Holding on to Stage 6

Because of the year-long Covid lockdown and her recent fall and broken arm, we were alarmed to recognize that Mom’s cognitive decline has accelerated.  According to the criteria from Fisher Center for Alzheimer’s Research Foundation website: Clinical Stages of Alzheimer’s, I think Mom is currently in stage 6. Since its the next to last stage of Alzheimer’s, we are desperately trying to hold onto Mom as she slips farther away from reality .

Even though she knows she is old, Mom tends to confuse past and present. And sometimes her stories don’t make sense. Once she was looking at a picture of herself and my dad, Jim, when they were teenagers, and she asked if I knew who Jim married.

“It sure wasn’t me,” she said defiantly.

“Yes it was,” I thought (they were married over 30 years), but I was so shocked that I told her I didn’t know who he married. Or sometimes she wonders if she’ll get a teaching job this year (she’s been retired from for 25 years). I think she holds lots of memories in her head, but when she tries to connect them, they come out crooked. When her comments are confusing, I try and change the subject.

Most of the time Mom is comfortable thinking she is about 80 (she winces terribly if anyone tells her she is actually 91). She tends to think her grandchildren are still small, but they are actually from 12-36 years old. We try to keep her grounded in the present by placing current photos of the family around and repeatedly naming each person during visits.   My sister recently created a great album of the way we look now using Shutterfly.

I can become obsessed with reading about dementia stages – partly to figure out where mom is cognitively, and also to find out where she is headed. I am frightened for my mom and researching gives me direction for how our family can best navigate this confusing disease. It helps me understand what is happening to her currently, how to respond to her appropriately, and to prepare myself emotionally for when what-comes-next happens.

It terrifies me to think that the next stage is the end stage because Mom is still so alive and vibrant.  I realize there may not be much time left with her. We all enjoy hanging out with Mom. She’s fun, and funny, and lives in the moment. Although mom struggles with many deficits, she still enjoys life. It’s great to see her face light up when she recognizes I’ve come to visit. She is so satisfied when she is surrounded by her family. She typically looks around at all of us and says, ”Am I responsible for all of this? Are all of you here because of me?” We all laugh and agree with her, realizing there are still good moments to be had with the leader of the pack.

She’s also a lot of work because of her diminished capacity. Three hour visits seem to be the sweet spot for the perfect combination of my patience and her attention span. I try and visit two or three times a week. My siblings and I take her out for visits to museums, lunch and dinners, grandchildren events, and celebrations. When the visit it over, it’s such a blessing to be able to leave her at the Memory Care and know she is safe and cared for. Dad died 38 years ago, so she has been our only parent forever.

Currently, Mom’s behavior fits all the criteria for Stage 5 and Stage 6 as described below. Hopefully she can hold on at this stage for a considerable time. I can’t even begin to process what life will be like when she moves to Stage 7.

STAGE 5: MODERATE DEMENTIA

• Breakdown in personal self care because of decreased mental capacity.
• She can’t remember if she has done something or not, so we try and keep to her routines and give her directions. For example, she doesn’t remember if she had breakfast or not, but if invited, she will go.
• Mom needs to be prompted to get dressed, brush her teeth, and to wear her hearing aids, but she remembers to fix her hair, wear a pretty bobby pin, pencil in her eyebrows and put on lipstick – She will even put on a necklace. LOL vanity is last to go!
• She is having some difficulty with incontinence and now wears disposable underpants. I got rid of the cloth ones and put the disposable ones in the drawer. She hasn’t said a word about the difference.
• She has a hard time finding appropriate clothes for the occasion- she doesn’t care what she wears, she only want to be comfortable and warm. If she is cold, she might wear her bathrobe like a sweater to play bingo.
• May wear the same clothing day after day. She does not notice stains or care about them, even when I point them out
• Increased confusion of time and place- She even gets confused in her room. I put a sign on her bathroom so that she can find it.
• Can’t recall current events, the president’s name, the season, or year- nor does she usually care about them
• She gets mixed up sometimes when introducing me – she occasionally calls me her sister or her mother.  I don’t think her brain works fast enough to correctly or quickly process relationships. She knows I’m her family.
• Doesn’t know her current address -she is losing memory of distant friends and relatives- except her childhood family. She can correctly identify all twenty of her aunts and uncles, and myriad cousins in old photos, but sometimes gets confused with her current family.
• Loosely holds information and memories of the past sixty years – sometimes she may remember with prompting, but other times not
• Calculation deficits- mom can count backwards from ten, but not from 20.

STAGE 6: MODERATELY SEVERE DEMENTIA

• Increasingly Hard time doing things- We try to set her up so she can do it herself. She is still modest and dignified.
• Can’t sequence well. For example when brushing her teeth- put toothpaste on toothbrush for her and give her a glass of water; going to the bathroom- flush the toilet, lead her to sink to wash hands, show her the soap -give lots of cues “Here is the soap.  Here’s your towel.”
• Hard to start conversations and socialize-  She can’t initiate activities on her own-it helps to use pictures to instigate conversations; tell mom what you want her to remember. For example: “Hi mom, it’s Karen. Here is a picture of you and me, dad, and Dave when I was ten in Minnesota.  We used to go to the lake for picnics in the summer. Dad and Dave loved to swim in the lake and you and I hated it. It ruined our hair!”

• Loss of depth perception- She can’t see as well/color contrasts are helpful- vision problem is in the brain, not the eyes; she has trouble guessing distance/range and seeing color on same color. Mom walks on the edge of the sidewalk, puts objects on the edge of the table, misses the wastebasket, gingerly steps over small thresholds as if they are dangerous.
• Gets lost where she lives- each step outside her room is a new adventure. “Which way should we go?”  Signs in the hallway help direct her when she pays attention to them.
• Can’t bathe without assistance and must be coaxed to take a bath, and needs help picking out appropriate clothes. Her warm and cozy ”spa” robe helps get her in the mood.
• Sensitive and bothered by noise and chaos. We try and take her to quiet restaurants, and find a prominent, yet sheltered seat for her during family gatherings.
• Lost concept of time – fluid:  usually not aware of time of day or place or season- “Is it dinner time?” (2:00 p.m.) “Looks like it might snow.” (it’s July)  “Where are we?”  “Have you seen your father lately?” (he’s been dead for 38 years). One moment she is in the present, another moment somewhere back in time.