An epic quest for answers, in my own small way, striving for some measure of validation and understanding for Mom’s life, her choices, her mistakes, her resilience. I joke that opportunity knocks, but only if it can find your door. Instability was the one constant as the youngest of mom’s children. Without a doubt, potential that is not nurtured withers into mere existence in life. Mine is a small life, illuminated by the hearts of my family.

              “I was always told to never let doctors give me codeine after surgery.”

 

              Communication impairment comes in different flavors. Mom’s flavor was lack of details, a lot of the time. “Esophagus surgery,” “cancer throughout my body,” and other descriptives that seemed dramatic and attention getting. Until I learned about neurodivergence and experienced the realization autism commonly manifests itself in non-typical language expression I didn’t think much about it

              So, my observations after oxycodone, hydrocodone and now morphine dosing of my mom seem to have little weight with the doctors. Last week, for two hours after morphine administration at 5:11 pm mom’s heart was in a static-y line pattern and her guttural moans continued with each breath. Her heartbeat line smoothed out after 7, getting more balanced. But for two hours she had a very suppressed upper wave. She became quieter and seemed to start resting about 7:30 as her heart beat line became more normal.

              Most doctors will spend more time explaining typical medication responses than thinking about the non-typical adverse effects that seem to be mom’s pattern of medication reactions. Below is a clinical event describing adverse effects. They happen. Mom’s reaction was not the same, her motor impairment may have prevented twitching and noticeable speech change, but mom’s ALT lab number was markedly higher less than 24 hours after the dose of morphine and dropped off rapidly over the next three days. Other numbers seem odd based on the morphine dose on 5/17/23.

The question of “Do you want your mom’s transition to be peaceful?”, while well intended, was not well informed about my mom as an individual. I hope that the next few weeks can see improvement in communication and team building for a support network as mom moves into the next stage of illness.

Bottom line is, I believe morphine is not an option for mom. Nor the accompanying drugs that are used to lessen the side effects of morphine.

 

 

So I don't have a lot of time.

I'm working a job that is pushing my skills and I am pushing the boundaries of the standard operating procedures that are not clearly defined in my job situation.

And I have mom's care and well-being on my plate.

I was asked what it had been like in the PACE program for mom's health care. In as few words as possible: it was a living hell.

In hindsight mom's desperation and her self-preservation instincts led her to cast me in the light of exploiting her and put her providers on high alert against my motives for her well-being. I hesitate to use the word that she lies, because is it really a lie if you believe it? Mom's perspective is skewed by the autism like traits that have been littered across her life’s path. No one recognized what I now see as text book traits. She forged ahead knowing she didn't fit into any mold and she avoided labels and institutionalization because many well-meaning people thought that's what she needed.

There's even a period in her life that I believe she was either sexually trafficked or exploited for her labors in a mental hospital setting. She tried to get medical records of her “hospitalization”, I tried to get medical records to no avail from another mental hospital in Southern California. There are no records of her as an inpatient in either of the hospitals that were likely. I don't think she would have been mistaken as to which hospital it was because she made the inquiry in the 90s.

But a beautiful young woman, stunningly so, who was smart and vulnerable, could very well have been exploited into working for room and board in exchange for treatment. I don't know that there are records for outpatients in the 50s. I do know that the 1950s had some horrifying sexual trafficking of patients in mental hospitals. That is as a matter of record. Mom says she worked while she was there. During this time she had two young daughters that she paid private foster care for and her “release” was conditioned upon her having a job. That was when she became a tearoom model for fine department stores. It may have only been one department store I don't know but I do have the photos where she was stunningly dressed outside of the work environment and the photos that are treasured in the family of one modeling session that was professionally photographed. Mom worked periodically her whole life in medical settings. Nurse assistant as a teenager, and later live in companion work that she was qualified to perform any nurse ordered task. She used this skill-set to avoid homelessness more than once.

 All of this is to say that mom knew how to steer clear of the clinical psychiatric landscape she found herself in in the 1950s and forever after. So, to say that the professional providers that have been involved starting in 2018 were misled by her does not speak well for them being the professionals in a situation where a elderly woman was declining in her cognition and her physical abilities. I believe this sidetracked her getting appropriate care. “Appropriate care” was my clarion call over and over again.

 I am angry that five years after I first started pushing for her to get neurological treatment we get an answer of probable Lewy bodies dementia (LBD). Without a doubt she matches two of the four core symptoms that are required for probable diagnosis and she has for a long time. While the pace program fought against my efforts and labeled her all kinds of things, with somatic delusions, she was suffering physical discomfort and declining cognition.

There was a negative bias towards mom about noncompliance with medications. and an overt disdain for nutritional supplements. At least one conversation with a nurse felt like she was shaming me and my role as advocate for what mom needed. A comment of surprise from the lawyer (more below) during an interview was notable. The PCP had expressed firm conviction that further neurological consulting would not change the course of mom’s disease and led the lawyer to believe my requested referral would be denied. It still took a year get mom seen by a UW neurologist last month. Now we have recognition that Alzheimer’s is not the trajectory mom’s health decline is taking. There is a mixed etiology, with high concern for LBD.  The cardinal symptom for me that makes Lewy bodies highly likely is extreme sensitivity to medications - specifically neuroleptics. My written descriptions of her parkinsonism were probably filed in the trash can. My insistence that her constipation was along the lines of bowel dysmotility was dismissed as noncompliance. Her complaints of visual acuity problems were disparaged. What was likely adverse psychiatric reactions to medications were labeled psychoses.

The writing has been on the wall. Our family’s autistic neurodivergence that has been long standing probably predisposes her to Lewy Bodies Dementia. By extension I am predisposed to LBD.

My persistence with incorporating nutritional supplements, nay, just continuing the supplements that she took herself before her cognitive decline, were considered troublesome.  An adult Protective Services complaint was filed. The PACE program hid behind the anonymous complaint trope but the timing was one day after a conversation about supplemental dosing with the endocrinologist. I thought this was the appropriate provider to ask. I sure wasn't getting any help from the primary care provider on it. I only met resistance there. The program manager in phone conversation chose the word adversarial and applied that towards the medical care team’s attitude towards me and she stated in a team meeting it needed to change. This conversation happened when I confronted the complaint and filed a grievance against the PACE program.

I had been proceeding with my declaration to the court that mom had the right to a different provider. No justification was needed but it was based on the long standing distrust mom had personally with the assigned PCP.

God bless the court appointed lawyer that had the fortitude and compassion to petition the court for and execute a total of 70 hours of investigation. She was determined to get to the bottom of why a medical provider was awarded decision making authority in conflict with the spirit of the law regarding guardianship and vulnerable disabled people. It was so quintessentially the type of situation that my mom had been outspoken about and condemned throughout her lifelong personal ministry on behalf of the mentally ill and disadvantaged. The judge asked what complaint the primary care provider had about me being involved in mom's care. The lawyer replied I asked too many questions. He laughed at the incongruity of it. At the end of the hearing the judge told me I had done what I was supposed to do and commended me for fighting for my mom’s well-being.

This website is my therapy. We are on the other side of that legal issue being resolved and my having decision making authority granted by the court. Still in pursuit of appropriate care for mom. So now I try to unravel the tangles of medical histories and misdiagnosis. Autism carries the consequence of communication impairment. Mom could compensate and mask until she started having cognitive impairment. I think it can be inferred that skill got lost and I am now trying to pick up the pieces.

 There is a vascular component to mom’s dementia. Her decades of debilitating migraines have left their mark even though it's been 30 years since she had her last migraine. She knows exactly when that migraine was triggered because she got her eyebrows tattooed and they still look good! My older sister took her for the cosmetic tattooing in 1992 I believe.

 The doctor that mom quoted over and over again shaped her beliefs regarding psychiatry and health care. He is known for the quote “for every medicine there is a natural compound with the same benefits.” And I would hazard to say that natural compounds used for millennia in eastern medicines have more merits than our current medical system can define. Hence we continue to use food as medicine.

 

My goal is for mom to have a soft landing when her body can no longer sustain life.

-Rainey

 

 

I have literally seen the overwhelm in the eyes of providers when I have tried to present the scope of mom’s medical history. It must be an insult to their inborn desire to help. I am left feeling like they are running a subtext in their head that this is a Munchausen syndrome by proxy type relationship… Charitable interpretation goes absent, not even a glance in the rearview mirror as it leaves.

This protocol is being used still today in an autism clinic.

It seems that this was the most effective treatment before mitochondiral dysfunction was even recognized, much less treated

It was really hard to convey the transient nature of what looked like stroke symptoms. At least once mom was admitted into the hospital for a full stroke workup that came back negative. I witnessed these facial droops come and go… Time is fading these moments for me, willfully forgetting the sadness perhaps.

It’s been mom’s left eye that has gotten bigger than the right. Starting in July 2022.

This has been progressing. For years mostly a blanching to pure white then flushing bright red. Coldness and numbness intermittently for decades. Starting in 2021 there has been dark blueing of fingers, sometimes only one finger, usually on one hand at a time. I can’t be sure if it alternates, but I think it does. It seems random when I observe it. This happens 2-3 times a week that has been observed by myself or the caregiver.

Mom laughs when I call her a noisy kitty. This is totally new starting in the rehab facility the middle of November. 2022. Periods of constant moaning she says she can’t stop, not related to pain…