Bureaucracy, Shumacracy
“The sorry bureaucracy underestimates our tenacity and patience,” so texted my sister. We had spent our morning collecting information about various local nursing homes for Mom.
I tend to agree with her, although I have felt both desperate and impetuous during the last 3 weeks.
Even after her most recent stay in a nearby psychiatric facility, it was obvious that Mom was worsening, not improving. Our hospital visits with her were brief and depressing, and her phone calls to me nonsensical. One morning while I was at work, she called me to discuss her burial plans. The next day, she called back and accused my husband and I of ‘signing some papers’ to keep her in the hospital permanently. “Don’t bulls**t me!” she said angrily.
After her release from the facility, my husband and I brought Mom home with us and set her up in our living room. Although she was considered medically stable, her short-term memory and ability to handle her personal needs continued to decline.
Her appointment with a well-respected geriatric psychiatry group, twice cancelled because of previous hospital stays, finally arrived. Her psychiatrist, efficient yet compassionate, told us that Mom had had 2 mini-strokes. She also diagnosed Mom with vascular dementia. I was devastated. I was relieved. Above all, the diagnosis helped shed light on why it has been so difficult to treat her other mental health issues. Nearly every other physician she had seen previously had told us she had ‘cognitive decline’ – though to what degree varied.
I had seen copies of Mom’s previous diagnostic testing. The comparison of her written mental aptitude tests, repeated several times over the last 6 months, was heart-rending. A normal score for this test is 27-30. Mom’s most recent score, taken at the psychiatrist’s office, was 13.
“Can you count backwards from 100?” the psychiatrist asked. “No,” she said, after a long pause. “Can you draw a clock with the time at 10 ‘til 11?” “This one always gives me trouble,” she replied, shakily holding the pen and drawing a circle. Most of the numbers were correct, but a few were missing. The hands of the clock did not point to the correct time.
Nearly every minute of the day, Mom needs help. We give her our best, but we are ragged after weeks of unrelenting stress. My husband is permanently disabled and works part-time from home. He makes Mom breakfast and lunch and gives her the cues she needs during the day. When I get home from work in the evening, I prepare her dinner and help her with bathing. I get her ready for bed. She wants to wear my pajamas, so I let her. Some nights she wants me to read to her, so I do. She loves to read and taught my sister and I to love it, as well. Right now, we are reading a young adult book about a girl and her horse. Her concentration and comprehension levels continue to decrease, however, so it is not easy for her. We are blessed that she is docile right now and does not wander in the night.
The strain on my family remains enormous. My sister, husband, and I have started the frustrating and slow process of trying to get Mom qualified for a special kind of Medicaid that pays for nursing homes. She was assessed a few days ago and is waiting for medical approval. The process of application and approval for this program can take up to 45 days. After all, when you’re asking the taxpayers to assume the full-time responsibility of a medically-needy adult, there are a lot of hoops to jump through. Our caseworker, a sweet lady who works 12-hour days yet never hesitates to answer my calls, thinks that Mom’s chances of approval are good. How, in the name of all that is decent and good, can they not be?
If she is approved, then we must find a nursing home that accepts Medicaid and has space for her. Based on our research thus far, it will probably not be in our city, but in a surrounding county, due to demand. One local nursing home representative told us that she had had a dozen calls in the last month with the same request. She had to turn down all of them.
I think my sister is right, though. The bureaucracy underestimates my family. I believe God is faithful to His people, and maybe in Mom’s case, he has gifted my sister and I with the ability to advocate strongly for her and others. My brilliant sister has already crafted a laser-focused spreadsheet detailing nursing homes who take Medicaid in our area for me to research. She created it after calling the local office of aging and getting nowhere. She has offered to share her findings with them. I continue to call and re-call those on her list. I have never received a call back after leaving only one message.
And don’t think I won’t continue to fill out the endless paperwork. Medical records requests, histories, financial reports, whatever. I got news for the pencil pushers – remember in elementary school when the teacher would punish the whole class by forcing everyone to write sentences 100 times in a row? THAT SOOTHED ME. So bring it on. Our family is armored with determination and I pray our steps are protected by the Almighty.
We are the sentinels watching over our wounded.
February 15, 2018
