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You can, until you can't anymore


nancyl

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I cared for Dan until I couldn't any more. I visit him,I love him -But man- o- man , this is hard. It is hard because I am his everything . He lights up when i walk into his room. But that responsibility is hard on anyone. It kinda like a toddler who has figured out the daycare routine, and dosent like mom leaving. But that stage passes as the child gets older.

 

I know this sounds critical of my husband, He is cognitively impaired, as well as hemi paralyzed. He has the worst case of OCD that it borders on ridiculas - I can't spell. lol-- I cry every time I se him, and he is questioning me or talking in aphasia and gesturing asking when he gets to go home, and or when is the next time I take him home . He understands how sick I was , but figures it is time for him to go home. I am better and he see's and decides he should go home or return to our old way. Except the old way almost killed me literally. I let a brain injured man dictate my life. Slowly like the frog in water, i would cave into his request. His needed to control what he could was so compulsive. And I just thought oh well what does it hurt that he wants the blinds all even or the door shut or the bathroom light on , or off, or the steering wheel straight or the speed I would drive or buckeling my seat belt, ( i know i should) he controls the TV the radio in the car, where we would eat. and coke with no ice and what we would eat at a restaurant , and him and i had to share. I like my steak medium while he wants shoe leather done... I could go on and on. But as I write this I realize no wonder I went crazy, I used to be a intelligent independent person, and i was reduced to a humiliating level of service. Oh some call it love, I am now calling it crazy.

 

Reading what i write makes me sad. For myself and for him. I was the lifeguard and I finally had to kick off the person who was drowning me. I am sad I had to, and have a ton of guilt about it. although in reality if I looked at a friend who was doing what I have done, I would encourage her to knock off the stupidity and take her life back. around town ( rural north dakota) I have been referred to as a "saint". At first flattering and then choking on it know. Standards I can't live up to. Not fair I cry not fair. I want so much more than this. I have a mundane cycle

I go to work, visit Dan at lunch hour, visit him after work. then to home I go basically eat a little something than go to bed. At my work I little interaction with people. My boss is great. But the loneliness of my hollow life is overwhelming . Yes I see my daughter , my sister and little Weston man . After I seen Dan. and sometimes I bring him to the house. He gets few visitors as it has been four years since the stroke, and so many seem to think oh is cured now. Really? LOL This is where it would be so wonderful if his family ( siblings and mother) would make the effort to come and see him. But they didn't in the past 4 years so why would that change ? There I am with high expectations .

 

I seem to be recovering from the depression ,some days are good others are not. When I have days of depression I spin and my ears ring and my thoughts race. And I focus on -the stupid of myself. The guilt is stifling . -- guilt that I know I shouldn't have, but can't in my depressive state let go of it. Intellectually I know but a depressed person just can't let go of anything in that state.... I wonder if I will ever have a guilt free life. I look at my catretaking of dan in the past 4 years at home, and I think why couldn't I have succeeded in my efforts to keep hime home. I just can't see what went wrong... Well as sad as this sounds, and please don't anyone take offense , as Dan and My situation is unique just as every ones is. But I let a severely brain injured man - control everything. Please don't try this at home...

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>I let a severely brain injured man - control everything

 

-Nancy, being able to see this(above) is what made this(below) possible - something that never happened at home:

 

He lights up when i walk into his room

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Nancy, the guilt doesn't leave, you just get used to it.  I only had fifteen months with Ray in hospital and then the nursing home before he died. I knew I could not have taken care of him without help and I simply couldn't get that help.  But still , even now, I have the nightmares of him calling out for me in the nursing home.

 

As time passes you just learn to lessen the effect it has on you.  Remember you are a good person, the job was too hard for one person to handle and him being in a nursing facility is the next best thing. Do encourage others to visit him, just short periods, 20 - 30 minutes.  It makes a difference to the person and to the way the staff treat them too. And having someone come visit is a gift.  I know it was to Ray.

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Nancy,

Dan loves you and so no guilt about having to take care of yourself.

Dan mourns his life and home, normal days with you. It just goes that way.

He would want you to be peaceful,happy.

I hope you will have loving visits.

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be proud of your self for doing what you could for as long as you did. I'm sure your hubby wouldn't want you to make yourself crazy.

Just as people who haven't had a stroke can't know how challenging post stroke life is, Unless you've been a care giver you cant relate to those challenges.

 

be strong for yourself and give what you can but take care of yourself or you won't be any good to , your hubby or your family,

 

prayers to you,

jay

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Well Nancy life is what it is for all of us be it stroke survivor or care giver, it's hard both ways as I slowly recover some but not nearly enough as I once figured I would one day... So I'm sure Dan has the same feelings and wishes all the time he could do more sooner rather than later in life....

 

Love is what's keeping my wife and I together, 17 years this year in my condition of what I have learned to do in 12 years....

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Nancy, We all are who we are. And beating yourself up over what you had to do is not going to make it easier or better for either of you.  You did not fail, you did what you could do.  And no one can ask for more.  You've taken the big step and made the hard decision. Now you have to accept that life is what happens while you're making other plans.  The guilt will cripple you if you let it, and I doubt that Dan would want that if he could fully understand what's happening.  Take a deep breath and keep on trucking. 

 

Hugs

-Heather

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Truth the guilt does cripple me. But I am learning, slowly to take back my life. I can't believe how much / is gone.  It is a strange, strange thing - strokes, death and depression.. I have survived all of it. Like a *beep* roach ( lol). I have for the most part "come back" although I was NOT sure I would. the depression for me individually was the hardest. For Dan and I as a couple it was his stroke. For my family it was death of my mom...we had it all..... but we are resilient . I am fighting so hard to get better. And i know i am not / maybe never will be " cured". of course there is no such thing for any of the above. I wanted so much more from life. But this is the hand I was dealt. lucky us... all of us, stroke survivor and caretakers.. lucky lucky us... NOT.. nancyl

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Loss is hard life after a major loss us challenging, depression is insidious one step forward and two back

 

I find the hard work / stubbornness that helped with the small gains physically is just as important to stave off depression.

 

Peace,

Jay

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