Saturday, January 5, 2019

GUY’S GOTTA TALK ABOUT…Alzheimer’s #21: Stages and Levels…


Dad’s diagnosis of Alzheimer’s stayed hidden from everyone until I took over the medical administration of my parents in 2015. Once I found out, there was a deafening silence from most of the people I know even though virtually all of them would add, “My _____ had Alzheimer’s…” But there was little help, little beyond people sadly shaking heads. Or horror stories. Lots of those. Even the ones who knew about the disease seemed to have received a gag order from some Central Alzheimer’s Command and did little more than mumble about the experience. Not one to shut up for any known reason, I started this part of my blog…

The residence my dad lives at does annual care reviews. This past month, because of changes in his behavior and abilities, my dad was advanced from Level 1 (for which he receives minimal care beyond what is normally provided to all of the community (someone is always there to help him, room & board, medication delivery, recreation and facility use, programming, nurse assessment, care conferences, etc.) to Level 3. He’ll now receives help taking a shower, shaving, some help dressing (mostly dressing appropriately), behavioral intervention (he has done “exit-seeking” practically since he moved into the facility, often complaining that he feels like a prisoner)but which as recently escalated to following a woman he thinks is my mother and holding her hand (while the woman’s HUSBAND was sitting there), his incontinence has increased, and he has a prescription for olanzapine: “used to treat nervous, emotional, and mental conditions…may also be used alone or with other medicines (lithium or valproate) to treat bipolar disorder (manic-depressive illness) or mania that is part of bipolar disorder”, which they use as needed when he gets agitated and really tries to “escape” the place.

What does this mean? Well, by now you know I prefer the 7 Stages of Alzheimer’s over the

Stage 1: No memory problems are evident.

Stage 2: Minor memory problems but not distinguishable from normal age related memory loss.

Stage 3: Friends and family members begin to notice memory and cognitive problems like not being able to find the right word during conversations, forgetting new acquaintances, an frequently losing valuables.

Stage 4: Clear cut, classic symptoms of Alzheimer’s disease are apparent.

Stage 5: Need help with many day to day activities. Significant confusion, forgetting person information like phone number but still able to bathe and toilet independently. They also usually still know their family members and some detail about their personal histories, especially their childhood and youth.

[Dad is probably here-ish.]

Stage 6: Confusion or unawareness of environment and surroundings, behavior problems, assistance with activities of daily living, recognizes only friends and relatives, loss of history, incontinence, wandering.

Stages 7: Lose ability to respond to their environment or communicate, assistance with all activities of daily living is necessary, and many lose the ability to swallow [Dad has trouble with this already].

For me the Three Stages of Alzheimer’s (Early, Middle, Late) seem…more open to a “shoulder shrug” interpretation, like “Well, he has trouble coming up with the right word or name, remembering names when introduced to new people, challenges performing tasks in social or work settings, forgetting material that one has just read, losing or misplacing valuables, increasing trouble with planning or organizing, so OMG!!!! He MUST HAVE ALZHEIMER’S!!! Quick let’s get him institutionalized....” for Early Stage Alzheimer’s.

As far as I recall, Dad was in this stage well before we forced him and Mom to move.

With the Middle Stage, comes forgetfulness of events or about one's own personal history, moody or withdrawn, especially in socially or mentally challenging situations, unable to recall their own address or telephone number or the high school or college from which they graduated, confusion about where they are or what day it is, need help choosing proper clothing for the season or the occasion, trouble controlling bladder and bowels in some individuals, changes in sleep patterns, such as sleeping during the day and becoming restless at night, an increased risk of wandering and becoming lost, personality and behavioral changes, including suspiciousness and delusions or compulsive, repetitive behavior like hand-wringing or tissue shredding…

Late: Needs round-the-clock assistance with daily activities and personal care, lose awareness of recent experiences as well as of their surroundings, experience changes in physical abilities, including the ability to walk, sit and, eventually, swallow; have increasing difficulty communicating; become vulnerable to infections, especially pneumonia.

Now, not to be cynical or anything, but with the weed-like propagation of Memory Care facilities (which charge exorbitant fees and seem to be a really good financial investment), the moment a parent forgets something, with three Stages, families might throw their arms in the air and place their parents in a Memory Care Facility when the vague Early Stages of Alzheimer’s show their ugly head.

Dad would have been in Late Stage for the past year or so…but with Seven Stages, when I started this blog, Dad was between Stage 5 and 6. Most recently – like last week – it’s clear that he’s advanced to Stage 6 with clear signs that Stage 7 is imminent. In particular, since this summer, Dad has exhibited a marked inability to assess his environment, to wit: he called me two nights ago 23 times starting at 1:40 am and calling for the last time at 3:42 am. He had no recollection of that when I went to pick him up for his doctor’s appointment. He frequently has no awareness of time of day, and lately he’s been unable to read his old watch, becoming entirely confused when I ask him to describe… “What’s the big hand pointing to? What’s the little hand pointing to?” I haven’t even tried to ask him about the minute hand…

At any rate, I’ve been working to reconcile myself with Dad’s decreasing ability…and to be perfectly honest with you, I’m not doing really well and I find myself pulling away.


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