October 12, 2000
Changing the Meaning of Normal
After we got Mother to the hospital in Charlotte, and the neurosurgeon (Dr. Neurosurgeon) had seen her, she was admitted. Dr. Neurosurgeon told me about the procedure that would be done, and said that since there was an opening on the operating room schedule for the next day, he'd like to go ahead and schedule it. That was all right with me, and I talked with Mother (who was still confused, though less than before the spinal tap) about it, to make sure it was fine with her, too.
The surgery was to happen the next day, but wound up being postponed due to a heart problem being found. The anesthesiologist had been concerned that there was no record of an electrocardiogram, so he ordered one, which showed the problem. I give that man credit for saving her life.
A cardiologist was called in, and further tests were ordered. This would delay the surgery several days, which was not a problem. I took a day during the testing to go back to my home and get some more clothes, etc., as well as to check in with my friends. I had no way of knowing that my trip home in late October would be my last one until well after the first of the next year. But on that late October trip, I did arrange to be on unpaid leave from my job for an extended amount of time. The people there were most kind and understanding of my situation.
The tests showed the details of the problem, and the surgery was rescheduled. I am pleased that Dr. Neurosurgeon and the cardiologist adopted the same tactic Dr. Neurologist had: see what I knew before telling me things, rather than automatically deciding I was too ignorant to understand anything. They were both happy to answer questions, and made sure I was kept informed every step of the way.
The surgery went very well, and Mother was on her way to recovery when she developed pneumonia. That extended her hospital stay.
During the time she was in the hospital, I was making plans for her to come home. I had learned that she would need someone with her all the time (she had been living alone), so I set that up with a local agency. I was trying to completely clean the house, but the work was more than I could finish before she came home. Her homecoming was November 30.
I don't mean to overlook the many kindnesses extended to me by friends and family during this time. I would not have come through the experience as well as I did had they not been around, helping out as needed.
Condensing the story: ultimately, I realized that there was no way I could continue to work for Non-Profit Agency #2 and take care of the things Mother was not yet capable of doing for herself. Although most of the people from the agency were great, they could not take care of certain things for Mother, either. After a lot of thought, I realized the best thing would be for me to resign and go stay with her.
This was not something either of us had ever planned to have happen. I will not make it pretty and say I didn't resent the situation; of course I did. I wasn't angry at Mother for getting ill, but I was angry at fate.
But there were blessings in this, too. I had several really good years with Mother (before her second stroke), and chances to learn some of the stories she hadn't had a chance to tell me in detail earlier in my life---things that might have been trivial in some contexts, but which truly enriched those years.
My goal since the onset of these experiences has been to help however I could when someone else faced a similar situation that would change the meaning of normal. If you are in such a situation, and think more information from me would help, please ask. While I obviously can't give medical or legal advice, I may know sources where you can turn for help that you had not known of or thought about. And I'm happy to share.