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acceptance denial hope loss

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Thinking out loud.

 

How do you know when it's time to face the facts so that you can begin to accept it and hopefully move on? Should you ever try to come to terms with what has been lost, or should you never accept them with the idea that if you don't, you might still be able to recover the loss? What I mean is, if for example you lost the ability to use your hand, is there a time when you should just accept that its never coming back so you can stop spending energy and time on something hopeless, or do you simply NEVER allow yourself to accept what could be true so that you don't miss the opportunity for it to recover?

 

I am at a loss. I know there are somethings that are cut and dried when it comes to Patrick's recovery, like the eyesight in his left eye. He went to the optimologist yesterday for the first time since his hospitalization, and he was told point blank that the optic nerve had been damaged by the stroke and nothing could be done. It was just another loss in the path of the tornado know as stroke. There is nothing we can do about it except try to come to terms with it. I say "we", but the truth is, it's all Patrick's journey, all I can do is try to comfort him while he grieves for the loss and try to help him back up when he's ready.

 

I have read the stages of grief that Jean posted for us, and I really can't identify myself in any of the stages, which makes me wonder, could I be in denial or acceptance? I feel like most of the time I have come to terms to what ravaged our lives 8 months ago and realize that our lives have forever changed. I don't have any false expectations about life being the way it was. But I also wonder, have I really grieved for that loss yet or have I simply set it on the side of the road until I have time to deal with it?

 

And where is Patrick in his stages of grief? I know there are things he has not accepted as permenant changes in his life, like the ability to freely speak his mind, the ability to use his right hand and the ability to be med-free, among many others. But even though he has not accepted these things as permanent losses due to the stroke, he seems to be able to accept them in the here-and-now most of the time. But I worry, for how long? Is this HIS stage of denial? I see anger in him sometimes, and I see sadness in him occasionally too. I wonder if he ever bargains with God... or blames himself. Knowing him, I wouldn't think so, but I will never know for sure.

 

Is guilt one of the stages? If it isn't, it should be. How often I feel guilty, for not doing more...for being selfish...for not being the perfect caregiver that he deserves. I know that being the perfect caregiver is impossible, but it doesn't make the guilt go away. and I feel guilt for sometimes thinking others problems are so much easier than mine, or guilt for thinking someone else has it so much worse- what am I b*tching about?

 

So back to my original inner conflict: Do I simply let the truth of losses come to us on their own even though we may be wasting valuable time and energy, wishing and hoping for something that is simply impossible? Or do I try to face (and get Patrick to face) the truth head on, and try to deal with the loss now so we may move on from it? I think it is too early in the game to try to get Patrick to face any permanent losses right now. But will I recognize the signs when it is?

 

Kristen

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jriva

 

 

Kristen,

 

I don't think you could have written an essay like this if you were already at the acceptance stage of the grieving process. All your 'if only I had been a better caregiver' type of self punishments are grief statements leading up to acceptance, though. You're working up to understanding your limitations to control the outcome in all this, i.e. the spouse/caregiver just doesn't have enough hours in the day to do it all. Assuming that by doing it all, it would have made a big difference which I don't believe is true for most of us.

 

One other observation here: you and Patrick will travel your journeys to acceptance separately. You can't "help" him or "force" him on some articifical time table. He will have his and you will have yours when the time is right.

 

I can't tell you if you'll recognize it when you find acceptance or not. For me I think acceptance found me before I consciously recognized it. I started relaxing and not putting all my energies in The Stroke. Then one day, it hit me that I was finding joy again in life. Sure, the stroke is still in our lives, but it's NOT our whole lives anymore the way it was in the first few years, if that makes any sense.

 

Jean

 

P.S. My PM tracker says you still haven't opened my PM to you about speech. Check your in box.

 

 

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givincare

Thanks for the reply, Jean. Even with what you have said-which all makes sense to me- I am still not sure where I am at in this. Sometimes I feel like such an oddity that I wonder if I don't do most things in a different way than most, and thats why I can't apply the stages to the way I feel. I don't want to force anything on Patrick, but at the same time, do I keep my mouth shut when he tells me for instance, he can't wait to drive again, when the reality is that he probably won't? I honestly don't want to tell him that he will never do this or that again. But what if what I am doing is keeping him in denial? Is it my job as a wife and caregiver to let him live perpetually in that state, or do I try to approach him with it before a doctor/therapist blurts it out? I keep my mouth shut and tell myself that I don't have a crystal ball so why tell him he can never_________ again. But am I doing the right thing?

 

BTW, I absolutly read the PM, (I haven't deleted it, so I pulled it up again) hopefully it will register as "opened" now.

Kristen

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fking

Kristen, let me offer this from my own experience as a survivor.

 

I say face each day with hope for the possible, not impossible. Just the other day was a post about a person who spoke after 20 years of silence. My own case follows Patrick's situation.

 

I was just out of hospital thinking of TIA or something, they couldn't find anything. My eyes are burning, vision blury, ears ringing, nose running, leg and arm paining so much my walking and hand grip is suffering.

 

Took my prescription for new glasses and was told to wait, because it was too much difference from what I got now. I would improve plus it wasn't signed by the optimologest. As survivors, we have been told we wouldn't walk, talk or whatever again, we did, so there is always hope for progress.

 

We face what's lost now, but with hopes some of it will return. Even though we have loss, we still have hope and still alive so regeneration is always possible. If a leg or arm was amputated, then there is no hope, its a permenant loss. I accept what I can't do now thinking I was slowed down for a reason, only God knows.

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Phyllis4732

Very interesting, Kristen. Some thoughts from the other side - a survivors. I sincerely believe the hand will eventually come back, BUT it may never been able to do really fine things. Also, the brain will do it. I noticed after maybe a year that I was picking up finger foods such as French Fries with the good hand. (Opposite from what normal was) I also now automatically put cups and saucers, water glasses etc. on the good side when at a meeting and also at home. I don't want to spill in public. The bad hand can hold but I don't trust it.

 

The eye. I have one of those. I hope it will come back but most likely won't. The neurologist I go to just said, it's no good when giving me an exam. He's the type who if he thought there was a chance he'd send me to someone. For argument sake, let's say that Patrick should accept that, but never give up hope of new things, perhaps a nerve transp;ant if they come up with it and he wants to try it. It sort of necomes final but there's that glimmer of hope that allows you to hope that somewhere down the line, who knows. With that, accept but don't give up a thread of hope.

 

As for the type c/g you've been- I haven't heard of anyone actually beoming superwoman. You are doing the best you can I'm sure. A bad one would say "the h--l with it and leave.

 

I know to the two of you, 8 months is a long time, but it really isn't. I think you have to go on as if nothing happened and live your lives with limitations. By this, I mean going on vacations if that was what you did before. Yes, you would have to make adjustments such as if Patrick carried luggage and now couldn't- figure a way for him or ypu to do it such as a case with wheels - If you wanted a family or a larger family, don't let this stop you, and if Patrick feels he wants to do some type of work, perhaps something home-based if necessary, find the ways to make this happen.

 

Lastly, stroke can and does happen to all people, ones who took very good care of themselves and those who didn't, young and old, from accidents, etc. look at the different type of stories we see here. It happened. you just have to continue the best you can and make a good life.

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jriva

 

Kristen,

 

On the driving thing. Don used to act like he was going to drive again and so I know how hard it is to deal with that issue when you know that isn't likely to happen. What worked for me is to use the 'mommy thing'---you know, never say 'no.' Instead I'd say, "Sure you can drive again, but after a stroke it is required by law to get retested again. When you think you are ready for the test, let me know and I'll take you down." That way, it wasn't ME saying "No, you'll never drive again" and it put it on his shoulders to accept his limitations. I use this never-say-no techique for a lot of things that involved caring for my Don and my dad before him. "Sure you can have that piece of cake as soon as the doctor says you're no longer diabetic." "Sure I'll help you put on your shoe as when you get too old to do it for yourself." The point is, don't be the "no" spouse/caregiver if you can help it. Turn your words around to "blame" it on something else.

 

Jean

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