Not sure if this is a Pit rant, or an MPSIMS post.
Not sure if I’m going to post it after I finish writing it. I’ve been composing it inside my head for weeks. Maybe I’ll write it out, then decide to C&P it to a document on my hard drive and just archive it there.
Kaylasmom, my bride of nearly 35 years, has been in problematic health for the past few. She’s blind from birth (being one of an epidemic of baby boomers who, born prematurely, were put in incubators with oxygen levels that caused retinopathy – at the time it was called retrolental fibroplasia, but the term has apparently fallen out of favor, and she is now described as having suffered ROP, Retinopathy of Prematurity – but I digress). She was diagnosed with type II diabetes in 1994. During the period encompassing 1984-2005, it would not have been controversial to characterize her as morbidly obese. Those years did take their toll. She also had high cholesterol, and hypertension.
In 2011, she fell and broke her hip, which was replaced, and the incident led to tests which resulted in a diagnosis of osteopenia, a precursor to osteoporosis (AIUI). The following year, she needed her gallbladder removed, concurrent with recovering from pancreatitis. She’s not a big fan of hospital stays, needless to say.
So it’s good that she was able to stay OUT of hospitals from 2012 until 2017. During the summer of last year, she had what I thought at the time was a bout of pneumonia, so I took her into the ER. Turned out to be Congestive Heart Failure. [Another digression: for a few years, she worked as a darkroom technician in both military and civilian medical facilities, developing all manner of X-rays. During her time in these jobs, she was on hand to witness several cases of patients dying on the table after being injected with contrast for procedures such as angiograms.] These experiences left her with a dread of undergoing any radiological procedures involving catheterization. And of course, the cardiologist wanted to perform an angiogram and possibly angioplasty.
She was extremely anxious about consenting to it, but eventually allowed herself to be talked into it. While the diagnostic went off without complications, it was discovered that her arteries were too narrow to make her a candidate for angioplasty, and with too few “clean” areas to make it feasible to perform bypass surgery. The recommended treatment going forward is a couple of blood thinners, and Lasix (to prevent fluid build-up in her lungs). So she’s been on this regimen for about a year.
This past January, she began displaying signs of loss of cognitive function (short-term memory lapses, false beliefs, and aggressive and hostile interactions). She had been very defensive about any of this being brought to her attention, accusing me of calling her “retarded,” or of planning to put her into an old folks home, or of having affairs with several women, be they workplace associates, her blind girlfriends from childhood, or her sister who lives three hundred miles away. I finally got up enough nerve to brave her wrath by asking her primary care provider to give us a referral to a neurology clinic for evaluation.
Before I was able to get the appointment, she had another bout of what I thought was her CHF acting up, so I had her in the ER again in late May. This time it turned out to BE pneumonia, but also her electrolytes (Na and K) were out of whack, so she was there for three days, getting back under control. the first part of June saw her hospitalized three more times for similar problems, with the presenting symptoms being either low blood sugar or an allergic reaction to one of the blood pressure meds she had been on for the past four years. Eventually, they took her off two of her BP meds (out of four, and her BP is just beautiful these days, tyvm), and doubled her Lasix dosage. They also changed her cardiologist, and she’s pretty happy with him, when she can remember who he is.
Because the dementia symptoms had not yet been addressed. I got her to a neurologist in mid-July, and he ordered a brain MRI, after confirming the aforementioned cognitive symptoms during a consult. He also had her give a couple of test tubes of blood for lab work.
Meanwhile, after a hospitalization in 2017, she complained of pain and numbness in her left leg and foot, which led to a spinal MRI that found a bulging disk. Physical therapy exercises were not particularly effective, so this past February, she was given an epidural injection of Kenalog, which was like a MIRACLE drug for that pain. But it was wearing off by late July (which, I’m given to understand, means that it worked for a good long time), so we set up an appointment to arrange another epidural. As with the first one, the pain specialist wanted her to get her cardiologist to approve taking her off one of her blood thinners for a week. This was her new cardiologist, remember, the one she picked up during her June hospitalizations. He decided that she should have a cardiac stress test before he’d approve it. Which brings us to August 7.
On the morning of August 7, I took kaylasmom out to the car, to drive to the hospital for the stress test. She was feeling a bit unsteady on her feet, so I had her in her wheelchair. When she transferred from the wheelchair to the car, she twisted her right ankle (so, good thing I had the wheelchair handy, right?). When we were having the stress test done, I noticed that the twisted ankle was alarmingly swollen. I got her home, applied Mineral Ice (think Ben-Gay, and you’ll get the drift), and wrapped the ankle in an Ace bandage. Later that afternoon, I got her to a different facility for her MRI.
By Thursday evening, when I was about to go to work, it had become clear that Mineral Ice and a compression bandage were not bringing this ankle back to normal, so on Friday (August 10), I brought her to an urgent care facility that had an X-ray machine. The doctor at the urgent care confirmed that the ankle was in fact broken, and told us to get a cast on it. He also sold us an $80 orthopedic boot, which kaylasmom found too uncomfortable to wear, and also, where’s the other boot (dementia again)?
On Monday the 13th, I got a referral from kaylasmom’s PCP to an orthopedist, who was able to see her that afternoon and put a cast on the ankle. He also noted that her ankle had TWO breaks, based on his reading of the X-ray we had given him. He was concerned that since she had walked on it for three days following the X-ray, that the broken bones might have shifted, so he asked us to get a second X-ray and bring it to him in a week. He also ordered kaylasmom to not put ANY weight on the ankle. The second X-ray (taken on August 18), showed some bone movement as well as that there were actually THREE breaks. The orthopedist said that he wanted to see another X-ray after one more week to be sure, and that if there was any more bone migration, he would have no choice but to recommend surgery on the ankle, and that we should start getting clearance for surgery from her PCP and cardiologist. This whole thing was VERY upsetting to kaylasmom. She declared that she absolutely DID NOT WANT to have surgery, and promised that she would stay off the ankle for the next week (she had not been compliant up until that point, and – spoiler alert – she STILL has not been compliant during the past week, mostly while I’ve been at work. When I catch her trying to hobble around to the kitchen and the dinner table, I put a stop to it ASAP, whereupon she says I’m being mean to her, and not very nice).
Back to the brain stuff. Last week, we got back into the neurologist. Kaylasmom’s MRI showed no evidence of stroke or other injury (YAY!), but there was moderate global cerebral atrophy noted. Neuro guy said that her blood work showed low levels of B1, B12, and thyroid, and he wanted her on supplements and would check her again in December. If no improvement is apparent, he CAN test her cerebral-spinal fluid to diagnose Alzheimer’s, or he can just put her on the meds he would prescribe if Alzheimer’s had been diagnosed. Not great news, but neither is it utterly hopeless, yet.
So yesterday (the 27th), I took kaylasmom to an imaging center for her third ankle X-ray, which we immediately brought to the orthopedist. If you read the spoiler alert earlier about her compliance with the no-walking order, it should come as no surprise that he found significant further movement of the broken bones, and was urging her in no uncertain terms to accept the repair surgery. Before we were out of the office, kaylasmom seemed to have agreed to it (although you could tell she was heartbroken about it), and the doctor gave us a list of things we’d need to get her cleared for surgery this Friday.
Ten minutes after we left the office, kaylasmom was in tears again, accusing me of planning this whole thing and springing it on her with no warning at all. I brought her home and put her to bed, and went back to her PCP’s office to obtain orders for blood work, an EKG and a chest X-ray. By later in the evening, she had calmed down considerably, and seemed to accept that the choice she was being asked to make was NOT between surgery and no-surgery, but rather between having a healed ankle and having a crippled ankle for the rest of her life.
We had a (previously scheduled) appointment with her cardiologist this morning. I explained the situation to him, and he (having seen her stress test three weeks ago) unreservedly cleared her for anesthesia. I asked if he could do the EKG right then and there, and he agreed. For her part, kaylasmom cooperated with the EKG while it was happening, although she was impatient with the medical assistant and PA trainee, who would quietly talk each other through the steps (“Please don’t whisper!”). And when we were driving home, she was again accusing me of planning this without her consent, of not being very nice to her, of bullying her and forcing her to have the surgery, and of deliberately breaking her ankle so I can have her put into the hospital.
When we got home, I put her wheelchair at the dining room table, and went into the bedroom to change the sheets (because it hasn’t been done in a couple of months). She tried to get out of the chair AGAIN. I put her on the bedside commode per her request, and went on changing the sheets. She sat down on the bed while I was doing that, so I put her back in the wheelchair and wheeled her back to the dining room table, with her grabbing onto the door jamb, and the piano to try to stop me. Then when I had the bed made, she didn’t want to help me assist her into bed. I had to pick her up in my arms and lay her down on the bed. Half an hour later, the back of her right hand was swollen to the size of a fig (a large fig. Or a small pear). I’m concerned she might have broken it while trying to stop me from wheeling her out of the room. And if THAT’s the case, I need to worry about whether she’s got some form of wasting disease that makes your bones brittle, and your skin prone to bruising (I had her wedding ring re-sized in June, and now rings are practically spinning around on the fingers of both her hands).
I’m honestly at my wit’s end here. I discussed it with my sister (PhD. in medical ethics) by text in the spring, and she advised me to look into getting a medical power of attorney for kaylasmom’s treatment, but I kept putting it off, and now it looks kind of late to do that in time to authorize the surgery (hey, if she’s going to accuse me of forcing her to get the surgery that is clearly in her best interest, I might as well be guilty of it, right?). I find myself wondering if this counts as being a danger to herself so she could be subjected to a 5150, and would THAT allow me to authorize the surgery against her stated wishes? (Almost certainly not, and I’m ashamed of myself for entertaining the idea.) I’m also contemplating advising orthopedists to put a caltrop inside the bottom of any cast they apply, just to enforce compliance.
I just don’t know what to do. I promised more than a quarter-century ago that I would be with her for the rest of my life, and that’s still what I intend to do. I just don’t know how long I’ll be able to keep it up before the task kills me.
