Field Notes.

I'm in Minnesota for two weeks while my sister is on vacation. She went diving off Palau. Everyone keeps asking me, "Where's Palau?" and my answer is always, "I don't really know." It's far away. It's right here:

Mom has changed a lot the last couple of months and she's [al]ready for the next level of care. It's good to spend time with her in one way, in another, it's completely exhausting. She's like a grandkid that will never grow up. That growing-up promise that kids make makes all the difference to the way you feel about caring for them; cleaning up after them. Same with pets. The unconditional love of a furry thing will make you clean up unbelievable messes - with no regrets.

The Alzheimer's parent, though, is a little more complex. When she's sweet and grateful, it's a big deposit in the emotional bank account. A re-store for the wells of compassion you have for the aging parent.

When she's crabby, manipulative, and controlling - like a giant toddler who desperately needs a bath - it's much harder. I took away some of her freedoms this week. I'm making her take a shower, with the assistance of an LPN. I'm having someone come in and do her meds every day. I'm having someone come and knock on the door when it is time to eat lunch and dinner. I'm taking on the familiar role of "black sheep" because I am so comfortable disappointing her I realize it may be the best thing I can ever do for my "good girl" sister - to accept responsibility for these unpopular decisions.

She doesn't eat anymore because she doesn't remember to. She will eat if you hand her the food. So this day, I brought her lunch. Some wild rice soup, quinoa salad, potato chips, frosted valentine's cookies and Vernor's ginger ale. All old favorites. Putting everything on plates (that had to be washed first since they get put straight back in her cupboards after they've been used), I turned to find she had dragged the old typewriter table into the hallway for our lunch.

We took a picture of the table just like my grandma used to do at every holiday meal. All the doors are shut on that side of the apartment because she thinks people are coming in at night and "bullying" her. Small green post-its with her name written on them are all over the house. You can see a couple on the bookcase.

I'm hoping the extra service buys her some time in her own apartment. I'm hoping it buys my sister a little peace of mind knowing that someone is checking on my Mom five times a day. My Mom hates the idea, especially the expense.  But that's because she doesn't seem to take on that her only other option is the memory unit, which is twice the price and basically zero freedom.

I went to visit the memory care unit, because we hadn't actually done that yet. It's down the hall and through another locked door. I expected to be miserable in there - I was when I saw units at other facilities - but it wasn't like that at all. It reminded me of the Apple Tree Inn in Indianola, Iowa where we stayed when we visited my Mom's parents. I hope that's a good sign. In their shared kitchen - they can eat whenever they like.

Comments

[Kristen]

There are always, lately, these "significant" discoveries that want to explain Alzheimer's - the things that seem to cause it, potential ways of staving it off. The latest headlines made me laugh: keeping the brain active through life may stave off the dreaded disease." That's like the studies that trumpet shocking truths like: lack of discipline in early years underly anti-social behavior in adults. Or: eating too much causes obesity. The point of that first headline was evidently that you have to start thinking early, and do it consistently over time - like from six years old on. Just starting to do cross word puzzles in your 60s doesn't seem to help much.

I thought about that and the new tau protein research for hours. And realized this: if they do find the real cause, a real cure - if they do erase this thing from the equation the way they took out small pox - about forty percent of what runs in the worry-background of my every day life would suddenly lift. LIke somebody throwing open a window in a stifling room.

But as my husband points out, that would only free up space for the stuff lurking on the sidelines: meteors crashing through the roof. Bears appearing on the riding trail. White sharks. I don't think I will every be comfortable here in mortality. It's just not natural - pain and time and death and the limits of space and time.

I don't want to be your mother, or my mother. I don't want my children having to deal with this. I don't want them to be left with those memories as the fresh ones.

God help us all.