Here goes.

So the news about my parents is this:

1. Dad. A few nights ago my dad was apparently up wandering in the middle of the night. If you'll remember (I believe I blogged about this), we had to move him into the locked memory disorders ward a couple of months ago. Well...within the context of this locked ward, the facility does not close and/or lock individual patients' rooms at night. So when my dad went wandering the other night, which he is prone to lately because of the drugs he's on, he (not surprisingly, for a man in late-stage Alzheimer's disease) got confused and went into another patient's room--a woman patient. She (also not surprisingly) was startled and told my father to leave. He got combative and hit her. Then a staff person (possibly more than one) got involved, and my dad hit that person. They were finally able to calm him down and get him back to his room, but the upshot is that the facility director said he's concerned about the violence and if it keeps up, my dad will have to leave. Well...I can understand that. Violent patients are a danger to the other residents, and to the staff. But. This place has something called a "memory disorders unit." My dad is on that unit. Combativeness and hitting are very common Alzheimer's symptoms, especially when the person is in the later stages of the disease. Why are they so unprepared to deal with it when it happens? The director of the facility is asking for another psych evaluation (we just had one in October--what's going to change??), or for my dad to spend time on a psych ward. His doctor, a dementia specialist, says "No!" The psych ward will simply pump my dad full of haldol and probably thorazine or something similar, just to keep him subdued. They are not going to spend time trying to find that "perfect balance" of drugs, which is a moving target with an Alzheimer's patient anyway. Guh. I'm worried that Dad may be moving to a nursing home soon, something none of us wants.

2. Mom. My mom has been doing somewhat worse, cognitively, so my sisters decided to have her fully evaluated by the same dementia specialist my dad sees, Dr. Foley. (He practices in Grand Rapids, MI--I believe at St. Mary's Hospital, and is apparently pretty awesome, so if you're in that area and need such a specialist, check him out.) This evaluation included an MRI. My sister emailed all of us with the MRI results yesterday. It shows atrophy in the hippocampus, which is a known marker for early Alzheimer's. So Mom's got it too. Which is not surprising. She has gone pretty dotty over the last few years.

So after the requisite worrying about them, feeling sad, and wondering what I should do, naturally my first thought is about my own future. There are genetic components to Alzheimer's disease; they recently identified some genes associated with the condition. Both of my parents have it. Am I fucked? Then again, several studies suggest that lifestyle plays a large role in the incidence of Alzhiemer's. My lifestyle is pretty significantly different from my parents'. Am I potentially not fucked? Then again, who isn't fucked in this life? Everybody poops. And everybody dies. Noone gets out alive. You have to die of something, so why not that?

Sometimes I just with I hadn't confronted these facts at quite such a young age, or had a life so peppered by the deaths, both timely and untimely, of family members and friends. Sometimes it really weighs on me, makes me feel like all this crap we do every day is just...pointless. It also makes me very, very angry that our society is configured to use people up and spit them out, that we don't take better care of our elderly and infirm, that we bankrupt them as they struggle with conditions that are not their fault, and that dignity in such conditions is not simply guaranteed as a basic human right--throughout the world.

OK. Now I'm going to go listen to a This American Life podcast and knit, and try to find my optimism again. Because that's the irony: despite all this grim sarcasm and gloom of late, I am, at base, an optimist. I love to laugh. I appreciate the little pockets of beauty and peace and fun that the world gives to me every day, though I think I may see these qualities in places where others don't. Sometimes I have to nurture that part of myself more diligently than I realize, and to remind myself that the best that anyone can do in this life is to grab onto it and ride it for all it's worth. The first step, I guess, is acknowledging that I am afraid of a few things--bone terrified, if you must know--but so is everyone else, I'm sure. Anyone who's not, isn't paying attention.

My brother just emailed this to me and my sisters:

Planet Alzheimer

You are now a visitor on planet Alzheimer. You have chosen to follow a loved one
there, as they are an unwilling inhabitant, having been taken there by force.
You do not want them to be alone in this absurd place, but you are still used to
planet Earth. You will find the Earth rules no longer apply, and you will have
to learn to adapt to these new rules if you want to survive the journey:

Never argue
Logic and reason do not exist
Lying is acceptable
You are not who you think you are, you are who they think you are
Never take anything personally
Old memories are best
Learning to do something new is not important
Being loved and accepted at all times is important
Have no expectations
Take advantage of the shuttle back to Earth as often as possible

Yup.

So the news this week:

Last Friday my dad hit my mom in the face, because she was trying to get him to do something (not sure what), and was probably trying to physically move him toward whatever she wanted him to do. Dad has put up his fists in such situations before (my mom can't get it through her head that she shouldn't try to force him to do anything, that she should let the staff take care of him--that's what assisted living is for), and he may have hit her before--actually, we don't know that she hasn't hit him before--but this is not something we can allow to continue. Combativeness and hitting are normal (ha, "normal"), or common developments as Alzheimer's progresses, but it's unsafe for my mom, and better for my dad if he isn't being agitated to the point of striking out like that. The assisted living place, in consultation with my sisters, had a psych RN come in to evaluate my dad's cognitive function. We initially thought that all we'd need to do is adjust his medication. He scored 6 out of 70, which means that his function is much worse than we thought, and shifting his medication isn't going to solve the issue. We have decided that it's time to separate our parents. The assisted living facility has a memory disorders wing (locked), and we have moved my dad there. He shares a room with another gentleman. By all accounts, he seems to be doing a lot better there--it's quiet, his needs are all taken care of, and they engage him in gentle activities as he tolerates them. My mom can visit him whenever she wants, but if her presence agitates him, the staff ask her to leave. (This happened on Wednesday.) We're now trying to get our mom into a studio apartment across the hall from the 1-bedroom apartment my parents were sharing. It is also located right next to the entrance to the memory disorders wing.

Of course the whole situation is also having profound effects on my mother that I just can't write about right now. She is acting out while also trying to keep a polite veneer on things. I can only imagine how scary and frustrating it is, to have your spouse, the person you've been with for your entire adult life (they married when my mom was 22), slowly disappearing but looking basically the same, and behaving in some truly bizarre ways. At the same time, her cognitive function is also declining, albeit differently than his, and I think it's just impossible for her to fully process what's happening.

This--separating my parents--was something we all knew was coming someday, but we didn't realize it would happen so soon, or at least I didn't. We just moved them to this place last May. This week I've really had a hard time coming to terms with it. It absolutely sucks to lose a parent this way. I feel that I've already lost my dad, but he's still alive...and it's this slow-motion process of him just fading out, so the grief is protracted and furtive. This, though...it really fucks with one's romanticized notions of how one's parents will "grow old together" and "take care of each other."

i'm back from michigan. it was an exhausting week--physically and emotionally. this week will be just as bad, as i try to catch up on the work i couldn't do last week. i'm all out of whack, geographically and temporally as well as mentally and emotionally.

my parents are all moved into their new place. so far they seem to be doing pretty well at the assisted living facility. for the rest of us...the week pretty much consisted of prepping and packing at my parents' house, moving stuff (using a major arterial road that is under construction--fun fun fun), buying stuff, and setting stuff up in their new place. then we started to clean out their house. that's going to be a huge job, and we have barely dented it. it's going to take months.

both of my parents have lost a lot of function over the last several months since i was last there (which was in late september). it is heartbreaking. it's like....yeah, i understand that they have both lived good, long lives, but they're still my mom and dad. it's not possible for me to be "philosophical" about this right now. it hurts too much.

i can't write anymore today; i'm too...just worn out.

my sister jan and i went to the doctor with our parents today. the appointment was for dad to have a cognitive evaluation, which was administered by the nurse. two years ago he scored 27 out of 30 possible points. they asked him stuff like, "what year is it?" "what season is it?" "what month is it?" "what's the day/date?" "write a sentence for me," along with asking him to follow some simple spoken and written instructions. this time they omitted one question (i'm not sure what question, or why they omitted it), and he scored 14 out of 29. he had no clue what year it is; he thought it was spring; the only reason he knew the month was because my mom had just told him his birthday is this month; and he had to look at his watch to figure out the day/date. he followed both the spoken and written instructions ok, but when the nurse asked him to write a sentence, the only one he could come up with was "how now brown cow?" i watched him write it. he capitalized the first letter of each word, and didn't punctuate the sentence. the nurse left after she was done administering the test. while we were waiting for the doctor to come in, my sister and i quizzed our dad about a few things. we asked him how many kids he has. he said, "i think we still have 5, don't we dear?" (i.e. he didn't remember that his eldest daughter had died in 1985.) we asked him to tell us all of his kids' names. he couldn't remember a single one. with some heavy hinting and prompting from mom, he managed to dredge them up, but when he got to my sister barb...mom gave him the hint that the name started with the letter "b," and he started guessing b-names until he came up with barb. he didn't realize he had hit upon the correct one until my sister said so. ok, so when the doctor came in, he started out by talking about the results of the cognitive eval. he then asked my dad to introduce him to everyone else in the room. he didn't remember my name or jan's name, and he introduced my mom as "my wife." (in other words...he didn't know her actual name, either.) of course, when he hesitated over naming jan and me, my mom tried to jump in and give him hints again. i told her to let dad come up with it on his own, but he never did. he told the doctor, "i had it 10 minutes ago, but i don't remember now."

so the doctor ordered further tests--my dad had some bloodwork done today, and will have an MRI in early october, along with a follow-up evaluation by a gerontology/dementia specialist.

interestingly...during my dad's appointment, the doctor got a feel for my mom's level of impairment too, and at one point he said, "we should evaluate her pretty soon, too." yeah. that's what we thought. she goes in on thursday.

(((sigh))) it was one thing, to have an intellectual understanding of how cognitively impaired my father has become, from the "safe" (but guilty) distance of seattle. it is another thing altogether, to sit face-to-face with him, and to see his face go completely blank when i ask him if he knows who i am.

we went out for lunch after the doctor's appointment. mom asked me for the 3rd or 4th time today, "when do you go back?" (meaning back to seattle). sunday morning, mom. we asked dad if he remembered what happened a few years ago on 9/11. he hadn't the foggiest idea. he was just mad that we were making him eat a hamburger instead of letting him go home and make himself a peanut butter sandwich, like he does every other day.