What's "Normal?"

How do you explain to an ER doc that you've brought your 91-year-old mother in because she's acting too normal? And when he asks her what month and year it is and she gets it right, and he looks at you like Maybe YOU need to give us a urine sample, how do you explain that it's not normal that she's acting so normal? It helped that she went on to explain that she saw snow flakes hitting the windshield on the way in (it wasn't snowing) and that she's been seeing curtains moving in front of her face for several days (there weren't any curtains).

This started about two days earlier when my mother did something she doesn't usually do--she got up in the morning, got dressed, and came downstairs for breakfast. That was the first sign that something was amiss, because she's usually asleep until Kathy, her caregiver, or I come upstairs in the mid-afternoon to wake her up. She has always been a night owl and an insomniac. Now that she's in her 90's, and lives in my house, I have come to expect this. Okay, let's be honest... I've come to appreciate this. I don't have to worry about her when she's asleep. I hear her door creak every few hours as she gets up to use the bathroom, and I call up, "HI MOM" and make sure she smiles and acknowledges me, so I know she's fine, but I can also shop, write, watch the news, meet friends, etc., with the happy knowledge that she has no idea I'm neglecting her. I'll wake her up when it's convenient, or Kathy will (which is more convenient), and she'll be shocked that it's so late in the day. She'll say what she says every afternoon: "I never sleep this late!" and I'll know everything is normal.

So having her appear in the kitchen at 9am, wide awake, dressed for the day, and perky, is weird for me. When it happened two days in a row, I had the selfish thought that my life might have to change. I don't entertain my mother when she's up, but I think I should. I should take her with me on my errands, out with my friends, to the grocery store, etc. I should sit at the kitchen table and chat her up like Kathy does. I should take her to stimulating places, like Kathy does. But I don't want to. I like my alone time. I like to race from store to store when I shop, sit for hours at my computer when I write, and listen to Dr. Laura on my iPhone when I cook I don't want to slow down and help little old ladies in and out of cars, walk slowly through automatic-opening doors while holding onto little old ladies' elbows so they don't fall. I LIKE TO MOVE FAST WHEN I MOVE AT ALL. People tell me I'm a saint for caring for my mother (and mother-in-law), but I know that if God can read my mind, I'm still going to hell.

On Friday morning, not only was my mother up early, but she was worried about her winter coats--where were they, had they been stolen when she moved, etc. She fretted about this at length, and then started asking about kitchen utensils she couldn't find. She remembered many of these in great detail, and expressed her disgust that various people had probably taken them when she wasn't looking. I couldn't tell her that I had let the auction guy sell 90% of her stuff several years ago. Not the nice coats, but most of the kitchen stuff. My siblings took some things, I took some things, but she hadn't thrown anything away since the mid-70's, and how many wooden spoons can a person use, even if they have nice metal handles?

Kathy spent most of Friday with my mother because the kids were out of school. Kathy's other job is substitute teaching, which is how I met her. I spend most of Friday with my kids, particularly Sami, 16, shopping, eating lunch, etc. Kathy called me at the end of the afternoon to tell me that my mother had been way more alert than usual, but fretted about little things that normally wouldn't even claim her attention. She was worried that the Thanksgiving groceries I sent them to buy were for tonight's dinner, and got cranky with Kathy when she wouldn't bring them home faster. She also kept talking about a plant in a bowl of marbles that had recently flowered. Kathy is a very sweet, gentle woman, and usually fabulous at redirecting my mother, but it wasn't working!

That evening, I was watching the news, and my mother was in Betty's room, watching a different news channel. She came out to find me and started talking about Newt Gingrich, and how he was going to change the tax code, and how immigrants and college students were going to be expected to pay off our 15 trillion dollar debt. She was animated and urgent and quite bothered by this. About half of it made sense, but the other half was a bit twisted. Then she said, "You know, before we went to Vietnam to get Mikey (my adopted son), I had a bladder infection that I caught from Betty. I don't think I should be sharing the same bathroom with her."

Alarm bells went off in my head. Ten years ago, when we traveled to Vietnam, she didn't live with Betty, but something had made her bring up this subject. "Do you think you have a bladder infection?" I asked.

"Oh, I have no idea," she answered. "I just think it's wrong to change the tax code and make immigrants pay for all this."

I keep those packaged urine specimen cups in my kitchen cabinet, which will tell you something about my life. I gave her one and asked her to get me a urine sample when she could. A few minutes later, she was heading for the bathroom, sans cup, and I chased her down and handed it to her. "Oh, I already did that," she assured me. "Yes, but I need one more sample," I said, and she took the cup.

I called Kim, Betty's caregiver, and described the contents--cloudy, with little white floaties. "That's a bladder infection," she said. I suppose I was hoping this could wait until morning, but Colette (nurse friend) and the after-hours nurse at the doctor's office said I should bring her in as soon as possible.

Dreading an argument, I told my mom, "Your doctor wants you to go to the Emergency Room to make sure you don't have a bladder infection."

"Now?"

"Yes."

"Will I need a coat?"

She was gathering up a book to read and looking for her purse before I could absorb the fact that she was cooperating so nicely. Fast forward to the ER, and the doctor coming in and checking her for signs of confusion, giving me the "Maybe you're the confused one?" look, the test showing she indeed had a bladder infection, and getting IV fluids and a prescription for meds.

Somehow the bladder infection had brought her back to me for a day, but I knew it wouldn't last. Thanks to the antibiotics, she would soon go back to her happy fog, and to being quiet, and not caring enough about what she was on television to get excited about how Newt Gingrich was going to screw up the tax code. It was like that Robin Williams movie, Awakenings, when Robert DeNiro comes out of his vegetative state for a time, only to revert back.

If you're a caregiver for a senior citizen with dementia, watch for unusual signs of normalcy. If you're a research scientist, please find a way to synthesize the protein created during a bladder infection and put it in pill form. It's better than Aricept.

The Funniest Mikey Story So Far

My son, Mikey, 11, has always been able to make me laugh. In another post, I'll tell you the Mikey Story that ends with the question, "Does this make my butt look big?" Anyway, a couple of weeks ago, he was invited to a friend's house. I've met this boy, and he's very sweet, but we'd never been to his house. When we found it, it was a trailer in a rather sketchy neighborhood; not the kind of place Mikey is used to. The mom was very nice, though. Young, not much money, but clearly doing her best. She shared with me the fact that she had her first child at 17.

When I picked Mikey up later, he was very quiet. Finally, he said, "When I first got to ___'s house, I was kinda scared. I didn't think he lived in a place like that."

AHA. A TEACHING MOMENT.

Mikey has been struggling with grades this year, and I have been riding him pretty hard, trying to make him take school as seriously as he takes his ability to do back-flips and chin-ups. So I said, "You know, Mikey, there are two kinds of people who end up having to live in houses like that. One kind is people who do lousy in school, can't go to college, and end up making french fries for a living."

That got his attention, so I went on. "The other kind of people who have babies when they're too young and not ready to support them. They end up living in crummy houses because that's all they can afford."

"Do you realize," I said, in my most serious tone, "that you are in puberty, and you have working sperm now? (gasp of embarrassed horror from Mikey) Your voice has changed, you've grown 4 inches in a year, and physically, you're becoming an adult. At 11, you could father a child, and your baby would either end up aborted or living in poverty, and you'll be right there with him, because if I don't kill you, I'll make sure you're supporting him. No college, no fun, just working at whatever crappy job you can get for the rest of your life." I was on a roll. "And here's the deal," I continued. "You're a cute boy, and in the next few years, some stupid little girl is going to offer to have sex with you because she'll figure that's the way to make you like her. Girls are like that now, and it can ruin both your lives."

Long silence. Finally, Mikey spoke...

"You don't have to worry about that, Mom. I'm not going to get a girl pregnant."

I congratulated myself on my brilliant parenting.

"At least until I get my grades up."

Before I Begin, Let's Talk About Fish

I just realized that the cute little fishy strip I placed on this website does several interesting things. If you put your mouse arrow in the strip, but fishies will gather around it. And if you click your left mouse button, you leave behind fish food for them. PLEASE FEED THE FISH.

Now I have to tell you what's going on downstairs in my kitchen. My mother, 91, and my mother-in-law, Betty, 87, are discussing how glad they are not to be senile. My mother just said that for a while there, she thought her memory was getting bad, but it turned out that the problem was just temporary. And Betty says the only pleasure she gets from going to the Senior Center is that the people there are senile, and she's glad she's not like them! This is the third time in the last five minutes that they've circled around the topic of aging, and had the exact same exchange. No irony there, no siree.

OLD POSTS I CAN'T BEAR TO LOSE, pt. 3

Life at the VA Hospital (6/25/09)
Well, it felt like a life sentence, anyway. I took MIL for her 6-month checkup, and just as we were ready to leave, she got sick, vomited, and ended up with full-body tremors that came every 3 to 4 seconds. Damn spooky, and we ended up spending the rest of the day in the Veterans Administration Hospital ER.

I had brought my iphone for entertainment, but the battery died, and I couldn't leave Betty sitting there while I went to my car to charge it so I could keep playing Scrabble. Well, I could have, but it would have looked bad.

So we ate lunch out of the nasty vending machines (her blood sugar was low, a possible contributing factor to the tremors). I spent the day making horrible faces at Betty when nobody was looking (including her) and suffering through her endlessly repeated, "I feel so guilty ruining your day," almost as often as she suffered the tremors.

At 5pm, they finally checked her in for overnight observation, and I went home. If my kids weren't so weirded out by adults drinking alcohol, I would have self-medicated. As it was, I met my family at Tae Kwon Do class and we went out for dinner. From now on, I'm not going near the VA Hospital without my iphone charger. Yes, it's all about ME.

Oh, I suppose I should mention that MIL is fine. They think it was low blood sugar, stress, and the need for her next dose of restless leg medicine that messed her up that day. David picked her up in the morning and she's been fine since.

We're Trying Aricept (6/27/09)
The VA doctors finally agreed to prescribe this, and I gave Betty the first pill last night. It's supposed to be taken at bedtime because of potential side effects. While the TV ads say "well-tolerated by most people," when you read the printed disclaimers in the box, it causes everything short of INSTANT DEATH.

Betty is worried this morning, for example, because she had a very vivid dream, and she's afraid it's a sign that she's losing her mind. She doesn't remember getting the diagnosis of Alzheimer's (despite having been told it 50 times), but she remembers seeing the diagnosis written on a paper in a doctor's office. Actually, she saw it on our kitchen table. She's sad and worried about it, and can't stop talking about how real the dream was. I got good advice from the cute curly-headed VA doctor: I told her that the fact that she DID figure out that it was a dream is a sign that she's NOT crazy. I on the other hand...

"I May Be Dumb, But I'm Not Stupid"

We found about two dozen sleeping pills stashed in Betty's nightstand. We give her two at bedtime, but she's almost never ready to go to sleep when we do this, and apparently, she has been putting them in her drawer and forgetting about them. So she has collected enough pills to kill herself twice over, but doesn't see any danger in my leaving them there. I suggested that she might take two and then forget she had done it and take more, etc. See above for her response.

I think we'll skip the sleeping pills for now.

OLD POSTS I CAN'T BEAR TO LOSE, pt. 2

Signs of Trouble (5/30/09)
We've had the discussion a dozen times since Betty started a kitchen fire a month after moving in. DON'T USE THE STOVE. NO, NEVER. YES, I MEAN YOU. ALWAYS. NO STOVE. EVER. NO COOKING. NEVER. NOT EVEN A LITTLE. EVER EVER EVER.

It's been months since we've had to discuss this, but yesterday I had a large package of hamburger patties defrosting on the two front burners when I heard the click-click-click-click of the ignitor. She was trying to light the burner to soften the earpieces of her reading glasses. Fortunately, she doesn't know how to use the stove, or flames would have melted the plastic wrap on my hamburger before I could have stopped her.

So we had the discussion for the 13th time, and she said that every sane person (meaning everybody except me) knows you use the kitchen stove to adjust your glasses! I tried to raise my voice just enough to make an impression on her, but apparently it didn't take, because she tried it again this morning. I heard the clicking from upstairs, but David was closer and he stopped her.

There is now a sign above the stove that says DO NOT USE THE STOVE. There is a similar sign on the patio door that says DO NOT LET ANY CATS OUTSIDE. That one has worked fairly well, except when a cat escapes, comes back to that door, and she opens it to let that cat IN, thus letting two or three others OUT.

She saw the new sign and asked, "What's wrong with the stove?" I explained, but she no longer remembers trying to use the stove, nor why she's not allowed, and so she's upset about the sign. She keeps insisting the sign is not necessary because she'd never do anything she's been told not to do, but she doesn't remember what I've told her not to do, and she certainly doesn't remember that she doesn't remember. So we do our little Dance Around the Logic Pole. If arguing with Betty was aerobic exercise, I'd be a size 4.

My Two Moms (6/9/09)
Well, not really. One's Betty, my MIL, and one's my mother, but I'm starting to see worrisome similarities. My mom lives one neighborhood north of us and it older than Betty, but comes from a long line of women who lived long lives, free of dementia. I'm afraid my mother, 89, is going to break that winning streak. She agreed to give up her car last week, but she's having more and more trouble keeping details straight in her mind. I took her shopping yesterday, along with the Korea high school student who lives with us, and Ra Youn helped my mother carry her groceries into her house. Mom had her keys in her hand, and tried to open her front door by clicking the electronic car door opener thingy. She covered up quickly when it didn't work, but I saw it.

We have a follow-up appointment with her neuro-psychologist on July 1. I'm going to insist that he take a look at her list of medications to see if there's something there that explains this, and I'm going to ask him to put her on Aricept.

OLD POSTS I CAN'T BEAR TO LOSE, pt. 1

I used to have three blogs, and now I'm going down to one. Well, two. But in going back to read the third blog, about living with an Alzheimer's patient, I realized I didn't want to lose all those stories... So I'm sticking them into a few posts on this blog. HOPE YOU ENJOY!

EVERY DAY IS DIFFERENT HERE (5/13/09)
Betty is very sharp today--walking fairly well, philosphizing about the mythology of God, the innate worthlessness of man, and the supremacy of viruses and insects. She was a sociology professor and still retains her intellect, at least on days like this. She doesn't want to go to the Senior Center, but she missed last Friday and Monday, and needs the physical therapy. And I need her to be gone. She'll do more talking and interacting there than she will here, so I don't feel too guilty about taking her, although she considers it a waste of time and says all anybody does there is watch TV. I think her anti-depressant is working, as is the physical therapy. She hasn't used her walker for days, and although she always looks like she's going to tall over, she hasn't done so in over a week.

Yesterday I took her to Barnes and Noble (her happy place) and left her for about 90 minutes. I was panicked the whole time, but when I came back, she was fine. She had a 2-foot tall stack of books to buy, although she'd previously agreed to settle for three books. I gave in, and it occurred to me that fewer trips is better than lots of trips, and the only way to justify not taking her is to remind her that she just spent $117.

INDEPENDENCE--IT'S NOT EASY (5/21/09)
Betty tried to fix her own lunch a few da ys ago because I was gone. She poured a large can of soup in a china bowl, warmed it in the microwave, then dropped it on the range top. I came home with one hour to prepare dinner for the family, including my mother, whom I'd invited, and found smashed china and thick soup convering the burners and running down the cabinets, and pooling on the floor. Betty was using spatulas and spoons to try to scoop the soup back into another bowl, so she could eat it. I had to show her a piece of broken bowl in her new bowl to convince her this wasn't a good idea. She wanted to help clean up the mess, which she felt terrible about causing, but this would have taken hours. She retreated to her room and had to be coaxed out to eat dinner.

After dinner she couldn't quite remember what had happened, and demanded that my 9-year-old son, who was home at the time, tell her what she had done. "Something is happening to me," she kept repeating. "I don't understand it."

I did a good job of not getting angry at her when I saw the mess, but my husband and daugher were gone, so I had to clean it up myself, and my mother showed up for dinner 45 minutes early, and it was a complete disaster. I WAS angry, but Betty was so upset with herself that I couldn't get mad at her. I tried to reassure her that it was just an accident caused by low blook sugar, and that the only thing she should have done differently was to ask Mikey to help her with the microwave. Mikey came to me later and "confessed" that although he had asked her what she was doing when he saw her with the soup, he let her proceed on her own since she wasn't actually using the stove. She's not allowed since she almost burned down the house with the toaster oven. He felt guilty that he hadn't stepped in to help her, but was torn because he's been told not to act like her babysitter unless he sees her doing something really dangerous. of course, I reassured him that he wasn't at fault, and that the only thing we lost was a can of soup and a dish.

I've had to learn to let my kids try things on their own, even if they end up causing a mess, but I can't do this with Betty. She's not going to get better, not going to retain new skills, and not going to learn from her mistakes. It's a balancing act between not insulting her by treating her like an incompetent, and not tripling my workload by letting her do things for herself.

Back to the Real World

I'm back from my yearly week-long vacation from reality, during which I drive to Iowa City and take classes at the Iowa Summer Writing Festival. Kim and Kathy helped with Betty and my mom, my kids and husband stepped up to the plate and kept everybody fed and watered, and I got to focus on writing for 8 days.

The only problem is that I'd like to be gone for two weeks... Someday...

Am I a Slow Learner?

My mother is turning 91 today, and is now living with us. I Facebooked this (is that a verb?) and got an astonishing number of comments, ranging from ARE YOU NUTS? to I'LL PRAY FOR YOU! Kidding aside, it is so wonderful to be connected to old and new friends and to know they care. But I thought I'd use this venue to explain why we moved Mom back in here, and why I think it's going to be okay. It's too complex for FB posts.

To begin, we bought this house four years ago because we thought it would be a good idea to move my mom in with us. She wasn't paying her bills, her driving was scaring people, and she seemed to be lonely and depressed. IT WAS A TERRIBLE IDEA. She tried to run my household, picked on Mikey (then 7), fawned over Sami (then 11), and irritated David by refusing to contribute to home improvements. She refused to see that she was benefiting financially--I found a renter for her house to more than cover the mortgage, and hounded him every month for the rent, she wasn't paying for lawn mowing, shoveling, etc.. Her bank account rose every month, while ours shrank.

Anyway, after 12 hideous months, I threw out her renter, and moved her and her (I'm not kidding) hundreds of boxes of stuff back to her house, and found her a companionm, Kathy, to come in the afternoons and keep her life organized.

We moved MIL Betty in to help pay the mortgage because the housing crisis was in full swing, and we knew we'd never sell this place fast enough to stay out of bankruptcy. We also took in a Korean high school student, for a monthly fee, who turned out to be clinically depressed and possibly suicidal. Lots of material for future novels, yes, but no fun to live with.

FAST FORWARD.

We move my mom into a very fancy Assisted Living Center two years ago, which seemed like the best solution for her diminishing life skills. It was 10 minutes away, so I could keep an eye on things, but when my mother started falling frequently, and I asked to install an internet camera so I could monitor her from my home, I ran into a BRICK CORPORATE WALL. Then the place was sold, and the new owners made lots of stupid changes to increase profits. Most of the best nurses and caregivers left, and the ones who remained were told not to communicate directly with families, but to run information through a chain of command. So if I called and asked, "How's the new medicine working?" or "Is she eating better?" it might take 48 hours to get a now outdated answer, IF they called back at all.

And then my mother started refusing to get out of bed. Sleeping pills to cure her chronic insomnia were implicated in her falling, and strategies we came up with to monitor her sleeping at night were ignored by the overnight staff. I was supposed to be called if she slept through two meals in a day, but this rarely happened. I'd get a call from Kathy at 4pm, telling me that my mom was still sound asleep in bed, having missed breakfast and lunch. No matter how much hell I raised about this--and I think I'm pretty good at this--nothing changed.

So I've moved her back in with us three days ago. Stupid, maybe, but she has lost much of her "edge" in the last few years. So far she's not bothered by how Mikey chews his food, where he drops his socks, or any of the other things that she felt compelled to bring to my attention last time. She and Betty enjoy each other's company, and my mother's cat, Benny, 15, is integrating into our feline community.

It's nearly impossible to get my mother out of bed before noon, but her doctor says it's not that important, as long as she doesn't completely switch day/night cycles. So I have lots of private time in the morning for writing, shopping, etc., and when my mother does get up, she's staying awake all day. We talk, she reads, she helps set the table, fill the dishwasher, etc. I can give her simple food prep tasks, which she enjoys, and she's not sitting alone in her $4,000/month room at the Assisted Living center, with nothing to do and no one to talk to. They had lots of activities, but she refused to participate in most of them, and I now see that the whole concept of Assisted Living, where she had no responsibilities for doing anything for herself contributed toher decline. Kathy still comes in the afternoons and takes her shopping, walking, etc., so I'm not constantly "on duty."

Best of all, I'm not feeling guilty that I dumped her in a fancy institution. I'm back to feeling like A GOOD DAUGHTER, which makes up for a lot.

And if it turns to crap again, there's always antidepressants, right?