Faithfully Frazzled

I have a confession of sorts. I never actually planned to “blog”. I’ve always thought journaling is weird because, let’s face it, I live in this brain of mine 24/7 and, as an introspective person I think I know myself pretty darn well. I don’t feel the need to see my thoughts written out to understand myself more deeply. I don’t ever plan on going back to these posts to read them, but, Oh my goodness!! I didn’t know that just the act of putting things down on metaphorical pen and paper is in itself healing – until of course I made the leap a year ago today.

Blogging, journaling, writing… it’s similar to the feeling of giving birth to something and then unleashing it on the world just to see what happens. I can tell you after the smattering of posts I’ve made that there is a lightening of spirit that comes from this exercise. Much like the lightness one feels after going to confession. Unburdening is a necessity in this complicated world of ours.

Being yoked with chronic illness, neurodivergence, and a hyper-sensitive character I’ve been experiencing a burden like nothing I’ve ever experienced before. For the past month I’ve been on an epic journey with my mother through the thorny brambles of dementia. I wish there was some way to find a lighthearted way to tell this story but there’s absolutely nothing redeeming to say about this condition. I may have found a new life’s passion in the desire to find a cure for this insidious disease.

Our voyage began back in 2018 when my cousin Tom, who’s been a steadfast caregiver for my mom, and I started noticing mom having memory lapses, nighttime hallucinations, and incontinence. Fast-forward a couple years and mom was diagnosed with Normal Pressure Hydrocephalus, a condition in which fluid buildup on the brain causes dementia-like symptoms. One doctor described the condition as “wet, wacky, and wobbly.” Not the most glamorous description but accurate. The hallmarks of the condition are a rise in incontinence, cognitive decline including agitation and depression, and a kind of shuffling gait. Given that mom had four replacements -knees and hips- and her advancing age, the shuffling was considered a grey area. The only stop-gap for NPH is a shunt placed in the back of the head which drains the fluid steadily from the brain through a pump in the abdomen. Mom had this placed just as the pandemic escalated in 2020.

Since that time we’ve gone to many neurological appointments and various doctors to understand better how to help mom. She even did a kind of cognitive stimulation therapy which she loved because she got to display the mental acuity she still possessed. She was very proud, for instance, when the therapist asked her to name as many musical instruments as she could within a set amount of time. Mom was quite pleased with herself when she rattled off all manner of obscure and run-of-the-mill instruments in record time! She had a twinkle in her eye when she told the therapist she had a degree in music education. As mom would say, she was feeling “onnry”; “ornery” if you’re a stickler for pronunciation. 😉

Since the placement of the shunt in 2020 mom’s brain has slowly succumbed to the ravages of this insidious disease. The dementia progressed in a very drawn-out manner until about five months ago. She stopped being able to make herself a cup of coffee in the Keurig. The microwave too became a mystery to her. My cousin came down to the laundry room one day to find liquid detergent poured directly into the dryer with dryer sheets placed on top. About a month later when I returned from a family cruise in the Mediterranean, I found mom slumped over in her bedroom chair barely able to lift her head. We took her to the hospital and discovered she was in kidney failure from severe dehydration – yet another symptom of dementia. Mind you, we still hadn’t been given a working diagnosis that called it what it was. The medical community was still referring to it as NPH, which is dementia adjacent but not the Big Bad Diagnosis itself. For our part, Tom and I had been treating her as if she had dementia for a quite some time because it seemed the most likely culprit.

After two stays in the hospital due to kidney failure we were directed to a new Neuropsychologist wunderkind who mom’s shunt doctor recommended. He said a formal diagnosis was overdue. Once we got the ball rolling with the Neuropsych the descent into profound dementia has been swift. Week by week she has deteriorated in front of our eyes, literally. She’s had pretty regular brain scans that show a shrinking of her brain and even hematomas from the speed with which it’s happening.

I’d been losing my mother one day at a time until one fateful day a few weeks ago when we had a visit from her pastor, Steve. He kindly offered to come over to her house for a pastoral visit and to give her Holy Communion. The visit was….odd, as she barely spoke and when it came time to reach out for the disposable communion cup and wafer she was unable to grab hold of either piece. I had to physically put the wafer in her mouth and the cup to her lips. Almost as soon as the pastor left she became silent even though her eyes were open and, when she began speaking again, she was holding an unbroken monologue of gibberish. It continued all the way to the emergency room. Many tests later they discovered no stroke had occurred, which was my guess as to what happened, but rather a pair of bilateral subdural hematomas. Since that finding we have been thrust into a dizzying whirlwind of deep delusions and psychosis, the likes of which I’ve never experienced before. The first night in the hospital, after admitting her to a room on the second floor, mom was convinced one of the nurses was trying to kill her (which is a recurrent theme) and that she spent the night in jail.

Any time I left the hospital for the evening to sleep she would regale me the next morning with tales of being left out in the cold, often overseas. A homeless encampment kept her warm one night, along with the blanket she was convinced was Tom’s but in reality is her own. The worst part is that, to this day, she’s convinced that every time Tom and I went home for the evening she was forced to spend time in Europe by herself. Forced to eat foods she didn’t like. Forced to be all alone. This leads me to the most gut-wrenching part of this whole saga.

The third day, mom’s delusions were so strong and so real to her that she gave Tom and I an earful. She could not forgive us for abandoning her in her greatest time of need. Mind you, I had been spending all hours at the hospital being told by the powers that be that my mom is not well enough to go home and we needed to find her an appropriate nursing home that had a memory care unit. The very next day feeling completely brow-beaten and emotionally exhausted I went to breakfast with one of my dear godchildren. It was about 8:15 in the morning and my cell started ringing. It was the hospital saying that mom had fallen late the night before and that as soon as I was done with breakfast, I should come down. She wasn’t too hurt and X-rays showed no breaks so, no rush. I was already planning on heading down after breakfast so, no problem. Twenty minutes later I get another phone call saying, Miss Jenny had a Code Blue and I should come down immediately. Not really registering I asked the person on the other end, “Ummm WHAT??!?” She said, your mom’s heart stopped and nobody realized she had a DNR-CCA bracelet on (in addition to the DNR posted on her door) and they proceeded to “just react” and did chest compressions until they were able to get a faint pulse. This was probably the end and I needed to be there asap. Without thinking I left my godson, raced down to the hospital, and informed my family back in California and Michigan.

When I arrived at the hospital mom had been removed from all monitors and was only being given oxygen. She occasionally opened her eyes but my family and I were told that she would pass at any time and we should just keep vigil. Which we did. For HOURS. Until we were all so exhausted that my husband and girls bid my mother a final farewell and went home. My siblings arranged to fly out in hopes of saying goodbye before she finally passed.

Except she didn’t. Mom rallied that evening and was awake and somewhat alert by the time my brother flew in late that evening. She was in tremendous pain from the chest compressions and had to be put on morphine and Ativan. The next day my sister arrived from California. My dad and his wife arrive the following day along with family friends from NY. We all proceeded to keep vigil around her as she healed and became more alert. By this time she had no idea what was going on. In her mind she’d been “on a horrible trip” with Tom and me and could NOT wait to get home. When we realized we weren’t losing mom after all we were put in contact with a company called Oasis Senior Advisors who led us through the process of touring two different senior homes with memory care units. We had already been told she qualified for hospice care which, incidentally is nothing like it used to be. Hospice is covered by Medicare and does not necessarily imply that your loved one is at the end of their life. Who knew? Not I certainly.

In a flurry of phone calls and visits we managed to secure a place for mom at a lovely place made to look like a mountain lodge. I knew this development would only upset her more but we began to fully grasp just how much care mom was going to need. We’ve now been here a week and she is becoming acclimated but not happily so. She still thinks certain nurses and residents are trying to kill her no matter how many times I tell everyone is trying to keep her alive and comfortable. She had previously lost about twenty pounds in the weeks leading up to her hospitalization so I’ve spent an inordinate amount of time trying to keep her adequately clothed in her thinner body. Everything is a challenge. Her feet are swollen to twice their size so new shoes, socks, slippers have all been bought.

She has finally accepted that nobody stole all of her things from home and that it was I who brought them to her new room so she would have familiar things around her. No good deed goes unpunished. If I sound like I’m feeling sorry for myself I can honestly say that this is all a labor of love. I would be lying if I said I’m not upset that my beloved mother, my fierce protector, confidante, friend will likely die thinking that I’ve done her wrong doesn’t sting. It’s a pain I don’t think I’ll ever outgrow. I’ve wept to my family many times about how unfair this all is. This incredibly dynamic, pathologically kind and generous woman does not deserve this kind of ignominious end. We have been inseparable for my whole life and now at its end we’re being torn apart by the cruelty of this disease. There’s no way to spin this as anything other than the tragedy it is. BUT! There’s always a but with me. 😉

She raised me to see the good. She raised me to lean on the goodness that is Jesus Christ. She is everything that is good in me and I will fight anything and anyone to let her die with the dignity and beauty that she deserves.