Caregivers Support Group

My mother, who is only 61, has been sick for the last thirty years. That's most of my life. For years, she's suffered from non-epileptic seizures. She started having them after she had a surgery in the mid-1970s. From that time, she experienced the seizures somewhat consistently. We thought that was bad, but it's nothing compared to what we've been through the last two and half years.

In April 2007, she had to have a pacemaker implanted. She was admitted into the hospital for a vertigo attack (that's another problem she has). That night her heart stopped for ten seconds and the doctor said if it happened again at home she would die before reaching the hospital. We hesitated for two days because we knew that she physically could not handle anesthesia. She's had anesthesia procedures where the doctors would tell us that they almost lost her. They had to give her epinephrine to keep her heart going. We also thought about the times in the past where she passed out and we had a hard time reviving her. Based on discussions with the doctors, it seemed that she had this heart condition, but it was never diagnosed. We decided on the pacemaker.

Since then, she has suffered so much more than she has in the last ten years. It's been horrible. Once again, after the pacemaker surgery, they had to give her two bolus shots to keep her heart from stopping. She is wheelchair-ridden. She cannot walk without losing her balance. It took months for her to regain usage of her left arm. She was also having horrible pain triggered by the pacemaker. The doctors were unresponsive, until FINALLY, the pacemaker tech guy said it was set one dial higher than necessary. He changed it and FINALLY she's had minimal pain. We've been in and out of the hospital so many times, I now know the nurses.
She never has any energy. Her life is limited. She stays in bed a lot of the time. She's miserable. They have her on Prozac and another medication. They are not helping her.

Last December, she took a supplement hoping that it would give her some energy. Unfortunately, she ended up with some kind of speech problem. She started speaking gibberish for hours and hours. We were beside ourselves. We took her to the ER again. They gave her a CT scan. They couldn't figure it out. She was moved to another hospital (supposedly with the best neurologists in the state). For the two hour drive in the ambulance, the gibberish continued. Again, another CT scan. They couldn't figure out either. Eventually, they decided it was all psychogenitic. THIS IS NOT TRUE. I believe she had a stroke. However, the doctors could never confirm it. Because of her pacemaker, they could not give her an MRI. This is the one thing that could determine whether or not she had a mini-stroke. The next day, she woke up speaking in a French accent. Because they could not say anything else than everything is psychogentic, the doctors sent us home after a few days without a true diagnosis. We looked it up online and said that she experienced so many of the symptoms of Foreign Accent Syndrome. But this syndrome is so rare that we can't get anyone to examine her!

(I will try to continue this post tomorrow-thank you)
Posted on 10/23/09, 08:10 pm