Alzheimer’s Journal: stages 6 and 7

“So what is stage 6?” my older son asked on the phone, far away in another state.

STAGE 6: Moderately severe Alzheimer’s. During stage 6, there are five identifiable characteristics that develop over the course of 2½ years.

6a. Clothes: In addition to being unable to choose their clothes, someone with stage 6 Alzheimer’s will need help putting them on correctly.

6b. Hygiene: A decline in oral hygiene begins and they’ll need help adjusting the water temperature before baths.

6c-6e. Toilet: At first, some people will forget to flush or throw tissue paper away. As the disease progresses, they’ll lose control of their bladder/bowels, and need help with cleanliness.

By this stage, memory is much worse, especially around current news and life events. Counting backward from 10 will be difficult. Your loved one may also confuse family members with other people and display personality changes. They may experience:

  • Fear of being alone
  • Fidgeting and repetitive behaviors
  • Frustration, embarrassment, shame
  • Suspicion and paranoia

They may also start stuttering and become frustrated with this. Assistance with personal care, from daily tasks to hygiene, is necessary. They may also start to sleep more during the day and wander at night.

We talked about the sleep disturbance, and the bath reminders I’ve done a couple times. I’ve told my siblings and my kids – I’m not doing personal hygiene.

“So close,” he says.

“Yeah, stage 6 is where I get off,” I agree. “This stage 5 is supposed to go on for a year-and-a-half, which is when your brother starts college. So we plan to re-evaluate then anyway – it may time out perfectly.”

“I keep saying, I don’t think you’ve got a year. I think that’s optimistic.”

“You just say that because you love me.”

“You think I love you because I just say that.”

I laughed. Wandering the garden to get phone reception, I’ve begun weeding the stubborn grass between my rows. Tiny pale lettuce has popped through the perfect soil my dad worked so hard on. Two long skinny darker green leaves each announce the arrival of spinach, like a 15-year-old flopping onto an armchair and hanging all legs and arms over its sides. Fantastically and unbelievably, my four rows of peas have now sprouted.

I planted years-old seed Mom had tucked into drawers and cupboards. She now believes she put them all into one tidy drawer because I put them all into one tidy drawer. The packages announce why my sprouts are, in fact, miraculous: 2010. 2011. 2013. 2009. An unlabeled jar of marigold seeds with Christmas wrapping paper under the two-piece lid; Mom and I unearthed it from the far reaches of a low cupboard, swaddled in a distinctive tall basket, probably a gift.

In fact, it had been a gift. Before I had the old 80’s basement TV hauled away with the VCR and reproduction antique-icebox-style oak TV stand, I watched the VHS home movies, to know which ones to have copied onto DVD’s. On one tape, Dad is well and strong, and I’m sitting beside him on his loveseat upstairs, the loveseat where he read his library books, the loveseat where I typically sit in the evenings now with Mom. I’m trying to sing the old Swedish Christmas song his mother always sang in ultra-soprano on Christmas mornings, and he’s trying to help me remember the words. Becky hands me a song sheet, organized and resourceful as usual, and we finish the song.

As kids do their best to be patient while we open presents one at a time, my older daughter, a sweet grade-schooler with glasses, hands Grandma a gift: the jar of marigold seeds from our garden in Denver. Mom thanks her and sets it aside.

She set it aside for at least 20 years. I will be doling out seeds from this jar for the kids’ Christmas stocking stuffers this year, so they can plant these same flowers in their own yards and apartment windowboxes. What will grow after 20 years of isolation, alone in a dark corner? Maybe something, if they’re planted well, and tended. Maybe bright unruly flowers, to grow near my lettuce, and spinach, and peas.

“So…six stages?” my son clarifies.

“No – seven.”

STAGE 7: Severe Alzheimer’s. There are substages to this final stage, which last about 1 – 1½ years each.

7a. Speech is limited to six words or fewer. Doctors have to repeat their questions during interviews.

7b. Speech declines to only one recognizable word.

7c. Speech is lost.

7d. They’ll be unable to sit up independently.

7e. Grim facial movements replace smiles.

7f. They’ll no longer be able to hold their heads up.

Body movements will become more rigid and cause severe pain. About 40% of people with Alzheimer’s form contractures, shortening and hardening of muscles, tendons, and other tissues. They’ll also develop infantile reflexes like sucking, and have difficulty swallowing. At this stage, the individual’s ability to respond to the environment is lost. They’ll need help with almost all of their daily tasks, including eating and moving. Some people become immobile during this stage. The most frequent cause of death in someone with stage 7 Alzheimer’s is pneumonia.

Devolving. If stage 5 was easy childhood, stage 6 becomes toddlerhood, moody, fearful, not wanting to be alone but wanting to be independent. Fidgeting, easily frustrated, tantrums and name-calling, suspicious of motives, avoiding baths and changing clothes, with difficulty dressing. Potty accidents. Naps. Toddlers cannot be left alone, cannot fend for themselves, do not know the words for what they’re trying to communicate. Their autonomy is fledgling, not fully-formed, tentative.

But stage 7 is the ultimate devolution. We go backward ever faster, just as we initially grew so quickly. Returning to infancy, our few words become one word, a last word as precious as a first. Then instead of learning to smile, we forget how to smile. Instead of proudly sitting up among our toys, we can no longer sit up on our own. Instead of learning to hold that little wobbling head on that smooth, sweet, soft little neck, the old, tired muscles let go, give way. We learned to eat solid foods with our fingers, but now we return to soft foods spoonfed to us, and finally, to sucking, so we don’t choke, liquid nourishment high in protein and nutrients. We must be carried, our diapers changed, laid gently into our beds at night, tucked in snugly, lights turned down, monitors on.

Eventually, our lungs refill with the fluid they originally knew. We return to muffled sensation. And then the spark that ignited our lives, extinguishes.

I don’t say all this over the phone. I just talk in generalities about how, at that point, you need help doing everything and have to be in a nusing home.

“Memory Care,” he corrects me, the euphemistic name a running joke between us. By the time you get there, there’s practically no memory left.

“Yes, Memory Care.” The NICU: Neonatal Intensive Care Unit. I am hoeing now, weeding harder, trying to keep the pathways clear between my rows. Untangled.

Mom has come out to be in the garden, too, now. She’s not too good with a hoe, but she pulls grass from her flower garden by hand, and picks up sticks from the yard. Instead of laying them neatly on the pile, however, she hurls a stick over the neighbor’s fence. I watch her throw a second one, a naughty gleam in her eye. If she does it again, I’ll have to stop her, and talk to her about how we don’t throw our sticks into the neighbor’s yard.



Alzheimer’s Journal: stages 1 to 5

All the world’s a stage,
And all the men and women merely players;
They have their exits and their entrances,
And one man in his time plays many parts,
His acts being seven ages….

— William Shakespeare, As You Like It

Alzheimer’s disease has its seven ages, seven stages to strut and fret her hour upon, “and then is heard no more.” I keep reading lists of the stages of Alzheimer’s, hoping to glean some kernel of wisdom, actually hoping to find a commutation on my sentence here. I have committed to a year-ish. So that’s sort of a commitment to sort of a year, more or less. Sounds like the way I did marriage. I am not one who sacrifices her life serving others unconditionally, it would seem.
I tend to leave myself an exit.

STAGE 1: Preclinical Alzheimer’s or no impairment. You may only know about your risk for Alzheimer’s disease due to family history or biomarkers.

Exits and entrances. Alzheimer’s stages are really all about entrances. The only exit is taking that final bow. Otherwise, people just walk through these stage doors like veils, and carry the veils along as they walk through the next door, and the next, walking into oblivion with veils upon veils obscuring their vision, their understanding, all meaning. They lose their marks, and then their lines, and then their costumes, and then any understanding that they are players on a stage. Poor players. “A tale told by an idiot, full of sound and fury, signifying nothing.”

From this perspective, it seems Alzheimer’s will take Mom into the truest meaning of life, which is, how she perceives it, and how she perceives others. Last night, she couldn’t watch a suspense movie from 1982, “Missing,” because she couldn’t follow Sissy Spacek’s and Jack Lemmon’s story line. The plot hadn’t even begun twisting yet; all she knew was a man was, apparently, “Missing,” in a small Latin American country, where a coup had just occurred – and the idea was being hammered home that you could trust no one.

It was too much. She had to change the channel. As I took my tea downstairs, I realized movies with multiple characters who weave in and out of the story are too hard for her. It’s too much tracking. And if those multiple characters behave out of character, have facades or masks disguising their true motives, she’s just watching sound and fury strutting across her TV screen, signifying nothing. Since she can’t keep up, to her, there’s no meaning. At that point, she becomes unable to follow the dialogue, the setting changes. “Now where are they?” she’ll ask. This is not movie audience banter; this is a cry for help. The movie is too hard for her to follow.

STAGE 2: Very mild impairment or normal forgetfulness. Alzheimer’s disease affects mainly older adults, over the age of 65 years. At this age, it’s common to have slight functional difficulties like forgetfulness. But for stage 2 Alzheimer’s, the decline will happen at a greater rate than similarly aged people without Alzheimer’s. Symptoms won’t interfere with work or social activities. Memory troubles are still very mild and may not be apparent to friends and family.

I have had normal forgetfulness since I was in my early 20’s. I blame it on having children. Parenthood should be considered “Alzheimer’s Stage 0: Creating Biomarkers.” All the things that are contributing factors to an Alzheimer’s patient’s decline happen here. Sleep deprivation, high unrelenting stress levels, confusion, no help. You start with “Pregnancy Brain,” and end up eating toddlers’ leftover chicken nuggets, washing them down with Diet Coke, creating a fog of hopelessness in the McDonald’s Play Place every bit as predictable as Alzheimer’s sundowning. Your exposure to air pollutants is critically high because you must have – you REQUIRE – a trip to the park, a walk to that same little playground, every damn day or you will lose what little of your mind you have left. By early evening, you burn food you are trying to cook, and cannot maintain an adult conversation of multiple complete sentences. You are paranoid, constantly looking away or listening for noise downstairs, sometimes feeling compelled to go look behind quiet doors, convinced something terrible has happened. You read simple nursery rhymes, or watch cartoon movies with easy plotlines and happy music, because you can’t muster the brainpower to follow a movie like “Missing” or read anything from the New York Times bestseller list.

STAGE 3: Mild impairment or decline. Only people close to someone in this stage may notice the signs. Work quality will decline, and they may have trouble learning new skills. Other examples of stage 3 signs include:

  • Getting lost when traveling a familiar route
  • Finding it hard to remember the right words or names
  • Being unable to remember what you just read
  • Not remembering new names or people
  • Misplacing or losing a valuable object
  • Decreasing concentration during testing

At this stage, someone with Alzheimer’s may need counseling, especially if they have complex job responsibilities. They may experience mild to moderate anxiety and denial.

So everyone working a job or taking classes in America is, by definition, in Stage 3. Familiar territory. As young parents return to the workplace or classroom, they experience the relief of a brief remission of symptoms, followed by the list above, creating a sense of utter futility at attempting to make anything of their lives, and a clear need for counseling. The Stage numbers begin, therefore, by matching up more or less with the decade one is in, so Stage 1 in our teens, Stage 2 in our 20’s, and Stage 3 as we approach and enter our 30’s.

STAGE 4: Mild Alzheimer’s or moderate decline. Stage 4 lasts about two years and marks the beginning of diagnosable Alzheimer’s disease. You or your loved one will have trouble with complex but everyday tasks. Mood changes such as withdrawal and denial are more evident. Decreased emotional response is also frequent, especially in a challenging situation. New signs of decline that appear in stage 4 may include:

  • Decreasing awareness of current or recent events
  • Losing memory of personal history
  • Trouble with handling finances and bills
  • Inability to count backward from 100 by 7’s

It will still be possible for someone to recall weather conditions, important events, and addresses. But they may ask for help with other tasks such as writing checks, ordering food, and buying groceries.

While no one but mathematicians and engineers can count backward from 100 by 7’s in their heads, the rest of these symptoms start to feel spooky. Stage 4, therefore, is the combination of experience and early Alzheimer’s signaling to people in their 40’s and early 50’s that it’s time to act on their inexplicable moods and compulsions and create a midlife crisis experience. Since the tasks of ordinary experience are becoming frustrating, ordinary experience itself becomes frustrating, and the impaired brain begins to believe that selling the house, quitting the job, buying international plane tickets and living out of a backpack for months in a land where you don’t speak the language is a great idea.

I stop, contemplating my midlife career change for a quiet minute. This facetious framework I’m outlining is, in fact, sobering. Or exonerating, I decide. If we all have Alzheimer’s, then the world is based on our accommodation. I don’t think the world is; but America, yes. America is built for people who don’t want to think too hard, too long. Or can’t.

“There’s a place for us….” Thank you, West Side Story. The Alzheimer’s brain can still engage in musical gang turf wars. Because we can’t quite follow the dialogue or character arcs of the original “Romeo and Juliet” that Shakespeare wrote. Why work so hard to read, “What light through yonder window breaks? It is the east, and Juliet is the sun,” when you can just listen to, “Boy, boy, crazy boy?” I’m sure it will now be on Turner Classic Movies tonight, since I’ve been comparing it to Alzheimer’s. Stage 4 reasoning.

STAGE 5: Moderate dementia or moderately severe decline. Stage 5 lasts about 1½ years and requires a lot of support. Those who don’t have enough support often experience feelings of anger and suspiciousness. People in this stage will remember their own names and close family members, but major events, weather conditions, or their current address can be difficult to recall. They’ll also show some confusion regarding time or place and have difficulty counting backward. They’ll need assistance with daily tasks and can no longer live independently. Personal hygiene and eating won’t be an issue yet, but they may have trouble picking the right clothing for the weather or taking care of finances.

Welcome to Mom’s house. Stage 5 IS Alzheimer’s. This is where my theory of “Reversals” really starts to show itself. The Alzheimer’s Association taught us that this illness causes a sort of reverse human development. Human devolvement is my term.

In stage 4, we began the human devolvement process. Our staid and stuffy adult demeanor started to loosen into something much more adolescent, as if we’ve handed back our frontal lobe maturation and said, “No thanks, I tried it on, but it just feels too tight.”

In reality, this is one of the areas of damage Mom is experiencing, leading her into that classic teen behavior, random hugging of people you barely know or just met. She also keeps asking me if I want a beer, or some wine, and I keep politely declining, because, true to teen thinking, she does not remember in the moment the conversations we’ve had about how harmful alcohol could be to her damaged brain. And, possibly weirdest of all – she’s now going braless.

This is a person I have never met. It is delightful to meet an old lady who goes braless, offers me wine, and hugs with abandon. It’s just that this is not my mother. Maybe this is “Linda.” Maybe this is who she was, deep down, an interior captive not allowed out of her cell. Maybe this is one foot in each of two alternate universes, trying to ride them both like water skis, like trick riders atop two galloping horses in that old John Wayne movie she watched multiple times without realizing it last week.

Stage 5 is manageable. For me. She still suffers, every day. She wakes unsure what to think, unsteady. She looks for guidance, asking each day if we have anything on the calendar, instead of walking over to the calendar and looking. She doesn’t think to do that, oftentimes. When she does, I am pleased for her. When she does not, I start to gauge how she’s doing for the day.

She has lost initiation. She needs promps now, direction. She’s like a preteen. I tell her it’s time for lunch, and ask if she wants leftover Chinese food or soup and salad. I don’t ask if she’s hungry, or if she wants to eat. I didn’t ask my kids if they wanted to eat – I just announced it was lunch time. The difference is, kids are hungry; Mom doesn’t know if she’s hungry or not. She can’t tell until she tries to eat.

She’s a copycat now, more so than when she chose an email address just like our aunt’s format, or set up her corner cabinet like our aunt’s, or long years ago when she copied home furnishings and fashion from TV and magazines. It reminds me of my daughters, copying me when they were little, the younger copying her sister.

I washed my jeans and hung them on the clothesline to dry; Mom decided to wash her jeans, just one pair, and hang it on the clothesline to dry. She usually uses the dryer. It was actually adorable, her one pair of elastic-waist jeans hung next to her one pair of socks, fluttering separately from mine, as if I’d set up a child-size clothesline just for her.

Hygiene is hard these days. I washed my sheets and hung them out. I finally had to say, “Can I wash your sheets, too? It’s Saturday – time to change our sheets.” She mumbled, I think embarrassed, then gathered her sheets and washed and dried them. I had to do this last week, too, as she hadn’t changed her sheets in at least a month. She has five additional sets of sheets for her bed. I’ve told her she can just change them to a new set, that I can help her if she’d like. But she just wants this one favorite set of sheets. Soon I’ll start donating extra sets, one at a time, so she doesn’t notice.

When the kids were 7-12, they were easy. So is she. I could let them play for hours, and she likes her alone time too, even if it’s just knitting in front of the TV. She’s in charge of her activity in that moment, and it pleases her, to be unsupervised and creative.

She’s conversational, though she is forgetting more words every week. She laughs and understands when someone is joking, if the joke is simple. She dresses herself, toilets herself, feeds herself. But she can’t cook, or drive. Because she can’t keep up with how complicated and dangerous those tasks are. She can’t make the immediate, mature decisions that keep everyone safe.

Two days ago, I pulled frozen breaded shrimp out of the freezer. You can cook it really fast, pan-frying it in 5 minutes total. I thought of how she used to buy this after work on paydays, and we’d drive the many miles home from the grocery store, eating fried shrimp at our farmhouse table, dipping it in homemade cocktail sauce of ketchup and horseradish.

Her eyes were bright and happy as I fried up the shrimp. Cooling and blotting them, I put a few on a plate for her, setting it on the table next to her small salad and bowl of apple slices. She poured some cocktail sauce on the plate; dipping a finger in it, she tasted it. She popped up too fast from her chair, using the counter for balance as she moved quickly toward the fridge.

“Needs just a little more ketchup,” she said happily. She couldn’t recognize the ketchup bottle from the other bottles of salad dressing and mayonnaise and jelly on the door.

I pulled it from beside her coffee creamer. “Here you are,” I offered, and she scampered back to the table to concoct the perfect dipping sauce.

Munching her seafood version of chicken nuggets, she sighed, pleased. “I love shrimp.”

I smiled over at her.