Medical Troubles, Part 2
MEDICAL TROUBLES—PART 2
The biggest event ever was a serious fall in October, 2019. The surveillance video in the hall made it clear: She was walking down the hall at a reasonable rate very early in the morning; then she paused; her head tilted back; then the whole body went straight backwards. She lay on the floor on her back, flailing in an apparent seizure. Whether a seizure caused the fall was a critical question. Based on reviewing the video, the nursing staff saw the initial part as a seizure; neurologists indicated that was possible but not clear. The Emergency Room at the local hospital admitted her and did an MRI, showing that the back of the skull was cracked and that there were 3 minor bleeds. The ER physician asked me if she had an advance directive; I said, “Yes.” Then he asked if she would want to have brain surgery. This terrified me so much I was unable to answer. And fortunately for her subsequently (though not for my then state of mind) it was a premature question. Don’t jump to conclusions even if that seems to be where the medical system is headed. And be prepared (as much as one can) for this kind of situation as you will likely be faced with several.
Multiple MRIs over the next two days showed that the bleeding had stopped and that she was improving. Admission to the hospital was followed by the various Therapists. Occupational and Physical Therapists worked on bringing back motor skills, especially walking safely. Speech Therapists dealt with swallowing, mostly in connection with eating and drinking. These therapies are all very important in such a case.
In about a week, we moved into a rehabilitation facility. Remarkably some peculiar state regulation meant that she could not have these therapies in our Memory care facility. Licensing and regulations can result in strange rules. We moved into a temporary rehabilitation facility that took good care of her and I visited a lot. And more Occupation, Physical, and Speech Therapy. In a few more weeks we were back in our home facility
The difficulty at the rehabilitation facility and thereafter at our memory facility was that she had unusual angry outbursts, typically in the evening. There was, for her, severe anger, with physical fights with caregivers, sometimes about removing clothes to put on pajamas. This was not ever before an issue; anger was not what Alzheimer’s had done to her before. One night two of the caregivers went in together to force the issue; there was screaming but stayed out of it. The next day I went to the Director of Nursing, not to complain but to make my position clear. There should never be an escalation over pajamas; she could sleep in her day clothes rather than have a fight.
There were multiple possible explanations of her stronger emotional reactions: 1) A continuing development of Alzheimer’s, for which such a reaction is common. And the disease process may have been facilitated by a head injury. 2) The head injury from the fall, which included bleeding in the brain. 3) A (maybe) seizure which precipitated the fall. 4) A change of medications to the one recommended by the neurologist as a preventative for seizures.
I was convinced that the problem was the change in medication to a strong anti-seizure drug. My justification based in part on the fact that there was not a clear-cut seizure causing the fall and no evidence of seizure activity from an EEG performed while she was in the hospital. . Advanced Alzheimer’s patients have seizures with some probability, but they were characterized as typically “nonrecurrent.” The description of the new drug made it clear that side effects were serious fatigue and irritability. I was against the anti-seizure medication as unnecessary and disruptive to her functioning. I did not get much immediate buy in from the physician who was following Standard of Care for this situation, which might yet involve a seizure. Still my argument was that she had always indicated a strong preference for “Quality of Life.” Besides the angry outbursts there was extreme (for her) fatigue during much of the day with serious repeated nap times; that was not like her.
The physician finally agreed to a phase out of this medication and immediately cut it back by slightly. This did not change the issue much and that was the extent of the cut back for a couple of months. Then she had several unusual angry outbursts during the day time, including throwing a chair across a public area. I did not see any of these, but I had good sources of information. This alerted me to take further action about the drug. So I wrote an extended memo to the physician stating in writing that I wanted her to have what she had always wanted, namely “Quality of Life.” Further, on recommendation of an M. D. friend, I added a statement that I would accept liability if something went wrong with getting her off of this drug, namely a seizure. The physician in charge immediately agreed to go back to a previous medication that had some anti-seizure effects, so the nurses began giving a mixed dose of the old and the new drugs. Within two days, there was a magical change. The complete changeover to the different drug had an enormous effect on her everyday attitude and functioning. She was happy and laughed a lot and was rarely irritable. And she was also less tired. This has continued to be true since then.
And most recently, there has been another awful consequence of COVID. Beverly is losing her sight in multiple ways. She is totally blind in the left eye since childhood. The Alzheimer’s has a brain effect on the visual cortex which was happening to her, it appeared. She has a cataract on the good eye, though it is marginal and they prefer not to operate. More significantly she has wet age-related macular degeneration and has had 5 shots in the eye for that. But since the COVID lockup of the facility, she cannot leave to get the needed shots. Of course, all of the treatment is complicated by the Alzheimer’s. It has been very difficult to get photographs of the retina to see how the degeneration is progressing. And it is not easy to administer all the drops and finally the shot into the eye. And, of course, being tested with the eye chart is not possible, so it is unclear how good her vision is. An aftereffect of numbing the eye with betadine ios a strong burning sensation on the eye’s surface. I would hate for anyone else to take her for this and other reasons. But will she get treated before the sight is almost totally gone from the macula? I have followed up on getting these shots by contacting her eye doctor and then talking with her facility; the shot will be scheduled!! Hooray!
The moral of these stories for loved ones needing various medical interventions:
1) Get to know and talk with nurses (who tend to get the most knowledge about functioning) and, of course, the physician(s) involved.
2) Also, know and talk to those who see the most of your loved ones, specifically the aides/caregivers. (They told me about throwing a chair across the room and other outbursts.) The aides do not have the medical knowledge, but they have, and may share, information others would not tell you.
3) Your decisions should be, as stated above, based on the standard your loved one always wanted before dementia and on their comfort.
4) Standard of Care is something you will surely run into. While it is related to medical issues, it also is connected to legal issues. The physician wants to be protected against being charged with not following proper practice. Standard of Care may not be best for your loved one. Be assertive about your loved one’s preferences and needs. Persistent plus insistent.
5) But never forget that individuals are not all the same. Not everything that goes wrong with your loved one is a simple result of Alzheimer’s as these medical issues (Part 1 & 2) show.
6) You may have to take charge in a new way since he or she cannot! And, as in dealing with medical treatment for a child, it is sometimes difficult to know what the person is feeling. And this is more difficult than with a child!
7) And persistence is important in many of these Medical Problems!