Saturday, July 11, 2009

Don't Know Where To Start

I really need to be writing more here about my experiences with my Mom, but sometimes it just gets so overwhelming I don't know where to start. And I really am not on the front lines of this, my Dad is. So most of my experiences occur through my Dad. I know I am not experiencing a fraction of the stress that he must be feeling. I don't see my Mom much, in fact I haven't seen her since late June when we belatedly celebrated Father's Day (since we were on vacation the previous week). I really wanted to do something special for my Dad and also give him a break from Mom. My brother, husband, and son Alex took him golfing nearby. I stayed at (my) home with Mom, and (thankfully) my niece Jodi.

I'd like to say that I handled it well, but I really didn't. I repeatedly tried to come up with topics for conversation, but each time it just left her at a dead end trying to remember something, or it would quickly result in her arguing a particular point or another, and insisting that we were wrong. Argh. It was a beautiful day outside and I was really irritated that I ended up cooped up inside. I sat down in a chair in the living room and fired up my computer, to try to show Mom the photos from our recent vacation. As I was pulling them up, I quickly chatted with a friend on Facebook, telling her of my frustration. Her advice? "Get her outside and take her for a walk around the neighborhood." Uh, yeah right. My Mom very rarely sets foot outside unless it is to go somewhere. Plus her knees are so bad that she really can't walk that fast, so I knew even if she would go for a walk, I would go bananas at her slow pace.

So I decided to show her the vacation photos. "Alzheimer's patients LOVE reminiscing," says all the books and websites. I guess I should have read that a little closer. Reminiscing implies that the person doing the reminiscing was "there" in the photos, right? She wasn't in any of the photos, but I thought for sure she would be interested in seeing pictures of her grandkids enjoying the vacation, and of my Dad (who was there with us too). She didn't give one lick. As I started to page through them, she actually fell asleep. When she was awake she would look away. No interest whatsoever.

Hmmm... maybe she'd be more engaged if SHE were in the photos! Duh. I couldn't believe I was so stupid. I cracked out a bunch of old photos of Mom that I was using to put together a scrapbook. She perked up immediately. Wow. That is one of the things about Alzheimer's that I can't get used to. It's made her so, well, selfish. I don't mean that in a bad way, and just mean the kind of selfishness you would see in a 4-year-old who really doesn't know any better. She is tuned in if the spotlight is on her, but if it's not, she will just zone out and tune out. And then get a mopey look on her face like she is being ignored. That is really going to take some getting used to.

I looked at the clock. THAT burned about 15 minutes. UGH. The guys would still be golfing for a few more hours. I don't want to sound like a whiner, but I was going nuts. I just wanted to go out, anywhere, for a run, for a bike ride, SOMETHING that was active. I felt what my Dad must be feeling day in, day out with her, being cooped up in the house. My heart ached for him.

I quickly resigned myself to the 'ol babysitter, the TV. I really don't like TV and very rarely watch it, so I had no idea where to start. Funny how I have hundreds of channels and nothing seemed worth watching. I headed for the Hallmark Channel. Good God, "Little House on the Prairie." Yes, I'll admit I was a big fan of the show when I was little, but come on, I was not watching episode after episode. I had to fill time here. I went for the Lifetime channel and settled on a movie about a woman (played by Angie Harmon) who repeatedly poisoned her adopted kids, one after the other. You know, that Munchausen Syndrome thing. How's that for family fun? Mom was pretty riveted to the movie so we watched the rest.

The movie ended. Now what? I looked at the clock. 1:30 pm. AAARRRGGGHHHH! The boys would still be out golfing for a few more hours. I had to find something else and find it fast. I fixed some snacks for us to nibble on, and keep Mom occupied while I found something else to watch.

I found a movie on Pay-Per-View that Jodi said was good, "The Curious Case of Benjamin Button". I cringed when I saw that it would tack on another $5.99 to my already astronomical cable bill. But $5.99 was a small price to pay to keep Mom engaged with us for the next few hours. She watched it and seemed to follow the story, and I brought in some snacks to make it fun. She dozed off here and there, but then would wake up with a start and keep watching. Then she started in on another little kid thing. Every time the movie would fade to another scene, she would ask "Is it over yet? It this the end?" It got pretty annoying because it happened every few minutes for the remainder of the movie (and we were only HALF way through at that point). Patience, Sue. Yeah right. I'll be the first to admit I am not a patient person.

The movie ended and I looked at the clock. It would still be an hour or so. I struggled through as best I could, and once again felt extreme sympathy for my Dad once again. How could he possibly endure this day after day? It was so boring and non-stimulating.

The boys made it back and I quickly got dinner going. I was so happy to be occupied with something. We all had an enjoyable meal and ate it outside in our gazebo. After dinner, I brought out a Key Lime Pie that I had made. As I started cutting I remembered the Alzheimer's "me first" thing, so quickly served Mom her slice first. Then I served the rest of the family. As I handed out the last piece and set the knife down she looked kind of pouty and said "What don't I get a piece?" Ohhhhh geeze. I could see glances darting around the table. I was pissed. (I know it's so stupid and juvenile, but I was feeling like I intentionally served her first so she would feel important, and she thought I forgot her. I was trying so hard to not upset her, and now I did.) Of course we didn't deal with it the way the Alzheimer's 101 manual says. I should have said, "Gee Mom, I'm sorry, here's a piece of pie" and left it at that. But I didn't. None of us did. The natural inclination is to tell her she is wrong, that she ate the first piece of pie, and then offer her PROOF by pointing out the plate in front of her with graham cracker crumbs on it. That's exactly what we did. She argued a few rounds then looked away and changed the subject. Dumb move on our part. Trying to prove anything to someone in her condition is a total waste of time.

That is one problem I have seen my Dad encounter with her over and over. He spends a lot of energy and frustration trying to prove that she is mistaken, particularly when she makes a wild accusation. Like when she accused my aunt of stealing some of her money. Dad was mortified, and set out to show her cancelled checks, bank statement, whatever, to prove that everything was all there and accounted for. What was he supposed to do? Ask her to "pay back" the money? This was a tough call, and he actually considered that at some point. Giving my aunt some money to "pay her back." I thought, geeze Dad, if you do that it is like she is admitting that she stole money. And she didn't! And I didn't want Mom to think she did. I really don't know what was the right thing to do or say regarding that, and after awhile my Dad gave up trying to prove his point, and she went on to something else.

Same with her medications. This is one of the most difficult things Dad has to do. Mom's doctor had said that she needed to listen to Dad regarding her medications, and take them when she told her to. Seems simple, right. NOT! Mom was furious and even railed on and on about it to me (which she very seldom does). "HE can't tell me what to do! I can take it myself. I'm OLDER than he is, so I am smarter about these things. He can't control me!" Ugh. Anyway, here's the scary part. She constantly skips doses of both her memory meds and heart meds. And worse yet, she has numerous time taken double doses of these meds. And when confronted with the "proof" (missing pills, which are counted out by Dad), she gets angry and insists that never ever in the history of the world has she EVER missed a dose of any medication that was ever prescribed to her. Once again "proof" doesn't mean a damn thing to a person with Alzheimers. It's a waste of time. It's going to take a long time for my Dad and I to accept this. So we will likely continue to waste time and energy proving, all the while building up the stress and frustration.

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