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.