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.