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bartfull

Not Sure I Really Want An Answer

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So my Mom had been diagnosed with Celiac, after years of being sick, in 1985. She had so much damage that she was told she must get a vitamin B12 shot once a month for the rest of her life.

Then, after many years she started showing signs of dementia. She refused to go to the doctor anymore because she was afraid of a possible Alzheimer's diagnosis. I tried and tried to get her to go. I made an appointment once and took her, but when she saw where we were, she refused to get out of the car. So I begged her doctor to make a housecall. He did, but she refused to let him in. (I was there. She threatened to call the cops if he walked in the door!)

It was getting to the point where I was afraid she was going to have to go into a nursing home, because I had to work and couldn't be there 24/7. She wouldn't allow anyone else in the house but me. She wasn't to the point where she was going to burn the house down or something yet, but I feared that time was approaching. I went up about 2 or 3 times a week to cook for her, take care of her bills, and clean the house.

Then one day I went up and she was SO sick. She had been fine four days earlier. But now she could barely walk and was visably jaundiced. I called the ambulance. She refused to get on it and they said we couldn't force her.

Next, I called the State Police. They sent an officer down and he interviewed her to see if she was "in her right mind", and determined she wasn't, so HE could force her to get on the ambulance.

I hope no one here ever has to go through what I did that day. My poor mother was kicking and screaming as they carried her out. She even bit the cop. I'll never get that picture out of my head.

She was diagnosed with acute lymphoblastic leukemia. The doctor said it was the type that "sneaks up on you and then pounces". They gave her three weeks to live.

I knew that vitamin B12 deficiancy can lead to dementia, and I had even heard that it can mimic leukemia, so I explained about the Celiac and how she hadn't been getting her shots. I'm afraid that because the doctor was a cancer specialist, he didn't know much about Celiac. He insisted the leukemia diagnosis was correct.

Mom died six days later.

Was I wrong not to fight harder? Should I have insisted that they give her some B12? Did Mom die unnecessarily? This has been eating at me for years, and I'm really not sure I want to know.

But fire away anyway. Let me know what you think.

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Please don't blame yourself. There was nothing you could do over and above what you did. You loved her and took care of her the best you could. I don't think the form of leukemia she had would be something that could be a B12 deficiency. Im sorry for your loss.

(((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))

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You did what you could. Even if they had given her the B12, I don't think it would have made a difference. After all those years gluten-free, she may not have needed such massive doses anymore.

Its hard to see your parents like this. My hub had to deal with his mom for years with her mental illness. There is only so much you can do. They have to get really bad or unconcious before you can force them into a hospital. Its sad

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I'm so sorry for your loss. Please don't blame yourself. I know it's impossible not to play out all those "what ifs" in your head, but when they take over, please keep it in the corner of your mind that you did your best and that was all you could do. I don't think anyone could have done better than you did under the circumstances. Leukemia or not, her health was failing. This is not your fault.

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My friend Jay always used to say, "Why put a question mark where God has put a period?" and I know he was right. Mom is gone and I can't bring her back. But when I read things like this, I'm pretty sure that I'm not out of line to wonder.

http://www.medscape.com/viewarticle/472611

If nothing else, maybe someone else can prevent a wrong diagnosis.

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bartful~ my heart hurt for you. You did all you could do but even knowing that I know that you still hurt. My mom died in 2007 from what we 100% now believe was undiagnosed celiac complications. There is nothing I can do to change anything but still I live with the pain of wishing that I had been diagnosed sooner. Maybe I could have helped ease some of her pain.

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