Life Is What Happens To You...

Those of you who still try to keep up with my occasional writings may have noticed that I've been absent from these pages for many weeks now. I've posted nothing personal, and I haven't even kept up with my "Fifty Years Ago" columns.

Here's why.

Susan fell down a half a flight of stairs on May 19th, resulting in severe multiple fractures in her left leg necessitating surgery and an external fixation device (look it up on Google and you’ll see something that looks like a Clive Barker nightmare). During the surgery, she suffered a stroke that impacted her right side; thankfully, it’s not a major stroke, but within ten seconds of the time she woke up from anesthesia, I told them that something was wrong with her right hand and her right leg. CT scans confirmed my fears. This leaves her unable to use her left leg due to the fixation device, and limited on use of her right side due to the stroke.

The CT scan also gave us the news that she had suffered at least two other minor strokes that we had not known about prior to her coming to the hospital. The neurologist guessed that they were both at least a year old or more. He said that an MRI would give him more information about the strokes, but as long as she was wearing the metal fixator device on her leg, an MRI was impossible.

During the next five days, she suffered a potassium crash that required IV potassium (which is extremely painful--so much so that this is one of the drugs that the ACLU sometimes objects to in lethal injection cases as being "cruel and unusual punishment"); a blood sugar event that pushed her into diabetic range; and a cardiac issue that saw her heart function fall from 60% to 30%.

In spite of all this, the hospital deemed her medically ready for dismissal, so they sent her to Signature Healthcare of Marietta, a rehab facility that ignored her for almost two days—refusing to respond to her call button requests for help, serving her half meals, losing most of her prescriptions and not following her dosage schedule on the prescriptions they did have, and more. (The one time she saw a physical therapist, he seemed unaware and doubtful that she had a stroke, so he and his aide simply lifted her out of bed, put her in  wheelchair... and then they went to lunch, leaving a bedpan dependent patient to fend for herself alone in her room. I got back to the facility to find her suffering an anxiety attack in the chair with no one offering her any help; once I found out what happened, I found the therapist and made him put his lunch aside and assist me in getting her back into bed.) 

The facility was decorated in 1950s-Panama-City-Beach-hotel decor that may have been purchased that far back; the air conditioning in her room wasn't working on a 90 degree day; her dinner consisted of white rice with nine kidney beans and a single roll. Other patients wandered into her room at random (the facility is both a nursing home and a rehab facility), making me wish that the nursing staff could make as many unrequested appearances. After two days of this, I took her home “against medical advice.” As a final offense, the facility told the ambulance to be sure to charge me up front for the transport. (I have begun formal grievance processes regarding Signature Healthcare with both the state and my insurance company.)

I have been providing most of Susan’s health care since then, which leaves me with less time to write (or to work in the store, or to do anything else) than usual. I hope that things will stabilize in the not-too-distant future. It is a challenging time for us right now, and I’m still trying to find a new normal.

She did relatively well at home for the first two weeks, working with physical and occupational therapy and trying to get to the point where she could stand up. Then, on June 14th (the day before our 48th wedding anniversary and the 51st anniversary of our first meeting), she suffered what was initially diagnosed as a major stroke. Thankfully, that was wrong: she had suffered another minor stroke and a major seizure. No one had informed me that many stroke patients have seizures as a result.  Tests revealed that Susan had suffered two more minor strokes since leaving the hospital, bringing her stroke count to five. Keppra, an anti-seizure medication, was added to her new daily assortment of fourteen pills. 

The strokes and seizure caused a great deal of language issues; she could no longer find the right words to tell me what was wrong, what she needed, etc. The former English teacher in me led me to notice that she could not verbalize direct objects. For instance, she could say every word in the sentence, "Could you get me..." but the next word--the important word that told whether she needed the bedpan or a TV remote or a drink of water or something to eat or a pain pill--eluded her. Sometimes she latches onto a word or sound and just repeats it for a half-hour or more.  Other times, everything she says sounds like syllable salad. I asked her if she knew the words were coming out wrong, and she said "yes." For her, this is one of the most frustrating effects of all. The stroke took away her beautiful handwriting (she can now crudely scrawl her signature and a few recognizable words) and her ability to type, and now it had hampered her ability to speak. She was being cut off from the world around her.

The new neurological issues have also caused physical setbacks. All the positive gains she had made in physical and occupational therapy have been negated; in fact, she may be even worse off now than she was in the week after the May 20th stroke. The accompanying confusion and lack of coordination has left her unable to use a phone or a TV remote.

Keppra, the anti-seizure medication, also comes with its own problems. For one thing, Keppra makes some people confused, anxious, angry, and hostile. Susan is one of those people. She would experience hours-long meltdowns that left her physically exhausted. The next day, she would not remember them at all. At one time, I showed her a few moments of our home security cam footage of one of those meltdowns; it was hard for Susan to believe this was really her. 

The hospital neurologist finally got back to me with a plan to replace Keppra with Trileptal, another anti-seizure medication; he worked out a three-week schedule for the gradual transition, but a week into it, Susan became belligerent. She was not going to take Keppra again. She would spit that specific pill out, while taking her other medications. I told the visiting nurse, who asked Susan about it. "I won't take it," she declared. She understands that such a change might trigger more seizures, but as the nurse said, she has her faculties and is refusing that specific medication, and there is nothing else that we can do other than try to talk her into reconsidering. 

This week brought new problems: an eye infection (blepharitis) and a urinary tract infection. The UTI began on July 4th, when most pharmacies were closed. Had my best friend Charles Rutledge not gone to the nearest open pharmacy some 10 miles away and picked up the prescription for me, I have no idea what we would have done.

Susan remains bed-bound and bedpan dependent. She still has trouble sitting up and cannot stand. She has little appetite, and has probably lost 25 pounds since this began. (I lost 25 pounds in the first six weeks after my heart attack, but neither is a diet plan I recommend.)

Yesterday, in a conversation with me, she said, "I think I might have to go to the hospital again soon." A minute later, she said, "I don't think I'll come back home."  That was a conversation I never hoped to have; it still devastates me when I recall it. I can only hope that she is wrong.