Mom and Dad: The Twilight Zone of Alzheimer’s

As Alzheimer’s whittles away at Mom and Dad’s brains, I try to empathize with the condition of the day. These conditions vary daily and in intensity and can include one or both of them being terribly confused, fairly lucid, suspicious, or extremely needy. I try to pick up clues early in the visit to help manage our time together with as little frustration as possible. Some days, even my best attempts fail.

If Dad is having a fairly lucid day, he is able to ask a question with little trouble, the words come out in order, pronounced correctly, most of them make sense. Sometimes, words are mixed up - he might sort through a list of words before coming to the right one: seat, chair, couch, car. He knows he wants to ask about the car, whether it’s going for a ride or just going out to look at it.

I just got a new car and already he can recognize it in a parking lot and comments that it is nicer than the old one. His big concern is that there is no license plate on the car yet. He remembers they had special plates on their car and wonders if I couldn’t just put those on my car. He says, “You need these numbers! The policeman will get angry without them.” Mom points to the temporary tag in the window. Dad accepts this as good enough, but still insists those numbers they had would be better.

If he is having a needy day, he adds a cute little whine. He’s also full of affection on these days. He’ll swoop in for kisses, taking Mom by surprise. He’ll reach out for extra hugs, or want to hold hands while we walk.

If he’s having a suspicious day, he speaks with a hint of anger, looks out the corner of his eyes, or makes gestures as if to say, “Oh, you’re pulling my leg.” Those days when there’s a hint of anger tell me he is frightened by his confusion. Those days where he looks out the corner of his eye tell me he wants a connection via laughter. When he makes gestures that hint he suspects someone is trying to get one over on him, I know the best course of action is to go through Mom to get to him. If he is terribly confused, I just give him extra hugs, hold his hand, try not to show how much it hurts me to see him this way.

Mom and Dad are both frightened by their confusion. Dad sometimes gets frustrated or angry at not being able to figure out what’s going on around him. Sometimes he fidgets to try and cover up his confusion - he’ll rearrange his silverware at the table, smooth a wrinkle from the leg of his pants, pick at a real or imaginary loose string or hair. If he can not make sense of anything you try to say to him, he’ll chuckle and laugh while you talk as if he’s agreeing, amused, or thinks you must be telling him a joke. If you are not laughing with him, he may suspect you’re trying to get one over on him - he’ll give a knowing look as if to say, “I know you’re just pulling my leg.” If you continue, his look changes to say, “I’m not enjoying the joke and I want it to stop, now!” If it continues beyond that, he gets angry.

Some days, the confusion sets in so suddenly it overwhelms them. I watch their body language and try to determine what kind of environment it feels like they are in.

I look at these moments of confusion as if they just woke from a nap to find themselves -here- with absolutely no familiar cues.

Perhaps this moment feels like suddenly finding oneself under the stadium bleachers at a major sporting event. Loud rumbles and roars from indiscernible sources, people rushing this way and that, talking, shouting, voices whizzing past.

Waking… is that what woke me? What is that sound? What, in my room, or house, or car, (or even church) makes that sound? And, why did it wake me? It woke me, so there must be a reason! Think! Work it out! What is that sound? What if something has gone wrong? There could be danger!

So many words, all disconnected from other words, no sentences, no statements, just words. People talking, saying something, going somewhere. Yet, I’m standing still.

Waking… is that what woke me? Who are all these people? And, why are there rushing around? And what are they saying? Is it important? Why are they going in different directions? What if this is an emergency and that’s what woke me? Where is the danger? Are these people running to or away from the danger? I need to get away from the danger but which way is away?

The lighting is all wrong. It’s darker, or lighter, here. Things look different in different lighting.

Waking… is that what woke me? Did I wake because the light changed? Did the power go out? Did someone turn on a light? How did I come to fall asleep here, anyway? Why doesn’t anything look familiar?

They scan around for clues. Their faces and body language help me to determine how best to respond to comfort them as much and as quickly as I can. They need to be reassured they did nothing wrong. They need reassured they were not left behind. They didn’t doze off and miss their ride. They didn’t sleep clear through the sermon and all these people are filing out of the sanctuary. They did not cause a scene, didn’t miss an alarm, didn’t forget to turn off an appliance, didn’t nap the afternoon away… Both are here and safe and all is well.

If I was suddenly snatched out of my familiar surroundings and dropped into a completely foreign environment, it would be no less confusing to me, but I could adapt. To them, there is no gaining familiarity with new surroundings unless they are exposed to them repeatedly. Every turn, every corner, every new aisle, every new department is a new waking moment in a strange environment. Sometimes the familiar clues are reassuring and they can proceed. Sometimes there is nothing that registers as familiar. Learning, for them, is done in a completely different way than ever before. To expect them to learn anything is asking too much, but occasionally they do actually learn. When I figure out how it is they learn, there may be more things I can do to help them cope. Until then…

It reminds me of an old Twilight Zone episode, or one of those shows that was much like TZ (Alfred Hitchcock, Monsters, Tales from the Darkside, etc) In this episode, a man is at work when a coworker comes by and asks, “Are you going to dinosaur?” He has no idea what dinosaur means and as the day progresses, he encounters more and more words and phrases that make no sense. By the end of the day, he realizes he is the only one who is confused. He sits down with his child to read a bedtime story - a word book, from which he begins relearning the language. A language where all the words he knows have new meaning. Dinosaur, it turns out, meant lunch.

Couch, it turns out, means car.

Dad: “Are we going to get something to eat?”

Dad’s ‘full switch’ has been broken for a while, now - he no longer processes the signals that alert him that his belly is full. He doesn’t remember that he just ate. When they get back to their room after meals, he starts looking for snacks. When he wakes from a nap, he rummages for candy or other snacks. He almost always asks, “Are we going to get something to eat?” whenever we go anywhere. Leaving places triggers the question most often. Leaving their room, leaving the facility, leaving the waiting room at the doctor’s, leaving the exam room at the doctor’s, leaving the car, leaving the store, leaving church… Leaving anywhere triggers, “Are we going to get something to eat?”

I cut up a bunch of fruits and veggies and had far more than we could use ourselves. I decided to make a few variety plates for Mom and Dad. One plate had melons and carrots, one had broccoli and apples, and so on. Dad was intrigued by these sectioned plates of fresh fruits and veggies and helped himself to the first thing that caught his attention - a slice of cucumber that had been peeled in stripes. He studied it a while before biting into it. First, he bit off some of the peeling and spit it into his hand. Next, he nibbled at some of the flesh. When he got to the seeds, he ate around them until he got one in his mouth. He worked at getting all the flesh before spitting the seed into his hand.

He studied the bits of peeling and seeds he’d spit into his hand. He looked then to the piece of cucumber he still held in his other hand. Back and forth, back and forth… His mind worked it over until he concluded cucumbers were “yucky” and too hard to eat. He shook both hands over the trashcan until he was satisfied he’d rid them both of any trace of the offending “yucky”.

At least he still loves ice cream and cookies!

Weight Loss and Quitting Smoking

I’ve known for months that I need to lose weight.  Instead, I’ve managed to gain weight at an alarming rate.  Finally, about 3 weeks ago, sis and I agreed to a weight loss race.  Whoever loses 30 pounds will be treated to a steak dinner.  27 pounds to go.

Losing weight was always so easy.  A few weeks after my son was born, I forced the baby fat back into normal jeans.  In 2 weeks, I went from barely squeezing into my biggest pair, to quickly wiggling into my smallest pair.  The 50 some pounds I’d gained while pregnant melted away and were completely gone in just under 10 weeks.

A few years later, my weight crept up on me again.  I ballooned from 120 to 150 in just a few short months.  Again, the weight loss was easy - I made it a point to step on the scale every morning and every evening.  That was it.  2 months later I was back to 120.  I hadn’t changed my diet, hadn’t added more activity or exercise, other than stepping on to the scale twice a day.

As the years went on, I continued to have ups and downs with weight.  The worst, about 10 years ago, found me trying to lose 70 pounds!  I cut out fast food and walked anywhere I needed to go within half a mile of the house.  That was it.  5 months later I was back to 120.

I’m trying a combination of all of the above to lose this 30.  I started stepping on the scale weeks ago - it mocks me.  We have a digital one now - I’m not a fan of being told about that additional half pound.  Is that supposed to be encouraging, showing me that I’m not quite to the next pound?  I miss the scale we had growing up.  I wonder, is it possible that it was some special property of the scale itself that made weight loss so easy?   (mental note: find scale in brother’s garage pile of M&D boxes)

I tried squeezing into tighter jeans.  All my jeans are now tighter, and most of them stretch!  Obviously the magic of that is gone!

I’ve given up fast food, or gone with salad when forced to order out.  I’ve tried to eat healthy.  I’ve worked in the garden and around the house - activities that were not always part of my daily routine.  I’ve added more trips up the stairs so that now I am climbing the steps at least 50 times a day.  I’ve returned to walking to as many places as I can, even making additional trips just to go window shopping or check the library for new authors.

27 pounds to go.

3 weeks ago, I decided to weigh myself while holding the kitten to see how much she weighed - obviously not enough to activate the scale on her own!  I picked up the little bundle of fur and stepped on.  WOW!  I had to look twice!  It ended in 7.  Watching my food intake was working!  I sat the cat down to get another reading to figure her weight.
What the…?
It now ended in a 3, and was higher.
Um…  come here, kitten.  I’m adding you to my wardrobe as a permanent accessory - if you can make even the scale think I’m 6 pounds lighter when I’m holding you.

Another thing I’ve noticed is how much harder it is to do some things that never required a second thought just a few years ago.   Last spring, mushroom hunting we climbed near sheer faces using saplings and roots to pull ourselves 30, 40, 50 feet up the side of a hill.  I’d get to the top winded, but ready to continue the hunt.  Just a few years ago, that wouldn’t have winded me.  (A few years before that I would have wanted to race up the side - now I like to think I’m more cautious…)  That very same climb this year left me gasping  for air, not just winded.  I was more embarrassed than worried, but worry was there in the back of my mind.

Our garden is on a slope down the back yard.  The yard is a gradual slope that drops perhaps 10 feet from top to bottom.  The garden is terraced into 2 sections, one a foot lower than the other.  From the highest corner to the lowest corner is about a 5 foot difference.  I got winded one day just walking back from the bottom of the garden.  Something had to change!

I decided to add quitting smoking into the torture I’m putting myself through to lose a few pounds.
I don’t care who you are, you can’t, out of habit, just because something is sticking out from between your lips, rummage around in the drawers, find, then flick a Bic, and smoke celery.

The 5 second rule

We have pets, so there is no 5 second rule in our house. It’s either ‘fair game’ or ‘dammit’, depending on what is dropped. Fair game, if one of the pets is watching; dammit if it was the steak.

What are the odds?

The odds are either 0, 50/50, or 100.  Period.

What are the odds that the Sun will rise in the morning?  100

What are the odds that the Moon will be full sometime this month?  100

What are the odds that the Sun and the Moon will go to Vegas and get married?  0

What are the odds that you will not have an accident?  50/50

What are the odds that you will meet someone famous today?  50/50

What are the odds that you will win the lottery?  50/50

Some things in life are 100% guaranteed to happen.

Some things in life are 100% guaranteed not to happen.

Some things in life have a 50% chance of happening.  It’s as simple as that.  Either it will or it won’t happen.  Period.  Don’t get hung up on the odds.

Statistics lie.  Statistics are misleading.  They give false hope and they cause undue stress, worry, and concern.

Fewer than half of the people ever born have died.

Mom and Dad: in pictures

It seems like it’s been longer, but Mom and Dad have only been in assisted living for about 8 months.

After we took away the car and I took over the driving, Dad spent many weeks worrying about the car. He seemed to understand that I was driving the car, but whenever I showed up at the house, he’d try to get me to park it in the 2-car garage. For many years, the left side of the garage has been so full of stuff that parking on that side was impossible. For years, the right side of the garage has been where they parked. A tennis ball hung from the ceiling at just the right place - it would hit the windshield when the back of the car was clear of the garage door. Every time I got to the house, Dad wanted the car in the garage. Every time, I declined the offer - shade from the trees would keep the car cool, rain water run-off from the car would make a mess, snow and slush would melt, any excuse to avoid parking in the garage. Dad was always proud of his cars, always wanted them parked inside the garage - loved looking out the door and seeing the car there. After he was no longer driving, it was painful for him to walk past the inner garage door and see the car out there - much more painful than seeing it in the driveway.

After they moved to assisted living, they still spent a few nights at the house. One winter night, we got about 4 inches of snow. Mom and Dad decided to get outside and shovel the driveway. Mom called to tell me I could back right up to the garage door - they had shoveled a path to the door. She was so pleased with their efforts to clean the driveway. I told her I’d see her in about an hour, and was out the door and on my way there within minutes.

What’s wrong with this picture?

Mom saved the AARP magazine, with George Clooney on the cover, and a Post-it note stuck that said, “Keep! Read ‘Conquer Clutter’” This was the dining room table on which Dad ‘fixed’ watches and clocks:

Here’s Dad with Miri, when Miri was just a little over 2 weeks old. Dad has always loved small animals, always had a big heart for helpless creatures. Now, he calls all furry critters, ‘doggy’. “Where’s the doggy?” “That’s a cute little doggy.” “Can I hold/pet the doggy?”

Here is the crime scene video. There should have been a chalk outline. This poor hamster was murdered! When the hamster wouldn’t dance, Dad decided to ‘fix’ it - by taking it apart! Dad no longer realizes some things just need fresh batteries. Note the batteries still intact…

Just some stuff that’s happened

I got dressed one morning and headed down the steps. On the way down the stairs, I felt something jab me in the upper thigh - something sharp. Ow!
The screen in the bedroom window doesn’t close all the way at the top. There’s always the fear of stinging insects flying in the window.
I immediately thought, oh no, a bee!
Most bees sting more than once.
I was afraid to reach under my shorts to find out what it was, but I was more afraid to let it stay and sting my backside again.
I screwed up the courage to reach around and under my shorts…
My fingers touched something fuzzy
and it jabbed me again!
I panicked and started to tear off the shorts to escape
when a pipe cleaner the kitten had been playing with at bedtime fell out of the bottom of my shorts.
That’s where that went!

A friend of ours asked what I suggested he do to impress this girl he just started dating. Take her to see the fireworks! Even if she protests or claims she ‘doesn’t like them’, take her. There’s no one who really doesn’t like fireworks! Unless the big bad booming scares them… in which case, you become the hero…
unless you’re the one afraid of big bad booming… in which case, skip the fireworks.

I’ve been trying to lose some weight so the scale is getting a lot of use. I decided to weigh myself while holding the kitten to see how much she weighs - obviously not enough to activate the scale on her own! She sits on the scale and watches as we use the toilet - she doesn’t even move the dial. So, I picked up the little bundle of fur and stepped on. WOW! I had to look twice! It ended in 7, and wasn’t higher than yesterday. Watching my food intake was working! WOOT! I sat the cat down to get another reading to get her weight.
What the…?
It now ended in a 3, and was higher than yesterday.
Um… come here, kitten. I’m adding you to my wardrobe as a permanent accessory - if you can make even the scale think I’m 6 pounds lighter when I’m holding you.
Another check averaged the weight to end in a 0, which was good enough for me.

I was chatting via gmail chat with a friend. We were discussing something that had happened outside another friend’s house. I asked him, “What was the guy’s name who fell off the porch?” His reply, “You asked me too quick.” I could only say, “I didn’t realize you could read that fast.”

We’ve been taken over by fleas and mosquitoes. I can keep most of the mosquitoes away by using a repellent , but the fleas! My Lord, they are nearly impossible to get rid of. “Nearly” because I have not yet given up. We will be calling in an exterminator, but that could be another couple of weeks before that fits into the budget. Until then, we’re trying to control them using other means. I run the vacuum up to a dozen times a day, sweep and swiffer every day, and mop every other day. I have sprayed well over 3 gallons of flea spray in the past month. I swear, the fleas just wait for me to spray - it’s like they think I’m a bartender. I can picture them pulling up a barstool, pounding on the bar demanding service. I can picture them pulling out a beach chair, sitting under the umbrella, slurping flea spray from foofoo glasses with umbrellas and speared fruit. The cats get a bath at least once a week, which always makes me think of this picture:

Mom and Dad: Dining out

Most of the time, going to a restaurant breaks down to placing an order and getting your food. On a few occasions, the service might be so wonderful (or awful) that you are compelled to mention it to management, or write a letter.

A few months ago, I took Mom and Dad to the Wendy’s near Capital University, in Columbus, Ohio. Dad was obviously confused, Mom was getting overwhelmed with the strange surroundings and number of choices. The young man taking our order quickly picked up on their confusion and my struggle to keep both of them from becoming distressed. While reassuring Dad that we would be eating soon, and assuring Mom that we would be able to get her something she would like, I was hardly able to answer the cashier’s questions with more than a few scattered words. There was a long line behind us, the tables were almost all full.

There was a time when I could hand Dad a tray and send him on the mission of finding us a table. That wasn’t in the cards on this occasion. Even Mom would have had difficulty navigating through the people while looking for a place to sit. Dad’s hands were shaking worse than usual, so having him carry a tray was out of the question. I knew I could balance both trays and negotiate the room, so I asked the young man to set the tray of sandwiches on my hand. He said, “I’ll do you one better.” He picked up both trays and carried them to an empty table. Once we arrived at the table, he pulled out Mom’s chair for her. As I busied myself getting their orders placed in front of them, that young man delivered napkins, straws, spoons, and ketchup to us. He returned to the counter and continued taking orders, leaving me smiling at his kindness.

A few minutes later, that same young man was headed out the door. There was still a line, but no one complained. Moments later, he returned pushing an elderly man in a wheelchair - he’d helped get him from the car and into his chair so he could go inside to eat in the air conditioning.

This young man was not the only helpful person working there that day. I witnessed the manager helping an old woman get to her feet and steady on her cane. I witnessed other employees outside helping people - a car that wouldn’t start was given a jump. A man short a dollar and change was covered by another employee. A woman with 3 kids in tow was helped much like my Parents and I had been.

When I asked the manager for a comment card, she informed me they were out of them - so many had been filled out. She showed me the door to the office, plastered with comments - all of them positive. I can believe it!

Just a few weeks ago, Tom went with me to take Mom and Dad to their doctor appointments. After the appointment, we planned to go get some ice cream, one of Dad’s favorite treats. We drove to a place I’d always loved going… it was no longer there. How sad. This was the first summer Morts wasn’t open in longer than I could remember. Now, the search was on for another ice cream stand. We finally settled on Steak and Shake. It had taken us so long to find a place, we decided we may as well go ahead and order dinner - they had hurried lunch and would be late for dinner back at the facility.

When we placed our orders, Tom ordered for Dad, I ordered for Mom. While we waited for our food, Mom exclaimed, “I thought we were just getting ice cream. I wasn’t expecting a whole meal!” Dad busied himself arranging his silverware, inspecting his coffee cup, arranging his napkin. He was terribly confused and overwhelmed in this strange environment - the promise of ice cream was no longer keeping his focus.

Our food arrived - burgers, fries, and milkshakes. Dad tasted his milkshake and found it agreeable. Mom decided her milkshake glass was much too tall for her to drink from - we tried to help her accommodate but ended up we needed to request a smaller glass for her to drink from. Mom said, “I thought we were just getting ice cream. I wasn’t expecting a whole meal!”

While we worked out Mom’s milkshake problem, Dad got busy on his hamburger. He took his knife and spoon and set about cutting the sandwich into bite sized pieces. It was too late to stop him once I noticed… Mom said, “I thought we were just getting ice cream. I wasn’t expecting a whole meal!”

For the rest of the meal, Mom alternated between how tall the glasses were and how surprised she was to get a whole meal, not just ice cream. Her remaining shake was put in a to go cup, which meant it had to be taken to go - she couldn’t drink any more of it inside the restaurant because it was now to go. She couldn’t wait to get back and tell her friend that we’d taken them out for ice cream and surprised them with dinner.

Back before we really suspected Mom was going the same route as Dad, I took them to Florida to visit my son. On our last day there, we ate at Ruby Tuesday’s, where my son and his roommate worked. We got there during happy hour - buy one get one free drinks. I ordered a mudslide which came with chocolate powder around the rim of the glass. Dad thought it was ice cream and wanted a taste. Having 2 glasses and being the driver, I offered them my extra one to share. Mom got a tiny sip before Dad snatched it back from her. He tipped the glass and drank from the side getting chocolate powder on his cheeks, whipped cream on his nose, and more chocolate powder on his forehead. As he drank, he turned the glass, smearing more chocolate powder - in a circle from the corners of his mouth up his cheeks and across his forehead. Whipped cream and chocolate shavings clung to his nose and eyebrows. His eyes sparkled and gleamed with shear joy, his smile seemed all the more wide with that chocolate smile. When he finished the drink, he smacked his lips, licked froth from his top lip, and laughed with delight. He didn’t need another one…

It occurs to me

-that these do it yourself TV shows are a spark of genius. They inspire people to get in there and get their hands dirty. They drive people to make all kinds of home improvements, whether it’s to sell their home, decorate a new home, or just get more enjoyment from their current home. They’ve turned watching grass grow into entertainment. Watching paint dry has been turned into high drama. I’ll be impressed when someone has come up with a house cleaning show that is both entertaining and inspiring. There’s an idea! A house keeping reality show. They can start filming in my house today. I’m thinking a cast of 12 could finish cleaning this house in the 10 weeks or so these shows tend to run. Or, they could just send Brawny Man over… =D

-that some companies are sending the wrong message with their advertisement. One AT&T commercial is set up like one of those big money game shows. The contestant has reached the big money questions, and she gets them right! Does it make sense to have your selling points be that difficult? I’m not saying they are difficult, but, traditionally the last few questions on these types of shows are rather hard. I’m not sure I want to put much faith in a company that doesn’t have much faith in itself.

-that the reason some people have no patience with the stupidity of others is they are too busy dealing with their own.

-that old sayings are the most fun to repeat after witnessing the reason for them. Dad’s favorite was, “I cut it off twice and it’s still too short.”

-that super powers are granted by alcohol. I just can’t figure out why so many people choose 10 feet tall and bullet proof as their power?

-that the Bush’s Baked Beans guy is a terrible dog owner. If dogs are man’s best friend, then what has this guy done to his dog to make him want to sell the family secret so desperately?

-that there is something seriously wrong when the price of gas is newsworthy. Yes, it’s high. We know that. But, is it really high drama? Is it really worthy of dedicating time on the morning, afternoon, evening, and late night news? Is it really the kind of thing that belongs in the teasers? I guess the old saying applies, “No news is good news.” As long as the price of gas is the top story, we’re still alive - no buildings have fallen, no floods have erased entire states, no storms have uprooted entire cities. On the other hand, why not report on something else we have no control over, for example, the sun. The sun came up this morning - news at 11. Recapping the rising of the sun, more after these messages. After the show, we’ll bring you the latest update on the sun - will it be back tomorrow? We’re working on an exclusive - the sun causes shadows. Why? And will it continue? Legislation has been introduced - will the sun be allowed to go on casting shadows -In Your Yard- without a permit?

Mom, Dad, and Two of Me

Mom’s monthly appointment to have her port flushed was on Monday. Recent experiences with their other trips to medical facilities have led me to appreciate these visits. They listen. They hear. They care. They understand.

The same scenario will play itself out each trip with a few minor alterations to the details. One time Mom will remember the office is on the 5th floor, another time she’ll have to ask me. One time she will watch the numbers light up and know when we’ve reached our floor, another time she’ll want to get off whenever the elevator stops. One time she’ll remember to turn to the right, another time she’ll turn to me searching for guidance. When those moments of confusion hit, there’s a glimmer of fear or anxiety. If we make a wrong turn we will be late, or lost. Should we ask someone? But, who? What do we ask? Where are we going? What’s the address? Does she have something in her purse that will provide a clue (at least for someone else) to decipher?

She turns this way and that, she lifts and lowers her purse, she searches (for) faces, she looks to me for help…

That look conveys more faith than can fill a mustard seed.

That look conveys resignation.

She trusts that I will lead them in the right direction. She feels sorrow thinking she has lost her mental map. I feel sorrow knowing she no longer instinctively knows to look for signs. She feels insecure putting all her trust in me, after all, I do things different… taking the freeway -vs- taking a highway, stating an appointment time -vs- stating a departure time, going to the superstore -vs- going to the one near their old home.

Last time we were in the store near their old home, she complained that she would rather shop at the store near their house. Although we had gone to that store, weekly, during their reconstruction, Mom didn’t recognize it as the same store. While the construction scaffolding was in place; while traffic cones blocked off parts of the parking lot old and new; while sheets of plastic covered shelves, formed walls, and caught debris from above Mom could see the changes taking place. Remove the signs of construction, open up a new section to the public, Mom saw a big, new place that frightened and confused her. Mental map redraw was required but the pen was out of ink. Two months passed between the last overt signs of construction leaving and Mom’s next visit to that store. She would much rather shop at the store she knows than shop in this new store. This new store wasn’t to her liking and she didn’t think she wanted to return.

Sunday evening, I call Mom to make sure she knows she has an appointment the next day. She remembers and is concerned about when I will get there. “We need to leave early because I’ve invited Anne.” Does Anne have an appointment, also? “No, she is coming with us to go to the store after my appointment.” I see. “You have room, don’t you? I should have asked before I told her it was ok.” It’s fine, Mom. I have room. “Good. What time will you pick us up? My appointment is at two.” Two? I have 2:45 on my calendar. Would you double check, please? “Well, ok, I see that now. It’s at 2:45. We should leave here no later than two, though.” We discuss it back and forth until she leaves me the opening to say, “I’ll pick you up in time to get to your appointment.” Sometimes, leaving it that open causes alarm; sometimes it’s all the answer she needs.

Monday morning, Mom called - worried, again, about inviting her friend. “What will she do the whole time I’m in my appointment? I don’t think she will want to come along for that. I suppose she could browse the gift shop.” As Mom hashes over these thoughts, I realize I’ll be in charge of 3 Alzheimer’s patients with no choice but to allow at least one of them out of my sight for a period of time.

Thank God for camera phones! I make sure to take a picture of Mom and Dad before we go anywhere! If one of them wanders off, I’ve got the most up to date information at my fingertips - what they are wearing is not left to guesswork. I make a mental note to snap a picture of Anne as soon as I see her. Candid shots are better than posed because they are not smiling for the camera. When they are lost, confused, or wandering, they are not smiling.

I arrived at the facility a few minutes after 2:00 and found Anne working the counter of the new soda shop. I went in, ordered a cup of coffee, and snapped a picture while she filled the cup. I noticed a gash on her arm, recognized it as having come from hitting a sharp corner, looked at the counter tops in the soda shop - lots of sharp corners. “Did you bump one of these corners, Anne?” She wasn’t sure how it happened, it didn’t hurt much, it bleeds now and then… A staff member fetched a nurse. She wasn’t sure how it happened. The nurse applied antibiotic ointment. It didn’t hurt much. The nurse applied a clear bandage. It bleeds now and then. The staffer took over behind the counter and sent Anne to freshen up for our shopping trip. Anne showed off her bandage, wasn’t sure how it happened, didn’t hurt, still bleeds a little, wonder why the bandage is clear? I told Anne we’d meet her back in the hub and headed to Mom and Dad’s room.

I could hear Mom’s phone ringing as I approached their door. I heard Mom answer the phone, “Hello? Who is this? Who? Nancy? You don’t sound like Nancy. Oh! Oh! Yes, I’ll wait.” Nancy is deaf and uses TTY/TDD services to communicate. Once the operator explains, Mom understands.

One of the staff was coming down the hall, saw me hesitating at the door. “Do you want me to get them for you?” she asked. I explained that Mom was on the phone. She seems undeterred. I explain that Mom is talking to someone using TTY - confusing enough for her, no point interrupting and causing further confusion. I went in after she finished the call.

Mom told me she had been working on her shopping list but had been interrupted to do her nails. She’d trimmed, shaped, and filed them. It took 45 minutes. She couldn’t believe it took so long! Then she’d gotten a phone call from Nancy. Nancy was coming to visit on Wednesday, the only day she has open. She told me about trimming her nails and the call from Nancy while trying to find something. “What are you looking for, Mom? Perhaps I can help.” Mom looks at me like I’ve lost my mind, “No, you couldn’t help find it because you don’t know what I’m looking for!” Can’t argue with that logic, Mom.

Shopping list acquired, purse secured, one last look around the room, one last stop at the counter to look at all of the notes, and we’re on our way. I mention to Mom that Anne cut her arm, but it will be ok. We find Anne in the hub area showing off her cut - doesn’t remember how, doesn’t hurt, bleeds some, wonder why the clear bandage? I said, “That’s so you can show it to people without having to uncover it.” And, she went back to showing it around.

At the car, Anne took Dad’s usual seat in the back. Dad didn’t complain. Mom was disturbed. Neither Anne nor Dad could figure out the seat belts. Dad knows how to operate the one on the left, tries to help Anne. Anne tries to connect the slot to the wrong buckle, Dad tries to correct it. Anne tries to stop him from helping, starts trying to help him with his instead. Dad tried to use the center seat belt, Anne thought that meant he was too fat to wear a seat belt. Anne tried to connect her seat belt to the center seat belt, Dad thought that meant she was doing it wrong. They struggled with it the entire 10 minute ride.

Mom told how she’d trimmed her nails, suggested the 2 in the back seat just sit still and trust me to drive safely.

Mom told how she’d got a call from Nancy, how Nancy was going to visit on Wednesday - the only day she has open, suggested the 2 in the back seat let me pull over and help with their seat belts.

Mom told how she’d been looking for a letter from Nancy that I wouldn’t recognize, suggested Anne make sure she had her shopping list, which only momentarily distracted Anne from the seat belt problem.

Mom worried that she might have forgotten her shopping list and was momentarily distracted from her dialog…

Mom suggested Anne might like to visit the gift shop rather than wait in the crowded waiting room of the doctor. Mom fretted that she’d not called her cousin to see if she was working at the gift shop - we’d find out when we got there.

With no air conditioning in the car, I use good old fashioned 4/40 AC. Dad can’t stand to have windows down in the car, especially when it’s right beside him. I suppose some of that has to do with hearing aids, but I can remember Dad removed the window handles in the back seat of the cars to prevent us kids from rolling them down. Between struggles with the seat belts, Dad rolls his window up. He then gets hot and rolls it back down.

We pass by the old school on this trip - it’s been torn down, a new building near completion further up the lot. Mom knows something is different here. Wasn’t that the school? It must look different because they always came up the other way, saw it from a different angle. Between struggles with the seat belts, Anne announces the old buildings had to go, they cost more to repair than to tear down and rebuild. One of her neighbors always voted against schools, teachers make too much money, interspersed with mutterings and exclamations from Dad and Anne over the seat belts.

At the hospital, we park at the back of the lot. There is a shuttle we could ride to the entrance, but Mom decides it’s good for us all to walk. Dad, on the other hand, wants to talk to the shuttle driver. I listened, but I never did figure out what he was trying to say. Mom says to grab Dad by the arm and bring him with us. I say keep walking, he’ll notice and catch up. We make it 5 parking spaces before he realizes we’ve continued on our way. Dad thought the shuttle driver stopped to talk to us - he figured if he talked they’d tell him who they were.

Once in the hospital lobby, Mom headed straight for the gift shop looking for her cousin. Anne wasn’t impressed with the gift shop - why, there was hardly anything in there, certainly nothing from her shopping list! Anne wouldn’t come up to the waiting room with us and I couldn’t force her to. I told her we’d only be 20 minutes or so and asked that she wait for us somewhere in the lobby area if not in the gift shop. “God, keep her here and safe until we return!”

I need two of me, but a quick prayer will have to do until cloning is possible.

Minutes after arriving in the waiting room, Mom was called back. The first thing they have her do is step on the scale. Mom guesses she’ll weigh 93 pounds, I suggest 900? The nurse, knowing the story, chuckles. 93 pounds, 7 ounces. (I don’t want to know the ounces when I get weighed, seriously!) I wonder if Mom will later think 937 pounds?

Weight recorded, Mom is led to the patient’s chair. We’ve been coming here for port flushes for just shy of one year. Mom still tries to disrobe, even though all she needs to do is pull the top of her shirt to the side. The nurse and I both try to explain - leave your shirt on, don’t untuck that, don’t unbutton, you don’t need to disrobe… The nurse remembers this about Mom and makes sure to close the exam room door. Mom goes between trying to unbutton her blouse to trying to untuck her undershirt to trying to tuck in her blouse. The nurse and I explain that the port is up high enough all she needs to do is pull the top of her undershirt to the side… Mom says, “Oh, that’s the port up here. I keep thinking the port is down here, but that’s a breast.” The nurse and I exchange glances, a smile of understanding passes between us. If only I could express to her how different it is here - Mom’s own GP and staff can’t seem to remember from one visit to the next that Mom is confused, whereas the staff at the oncologist all seem to know and understand and act accordingly. Mom quits struggling with her shirt and says, “Some day, I will probably remember that I don’t have to raise my shirt.” I doubt it, Mom… “How does she remember?” she asks, nodding toward the nurse. “She always remembers.” Well, she has notes.

We find Anne sitting in the lobby working on a crossword puzzle in a book she purchased from the gift shop. Anne complains there isn’t much to the gift shop and she wouldn’t want anything from there if she were a patient here!

Back at the car, I guide Anne to sit on the right side this time, stating that the seat belt works better on that side. I get Anne buckled in, Dad buckled in, and then check to see if Mom has hers on yet. “I was waiting to see if they got theirs on, first.” Passing the street where Anne used to live caused a short burst of sobbing from her. Mom, oblivious to Anne’s cries, said, “You could go home and wait while we shop.” I mentally rolled my eyes and held my breath. What kind of meltdown were we in for? Fortunately, Anne didn’t seem to hear what Mom said.

I dropped the 3 of them off at the front of the store and told them I’d catch up as soon as I got the car parked. I found Mom and Dad standing stiffly just inside the door, Mom with her shopping list clutched tightly in one hand, purse clutched tightly in the other, Dad gripping Mom’s arm - not too tightly. “I expected to have to look for you when I got here.” I said. Mom said, “Anne had to use the restroom.” I said, “I see. Are we waiting here for her?” We weren’t waiting for Anne. Mom was just so overwhelmed and confused she could not move beyond the entrance, didn’t have the first idea of where to go. I checked Mom’s list, scanned the aisle markers, and led the way.

Mom had “Planter’s sunflower nuts” on her list. Previous trips to the store had failed to produce these mysterious nuts - Planter’s, after all, means peanuts. Mom explained that the jar they have in their room is getting low. (I didn’t point out that it hasn’t changed in months) Mom explained that it has to be sunflower nuts. (I didn’t point out that on previous trips, I’ve tried to get sunflower nuts while she’s insisted they wanted peanuts, but none of the peanut products I’ve tried have fit the bill, either. I was just glad she’d finally written down the full name, ’sunflower nuts’)

We wandered about the store filling the list and ran into Anne, in the drug aisle, looking very agitated. “How’s it going, Anne?” She couldn’t find the Vaseline. She needed Vaseline to coat the bird feeder pole to keep the squirrels out. I looked around, trying to decide which area it might be in if not in the drug aisle. Mom suggested she ask someone who works there. Anne didn’t want to be a bother. I flagged down an employee, turned him loose on Anne, then we returned to Mom’s list.

Mom had some of her prescriptions written down on her list. “What’s that for, Mom?” She thought we’d just stop at the pharmacy in the store and get them filled while we shop. “Good thinking, Mom! I wish I’d known that - we’re at the wrong store for that.” Oops… Now we were at the wrong store for everything! “That’s why we couldn’t find the baby aspirin!” That’s right here in the cart, Mom. “That’s why we couldn’t find the…” Right here in the cart, Mom. Right here in the cart.

We got in line at the register, but Dad was restless. He was worried about Anne, who had just gone by pushing her cart, looking determined, and lost. Dad took off to follow. Mom would need help unloading the cart. My phone rang - now is not a good moment to take a call… Anne whizzed. Dad followed, trying to close the gap. Mom wanted to find her Kroger card, I’d already presented mine. Mom needed to find her Kroger card, started looking through her wallet, looking through her purse, looking in the same places over and over again. “Mom, she needs your credit card.” “I know that,” she said, “But I need my Kroger card.” The cashier and I both assured her that she’d already used mine. Mom would not be deterred… Minutes passed, the line behind us got restless. Anne whizzed by, Dad was closing the gap. Mom passed by her credit card, still looking for that Kroger card. I caught a glimpse of Dad rounding a corner, still in pursuit of Anne. I tried to reach over and get Mom’s credit card.

“PATIENCE!” Karma screamed in my head.

I distracted Mom from the search for her Kroger card, finally got her credit card. Now, she was frustrated, and I had contributed to her frustration.

Mom’s credit card was rejected. Karma giggled in my head.

Anne whizzed by. Dad was steps behind.

Management was called in. Karma cackled in my head. See, now, had I let Mom find and use her Kroger card, her credit card would have worked, just fine. As it was, it alerted to potential fraud and refused to authorize. Realizing what had happened, I went ahead and paid for the purchases with my debit card. Karma always has the last laugh.

Anne whizzed by again. Dad saw that we were done in line and lost interest in catching up with Anne.

I needed to use the restroom and asked Mom and Dad to wait on the bench and keep an eye out for Anne. Once back from the restroom, Mom and Dad both needed to go. I waited with the bags, and Mom’s purse. Anne, done shopping, waited with me on the bench. Dad emerged from the restroom first. He stood outside, looking around, trying to find Mom, or me, or Anne. When he saw Anne and I on the bench, he came to join us. Mom emerged from the restroom and stood outside, staring straight ahead. She never turned our way. We waved, knew better than to yell, waited. Mom stood, staring straight ahead. Dad finally went to fetch her. It wasn’t until he was a few feet from her that she noticed. All the way back to where Anne and I waited, Mom scolded Dad for not waiting outside the restroom like she’d told him to do.

We passed Anne’s street on the way back to the facility. I held my breath, but she didn’t even notice.

As I dropped them off at the facility, Mom noticed Dad wasn’t wearing his hat and asked, “How could you forget your hat?” I assured them both that he had not been wearing one when we left. Mom wasn’t satisfied until she’d verified that it was still in their room. She was relieved to find the hat because if he’d left it at the store we’d never find it. We’d been at the wrong store.