The Road Goes Ever On

[pameladlloyd]

It's been a little more than seven years since I last posted here. That's a long time. Long enough for a trip to fairy, or at least for a very short trip to fairy.

A lot has changed, a lot has stayed the same.

TRIGGER WARNING: This story has multiple mentions of trauma, including medical issues, some described relatively graphically, and death. Also, some less graphic mentions of prolonged stress, grief, and depression. The difficult stuff is hidden behind the cut.

My father, who lived in El Paso, was becoming more and more ill, while also refusing to acknowledge that his health was failing. After my youngest brother's sudden death from a heart attack in 2010 left my father alone, I started making more and more frequent visits to him, trying to make his life a little better, and generally failing as soon as I came home again. When I tried to get home healthcare for him, as soon as I left, he told them he didn't need them. When I tried to take his keys away, worried by both neurological issues and loss of his field of vision due to macular degeneration, and leaving my daughter to stay with him to act as a driver, he managed to get the keys back. He also disparaged me to her, and made her feel very unhappy and unsafe. So, I told her to come back to Tucson. I actually lost my job, due to the strain of trying to take care of my dad while also trying to manage a full-time workload, which left me feeling depressed and anxious.

Finally, in September of 2019, Dad was hospitalized. His doctors told me he almost died at home; that he had lost the ability to care for himself to the point that he could no longer feed himself. I had been calling and talking to him almost every day, and my dad never let on about what was happening. But, finally, in the hospital he realized that he needed help and asked to come live with me. Which, since my house was too full, and not a place he would be able to navigate in a wheelchair, meant I rented a two-bedroom apartment nearby, and he and I moved in in early October 2019. I did everything I could to care for him, running myself ragged as I found new doctors to care for him and took him to multiple appointments.

By this time, my dad had been on home dialysis for approximately two years, and had already survived an infection at the port site, due to poor hygiene. The apartment baths only had tubs, so I had to find and install a portable tub chair that extended out to allow easy transfer from the wheelchair to the tub, and I also installed a hand-held extension, to put the water in easy reach. At night, I had to "help" with the home dialysis, and exercise that was complicated by his desire to do this for himself and my insistence on proper sterile technique. When he started letting me take over more of the process, it was a relief.

Outings were hard, and always difficult. I had to push his wheelchair when we went out, help him from the wheelchair into the car, lift the wheelchair into the trunk, reverse the process when we got to our destination, and then do it all over again when it was time to return home. I did all this while in physical pain that I just ignored because in September I had torn my trapezius muscle, but had not realized how severe the injury was. Taking my dad shopping was draining for both of us, so I would wait until he'd fallen asleep, then slip out to go to the grocery store.

Although my family was nearby, they were undergoing their own stresses, so they weren't able to be as much help to me as I had hoped. My husband was having a hard time keeping up with everything that needed to be done, and my absence was stressful. We didn't know it at the time, but he was working up to a heart attack, and probably in some kind of heart failure. Frustratingly, I had seen that signs a year before and urged my husband to see a cardiologist, which he did, only to have the doctor dismiss him as having no heart problems. I tried to get my husband to seek a second opinion, preferably with my cardiologist, but he felt he had his answer and continued to push himself to just work a bit harder every day.

In mid-December, my father had a heart attack. I heard him in the bathroom, and there was a thump that bothered me, so I got up and went into his room. I found him in his wheelchair, unconscious and not breathing, with his head fallen back and hanging over the back of the chair, and his feet up against the tub. The position of his head was wrong, so I lifted it, which started his breathing back again. I called 911 on my cellphone, which I'd fortunately brought with me, and the EMTs arrived about 5 minutes later. By the time they arrived, my dad was sitting up in his wheelchair, talking coherently, and thought I was being dramatic. The EMTs thought so, too, as he didn't look like he'd just had a heart attack. I insisted that he be checked out at the hospital, which was just across the street a block down from my dad's apartment. There, they confirmed the heart attack and he was checked in. The doctors put a couple of stents in, but there was a procedure they thought he needed, only the expert in this procedure (my cardiologist, who by this time was also my dad's), was out of town. So, my dad was transferred to a nursing facility for the three days we needed to wait, and after just two days, had a second heart attack, with me in the room. I called for help, by chance the EMTs were already in the building, so he got almost immediate care, and was whisked away to another hospital, where he was soon declared dead.

I needed time to grieve, and didn't return to work immediately after my dad's death. I'm glad I had that time.

In October 2017, Judy, my second cousin whom I had never met, came out to visit. I had never even known she existed until she contacted me a few years before, after finding me on a genealogy site. Together, we drove north to visit more family I'd never met, stopping along the way to visit various historic and geographical sites, including the Grand Canyon. Judy and I had a wonderful visit with Judy's uncle—my mother's cousin, now in his 90s—his wife, their daughter and her husband, and Judy's sister and her husband. I went from knowing none of my mother's extended family to feeling very much a part of it. Judy and I returned to Tucson and she flew back home to North Carolina, and I returned to life as normal. For a few weeks.

Shortly before Thanksgiving, my husband had a heart attack. They attempted a stent, but his condition was too serious, and so they switched tactics. The next morning, he was prepped for what was supposed to be a quintuple bypass. They operated all day, working past the usual 8-hour cut-off, then finally had to say they were done after performing a quadruple bypass. The remaining vessel, they had determined, was not in good enough condition for the operation, and he needed off the heart-lung machine. He was brought to the C-ICU. His oldest son and I took turns staying with him each night, so that there was always one of us in the room, with the exception of bathroom or meal breaks, and one of us at home to make sure things were steady there, as well. Much of that time is a nightmarish blur, but a few moments stand out. The most dramatic of these occurred as my husband was beginning to come awake after at least a day, if not two, of being sedated in what I now suspect was a medically induced coma. Waking in pain and not at that moment aware of his situation, he discovered the bundle of tubes emerging from his chest and interpreted them as a danger. Fortunately, I was there, and managed to hold him back from ripping them from his chest before help arrived. By the time we got him restrained and he was once more sedated, it had taken six hospital personnel, plus me, to save his life. Had he pulled those tubes out, he most likely would have bled out before anything could have been done. After about two weeks, he was moved to a medium-level care unit, and finally discharged to home.

In the weeks and months following, tests showed that he has a form of congestive heart failure called Heart Failure with Preserved Ejection Fraction (HFpEF). You can read more about it here: Heart failure with preserved ejection fraction (HFpEF): More than diastolic dysfunction. Because it's less-common, less is known about it. According to the article just referenced, "Clinical trials have not yet identified effective treatments for HFpEF."

Less than a year after his heart attack, we were back in the ER with my husband, whose blood pressure had dropped, making him feel weak and dizzy. They ran a number of tests, mostly concentrating on heart issues, and were unable to find anything. They were about to release him when he asked to go to the bathroom. He came out a few minutes later and told me there was blood in the toilet. A lot of blood. We informed the ER staff they ran another test, then sent him into emergency surgery. He had a hole in his colon the size of a quarter. The only reason he hadn't bled out was that it was pressed against his bladder, which had slowed the leak. He spent less time in the hospital after that, but when they sent him home, it was with a gaping wound that extended from just under the scar left by his heart surgery, around his belly button, and to just above the groin area. It was my job to wash the wound out every day, repack where appropriate, and rebandage it. Sterile practice for the win, no infection developed.

From the time of my husband's heart attack, even before the diagnosis of the heart failure, we were told that the single most important thing he required was to cut back on sodium. As one doctor put it, we can treat fat with statins, but there isn't any medication that can combat excessive sodium, and the sodium will kill you. Before my husband even left the hospital, his sons—who had long been chef's helpers in the kitchen and were already solid cooks on their own—were bring low-sodium meals for him, and the whole family was eating the same food. We shared some with the C-ICU staff, and they were very impressed. Some meals, we soon discovered, are easier to make low-sodium than others. But, my family of cooks has figured out how to make stellar meals that are low in sodium and taste great.

While I'm talking about low-sodium foods, I want to mention the restaurant we ate at last night, in honor of my husband on Father's Day. Golden House Healthy Chinese Food is a wonderful, amazing place to eat. We had planned to eat elsewhere, but found when we arrived that they were not currently offering a dine-in opportunity, and now that we are all vaccinated, we wanted to eat out for the first time as a family since Covid hit. A few internet searches later, we were on the road to Golden House, not knowing what to expect. It was busy when we first arrived, but not yet full, and we were seated immediately by a cheerful, welcoming woman whom we later learned is Ming, the owner of the restaurant. We went a bit overboard in terms of our order, getting appetizers and lots of variety, because we were feeling so celebratory. The staff were wonderful, and the food arrived very quickly. Everything that should be served hot was piping hot. Ming made sure that our son with Down Syndrome knew that the soup being placed in front of him was hot. The vegetables were fresh and crisp, just a bit nouvelle, but not overly so. Just right, so that the food would not only taste good at that meal, but the leftovers will still have a bit of crispness.

I should mention the menu. It's really impressive in terms of the wide variety of healthy food options available. Everything is low-sodium, you can select gluten free, vegetarian, and vegan meals from the menu, but they also serve carnivores, so even the most steadfast meat-eater will find a wide selection to choose from.
Here, let me share a photo or two that I took of our vegetarian meal at Golden House:







You can request white or brown rice. They will do substitutions. You can ask for extra veggies on every dish. I'm sure I'm forgetting about half of the selections! They offer a selection of teas, bobas (aka boba tea), sodas, wines, and beers. I ordered a coconut boba, which was delicious, and frosty cold. I chose this, but I was forgetting that icy drinks can trigger my asthma. When I asked for a glass of room temperature water, it was delivered quickly and without fuss, no explanation needed.

So, all this stuff happened. There was more stuff. Maybe I'll tell you in a future post. Maybe I'll spare you the other difficult details and just jump to the good stuff. There has been good stuff. Most especially, my immediate family has been spared any deaths from covid. My daughter got it. It was scary, as she was ill enough to spend several days in the ICU, but she recovered and, despite a number of other health issues, seems not to be plagued by the lingering effects that have effected others.

My family has also been very lucky in that I was able to switch to working from home with very little difficulty when the covid restrictions started, so my family's income has not been negatively impacted. Given the choice, I would prefer to keep working from home, so I hope my employer won't make me choose between staying home and staying employed. So, right now, I'm employed full-time, working from home, and working on finding ways to make my life even better. That's not a bad place to be.