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i try not to blog so much misery but, thats all i got,, 2 yr coming


nancyl

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i try to tell myself not to blog so much, but the simple fact is there is more than enough misery in my household that it spills, for lack of a better word.. so i guess spilling it here is the appropriate place.. dan is on the want to die road again.... the tiredness he had, from the titration up turned into dizziness ( or it was all together ) who knows ... but now its full blown depression with a suicidal ideation... he just wants to die, not so much suicide per say ..he really has no way to do that ( mind you he is resourceful though) but his method is passive ... wont eat, ok , wont drink NOT OK, and wont take his meds NOT OK.. - sorta( we can go a long time with no actual food) so i am less concerned about food... but it is a all or nothing with dan anyhow.. ... so through out the day i periodically will bring drinks, and food.. nope.. offered his meds... these are not something i am leaving around.. and he refused although i must have tried 20 times.. tried to negotiate the pills, nothing...so we are on day 3 of no real nutrition ( he did have that piece of pie yesterday AM) but thats it since friday... now friday he was reasonable well hydrated. so he hasent drank saturday, sunday and today... so we are on the brink now.... the refusal of meds started just today AM.. so tomorrow will be the start of problems most likely although it might not begin till weds..... i hate watching a train wreck, and i am unable to stop it, just have knowlege of it.... not much can be done until there is a actual medical issue.. i cant haul him in at any rate ( he wont move) - says he is staying in bed till he dies-- even with aphasia as bad as he has it , he did make that clear... thank goodness for briefs and waterproof pads. i think he also knows we are coming up on his 2 yr strokerversary....and the fact he is not "cured" or better even ( although he has come a lonng ways) . has got him deciding he is gonna give it up... and if he could "will "himself to death he would be dead already, but he can't ... he knows he has severe cognition issues , cant talk ( aphasic) , cant really walk without someone with him at all times, suffers from no antecedent grandmal seizures... he just doesent see himself as someone of value anymore.... although he is , he is my husband, the father of my children, a grandfather, the hardest working man i have ever known, who only wanted to provide for his family.. who worked 2 jobs for years so we could be ready to help the kids and have a somewhat secure retirement.. he is very valuable to me.. and i instill that as much as i can/could through out this whole ordeal... but here i am 2 yrs out and still we get a glimpse of our life now and then as it should have been... but mostly just heartbreak of what could have been....i can adjust and adapt to whatever i have to, but dan was holding out thinking one day, he would be cured.. and yes some strides can still be made ... but it is unlikely, barring a miracle, that he will be able to become someone he considers of value... although as i said before my value and his value he places on himself are vastly different . again i am just venting......... this has been done before , and if he could retain information he would remember that... unfortunately this is dejavue AGAIN for all of us here on strokrnet..nancyl

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Nancy, I don't know that it is ok to let him do this. I have heard cases of caregivers who were in trouble with the law because they didn't do something. I just don't know. Would it do anything to his attitude if you told him you were calling the life squad to come and get him so that you wouldn't be held legally responsible for not getting him outside help when he started going down hill, purposely? What an awful path we caregivers walk. I pray for you both, I don't know the answer, but do fear the law blaming us, who are busting a gut to help our guys.

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Hang in there Nancy, you are right on top of it,and know what to do and when to do it. Changing meds is such a nightmare, we know it's only a couple of weeks for the changeover to settle down, but those couple of weeks are so harrowing. Do what you have to do and it will level off, we know the drill, right? I'm supposed to wake ray up in a half hour to take him back to the same hospital for the other test, and I know for certain it is going to be World War III. The seizures were more minor last night, should be grateful I guess, but after two years I'm losing my gratefulness for small things like that. Two years is where I am too and yes, you finally have to admit this is probably as good as it gets. But we are troopers, we are fighters, and there are better days ahead for both of us.

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Nancy :

 

you and Dan in my thoughts and prayers, I can imagine what he must be going through to think dying is better option than living. I know I thought along same line in my beginning years had it not been our young son giving up was so easy. Maybe reading him spiritual books & maybe telling him more often how much you love him & need him in your life might help him to see he survived for a reason & there is something good will come out of this. For me loosing job after stroke was hard pill to swallow since I thought if I don't bring in paycheck home then I m worthless.It took me some time to realize I am still worth it without paycheck. God does not make mistakes, tell him his job on earth is still not done & suicide is not an option.

 

Asha

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i am trying to use a nursing home as a guide, he would and ( was) allowed to refuse meds there... and they dont do much untill there is a actual medical issue, and in the past i used to notify the docs who basically said just do the best you can.......i think about it constantly and am really doing all i can... i cant ask for help till i actually need it. wierd life and only us caregivers 24/7's of us understand...

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Nancy

Sorry to hear you are going through this. rather than actually wanting to die - this my be a way of communicating "poor me" I'm useless, worthless, a burdon for everyone. being male he can't/won't communicate those feelings. & the longer they stay buried & in the dark the more powerful & controlling they become-- you mentioned OCD which ccould be a part of these obsessive thoughts.- we no longer have any control to fix/change things all we can do is sit in this useless body & watch what it does to our loved ones & our family's life ( light goes on - if I weren't here it would be so much easier on them.

 

when I get obsessing about bein such a failure , I, too can fleetingly have these thots. but I am emotional & communicate Wayne know how much I hate what this does to him & how sick I am of being a burden .then I think of my daughters. siblings & grand children and have a good cry that I'm so weak & would think this -- I'm usually better after a good cry.

 

My mom's dad committed suicide when she was 17. I saw her guilt & pain all her life- I believe that wa stthe manifestation of her OCD -- a coping skill to not revisit her Dad's death. if her mind was cluttered with all these obsessive thots - no room for Dad thots.

 

 

from my stance I don't believe I have ever been half serious - just the expression of an "end of the rope" frustration -- no where to go & no way to get there.

 

Nancy - do not feel guilty about this - I don't think it would matter what wonderful things our loved ones do with & for us - we still know the truth.

 

it is scary to hear but take it with a grain of salt don't discount the isolation of winter & nuisance of snow & cold- as a factor. we need sunshine & green to feel better.

 

 

 

with love & hugs coming your way

 

Susan from Alberta Canada

 

Love & support coming your way

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I wonder if telling him he was going to cause your daughter to have another trip to the emergency room that could kill her would cause him enough worry to stop this. We always hope our guys have enough mental processes that they can care about the problems they cause others. So far, Bob seems to, hope that doesn't change. I see so much suffering amongst us caregivers lately.

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Nancy, I just have no words. I wish so much to have something to offer but you know best of all that there is not much to be done about this. You are right about needing to have a medical issue before calling for help. One thing about it is that, soon enough, a seizure will be the issue that gets the 911 call activated. You have learned long ago that reasoning with this behavior is useless. Whether it's dementia, OCD, depression or a combination of all those, reasoning doesn't seem to change anything. Just the OCD alone is pretty immune to reasoning if the person is caught in the repetition.

 

With you in spirit, Nancy. ~~Donna

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Nancy, so heartbreaking to read what you are going through. I hope things improve soon.

 

I will pray for you and Dan.

 

Julie

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Nancy, please let me say you can't keep it all pinned up inside of you, it has to come out. You gotta let it out how you feel and what you think just like you did in this blog. You have to get it off your chest and you can call it venting or whatever but you feel so much better when you do.

 

You are married to a real good man and you really hate to see him in this condition and you never saw it coming. Many others are in the same situation and still many others will go this same route. You are not alone and never will be.

 

Husbands, wives, young and old are faced with stroke survivors in their lives. We pray, we pray and we pray some more to keep abreast of the conditions facing us and that helps all of us to manage better day by day.

 

As Asha says, we have to play the cards we are dealt.

 

Dan still has all his body parts just can't speak real good right now. When you get here you'll see men and women who has lost much of their bodies and some been burned badly but they are alive and have kids and families. They are all so glad to still be alive. I learned from them to be thankful I can do what I do and you are so thankful Dan can do what he does and still alive.

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I can relate on one level: a few years before the stroke, Ray had some psychiatric issues and wanted to take the easy way out. But he did it the halfass way like Dan: he would sit in the garage naked when I was at work and it was 0 degrees out, but chickened out when he started shivering too much. Then he would tell me that after I went to bed, he put all his pills in his hand but was too afraid to actually take them. We finally got him leveled off through medication; then he had his stroke. I hate to think that maybe the medication caused the stroke, but that's water under the bridge. I feel bad that he's never enjoyed that happy-go-lucky feeling for more than a few hours his whole life.

 

He had a psycho-therapist (I think she was called?) at one time and she told him something that freaked him out: that when you are born, your day to die is preordained, and if you kill yourself before that time you will float in purgatory or whatever you want to call it until your day to die finally arrives. I don't know why, but that really scared him and he stopped his acting out, if you want to call it that. I thought it was ridiculous, but maybe Dan will understand, in a religious kind of way. It is God's will when you die, not your own, no matter how passively you commit suicide.

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I became a Lifeline (suicide line) counsellor because a friend of mine committed suicide aged 48. He was in debt and his wife had had to get a job to help out so he thought he was a failure and his whole life had been for nothing. I HATE suicide as I have had calls from the families they have left behind that broke my heart over and over while I worked for Lifeline.

 

I wish there was a pill that would eliminate suicidal thoughts but there doesn't seem to be one. From my observation it is a slow rebuilding of life that does the trick. Maybe find a way of documenting progress, adding highlights such as holidays and special days, finding something he can suceed at. I know jigsaw puzzles saved one of our client's life, he rang us in jubilation when he succeeded in finishing one. He even went back to work because he got his confidence back.

 

You work so hard to look after your home and your husband. Remember to look after Nancy too. I watched my granddaughter who gets to supervise her two little brothers a lot sitting on the beach yesterday, Ipod on, blissful expression on her face as she did NOTHING. That is what I mean about looking after yourself - doing nothing and enjoying it.

 

(((hugs))) from Sue.

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Nancy, I kept thinking about you today and your situation. You're doing all you possibly can. Trying to pull the one's we love through depression seems impossible - I guess it actually is impossible. It's so easy to get sucked in to their darkness. Mom is always talking about dying, in fact today, in telling me about her fall yesterday she said, "I died". She also feels worthless. I try to tell her that she is not going to die until God says it's time and as long as she is here, why not try to enjoy at least some of it. I know it must be awful to be in that situation. I also know how hard it is to have time for yourself and enjoy it, when the one you're caring for is always in your mind. Praying that you (and I) will get through these times.

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