Monday, October 31, 2016

Scoutmaster minute published in troop newsletter March 2015

Scoutmaster Minute  
March 2015 
The Scoutmaster Minute theme for March is Bravery. Every one of you can probably think of an act of bravery, like standing up to a bully. Bravery comes in many guises; it’s not always large in scope--running into a burning building.  It can be as small as holding someone’s hand. There are nuances to bravery. One of my favorite novels, To Kill A Mockingbird, is a study of what it means to be brave.  I won’t spoil the story for those who haven’t read it (or the movie for those who haven’t seen it) 
Mockingbird presents different characters with a choice between doing what’s right, when doing what’s right means criticism, ridicule, threats and danger; and doing what’s easy. Not every character makes the same choice—that’s the story.  What would you do? What if the easy path isn’t actually doing wrong, it’s just not doing right? What does bravery have to do with right and wrong?  It takes tremendous courage to go against the tide of what everyone else is doing, even when it’s wrong.  One of my favorite authors, Edmund Burke, said “The only thing necessary for the triumph of evil is for good men to do nothing.”  
History shows us people who did nothing: bystanders, people following orders, people who don’t believe they have the authority to act.  History also offers examples of people who chose to do something, even though that was more difficult, and in some cases, more dangerous. I hope this is a choice none of you will ever have to make.  But if you are confronted with a tough moral choice, one that requires you be brave and face down others who would do nothing, I know you’ve got the stuff.  Scouting equips youth with the values, leadership skills and confidence to make tough choices. Because you choose to be a scout, I know you would choose to do something.   

Scoutmaster Minute, published in the scout newsletter January 2015

One of my favorite books is Jane Eyre. When I was a teenager, I read it several times, drawn to the story of Jane trying to determine who she is and who she wants to be. It’s a nineteenth century book, and seems very old fashioned to modern readers. But I am still captivated by the journey of the main character.  At one point in the story Jane is offered everything she wants if she will violate her principles. She thinks to herself, why not? Who cares how I get what I want. Who cares for me? Then she answers herself: 
I care for myself. The more solitary, the more friendless, the more unsustained I am, the more I will respect myself. I will keep the law given by God; sanctioned by man. I will hold to the principles received by me when I was sane, and not mad—as I am now. Laws and principles are not for the times when there is no temptation. . . . They have a worth—so I have always believed; and if I cannot believe it now, it is because I am insane 
By choosing to adhere to her principles, Jane demonstrated that she might have been a scout.  She chose to put the kind of person she wanted to be over the things she wanted. Would you trade everything you ever desired: Love, Belonging and Worldly Wealth, for your principles? Which of those principles would you feel the hardest to violate. Could you tell a lie to get wealth? Could you be unkind to get a better position? How unkind and to whom?  
Every week when we say those 12 words, it’s easy.  You’ve memorized them, and we say them together in a musical rhythm. What your leaders hope for you, is that when you are alone, when it seems like you’re friendless and unsustained, you will hear the voices of your scout friends saying those 12 words, and you will choose the kind of person you want to be over the things you want: that you will choose to be a scout. 

Scoutmaster minute November 2015

The word of the month is Trustworthy. The word is on my mind this month because it’s the time of year when Webelos scouts are visiting troops to see which troop is right for them. It’s also the time parents are visiting troops to see which makes them feel best about scouting. The question on the minds of the parents is troop 320’s trustworthiness. Can they send their was-a-cub-scout-just-yesterday son into the woods with our troop and trust that we will care for and teach their scout? I don’t worry about the scouts—you scouts will all recall how you were chomping at the bit for independence when you crossed over from cubs—the scouts are ready. The Scouts will be fine.  

Parents, well, the difference between cubs and scouts is the difference between elementary and middle school. It’s a big change, and they happen at nearly the same time. Parents aren’t always ready for it. 

We weren’t ready when you went to preschool, or when you rode your first two wheeler. Parents won’t be ready for it when you turn 16 and drive, or 18 and go away to college.  But parents learn to let go, each step of the way, when you are ready—we go along acting like we’re ready too—and pretending to be ready lets us get actually behind your independence.  So when you see anxious new parents visiting with the Webelos scouts, remember, they are only pretending they are fine, and say something nice and soothing. Like you do when the scoutmaster asks you if this is in the guide to safe scouting.  

Scoutmaster minute from February 2015 Newsletter

Scoutmaster Minute  
Many of you may not know that I was English Major in in college. One of my favorite courses I ever took was Latin, not because Latin itself was so interesting, but because the professor who taught Latin was a philologist. Philology is the study of language. Philologists use written source material to find the earliest appearance of a word and/or words related to it. Professor Lennon taught me to look for nuances, small differences in meaning, in word use that change over time. As a study, it sounds very dry, but it’s not. Language is not static, but fluid—changing to fit the needs of the people using it. For example, the word text used to mean typeface or a body of writing. If someone from 1910 were to be transported to 2015, the highway signs “Don’t Text and Drive” would be very confusing. In 1910, text was not a verb.  
Interestingly, the theme word for February’s scoutmaster minute, “clean, has remained relatively unchanging Clean means now what it meant in 1910. But, thanks to my lessons from Professor Lennon, when I think of clean I think of all the nuances of the word. What often comes to mind is not a dictionary definition, but sayings of my mother’s. One thing my mom used to say a lot when I was a kid, and I’m sure you’ll have no trouble believing it, is “you kids are driving me clean out of my mind.” In this use, you can see that clean means completely or entirely. The reason this pops into my mind when thinking about clean in a Boy Scout context, is that the Scout Law and Oath together express an intention to be both clean, as in un-dirty, but also morally straight, which is a clean of mind and habit, an unstained or untainted condition. 
Now, think about the order of the words in the scout law. We are working the virtues in reverse order, but every week when you say the law, you say: “A Scout is trustworthy, loyal, helpful, friendly, courteous, kind, obedient, cheerful, thrifty, brave, clean, and reverent.”  There is deliberation in the order of these ideas.  You have to get them all, completely and entirely to embody what it means to be a scout. A person who is untruthful, unclean, or morally muddled may never reach that state of awed respect that is reverence. Thinking about how completely the law is a guide for life makes me realize anew what a genius Baden-Powell is. Or as my mom would say,he is real clean and swift.” 

Scoutmaster Minute April 2015 
Continuing through the scout law, the Scoutmaster theme for April is thrifty.  Thrift is one of those words whose meaning had subtly shifted over time.  I can’t remember the first time I heard someone say they were “going thrifting,” but I’m pretty certain that when I was a kid, thrift wasn’t a verb. In fact, “thrifty” was what the adults in my life would say about adults who didn’t like to spend money.  When Baden-Powell was putting the values he deemed important into the scout law.  

My family wasn’t wealthy in the spendthrifty 70’s, when I was scout age, but my childhood was once of abundance compared to that my parents.   

When my mom was a kid growing up on a farm in Kentucky, thrift was a way of life. Food spoiled couldn’t be replaced at the local grocery. The cow could be milked once a day, the garden harvest couldn’t be left on the vine or go unweeded, and a pig butchered had to be smoked or eaten.  If the food wasn’t stored or prepared properly, the family went hungry.  


Last week I attended an Alzheimer's Association dinner at Sinclair Community College with my good friend Robin. I was energized and disappointed by the information given at the "Will I be Next" event. I was energized by the amount of Alzheimer's research being conducted in the Dayton, Ohio area. I live at the convergence of medical and technological advances designed to help the DSLO (dementia suffering loved one) and the caregiver. It's heartening to see how many people are working toward a goal.

Disheartening was the commercial the Alzheimer's Association ran
because while it was meant to inspire hope and encourage donations to our goal--the "survivor" in the commercial is very young--13? Which tells me, that in the mind of the people developing the commercial, the solution is 50 years away. And that is too late.

We had a room of thirty and forty and (ahem ahem ) fifty somethings in that room who all hope to be that first survivor. We need to find the cure, prevent the onset and stop this killer now.
Not in fifty years!

Monday, October 24, 2016

Rip Current

Alzheimer's Mom has fixed ideas. It can be hard to suppress the need to correct her. Some of these ideas are a result of moving her. Even though it has been almost year since we moved her, she has this idea that she is on vacation. She'll say that "when we go home from here," or "It's been so nice to spend all this time with you, but I'm ready to go home."

Sometimes, she looks around her house and recognizes her stuff, but other times she'll claim things were here when she moved in. For example, her new house has built in bookshelves in the living room.  Her books are in those shelves. She packed the books at her old house, and she helped to unpack and put them on the new shelves. But she'll say--"the people who used to live here left those books." I used to try to help her see them as her books--I would take them out and show her name written in the fly leaf, and I would feel frustrated at how her refusal to accept her move. One day when my sister was visiting, my mom was showing her around her "rental house," and said "these books were here when I moved in." Kim didn't miss a beat, she said "have you read any of them?" and mom went on to have a discussion about how much she loves to read. I realized that as frustrated as I am by mom's "refusal," I am just as stuck in needing her to recognize her stuff.  That trying to "help" her recognize stuff is something I need from her, not something she needs.

When I was kid, I once went fishing with my dad along the Little Miami River. I was bored with fishing, and wanted to swim in the river. Dad said I couldn't swim in the river because it has undertows and rip currents caused by shoals in the river bed. "You can get sucked under in a flash, and I wouldn't be able to save you." I looked at the placid slow moving river and thought "but I am a good swimmer." I wanted to argue that I could handle the current.

Now, when I am talking to mom, I understand what a rip current is and how it can drag you under. It's not just that mom has shoals in her riverbed, either. Sometimes the current is caused by my own need to make her see things the way they are and not the way her brain is reconstructing them. Yesterday she was talking about how I was as a child, congratulating herself on how well I turned out. The person and events she described had nothing to do with me, and as far as I am aware, none of my siblings either. I felt such an upsurge of anger at her for not seeing me, for making up a fake me and being so proud of the fake me.

She often complains to me about me. I can be with her and she'll tell me she has a daughter that lives next door that never comes over. I can be walking with her and she'll tell me that her daughter that lives next door should walk with her because she is putting on weight. She'll tell me that her daughter has a pretty face, but could brighten herself up if she would wear lipstick.  She'll tell me that she used to walk three miles a day, but now she doesn't get to walk anymore, because her daughter won't walk with her.

I know that Alzheimer's makes her lonely. I know she can't remember that my brother was there on Sunday, and her "friend" Tina was there Monday night, or that I come over every day for coffee in the morning, or that Kim comes on Tuesdays, or that Wendy called, or that Jamie face timed. I know she doesn't remember that I've been there two minutes after I've left. I know that when she follows me across the yard and knocks on the door, its because she wants company, not because I am not doing enough. But it can make me feel very frustrated. I feel like I am caught in the current of her lost memory, losing my reality, losing contact with the bottom of things.

I thank God for my siblings, who can verify that my world exists. Who can say "yeah, that never happened." Who can say "she did that when I was there." Who can say to me, "its ok." I am grateful for friends that let me talk on and on about how hard it is. I am grateful that the same lost memory that pulls me under, makes her forget how I occasionally try to reorder her reality to fit mine. She doesn't stay mad at me for showing her the name on the fly leaf of a book, or showing her a picture of herself walking with me. She is always glad to see me when I knock on her door, even if I go out frustrated and come back in one minute, she answers the door as if we haven't seen each other in years. Always, she is a gentle, placid river on the surface. 

Friday, October 21, 2016

Part of the process

It's a strange thing to be in this place, caring for one's parent. Mom is steadily declining. We knew it when we moved her. It is more evident than ever. 11 months have lost decades of memory, and she is often like a person I've never met. She can be angry for no reason that I understand. Like a toddler--sometimes emotions just sweep through her, and she is helpless to cope with them. Sometimes she is aware of her loss and weeps. I am not sure which is worse, her baffled anger or her grief.

Many things about caring for mom are hard. I am lonely in it, because it's boring to hear about. It's like stories about your kids--while fascinating to you, they are not really that interesting to others. My siblings talk about mom, but they don't feel comfortable with it. Not because they don't want to hear, but it makes them feel guilty. They feel guilty for not being here. I don't blame them. I feel guilty too, for getting the time they don't. As hard at it is--it is also very special to be the one walking with her: poignant, funny, and sad.

Guilt is a part of the process, it seems. We all feel guilty for upsetting mom when she is upset--even if we don't know what we've done. We all have this childhood ingrained sense of disappointing her. We kids feel guilt toward each other, for not doing enough, or more, or for not knowing what to do.
I feel guilty when I am away from her too. When my sibs come, I run away and embrace my time. I don't even stay to visit with them. I run away, but I feel guilty for having such relief at escaping. And sometimes, it is an escape.

We have a caregiver coming 3 days a week now. Tina is a gift. She "visits" mom. We've enacted this elaborate ruse of Tina being a friend of mine who just fell in love with mom and wants to visit her. Tina brings games and art supplies and she and mom spend 12 hours a week together. It's such a relief to have another set of eyes on mom. Trained eyes, that can identify changes in behavior and help come up with solutions.

Eating is a problem. Mom no longer does well with silverware. She needs foods she can eat with her hands, and even those sometimes thwart her. Her palate has changed, she doesn't like anything remotely spicy and really only tastes bitter and sweet. So, she'd live on coffee and ice cream if she had her way. I let her eat what she likes, there is no up from here, after all, and why should she have to eat things she doesn't like? So, no Ensure protein drinks.

I bring her gifts of fruit and veggies I know she likes, but one or two at a time. One perfect peach. A dish of cut cantaloupe. I keep very little in her fridge because she throws it away "I think this belongs to the person who lived in this house before me" or just gets it out of the fridge and forgets about it. Sometimes she leaves it on the counter to "defrost." Much food is just wasted.

Monday, I bought a pound of the honey ham she likes. I kept half of it at my house in the "mom drawer" of my fridge, and took the rest to her house on Tuesday morning. I put it on the shelf in her fridge next to a tupperware of sliced tomato, a baggie of lettuce, a loaf of bread and container of mayo. I wrote on her white board in the kitchen: "You have the makings of a yummy ham sandwich in the fridge for lunch."

On Tuesday, after school, I went over to see her and she said "have you had lunch?" I said yes, but I'd make her lunch if she was hungry. She opened the fridge and pulled out a paper towel. In it was a ham sandwich with three bites out of it. "Hmnn," she said "I wonder who put this sandwich in there?"
She reached back in the fridge two more times and pulled out two more ham sandwiches, wrapped in paper towels. "What is going on?" she said. She put her hands on her hips and shook her head. "Someone," she said "has been sneaking in here and making ham sandwiches."

 I said, "I don't know mom, who would do that?"
She said, "Well, anybody! Everyone likes ham sandwiches." She put them all back in the fridge in their paper towels. "They'll be back for them later I guess."

Then, She pulled out the ham and the bread. "I am having a ham sandwich, do you want one?"

I used to be worried about the "people" who came to make ham sandwiches, or eat her ice cream, or play cards with her. Delusions? Actual people who she is mistaking for someone else? After 11 months, I know her house is peopled by her memories as they dance about and recombine. My grandma and my Aunt Ina Mae visit all the time, and they've been gone for years. Mom has great grandbabies she brags about that haven't been born yet. I do my best to sort them out and not upset her or get upset.

My gift is how silly I am. She thrives on impromptu waltzes and how-many-nursery-rhymes-can-you-say contests. She loves it when I challenge her to a birthday duel--she can't remember that her sister died, but she knows all 12 of her siblings birth dates and delights in the fact that I have to look them up on the family tree. You tube is my friend. We have learned the boot scoot boogie, the electric slide and the zumba booty circle about a million times. I try to always be the imp in her life. The one that brings unexpected flowers, Angel food cake, or a bird feeder. She loves surprises, and the gift of Alzheimer's is that she is often surprised. Even by the ham sandwiches in the fridge, and so we muddle on.


This morning mom is really online.
I talked to her this morning and I was really talking to my mom for the first time in a long time. We talked about our earliest memories. She said that she doesn't have a distinct early memory, but her mother is always there when she tries to think back.

 There were some early memories of a yellow dress, "Patty got a pink one, but mine was yellow" and the midwife coming to deliver the twins. "I think there might be two babies." But most of my early memories are just feelings. She said, "I can close my eyes and hear my mother singing. 

It got me thinking about those early life experiences. My kids don't remember a lot of their early childhoods. I don't remember a lot of my early childhood. But we all know that those early experiences matter. Attachment disorders demonstrate that whether you can articulate the memory or not, those early experiences dictate a lot about how you feel about yourself and others throughout your life.

What if it’s the same with late life? So what if mom can't remember what day it is or when I was last at her house. Does she feel that I love her? I hope so. I try to show her affection as much as possible. I hug on her and kiss her. I dance with her and sing to her—just like I did with my kids when they were little. They don't remember it, but they know I love them. I am hoping it works that way with mom too.


One of the things that is hardest about mom's Alzheimer's is how it makes me feel about her; tired, guilty, annoyed, angry and helpless.

Today, for example, mom got up with the sun. She started knocking on my back door every 4 minutes (not an exaggeration--really every 4 minutes) starting at 6:45 a.m. When she first moved here, I would run to the door every time she knocked. I finally realized she has no impulse control. She wants to tell me something and she comes over. Sometimes she wants to tell me that she is from Beattyville, KY.

At 6 a.m.

So now, I don't run to the door. I peep out the window to make sure she's ok, and I let her go home disappointed.

She doesn't remember, always. Sometimes, she does. Sometimes she says, "I came over this morning and you weren't home." I am honest, I say "I heard someone knocking, but when I looked at the clock, it was too early for callers, so I didn't get up out of bed." She's always very apologetic about waking me, but she'll do it again tomorrow. And I feel annoyed and guilty.

She has a white board in her kitchen that I write on every night for the next day, telling her exactly what is happening on that day. Today the board said "Curtis will be over at 9 am" That's later than usual, but both my kids are out of town and I wanted bit of a lie in. Being at mom's at 9 still means I'm up at 7:30, because I have to do my morning chores before I go over--because, mom is a time eater.

This morning, the plan was that I would go over at 9, read the paper, drink some coffee, get her started on her housework and go to my house by 10:30. I put the list of stuff she wants to get done on the white board, and she crosses each thing off as she finishes. Vacuum, dust mop and make the bed are on the list today. And go to the pool, at 2:30

She reads the board, and goes into a freak about the pool. She says. "I don't have a suit, and I can't swim. I would never go in the water. I am too fat and too old to go to the pool."
I ignore the swimming and the fat/old thing and jump on the thing I can fix.
I say "you do have a bathing suit. Its cute, navy blue with polka dots. You just wore it to the pool last week."

She says, "Oh no, I can't swim, I would never go in the water."

I say, "you went in the water, because its so hot, and because you were with me. I'm a great swimmer, and I would never let you drown."

She says, "Is that me?" pointing to a person in the background of the picture, a young blonde woman wearing a two piece, walking around the edge of the pool.

I say "No, you're in the water, here, next to me. See how you have those pool noodles under your arm? and see your pretty bathing suit?"

She says, " I don't think I have that suit anymore." and she sounds angry, "This is an old picture." She hands me back the phone.

I say, "Last week isn't so long ago, I bet you have your suit hanging up in the bathroom. Let's lay it out for this afternoon, so you won't worry."

We start looking. An hour later, we find her suit hanging up, on a hanger, in the front hall coat closet.I have no idea what connections in her head made that the place to keep a bathing suit, but I'll look there first, next time. She holds the suit up and looks at.

She says "It looks like a suit for a fat person, with that bubble top. I'm not fat, I walk three miles a day."

I say, "This can't be the suit of a fat person, because its your suit, and you're just a slip of a thing."

She says "I love it when you say that, I feel slimmer already. But I haven't walked yet today."

I say "I know, but today its so hot, we're going to go walk in the pool. The water resistance is good for your muscles, and the sunshine gives us vitamin D. So, I'll be back over at 2:30, when the sun is a little past it's peak, because I am a fair skinned girl, not like you, you brown berry!"

She laughs, "I know, in the summer, its hard to tell if I've scrubbed myself clean, I get so tan"

"I know," I say, "I'll see you later, we have to get our housework done, so we can play."

She says, following me to the door, "It says on the board we're going swimming, but I don't have a bathing suit."

Sigh. tired, and guilty


Yesterday, my mom told me her daughter lives next door and never comes to see her.
I said "really? What a smoe!"
And she said "oh no, she's wonderful! Comes to see me every day and always brings me presents. Yesterday she brought me apple slices and homemade bread with butter." ( no apple, yes bread)

"Well, that's nice of her," I said.

"Yes, she's a good sister," mom said

Strange Country

The Alzheimer's brain is a strange country. Some days, I try to make maps of how connections work--but in a landscape that is constantly shifting, it's hard to get good data.

Some things, I know to be true. For instance, watching TV is not good for DSLO. It's so passive, and Alzheimer's blurs the line between real and fantasy. Sometimes when mom watches TV, she falls into the show, believing she is being stalked or that she has to go to school. It's hard to bring her back to real when this happens, and even the news can draw her in.

So, I've been reading to her. Which has been good for months. Even though we're reading Little House on the Prairie books, which aren't complex, I have to stop and review what's happening. I remind her of character names and plot points.

This month, we're in The Long Winter. She has been captivated by the story. But yesterday, our warmest day of the year so far, we were reading about Laura and her family huddled around the fire of hay sticks. Mom began to shiver. I had to stop reading and dance her around (gently, because of her back) to distract her so I could redirect. It's the first time she has jumped into a book and funny, because my sister had just told us how when she read that part of the book, she was all wrapped up in a quilt.

So, I changed to a game. We play a game called "name five." We started playing this game at the Woolly Worm festival, years ago, when my kids were little. It started as a car game, and used to be "name 10, " but 10 is too hard now. The game works like this: we ask each other to name five of something, like, I ask mom to name five kinds of cars.

She says "Ford, Chevy, Ford, Pontiac---How many is that?"

I say "3, you said Ford twice."

She says "ok, 3. Did I say Ford?"

We go like this a bit and then it's my turn. She says "name five cakes."

We play the game for an hour. Every asking turn, Mom asks me name five cakes. At first, I name the same five cakes every time, waiting to see if she ever finds my answer familiar. After 7 times, I start changing cakes and making up cake names like "Coconut Macaroon Cake" to see what her reaction will be. She never claims not to have heard of a cake, she doesn't comment if I name the same cake twice in a list, unless I put the answers right in a row---chocolate cake, chocolate cake---then she'll say "you said that."

Then I ask her "name five presidents."

She says, slowly, thinking and ticking off her count on her fingers "Abraham Lincoln, George Washington, Ben Franklin--"

I interrupt, "Ben Franklin was never President."

She says "why not?"

I say "I don't think he wanted to be."

She says "ok, then"

I wait, she rocks in her green chair.

I say "you've got two Presidents, Abraham Lincoln and George Washington."

She says "What about Thomas Jefferson?"

I say, "Yep, he was the third President, and he's third on your list. Good one, mom."

She says "Ben Franklin"

I say, "No, sorry, Ben Franklin was never President. Try again."

She says "why not?"

I say, "I don't think he wanted the job."

She says, "Ok then, what about Roosevelt?"

I say, "The one you like or the one you didn't?"

She says "which one do I like?"

I say "Teddy"

She says "Right, I like Teddy. Which one do I not like?"

I say "Franklin"

She says "right. I don't like Franklin" (previous conversation identified Franklin as a socialist)

Then she says "that's five."

I say "Four. Lincoln, Washington, Jefferson and Roosevelt"

She says "two Roosevelts, one we like and one don't.

I say "you're right! That's five"

She says "Name five cakes."

Pain and Alzheimer's


Somehow on Sunday, Mom twisted oddly and has stiff muscles in her lower back. Back pain is hard enough, everyone over a certain age knows how easy it is to make your back mad at you, but Mom can't remember that she hurt her back, and is constantly surprised by its twinges. She starts to get up from a chair and says "oww, oh I've twisted my back." and the injury is all new.

Caring for her reminds me of caring for sick toddlers. When Arthur and Maria were little, they used to tell me when they were sick over and over "I don't feel good." I feel as helpless with mom as I ever felt in the face of their discomfort--how can one ask stoic behavior from someone who doesn't understand what is happening? 

Mom alternates between a fractious bad temper "I can take care of myself!" and a childlike faith in my ability to make her feel better, "I don't know how I would get by if you didn't come over and check on me." She is mostly mentally offline this week.

 My sister says her body is putting all of its energy into healing her back, and she has nothing left to sort out the world. That seems true, for we have not had a day of clarity since Sunday.

Connections: March 30, 2016

Mom is lonely.

 Maintaining connections is nearly impossible with Alzheimer's.

Mom wants, and I'm sure all DSLO want, human connections. She calls people, forgets that she has called them, and calls them again, and again. She forgets who she is talking to and calls people by the wrong name. She gets angry if corrected, and sometimes angry if she isn't corrected and realizes it. Talking to her is like being in a canoe, with a hole in it, in a rainstorm, with a toddler. It takes constant attention to multiple things to keep afloat.

 People get exhausted by it. They stop answering her calls. Or they call me to tell me about mom.
The second thing is that she is afraid of being found out. As much as mom wants connection, she lives in a world of her own creation. That world is constantly under reconstruction to adapt to new information and most information is new.

So, she's fake Betty, who tries to sort out what her response should be when you say "didn't we have fun last time we were together?" She doesn't know. She doesn't know who you are, where you were together, when you were together and if you had fun or if you are being facetious.

I spend hours with mom every day. She sometimes remembers me as me and sometimes doesn't. Sometimes she tells me her daughter lives next door. Sometimes she hugs me and says she is glad I live next door. Sometimes she asks me how long we are staying at this hotel. Sometimes she hugs me and cries and says its so long since we've seen each other.

Mom's family is having a big reunion this Saturday. I am not taking mom. She wants to go--when someone tells her about it. They all want her to come. I want to take her--but I took her last year. It was a 2 hour drive to get there. She was overwhelmed by the number of people and we were both exhausted---her by the pretense of knowing people and me by the vigilance that mom in a crowd requires. When we got home and I got her settled with her feet up and a cup of coffee, she said "you know what we should do? We should organize a family reunion. I miss seeing everybody." She had no recollection of having just been at a reunion and that was a year ago.

If maintaining connections is hard, forging new ones is even harder. I've been taking mom to the Sr days at the local Rec center. She has been going for 3 months. She never recognizes the building, or any of the people she has met---even though they eat lunch together once a week. She has no social skill anymore--she never asks questions about another person, she never compliments, and though she stops talking when someone else is talking--she isn't listening and her response is usually unconnected to what was said.

As much as I notice mom's isolation, I also am noticing mine. I spend large chunks of time away from my family, so there are gaps in my interactions with Kevin and the kids. I often don't know about events or jokes the three of them have shared. I am not up on what my kids are reading or listening to or watching. Mostly now, I am the person that rushes in the back door, loads the dishwasher, cooks dinner and fires off lists of things to be done before I bolt out the door to grandma's. The kids don't come to grandma's as often as they did---her mood changes make them uncomfortable. I can usually get them to go with for walks, but once grandma starts asking who their mom is--they go home.

I don't regret having mom next door. I am grateful to have a husband willing to support caring for my mom, and kids who get that everyone has to sacrifice for family. I am grateful for friends that listen when all I can talk about is mom, and siblings who shoulder the work with me. Mostly, though, I am grateful for those brief moments of connection, when mom is not a DSLO, but mom. Elusive golden moments when she hugs me hard, says my name, and says, "I love you girl" just like she always has done. For those moments, all the rest is carried.