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I Can't Start Over


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I am sitting in my office crying as I type this. I just received a phone call from the Mayo Clinic. They would like Lisa to come down for follow-up tests. For the entire first week of August. Why? Is this for Lisa or for their own research? Don't they realize we might have seen all her doctors up here? Isn't there a way all of them can consult each other? Couldn't all the tests be done here? Hell, the Mayo person was surprised she wasn't on the phone. WTF? WTF!!!

 

I can not go through all the poking and prodding, the 3 hour drive, having to pick her spirits up again. She has been improving so greatly that it would seem like a step back. How can you give the person who means everything to you HOPE when there is little for yourself? I cherish every moment I spend with Lisa. And yet, there are so many outside...I can't get the thought together. I have always been a person who fixes problem. Now I can't. I constantly am trying to figure out how and the answer eludes me. I know all of you have gone through what I am saying, and I'm sure some of you still are.

 

I just want her home. I want to take care of her. I want her surrounded by all those who love her and keep her safe.

 

I can't type anymore. Maybe I'll put more in later.

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butch,

 

the medical community have their nerve, to say the least. if only they would take the time to EXPLAIN things once and a while, it might lessen the frustration of the patients and their families. i realize we need them in many cases, but sometimes i SWEAR i think the "treatment, and tests' are commensurate to the amount of insurance which covers what i feel are many times unnecessary visits and stays.

 

i don't know what to tell you except that i feel for you and lisa, and hope the outcome is fruitful.

 

my best dear

kim pash.gif

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Man, that bites sad.gif

 

I understand how you feel completely. And though it's not a confort what-so-ever I can say that one day you'll say the same thing to someone and remember how you feel today.

 

I've had to deal with those doctors calls.

"Can I speak to Kathy?"

"What's this regarding?"

"We have a doctor's appointment we need schedule and need to talk to her."

"She's unable to to talk on the phone. I"m her husband and hold power of attorney, you set up appointments with me".

 

The last call was the best. I got a call to confirm a new appointment to have her g-tube removed next week. I just shook my head and told them they need to recheck their systems, she had it removed 2 weeks ago.

 

You might want to call the back and find out why exactly she needs those tests done. Don't ask the questions just to yourself, ask them to the doctors. You have to stand up to them and knock them off their pedastals sometimes. If you've applied for SSI or SSDI, then they could also be for evaluation purposes which are appointments you WANT to keep.

 

Hoping for the best;

Michael

 

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Hi Butch,

 

What Michael is saying about finding out more about why they need what they are asking for is probably in your own best interest. Then you can decide easier if you want to put her through more tests and being away from home. If it's purely for their benefit or the benefit of future stroke patients, let them get copies of your wife's records from our local doctor, if that is your choice. Maybe there is something that really does needs to be tracked every so often that isn't being covered locally.

 

I've seen a lot of different caregiver approaches on this site: 1) Some spouses are so desperate to get their loved one back the way they were that they drag them to doctor after doctor hoping to find an undiscovered miracle cure. And 2) Those of us, like you, who don't want to see our spouses go through anymore pain or to be used as a guinea pig. Sometimes the line between these two camps is not all that clear cut because while we don't want our loved ones used, we also want to give them the best chance to get a quality of life back again.

 

You will get through this, Butch. You can't control or fix it, but you'll learn to accept that your best is good enough.

 

Jean

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