Us VS Them: How Type-A dementia patients and their loved ones see their decline
|Everyone is both right and full of shit. A strange state indeed.|
Preamble: I hope you read this. Creating this stupid #$%^ graph about kicked my ass before I even got to writing. If for no other reason than respect for the agony of the demented, read on please...
This is something I think I knew for a long time had to be written. This isn't to cast doubt on anyones perceptions, simply to point out a different POV on this subject of Dementia Patient Functionality.
When being judged as to how we are "doing", it is often the habit by both patient and caregiver/SO to fall back on assessing how well you do things compared to how you used to do them. (Editors Note: loaded-assed statement, that one). You would think this a rational scale to use in order to convey disease progression but as a patient I WAY gotta beg to differ. Now before going forward I state for the record I have been accused of having a "Type A" personality which I took to mean was fastidious about getting things done and done well. This is not to state I/we do ALL things to this level of detail or perfection; we definitely pick our battles. For example I could build computers all day long but if I fixed your car, you probably can no longer drive the vehicle and might as well donate it to GoodWill. I suck at cars true but maybe the problem is I don't care enough to learn enough to do a good job. Whatever, this is how it is, a handful of things we carry with us from life that are "our" things to do. For Randy it was woodworking and things, for me it was stuff like the TriTip below and techie crap.
However this is where is all goes to hell kids, because pretty much once a task or ability has sunk to the point where I can no longer do it alone/unsupervised and to the same level of quality I had before, it is no longer one of "my" abilities. Logic seems simple to me but is lost on others who hang on the idea that as long as the task gets done with or without help, as long as it doesn't cause a house-fire, it is not lost to us and therefore we are not "that bad". Since we see the other side of this equation, we are often accused of overstating things or being doom and gloom about things.
Edit: this last statement only took as long as it took for my wife to read this to come true, she was sure I was all down, glass is half-empty. The sad thing is, this was never about any doom and gloom but nothing i could say or do had any effect. It is still my belief that any job that I can no longer do w/o help, let alone having it turn out well is not a skill or ability of mine. I am fine with it being some ability that "we" can do or claim but to think otherwise (to me) minimizes the things of "mine" that I can still do OK and w/o help...but that didn't cut any slack either
No, for who we are, for how we are wired, this fits and meets a logical and dare I say it, sane definition of a loss of personal ability. The rest just sounds like denial to me, no matter how hard I try to explain this; its like talking to a wall, be it loved one or medical professional. So I post this and give up because I don't have the "mental bucks" to spend on this anymore. Still if this provides some additional insight into your charges caregivers, it has been a good day.