So far I have written about more recent events. Today I am going back to when I was working and the difficulty of working thousands of miles from my parents. One major event occurred while I was en-route to visit my family on the East Coast. It was an all day trip with plane changes and weather delays. I landed past midnight and went straight to bed. My son left for work early and I rose more leisurely. I turned on the computer and saw multiple emails from my brother (BR). I turned on my cell and there were 6 calls from him also. As I listened to the messages, he became more and more agitated at not reaching me. Mom was sick and getting sicker by the hour. He didn’t know what to do. By the last call he had finally taken her to the ER and she was admitted.
I telephoned BR and he told me the details. There was to be surgery the following morning and I must immediately travel there – about 8 hours by train or faster if I flew. I was scheduled to be there the following week for which I already had tickets. I told him that since I wasn’t the surgeon, they could keep in touch with me by phone and allow me to see my children and grandchildren for a few days first (since I hadn’t seen them in a year and I had very limited vacation time). I got the name of doctors and hospital and began making calls to both. They gave me no information claiming they couldn’t because of HIPAA.
(Now a word about HIPAA http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/index.html since that was actually my job – enforcing HIPAA in our agency). I told them that HIPAA did NOT preclude them from giving me any information unless my mother or brother had specifically said not to. Read the law I said, but of course, they didn’t. Hospital and medical policies are written by lawyers who will be proactive to prevent lawsuits. They are more afraid of saying too much than they are of meeting the informational needs of patients and their families. In any case, the doctor was not available and the nurse wouldn’t tell me anything. I tried to reach a doctor for several days and was unsuccessful.
I remained with my son and daughter for several days, trying to squeeze in a week’s visit with quickly growing grandchildren while calling doctors long distance. Each day my brother insisted they would do surgery “the next day” and I had to be there as she was very ill.
On the third day I was again talking to a nurse who “couldn’t tell me anything unless I reached the doctor”. I asked her: “If it was your mother, would you fly here right away?” She said yes, she thought it WAS that serious. So I left my children and went directly to the hospital hundreds of miles away to see mom. Finally I was able to get details from the doctors.
Mom was seriously ill, but in her mid-80’s, so they wanted to delay surgery by using more conservative treatments in hopes the issue would resolve itself. They withheld food and water, just fed her through an IV and gave her medications and daily CAT scans, etc. This went on for 10 days and it worked. They avoided surgery and mom was released. I insisted she get help at home – a visiting nurse, etc. Mom is fiercely independent and within a few days she had told the visiting nurse she didn’t need her anymore and let her go. BR wanted me to move mom and dad to a “nursing home” so he wouldn’t have to deal with the next crisis. That wasn’t my decision. Mom and dad were competent to make their own decisions at that time and they did not want to move to assisted living or an independent senior community.
I had to return home to my job thousands of miles away. When I returned to work, I asked if I could convert my vacation time to sick time except for those days I was with my children. They agreed– but I had to fill out the paperwork for the Family and Medical Leave Act (FMLA) http://www.dol.gov/whd/regs/compliance/whdfs28.pdf and count that time towards the 12 weeks available to me under FMLA. The paperwork involved statements and signatures from mom’s physicians and from me. It took awhile but was worth the effort. I had 12 months covered by FMLA if I needed to leave again. (I would have to accumulate the sick leave or “borrow some from a friend” when I needed it.)Amazingly mom made a good recovery. She lived more than 5 years after that with little to show from that episode. Of course, she continued to show signs of aging, and other problems came up, but for that moment everything went “back to normal”.
I was nervous however about the “next crisis” and how I would handle it. I began to research options to oversee mom’s care long distance. Clearly BR couldn’t or wouldn’t do anything other than call me – even though he lived in the house with my parents. It was up to me to find the support system to cover contingencies. I learned my large employer had an Employee Assistance Program (EAP) that included contacts and information about caring for elderly family members and I made contact with them.