions that I could see reflected in your posts.

 

The "good advice" gets to me sometimes too. Others don't realise that you can't just leave your disabled partner at home and go do your own thing, not if they need care, and not if you want them in one piece when you get back. There is a legal obligation too if you have power of attorney or guardianship that makes you legally responsible for their well-being so I would use that when others ask why you can't just go off and leave him alone.

 

Ray, like Ann's Bill, also has vascular dementia and that does complicate life. Try to find a dementia support group in your area if you can as you will get a lot of information on how to handle the strange behaviour that dementia brings with it. Explain to others that because of his dementia Bill thinks in a simpler way now and so doing things slowly is the way to go. I step in and help if I see Ray is struggling with something but let him do it himself if I think he is achieving something by doing so.

 

I find a routine helps as he can then get an idea that Monday is Daycare and Tuesday is... Ray can tell the day of the week by what we are doing. He goes to Daycare once a week, a Stroke group called Scallywags once a week and I have a shower nurse for one hour three days a week as he can't shower himself now. I go for a walk while the shower nurse is here which gives me a break in the fresh air.

 

Maybe if you meet friends on neutral ground that would help. We meet friends in our shopping centre (mall) for morning coffee or afternoon tea, that way if the "visit" is making them uncomfortable they can make an excuse and leave. It is less embarrassing than having them at home where Ray wanders off and leaves them in the middle of conversations. Mind you we have friends that don't seem to mind being with us even now - got to love them for it.

 

I had my sister on my case a lot until I had her "mind" Ray as couple of times, now she is much more sympathetic. It is true that hands-on care is the only way to learn so suggest your sister-in-law help you out by coming and looking after him for a couple of hours a week while you have a break. Tell her:"You won't really know what it is like until you're here on your own." It is a polite way of saying that she doesn't know what she is talking about.

 

I guess you will find as circumstances change you will have to find new creative ways of dealing with the new problems. Ray will wear depends which is a blessing as he has some incontince. At first it was a problem but now he just puts them on when he gets dressed. Without that he probabaly couldn't stay at home. It is hard to have to remind them that they are home because they have someone to look after them - but that is surely the truth of the matter.

 

(((Hugs))) from Sue.

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