Dementia Update

As some of you know or have noticed over the years, I am unable to post on a consistent regular basis as I once did my first decade on WordPress. My commenting and participation on other blogs I enjoy following, sadly has become very limited as well. If you are fairly new to my blog, visiting, or browsing WP, the reason there are much fewer posts is due to my Mom’s Stage 5 Dementia, which is really now well into early symptoms of Stage 6 with fewer mixes now or crossover with Stage 5.

In my December 2021 post about her cognitive decline I listed and briefly explained all the various stages. As of 2022, it seems the general consensus of all the seven stages are known and what the adult children of parents with dementia, or early onset Alzheimer’s Disease, can expect. Here is Stage 6 according to Dementia.org:

Stage 6: Moderately Severe to Severe Dementia

When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:

  • Delusional behavior
  • Obsessive behavior and symptoms
  • Anxiety, aggression, and agitation
  • Loss of willpower

Patients may begin to wander, have difficulty sleeping, and in some cases will experience hallucinations.

Mom shows all of those four bullet-points now, although three of the four on some days and then perhaps two of the four other days. But there is always at least two of four every single day. She definitely needs supervision at minimum 12-16 hours per day with some of that time (1-hr at most) a check-in or Q&A time sporadically with her throughout the day to gauge how she’s getting along.

Friends and neighbors sometimes ask me how I am doing, how I’m managing my own health and social needs. Apparently, Caretakers of elderly parents with dementia or Alzheimer’s are often overwhelmed in a period time if they receive no relief, no break for themselves and don’t become well-informed of the two diseases. Another thing I’ve heard from the support-group I attend once a month is that the role of caretaker is usually a thankless job/role. Since late-stage dementia is basically early Alzheimer’s Disease, Alz.org lists Ten Symptoms of Caregiver Stress. I currently tick 9 out of 10 symptoms. The biggest reason why? I’ve been going non-stop, no break, every single day and night as her full-time, live-in caretaker since mid-August 2021, or over 47-weeks straight with no respite.

Back in late April of this year I was supposed to get a much needed 6-day, 5-night vacation up in Dallas, my hometown where all my good friends still live. We had several plans made and fun, exciting things to do, dancing, umm… and maybe some drinking included! 😉 But here’s what happened that week/weekend that changed everything: In Memoriam to My Brother. Hence, no real vacation for me at all. I spent the vast majority of my time at the hospital sitting with James, followed by waiting (alone) in my hotel room some 4-5 days and nights for decisions and details about his funeral. I had no motivation to go out alone or with friends; I wasn’t great company then anyway.

So yeah, over 47-weeks now and still counting.

Meanwhile, Mom and I march on, day-in and night-out, fighting a cognitive disease that takes a little more brain-space from her than we can actually replace or take back. But we do have our victories here and there. That’s when Mom wants to celebrate big with either glasses of her Pinot Grigio or I make a pitcher of my world famous El Presidente margaritas, which have a good patada de toro to the ass or head, whichever it reaches first. Hah! 🍸🥳 These are our cherished good times and there will come a day when they aren’t possible. And so we enjoy them thoroughly, when we can, and at length for sure. Do you know what I mean? 😍

Live Well – Love Much – Laugh Often – Learn Always

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Disposition

Moments. There are moments in your life that define you. The crossroad laying before you that set the wheels in motion, all the wheels different with different outcomes. I have done some great things in my life. I have done some stupid things in my life. And I have done some things, little and big, that at first were stupid and then turned out to be the perfect thing; the right thing. The stuff when you say afterwards, “Get out the front door! Who’d of thunk?

I have been accused of having a flair for the dramatic. This probably qualifies. It is a true story.

carolyns-rag-dollGrowing up my little sister and I lived just a short walking distance from Pecan Grove Park. Mom would sometimes take us there after school or on weekends to get a break, a breather, by unleashing our never-ending supply of energy six, seven, or eight year olds possess. On this day to the park, my sister brought her rag-doll that she was never without. She had gotten it for her birthday weeks earlier. She slept with it. She traveled with it. She was proud of it. She loved it. It seemed like my second sister to me — and honestly, their relationship made me gag sometimes. At that age I guess a young boy hasn’t matured enough to understand that bond.

We had played out our afternoon park-time and it was time to walk back home. Our home, it’s street, and the park was divided by a busy major boulevard. Mom insisted on holding our hands every time we crossed because there was always traffic and sometimes a car or two that were driving above the indicated speed limit. It didn’t help either that where we usually crossed was atop a hill, where from one direction traffic wasn’t visible until it was just 40-50 yards away. The nearest red-light intersection was two or three blocks down the way, and if taken, two or three blocks right back up to our home street. Crossing the six-lane boulevard was too dangerous for me and my sister alone; that was made abundantly clear. This particular time of day was no exception.

Standing at the curb waiting for the right time, the perfect time, Mom held my hand tight. She’d lean forward but then stop, gripping our hands tighter to make sure we stayed put. The wind from the passing cars would blow my hair and my Mom’s and sister’s skirts. She would lean again, but stopped. This seemed to go on for ten minutes but looking back on it, she was simply calculating how quickly she could get across — at least to the median — with two small kids in her hands before the fast-moving cars would get close…too close. I sensed her rising anxiety.

Suddenly it was lift-off! “COME ON! NOW!” Mom yelled, and with our first step I don’t think our little feet touched the concrete! The three of us darted as quickly as we could to the middle! Gasping we had to stop. There was too much rushing traffic to make it all the way across. Now comes the harder part. We had to go through it all again:  cross(?)…don’t cross! Step(?)…step back! There would not be as much time to judge the oncoming cars because of the hill. Mom was more nervous, her grip squeezed much tighter. LIFT OFF! Run! Run! And then my sister let out a blood-curdling scream.

We are safely on the other side as vehicles whizzed by but with one exception.

My sister had dropped her doll in the middle of the street and was beside herself bawling. Topping the hill are a couple of fast-moving cars. Lying motionless just twenty-five, thirty feet away, I stared at… my ‘second sister‘ who was probably about to get smashed and torn apart while my hysterical real sister watched. For the next few seconds the Earth stopped rotating, the noise, the engines, and the bawling fell silent… and time stood still. A moment became this moment.

In a split second Mom had my hand, in the next it was gone. I jerked it out and took off running those 30-feet — that blurred into a mile — with only one thing in my sight. Got her! I held her to my chest. I am standing motionless in the center. I realize I am not making it back. Time slows even more. I thought, the cars always travel between the lines, between the white dashes. That is where I must stand as they all (fly by it seemed to me) pass by. I cannot move; if I do, I become unpredictable to the drivers and their machines of major pain. Two or three cars pass and I run back to Mom and my sister. My sister was frozen silent with a gaping mouth staring at me. Mom was now screaming…at me! How odd I thought. I handed my sister her doll and got a smile I can never forget. Mom was a different story. I remember thinking how much trouble I was going to get into when Dad heard about it. In hindsight, I think his punishment scared me a lot more than what I had just done in the middle of Kiest Boulevard. In further hindsight today, saving my sister’s doll while almost putting my Mom into a mental institution was clearly a bone-head move, a moment, an impetus that could’ve defined my life permanently like many others I have pulled since:  What Was I Thinking?

Would I do it again? Yes. Looking back over my many decades of stunts, of impulses, of moments of truth… I would do it again. I know myself too well. It’s who I am. Please do not tell my insurance agent.

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For my sister and Mom:  Happy Valentines.

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Live Well — Love Much — Laugh Often — Learn Always

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