Soon, You’ll Be Sorry You Asked

This is a catch-up post. It is intended to let everyone who asks me ‘what have you been up to?’ know EXACTLY what I’ve been up to – much to their regret. There will be swearing, and discussion of my personal life. There will be discussion of elder care and health scares. Just… there’s been a lot.

In short – things sucked for a while. They were scary and uncertain, but now they are much, much better.

June 10th, 2022, I moved into my new (to me) house. After a decade of saving, credit building, penny pinching, relatively cheap living, and grinding through unfulfilling jobs, I did it – I bought a house, which is a journey all its own that I won’t go into right now. Now that I work 100% remote, I realized it was time for a big, big change. In search of seasons and attempting to pick up a thread of adventure of which I’d always dreamed but never pursued – moving out of Florida – I bought a house in a small town outside of Atlanta. The town’s quiet, but it’s close to good things, and only 6 hrs from my elderly parents. Seasons are present but mild in Georgia – there’s cold but rarely snow, so I could enjoy a kind of extended autumn while sporting some of the many scarves, socks, sweaters, and hats I’ve knitted. There’s also little chance of getting lost in a blizzard and freezing to death on the way to the mailbox. July was hot but good as I got some house projects and cleaning done. I unpacked my necessities but left most of my decorations in boxes – the bookcases didn’t survive, so my books and knickknacks are still boxed up. July 4th, some friends came to visit. After an enjoyable weekend, the house was suddenly quiet again and I started to freak out – I am committed to this, I realized. I’m not independently wealthy and if I lost my remote work job, I wouldn’t have much savings to float long while finding another job. The anxiety started to rise.

August 1st, I called my parents for our weekly check in. Dad answered, and it was clear after only a few words he was in shock. It was about Mom.

He’d come home from town to find Mom unconscious and unresponsive in the front yard. She’d fainted, either from a mild stroke or heat exhaustion, fallen onto her rosebush and sustained dreadful cuts. Worst of all, she had lay in full sunlight for hours during the hottest part of the day. She was airlifted to a hospital nearly 50 miles away, and upon admission, was found to have a body temperature of 108F.

This is a temperature at which brain damage, seizures, and death occurs. Further compounding her problems: she has type II Diabetes and is in Stage 4 Renal Failure. “They doctors just aren’t very hopeful,” Dad said. “There’s not much brain activity.”

I was in shock myself at first – I admit. I realized I needed to head down but I couldn’t think straight. I didn’t know what to do, so I had my normal night: I went to bed, where I lay unsleeping until it was time for work. I got up, logged in, explained my situation, and at the urging of coworkers, I realized I needed to leave NOW. I packed up my cat, work computer, some clothes and necessities, and drove back to Florida.

I saw Mom on the 3rd and cried harder than I ever have in my life. She hadn’t regained consciousness, and was a 1 on the Glasgow Coma Scale. Although she hadn’t yet needed hemodialysis before August, she was retaining fluids and looked ghastly. The hospital began her on a regular course of dialysis. EEGs indicated evidence of multiple small strokes and brain damage. She was on a ventilator.

Doctors had discussions with us. My father and I discussed. I discussed with family. We were discussing what to do about my mother’s life. The neurologist urged caution against rash decisions, and counseled patience. I saw the sense of this. A thing done at this stage, can’t be undone.

“She wouldn’t want to be full of tubes, kept alive by machines,” we agreed. My mother’s sister begged me to give her time. My mother’s brother told me I had a hard decision to make (“you have a hard row to hoe,” as he put it), but he trusted me to make the right one. I thought about my mother’s life – how unfair it had been, how unhappy she’d been through much of it, how I wished we had a better relationship, etc. etc. I came to terms with the fact that I’d never hear her speak again. I reread our lasts texts together – banal and short, just questions and answers and no expressions, really.

I didn’t know what to do, so I waited for some kind of sign.

It is an extremely ugly and unacceptable truth of the American healthcare system that ‘the squeaky wheel gets the grease.’ The more you show up, ask or answer questions, and generally make yourself known, your family member will get more care. I don’t mean make a fuss or a scene; treat the healthcare workers with respect and consideration, and don’t forget they have other charges and that a hospital is full of people who all need attention. Take notes, ask questions, and follow through. Do NOT get in the way of the staff. If they say they’re going to do something, hold them to it. Get times, names, dates and descriptions of procedures, ask about drugs, etc. It is possible to be your loved one’s advocate without being their staff’s adversary.

Dad and I made the 50 mile one-way trip every day since the 3rd. That Saturday, he stayed home to rest so I went alone. I walked in to see my mother’s eyes open. This was a shock, but not entirely unexpected: the resident neurologist had told us this might happen, but it didn’t necessarily mean she would have cognition. ‘The lights are on, but nobody’s home,’ goes the expression.

But her lights were on.

She couldn’t move, and talking was impossible due to intubation, but she could squeeze your hand on command, very feebly, and she could track movement – my movement, as I walked around the hospital bed. “Look at your daughter,” they told her, and she looked at me with her dark hazel eyes and I cried as I walked around the bed so she could track the movement. When the nurse asked her if she was born in Alabama, Mom responded with a truly epic eyeroll, proving to me that her personality was still intact (a Georgia peach, through and through). For the next month, Dad and I made the 100-mile round trip almost every day, eating lunch in the hospital cafeteria, grabbing food or cooking in the evenings. I took the first week of August off work, and during the rest of the ordeal I worked in my mother’s hospital room, re-entering the Wifi password every 40 minutes after the connection timed out. Mom came back a little more every day.

“This is good, but she has a hard road ahead,” doctors told us.

That was August.

September and October consisted of the following:

Extubation. Dialysis. Multiple bouts of C. Diff (a dreadful and permanent imbalance in the gut bacteria that must be managed for the rest of a person’s life). Re-learning motor skills. Physical Therapy. Hospice – then realizing she didn’t need hospice, OR palliative care. Nursing home (no matter how highly recommended, all nursing homes are dismal, especially in Florida). Pneumonia. A foley catheter. Depends. A plastic bag taped over the dialysis port in her shoulder (hemodialysis – three times a week, over a multi-hour timespan; all the blood in a human is removed, cleaned, and replaced; that’s the super quick, overly simplified explanation. Blood moves out a port, and into a machine that removes certain toxins, then gets pumped back in. It’s debilitating and exhausting- most hemodialysis patients are in Stage 4 or 5 of renal failure already, and so they need a day to recover from their treatment. The fact that there is no Stage 6 tells you everything you need to know). Fevers. ER visits. Hospital discharges followed by re-entry. Research into eating habits suitable for Chronic Kidney disease. A cull of my parents’ pantry. Reorganizing the house to be wheelchair accessible. Installing a bidet and safety bars by the toilet and in the shower. Bleaching her clothes to kill the C.diff.

During all this, I was living and working out of a guest room in my parents’ house, occasionally going home to Georgia for long weekends to do simple maintenance and/or rest. Thankfully I had a trustworthy neighbor looking after the house. I was also driving my Dad’s Buick Encore because my car was in the shop being fixed – another story on its own.

Mom came home in late September. She was using her wheelchair to get around – mostly from her bed to the recliner or the bathroom or the table, but still, a hell of a lot for somebody about which a hospital had been discussing death certificates and ‘releasing the body’ only two months before. Dialysis was three times a week. I obsessively checked the nutrition information (sodium, potassium, etc) of every item of food she ingested. You’d be amazed how much sodium is in pre-packaged food. Or maybe you wouldn’t.

Dad and I learned together what to feed her, how often, how to help her dress and pick outfits, how to help her up when she falls down, and how to help her wash when she showers. She’s still a fall risk, but she uses a walker in the house more often than a wheelchair these days. In late October, the nephrologist declared that her blood lab numbers had improved to the point where she no longer needed dialysis. This is a huge improvement – we must have spoken to about 10 different nephrologists & nurses over the course of her treatment at various facilities – half said it was possible to come off dialysis; the other half said most people were on it the rest of their (truncated) lives. There was a lot of joy in the house after that. Thanksgiving took place at Perkins, because it was open and nobody was up to cooking.

On Black Friday, November 25th, I packed up Herzog and all our belongings, and came home. We’ve been back since then, working on house projects and settling into our new environs, and I can’t tell you when I was last this happy. My Mom is alive. She can talk, she writes, she texts, she has motor skills and tries to dress herself and sometimes she even gets up and attends to all her medications and such on her own (with my Dad’s supervision).

“You saved your Momma’s life,” my aunt has said on several occasions. “You gave her the time she needed to get better. Thank you for that.”

I don’t think that’s accurate. The hospital and amazing staff brought my mother back from the brink of death, and cared for her for weeks. The nursing home staff maintained that standard of care, and were always so cheerful and positive even when my Mom was cranky or miserable. The home care staff were also heroic. Dad and I were only following the example set by a dedicated and generous group of people. I will credit us with the effort required to take care of an adult human – physically, mentally, and emotionally, it is exhausting. I was tired at the end of September and that was before Mom even came home – after that were multiple middle-of-the-night bathroom trips, cooking for three while adhering to strict dietary requirements, fetching for her, helping her dress, all while balancing a fulltime job. Both parents agreed that I had done as much as I could, and also agreed that if things got to be too much, they would let me hire somebody to come in once or twice a week to help out. She has improved so much they were able to come and visit me for Christmas, although the icy roads meant they put the trip off until the 26th.

There’s been more, mostly to do with home repairs on this older house I’ve bought, moving to a new place almost sight unseen. There’s also unpacking the complex emotional baggage of nearly losing a parent and then not, which brings its own set of strange feelings. So many friends of mine have lost parents, and during the whole thing offered their support. Now my mother is still here, and theirs are still gone; however, everyone has said they don’t resent or begrudge me her good fortune. I believe them, but I still feel for them.

But for now, I am thankful. I am happy. I am making progress on my life after what feels like being on pause for years. For the first time in years, I’m excited about the future and proud of who I am.