By Samra Bufkins
December 27, 2015
This is a follow-up to yesterday’s blog about a little scare we had on Christmas Eve.
I was not surprised to read several articles the week before Christmas anticipating increased calls to Alzheimer’s help lines and organizations. There are plenty of articles preparing families, guests and caregivers for the holidays, but if somebody hasn’t seen Grandpa or Mom in a while the changes can be shocking, especially if that family member is still in denial or simply uneducated about the disease. Alzheimer’s charities in the UK expect a 60 percent rise in calls after Christmas because family members who haven’t seen their loved one in a while become alarmed at the dramatic changes they witness.
In many cases, one family member is the primary caregiver, with others providing support ranging from regular to nonexistent. I continually hear stories of adult children blaming the healthy parent or accusing him/her of ineptitude when the parent they see sporadically deteriorates. They aren’t living with the stress of caregiving 24/7. Sometimes when they visit, their parent is at his or her best, and they see nothing beyond “normal aging.”
One friend I’ll call “Sally” said their many children thought she was making things up until each one had an individual experience with their dad—an event that occurred when they were with Dad and nobody else, especially Mom, was around to influence his behavior. Once it dawned on that child there really WAS something wrong with Dad they each came around and were more supportive.
Sometimes it’s hard to remember the patient’s behavior is the disease speaking, not the person.
Alzheimer’s is not just about memory loss
Change—sudden or subtle—can indicate the progression of the disease, a change in medications, or an underlying medical condition. It should not be taken for granted. As illustrated in yesterday’s blog, language difficulties may make it difficult for Alzheimer’s patients to express symptoms.
Everybody—especially the advertising agencies promoting dementia drugs—focuses on memory loss in Alzheimer’s. Yes, it’s sad when Grandma can’t remember you, but it’s even sadder to watch your spouse hold something in his hand and have no clue what to do with it.
That happened Christmas Day at our house. Multiple times.
Bill’s brother Jim was planning to come over for dinner, but we hadn’t confirmed the time. Around 11 a.m. (we slept in after our late Christmas Eve night) I suggested Bill call Jim to confirm the time. I was reading the paper and drinking a cup of tea in bed and realized 30 minutes had passed, so I went in search of Bill.
He was wandering in a circle between the office, kitchen and living room. I asked him what he was looking for, and he said a phone book to look up Jim’s number. I said “his number is on the card by the phone” before realizing the card was gone—one of the many things that mysteriously disappears from the house from time to time.
Bill followed me back into the bedroom to get my phone. I handed him the phone and told him to write the number down in the little Moleskine notebook I bought him for recording the things he wants to remember. He couldn’t find it. Another 30-minute search before it was found in full view on the coffee table. Then I noticed it was empty. He writes people’s names and phone numbers down on random pieces of paper that are never seen again. And his notebook remains blank.
He held my phone, wrote down Jim’s number and went back into the kitchen where the landline is. A good 20 minutes went by and again, I padded into the kitchen to see what was going on.
He was holding the phone, puzzled, because he was getting “I’m sorry, this call cannot be completed as dialed” messages.
I looked at his notebook. He had written Jim’s phone number down wrong. Exasperated, I dialed the correct number and handed him the phone.
Some would say, “Why didn’t you just call Jim yourself?” That’s a good question. Bill needs the mental stimulation of doing something. The more activities we do for the persons with Alzheimer’s, the less they are engaging their brains. But it was shocking to me that he couldn’t say “Hey, I think I have the wrong number because I’m getting a recording”—something any one of us would do in that situation–because he could do it on December 24.
This problem isn’t about memory loss, but loss of executive function.
Executive function and self-regulation are the cognitive processes that give us the means to focus attention, plan actions, remember instructions, and multitask. We learn these skills as children. We begin by thinking about what needs to be done and how to solve the problem. Next we start acting on the first step and continue until it’s done. We learn to do each step and move on to the next so we can finish the task or solve the problem. We end by evaluating our work to determine whether or not we’re finished or need to do more.
Later on Christmas day, Bill’s brother was in the living room, enjoying some eggnog and a basketball game on TV while I worked on dinner. As I finished up an elegant dish of acorn squash, farro, apples and savory vegetables I asked Bill to put some ham slices on a plate to warm up.
He got the ham out of the fridge and put it on the counter. He then stood in the middle of the kitchen popping his knuckles (an annoying habit he has always had, but that I now realize he does differently from the way he did it 10 years or so ago). I asked him what he was looking for. He didn’t answer. I said, “Are you looking for a knife?” He said, “What do you want me to do?” I told him I wanted him to slice the ham. He went back to the refrigerator and opened it.
“Where’s the ham?” he asked.
“On the counter, where you put it.”
He went back to the ham, unwrapped the aluminum foil, and stared at it. I handed him a knife, but he clearly didn’t know what to do with it. I reminded him he needed a serving platter, and he reached into the cabinet for a small salad plate, which I promptly replaced with a platter.
He stood there, staring at the ham with a carving knife in his hand while I melted butter for a sauce. I suggested he needed a meat fork. He stared at me like I had two heads. I gave him a meat fork and he put it down. Finally, I just sliced the ham myself, put it on a plate and into the microwave to heat up.
He watched me, fascinated, and then said “I could have done that.”
The table was set, but we needed ice water on the table. I’ve learned the request “put ice water on the table” is too abstract, so I make requests one step at a time, but this turned out to be a chore almost as agonizing as slicing the ham.
I asked Bill to get three water glasses out of the cabinet. When I looked up he had a wine glass, a coffee cup and a blue plastic glass we use by the pool.
Still wanting some sort of festive table setting at dinner I suggested he grab three of the Waterford tumblers. He got one, looked at it and noticed it was dirty. (This is also a problem—he likes working in the kitchen, but dirty dishes and utensils end up in the cabinets….but I digress.)
He washed it and sat it on the counter and stared at me. I said, “Get two more glasses out.” He started looking on the other side of the kitchen, where mugs and cooking utensils are kept. Exasperated, I marched over to the cabinet, selected two more tumblers and set them on the counter.
He looked at me like I had a tree growing out of my skull. I was fighting back tears.
I said, “Please put ice in each glass.” I needed to finish my vegetable dish before it became inedible.
He gingerly put ice in one glass, then another, then the third one after he tried to put it back and I reminded him his brother was here and we needed three. He meticulously ensured there was an equal number of ice cubes in each glass, then lined them up on the edge of the counter and looked at me. I asked him to put water in the glasses, which he did eagerly because he likes using the filtered water dispenser in the refrigerator.
He put the glasses back on the counter and it was clear he had no clue about what to do next.
I stared back in disbelief. How could so much have changed so fast? No wonder people who don’t see their loved ones regularly call the Alzheimer’s helpline in droves after holidays.
He said, fingering one of the glasses, “What do you think I should do with these now?”
A five-year-old would most likely know to put the glasses of water on the table, but Bill had to be told to do that. And then I had to check to be sure he put one at each place setting—because he lined all three of them up in front of one plate.
By this point I’m in tears, the Brussels sprouts are a little overdone, and I no longer care about Christmas, dinner, or the mess in the kitchen. I want to be on a tropical island, lying in the shade of a beach cabana, enjoying a beverage and getting a massage. Alone. No traveling companions. Just me and my reading materials, with no phone.
How could things change so fast?
Somehow we got through dinner, which I’m told by both guys is delicious, and I entrust kitchen cleanup to Bill, knowing full well leftovers will not be put into a container, just covered up and put into the fridge. Dirty dishes will be put into the dishwasher with clean ones (or put back into the cabinet as-is) and soap may or may not be put into the dispenser. The sterling silver will be stored with the steak knives and plastic spoons, the wine glasses will be put with the mismatched promotional coffee mugs, and the mixing bowls will be stored with the pots and pans (if I’m lucky). Recyclable materials will be put in the trash can, which may or may not have a bag in it, and any food dropped on the floor will stay there until a cat eats it or I sweep it up, whichever comes first.
Throwing together a few healthy, simple side dishes to go with a ham is something I’ve been able to do for decades without thought or stress. I used to assign one dish to Bill and he could complete it, and embellish it—he was a good cook, back in the day. As newlyweds, our first argument was over lasagna assembly, because our mothers each did it differently and that’s how we were taught. He used to do a better fried oyster or catfish fillet than I did, and I taught him how to do it! His guacamole was legendary and he always made coffee by freshly grinding the beans and then steeping them in a French press pot.
Now there’s a sign on the Keurig reminding him how to turn it on.
He was in the kitchen for several hours after Jim left, “cleaning” the kitchen. I collapsed in my recliner with a nightcap and fell asleep.
I woke up Saturday morning and went into the kitchen, where the counters, sink and stovetop looked virtually the same as they did when I brought the last dish of food to the dinner table the night before. Inside the fridge was the ham, as well as the serving platter of sliced ham loosely covered with foil. Leftover vegetables were also in their serving bowls covered in foil—the hundreds of dollars’ worth of Pyrex, Frigoverre and Glad storage containers sitting unused in the cabinet—as they always are unless I put the food away at night. A dirty wine glass sat on the floor next to the cat food bowl.
The memory loss that comes with Alzheimer’s is hard to deal with but for this Alzheimer’s wife, caregiver, partner, it’s the loss of executive function that is the hardest to take. It’s further evidence that more of the brain is dying, and, selfishly, it’s a reminder that more and more work is falling on the caregiver, who now must rely on HER executive function and self-regulation skills to anticipate more details of life in the abyss.
Article linked to:
Doty, Leilani, Ph.D. Executive Function & Memory/Cognition Changes. Alzonline University of Florida College of Public Health & Health Professions. McKnight Brain Institute, University of Florida, 2012. Web. <http://alzonline.phhp.ufl.edu/en/reading/executivefxlatest.pdf>.