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Down to Mayo


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To continue with the story...

 

Last March 27th, Easter Sunday, was the day Lisa left for the Mayo Clinic. A little backtracking though...

 

Her Drs had told myself and her family there was nothing else they could do. Lisa was still continuing to stroke and they had tried everything. We had three options: continue with the current path of treatment, stop all treatment and let the strokes happen but make her a comfortable as possible, or go to the Mayo Clinic and try experimental treatment. To us, it was ball game, game over. We were all so tired from dealing with everything and everything appeared hopeless.

 

There was a large gathering of all Lisa's family at her parents house to decide what course to take. There was a lot of crying and we discussed her options well into the night. But, ultimately, it all fell on me. I sat quietly for about an hour thinking about it, listening to everyone. Looking back now, I don't think anyone realized it was my decision alone. Remember what was the main story in the news at this time? The Terri Schiavo case!! Now, here I was with the same dilemma. I couldn't watch TV without seeing something about it, and it was way too close to home.

 

Anyway, with our kids sitting next to me, I made my decision. I only said one sentence, " If she is going to leave me I want it to be quick and I don't want to make a case study out of her." That was it. I had just decided to let my wife die peacefully. Silence.........her parents agreed.

 

(I haven't told Lisa about this part of her journey yet. I'm not sure how she would take it. Would she think that I had just given up on her? Had already started to look at my life forward? I don't know and I'm not ready to deal with that yet.)

 

I go to the hospital the next day to inform her Drs what we plan to do. Then, here is the twist that saved her life. Because she is awake, unable to speak or move and using hand signals for yes or no questions only, the decision for her treatment isn't mine, IT"S HERS!!! So, a meeting is set up in her room with myself, her Drs, and the Social Worker assigned to Lisa.

 

Lisa is given the three options to decide. She is to squeeze my hand twice for yes, once for no. Each question was asked twice.

 

Do you wish to stop treatment?...One squeeze

Do you wish to continue treatment here?...One squeeze

Do you wish to go to the Mayo Clinic?... Two squeezes

 

O.K. we get it, but I have to ask you again Lisa, is that O.K.?...Two squeezes

 

Do you wish to stop treatment?...One squeeze

Do you wish to continue treatment here?...One squeeze

Do you wish to go to the Mayo Clinic?(At this point, Lisa turns and looks me in the eye)...Two FIRM squeezes

 

And that was it, she was going to the Mayo Clinic. Discussing everything with her a year later, here is the point when she starts to remember. From the ride down to the Mayo Clinic on she can recall. Nothing that went on a our local hospital.

 

In hindsight, I have thought much about the decision I made. I have "what if"ed it to death. I had no way of knowing what the outcome would be. Right now, as I sit here and type this, I have a better understanding. Would I decide the same thing?...Perhaps. Decide differently...Maybe. Thankful that Lisa was able to make the decision for herself...Definetely.

 

We have so much to look forward to. Just this past Saturday, Lisa had a hair appointment at the salon where she worked. She had a "crazy idea" to go without her wheelchair. It's not a long walk from the parking lot and she knew she could make it. And, she did it. Lisa was positively beaming when we returned home. It was the first time she had left the house without her chair.

 

Spring is starting to show it's head here in Minnesota. Blue skies are returning. Everything is looking bright.

 

Butch

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Butch,

 

I'm glad you wrote this and did such an eloquent job of describing the emotions many of us caregivers and family members go through when we have to make such heart-wrenching decisions to make.

 

Survivors often say we don't understand what they go through and I believe the opposite is equally as true: they don't always understand how difficult it is to have such a heavy emotional and physical burden on our shoulders. Your blog helps us all understand one another a little better.

 

Jean

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I too have to agree Butch! You did an absolutely (to paraphrase jean) ELOQUENT and elegant job. Your detailed account, lets those of us who are survivors, in on what the caregivers must go through. I personally have said time and time again, Caregivers are saints! And I truely mean that with all my heart. If not for caregivers, we survivors could not have even thought of a recovery. Kudos to you, and all caregivers. Steph

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Butch:

 

reading your account of that day raises hair on my neck. I know from experiene you all caregivers equally wen through hell, this whole ordeal is not easy, and I agree with steph kudos to you all caregivers without them we might be in nursing home

 

Asha

 

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Butch,

Reading this really made me realize I am not alone. It was one of the toughest decisions I have ever made and like your situation Rod too was more alert the next day and was allowed to make his own decisions by shaking his head yes or no. He did tell me later he does not remember anything from the regular hospital either. I am sure this was a very hard thing to write. Thanks for sharing.

Lynn

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It just goes to show my feelings about caregivers and this kind of life decision is everdence of my post a few days ago about caregivers We are all in this together. Sometimes caregivers are survivors and vise versa.

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Butch,

I loved your blog, especially since the time frame is so close to the one Patrick and I went through.

 

I had the burden all to myself, and it was tough knowing that his family would have wanted me to make a different decision that the one I knew was right for him. Luckily they understood it was my decision, and would respect what ever I decided.

 

By the time the Schiavo case was the top story again, Patrick was 3 weeks post stroke and very aware of the case. His response to the story helped me realise I had made the decision he would have made for himself.

 

Thanks for sharing you and Lisa's story, Butch.

 

Kristen

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hi.... I too was told after my hubby came home that he should go into a nursing home for therapy which I knew would only make him more depressed, as he didn't understand that it would be temporary. He was very depressed for the first two years and I was again told to put him in a home ....it would have been the worst thing I could have done cause now he has improved so much I can't even think of how it would have affected us... We are now able to do things together again and hopefully can carry on as if nothing happened... I pray ever day that he will continue to improve with time and be able to be more independent as now he still can't make the right decisions when it comes to daily living... His stroke was three and a half years ago on the right side of the brain.. He has his impossible moments and gets very agitated at times .... so hang in there time will help heal all deenie

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