In case anyone sees this, from this day forward I am the person that I was no more...


I and others have written alot in this blog, sometimes about the dementia directly, sometimes the effects it has on our lives. One inescapable fact is that since this is a progressive destruction of the brain, I as a person will never stop changing until I am dead. My likes will change, my tastes, what scares me and what doesn't, what brings me hope and what does not.

I think that is one of the more jarring aspects of not just having dementia but having someone in your family suffering from it: you love your mother dearly but the woman in the other room hasn't been your mother for a very long time. When the damage hits some parts, it creates the kind of effects we come to know from dementia: memory slips, delusions, etc. I think of these as "event symptoms" as in they happen and then they are done. The other kind of damage though changes the "you" in your brain until its a different personality entirely. I like really different foods than six months ago, different everything really.

So this is resulting in a different person with a different personality.  It is no more complicated than that. Simple as this is to understand though doesn't mean its easy to deal with, not for the patient and not for the caregiver/family.

The family part is easy to get; part of what makes life normal is routine, predictability so when Grandpa or Mother becomes a complete stranger to the family that can be hard. After a point the person may not know the family anymore and the reverse comes to be accepted in time as well.

For the patient....that starts as trying to pretend you are still who you were, like you still have worth as a human being. You are still "jeff" or whoever...but this is picking away at whats left of your brain every days so the job of trying to pretend normalcy gets to be an effort and then a labor, one so onerous that in time you ask yourself whats the fucking point.

Of late I have had the opportunity to look at what lies between now and the end. I find myself incapable of doing most of the things that occupied my days of past so now literally I am doing almost nothing in the course of a day. Worse though, I am finding sitting vegging somewhat pleasant, far more pleasant than the world around me.  I find video games are almost impossible, I haven't read a book in a very long time, comics and manga are presenting their problems, new movies are rare and most of them I end up studiously ignoring. This doesn't leave much and not much is what I see between now and later, when I can do even less.  I think the dementia is actually defeating me.  I actually had a friend over today, trying to pretend at normalcy and things went OK except after 90 minutes I was so over-wrought from the effort at conversations, problem solving (we were trying to get  a new phone working) and the end I could barely make words let alone sentences....

And each day is taking on a Groundhog Day like feel as well. I wake up usually to mentally fogged to do anything, I get my meds in me which lets me almost get to normal but then its just a wait until lunch and from there, dinner and from there, sleep.  Tomorrow, we begin again. Lather, rinse, repeat, from now until I am room temperature.

If there is an upside to this, I have enough mind left to realize how fast time is going by; I am normally barely aware of it but days and weeks go by in the blink of an eye. 

And with that, regardless of bad things seem now, they won't take long to change.