Helen comes and goes
The day after pulling Julie’s button, Helen fell again and ended up in the ER from a panic attack. She had another panic attack the night after we had Julie’s independence party. No one told her about Julie’s status or the party, but she managed to find a way to firmly interject herself into the week. All these developments assured us that Helen would need to go to a nursing home.
According to Helen, she could still walk, drive, and live at home with minimal assistance. When I confronted her with the falls, trips to the ER, times of confusion, and evaluations from the therapists, she would just make excuses. It looked like a long battle, but I hoped for another few weeks for her to recover in the rehab hospital before making the hard decision.
The rehab hospital offered no help except a catalog of nursing homes. Then, I got word that they would release Helen within a few days. Her Medicare benefits would run out soon and they had no choice. Once they learned that I lived at home with her, they never asked whether I could take care of her. I was on my own.
Helen had also plateaued with physical therapy. Her months of arguing, patronizing, and denial had finally caught up with her. She tried to claim that they “graduated” her because of her progress, but truth be told, she just wouldn’t or couldn’t master walking without constant reminders of where to place her feet, “stand up straight,” “don’t push the walker out too far,” etc. I started attending Helen’s morning therapy sessions so I could understand her limits and how to work with her. I would double up with evening visits just to chat. All this while Julie continued oral feeding therapy (and meals still took over an hour to complete). I longed for the relative peace, quiet, and paycheck of a 40-hour-per-week job, even with 7×24 on-call pager and a busted computer with world-wide implications.
The rehab hospital discharged Helen on the same day as her follow-up visit with the hip surgeon. He gave her a clean report and lifted the hip restrictions, so Helen felt vindicated for resisting the overly cautious nurses, therapists, and children. In that first weekend, Helen fell once and made several messes in the bathroom (including a large trail). All the while, I rarely left her side from when she woke up in the morning to when she went to bed at night. April arrived again and helped with the transition to home, but it took two of us to keep up. After April left, Helen fell hard again and then got a stomach bug which led to seven consecutive messes in the bed or bathroom (or in-between) in one night.
After that, the in-home therapy people arrived and began regular bathing, physical therapy, and occupational therapy with Helen. Helen continued fighting the therapists, but welcomed the bathing assistant and nurse warmly (once she learned the difference between all of these people). They continued coming for about six weeks until they concluded that Helen would not cooperate with them.
This whole cycle of incontinence, falling, therapy, confusion, and dementia continued for nearly two months. All the while, I kept encouraging Helen to go to visit April. Back at Thanksgiving of 2013, Helen insisted that her children meet with her to determine who would take care of Helen when she became unable to live in her house. April volunteered and nobody objected – end of story. Now Helen refused to admit that she couldn’t live in her house anymore, so I pushed her to visit April and see how it worked.
About that time, the in-home nurse noticed a side-effect of one of Helen’s drugs – incontinence. We changed out the drug for another one and most of Helen’s problems resolved themselves within a few days. After a decade of fighting this problem, we greatly resolved it with just one small change!
Helen had also just completed all of her doctor appointments and now had a window of about 2-3 months without any planned appointments. I pushed Helen again to fly to North Caroline and visit April. After many strong conversations, Helen asked me a strange question. She realized that I would have to drive her belongings (and support equipment) while she flew, so she asked whether I would drive her there, too.
I thought long and hard about the complications of transporting a woman with all her physical problems across the country before reluctantly agreeing. As if by magic, Helen completely changed her tune. She now looked forward to the trip and called all her friends using the same reasons I had given her over the previous months for her sudden change of heart. We both liked it better when it was her idea.
Then, quite unexpectedly my #1 sister-in-law volunteered to drive Helen. Becky even agreed to fly out from Los Angeles, CA within three days to make the trip. She would rent an SUV and make some visits to other family members after dropping off Helen. After starting and stopping arrangements to take Helen into her small apartment, April now had just a few days before Helen arrived.
Julie comes and Adam goes
Julie graduated her therapy just before her pre-school started for the new year. She had learned to chew and swallow a full range of foods except some of the hardest things like steaks and nuts. Her speech had improved over the summer, too. This surprised the pre-school teachers as did her lack of a feeding tube.
The school nurse gave Sarah and I some grief about removing Julie’s mickey button. Once we filled in enough forms, she forgave us for not asking her permission first. Poor lady has so much paperwork to avoid lawsuits that she forgot how to celebrate success.
Right in the middle of dealing with Helen, the start of school, and therapy appointments, we finally got our chance for the kids to see the dentist. We had to wait for over four months for this appointment, so we couldn’t hardly let anything interfere. I made sure I caught up on all Helen’s needs (food, drink, medicine, and toilet) and we headed out. The office was jammed and we waited for hours. By this time neither Adam nor Julie had any interest in even letting the staff do an X-ray. We were past time we told Helen that we would return, neither kid had had any procedure yet, and I worried that the trip would be a bust.
The dental hygienist was amazing. She took both kids at the same time and let Sarah and I watched as she worked. After some coaxing, Julie let her examine and clean her teeth. Adam was a little more resistant. Over all, Julie’s teeth didn’t need any major cleaning procedure like she did last year. Her eating (and Sarah’s nightly brushing ritual) had reduced the major build-up.
On the way home, we ran into two or three traffic jams which continued to delay our two-hour trip to over four hours. When we arrived, Helen had crawled to the door and was trying to attract attention of passers-by. She had fallen, bumped her head, and could figure out how to call 911 on the phone. The ambulance took her to the ER who released her several hours later with a staple in a laceration to the head. I we had only arrived 20 minutes earlier, we probably would have avoided the entire incident. Helen now has a life alert button.
When we took Adam in for his two-year check-up and shots, we mentioned to the doctor about his speech issues. He didn’t use any words; just point and grunt. Since we had such good luck with Julie’s therapy, we sought some therapy for Adam to get him started. It took a month to get an opening, so they evaluated Adam the day before Helen left for North Carolina. By the end of September, he had only two therapy sessions and progressed quickly. He had already begun using a couple of words and a small range of sounds.
Sarah dealt with the changes as best as she could. We gradually emerged from the basement while Helen recovered at the rehab hospital, then she and kids retreated back to the basement when Helen returned. She came out almost immediately once Helen left for NC, but it took me a week to clean the upstairs suitably for the kids.