by Beth Whitman
Mom stayed at home with Dad and me until she was physically unable to stand. The other determining factor in her decline from Alzheimer’s was that she had become overwhelmed with free-floating anxiety, irritability and fear that had been steadily increasing for about six months.
Her level of distress had started to get out of control, and regular anxiety medications, like Lorazepam, had ceased to be effective. But we had found a dosage of the anti-psychotic Haldol that seemed to keep her relaxed and alert and happy, or at least as happy as any normal person could possibly be when they are faced with no longer being able to function as they used to.
Nevertheless, it soon became impossible to care for Mom at home, and Mom knew it. So we initiated the process of moving her to an Alzheimer’s care facility.
The day of the move she was alert and engaged, and when we got to the facility she was delighted to see new faces and be around the hustle and bustle of activity. There was a noticeably positive bounce in her overall condition. She was again reading short sentences aloud and answering questions with relative coherence. When the doctor came to examine her, he was impressed with her functionality. So impressed, in fact, that he recommended taking her off all medications.
When I heard that I was shocked. We had worked hard to keep Mom functioning with a minimum of medications but now, based on the briefest of encounters, the doctor was going to take an action that I was certain would cause a lot of stress for Mom.
I spoke with the doctor, saying that I completely disagreed with him and that I did NOT think Mom should go off the medications. I said that I understood his impulse, and that I agreed in principle that reducing and even removing medication was a good idea. Indeed, as Mom’s primary caretaker for the past two years, I did not give her medications lightly. I had only used them as a last resort, and that was because Mom needed it. I told the doctor in no uncertain terms that, if she were taken off the meds, within three days she would become inconsolably agitated.
The doctor overruled me. He took her off all medications.
And sure enough, three days later, I came in to visit Mom, and as soon as I walked through the main doorway, I heard a high pitched “WO WO WO WO WO WO WO… NO NO NO NO NO NO NO” coming from down the hallway. Mom was clearly in a disturbed state. When she saw me, she stopped briefly, reached out to me and stuttered, “I, I, love you,” but within a minute, the keening started again, increasing in pitch and volume. “BU B B BU B BU B B B,” she sang out like an opera singer in pain. The staff was at a complete loss — they didn’t know what to do.
I asked if there was a pill they could give her. But the doctor had left no orders, so I went out to the car and got some of the pills that were left over from her prescription. I gave her one and stayed with her, holding her hand and walking with her up and down the hallway until she calmed down a bit. I came in as many times as I could that weekend, to slip her pills, but I was not able to make it in on a regular basis, and her level of distress, though somewhat reduced, was still high.
When the doctor came in on Monday morning, the staff brought him in to see Mom. She was still ululating. He took one look at her and immediately reinstated her prescription: 1 mg Haldol, 3x per day.
This stabilized her, but a month later he wanted to cut her dosage in half. Against my wishes once again. He insisted, and I went along with it as long as she could have access to additional doses “as needed.” I was coming in at least every other day, so I was able to keep a close eye on her and she seemed fairly stable.
A couple of months after that, the doctor said he was concerned with muscle rigidity and wanted to reduce her medication by half again. Muscle rigidity is an irreversible side effect of Haldol, so I understood the doctor’s concern, but I had not seen any evidence of muscle rigidity myself and, besides, I felt that “permanent” was a relative term in someone with late-stage Alzheimer’s. The potential for muscle rigidity needed to be seriously weighed against the already established benefit of effectively keeping agitation and distress at bay.
I was also a little mystified by the thought that someone was seeing muscle rigidity when I was not. So I asked Mom’s hospice nurse (not a regular employee of the facility) to show me what that rigidity would look like. We held Mom’s hand and did the test for rigidity, but it wasn’t there. I started to wonder if Mom was perhaps tensing up around the doctor because she generally resisted being examined. (Her entire life she had resisted seeing the doctor, and the resistance had just gotten more intense as her Alzheimer’s disease progressed.)
Shortly after the second reduction of Haldol, Mom began to show signs of being on the edge. She was not constantly ululating like she had been before, after the doctor took her off the meds completely, but there was a constant distraught expression on her face, and it didn’t take much for her to go back into her plaintive soprano song of “wo wo wo wo wo WO WO WO WO WO…”
Although “as-needed” pills were prescribed in addition to the regular dose of Haldol, I sensed a resistance among the staff to actually dispense an as-needed pill until she was well into an episode. I would often walk in and she would be in distress; however, it was not until I requested the additional medication that they would provide it. I began to automatically order an “as-needed” dose if I saw any sign of distress whatsoever.
I again enlisted the hospice nurse to help me convince the appropriate people at the facility to bring Mom’s dose back up to a level where she was no longer on edge. But I remain unnerved by how much of a battle it has been to keep Mom on a level of medication where she was not consistently agitated.
I know that Alzheimer’s facilities have faced complaints in the past that they over-medicate patients in their care, and I was wary of this potential from the start. But I was unprepared for the fact that the pendulum has swung the other way. Now, as a consequence of the previous reputation, the trend in Alzheimer’s facilities is to under-medicate their patients.
The other thing I was unprepared for was the difference in the cost of the medications themselves.
Because Mom was so healthy prior to her Alzheimer’s, she had chosen to forgo her Medicare Part D Prescription Insurance. So we had been getting her prescriptions filled at our local Hannaford (Maine) Grocery Store. The monthly costs were reasonable, but when Mom entered the Alzheimer’s care facility, we were no longer able to get the prescriptions filled there. Though the Patients’ Bill of Rights allows the residents of the facility to choose where they purchase medications, there is a requirement that all medications come bubble-wrapped, and Hannaford does not bubble-wrap. Instead, we had to go through their designated pharmacy where the costs for the same meds were shockingly higher.
To get a sense of how much higher, take a look at the following comparison:
I considered fighting the stipulation about bubble-wrapping, given that it has increased the cost of Mom’s prescriptions by more than 1000% in some cases, but I’ve grown weary of fighting battles on every front. I’m trying now to be selective about the battles I fight, so that I can focus my energies for the challenge of Mom’s declining condition.
I have to say, the most difficult thing about caring for Mom has been the almost constant energy and attention that’s needed to surmount all the various administrative issues, such as insurance problems, reimbursements, indecipherable bills, monitoring the in-home-care help, figuring out how to access and pay for the nursing home, or hospice (which was a little easier) — it’s an endless bureaucratic obstacle course. Or having to make an emergency visit to the Social Security office when, for some unknown reason, Mom’s payments suddenly stopped arriving.
With every turn, every new little glitch, I had to go through a laborious process of re-establishing myself as someone who could speak for my mother. Even with a full legal and medical Power of Attorney, I still had to go through the process of transmitting and re-transmitting that information to each organization, sometimes having to fax a single place four or five times a day just to get it through, and then calling back every few days to see if it had arrived yet. Sometimes the various systems seemed positively byzantine. The worst was Social Security, which, unlike the rest of the civilized world, doesn’t recognize a Power of Attorney. They have their own designation, called a Representative Payee. In order to attain that designation, one needs to provide two items: a letter from your parent or loved one’s doctor saying that the parent or loved one is too incompetent to represent themselves, and a letter signed by the parent or loved one — you know, the “incompetent” one — designating you as their representative.
It’s the Catchiest-22 of all Catch-22s.
Beth Whitman lives in Maine and is a member of Belfast Cohousing and Ecovillage, a developing community on the coast of Maine focused on multigenerational living and sustainability.