Learning to Live With a Devastating Disease

The phone rang at 4:40 a.m. in our bedroom. I don’t get many happy calls at 4:40 a.m.

It was June 1 and my mother was panicked.

“Where are you--you’re missing--I reported you missing to the policeman!”

“What, Mom? Are the police there?”

“Yes! Yes!” She was breathless. Suddenly I was, too. I asked to talk to the policeman.

“Ma’am?” said a male voice that carried authority, even saying “Ma’am.”

“Your mother has reported her daughter Brendie missing since yesterday.”

“Oh Lordy, I’ll be right there, I’m a grown-up, I’m not missing, officer, I live nearby, she gets . . . confused.”

I drove over in my nightshirt with uncombed hair and raccoon eyes from yesterday’s mascara.

Later that day, she and I kept our long-standing appointment with a neurologist, who gave us our first official diagnosis of Alzheimer’s disease.

I’d suspected as much and wasn’t really shocked. Mom seemed unaffected by the diagnosis.

“I’ll beat this,” she said.

Two days later. I had spent the night at Mom’s and woke at 4:50 a.m., this time to the smell of frying fish.

“How about fish for breakfast?” Mom chirped as she flung the guest bedroom door open. In her youth she’d fished every river in the Missouri Ozarks and always caught her limit.

“These are kind of sweet, though.” She’d accidentally added sugar instead of salt to the skillet. “But they’re still good.”

That afternoon at a futon store, I bought a couch that makes into a full bed and put it in our extra room. I asked her to spend the night. She preferred her own bed, as usual.

Too bad she didn’t stay. Something woke me the next morning and I called her at 6:30 a.m. She had fallen.

I sped over at dawn. This time I put clothes on over my nightshirt, in case I ran into a member of our local law enforcement community.

She had taken a 4-foot fall off her front porch to the concrete sidewalk and broken six to eight ribs. For the first time ever, I saw her face contorted in pain. She had always been a stoic. As the oldest of 10 on a poor dirt farm in Missouri in the Depression, she had to be. She helped raise her brothers and sisters with no electricity, heat or plumbing except from wood-burning stoves, coal-oil lamps and water toted from the spring by bucket.

We gunned across town to the ER. We were pros at this. She’d been to the ER twice this year with bouts of pneumonia--the first time in January, then another in April.

We’re on the fifth floor of the hospital the next day. Mom’s having delusions that my dead dad and grandparents are coming to breakfast. The sad thing is that she thinks Daddy, who died in 1975, doesn’t care enough to come visit.

Three days ago, when Mom cooked breakfast for Daddy with 12 fried eggs and biscuits and he didn’t show up, I gently told her he had died.

“Don’t you dare tell me my family was killed in a horrible car crash!” she wailed.

So here in the hospital I said, “Yes, he’s late. Let’s eat without him.”

I’m learning.

We may need 24-hour care when she goes home. I can’t--won’t--do what I know she wants me to, which is move in with her.

I’m in a state that’s like what I imagine shell shock to be. I’m forgetting how to live my own life. Even here in this hospital room, she blows me out of the water with new, temperamental behavior. I’ve gotten used to the accusations of theft of her jewels, of drugging her, stealing her $20 bills, her breath mints and bud vases. Now she’s accusing the nurses of stealing her Kleenex.

A couple days later, back home, it’s not much better.

“Make these strangers leave--I’m fine now,” she instructs me about the caregivers who now come and bathe her, cook her meals, clean her house, do her laundry and ironing, help her walk, handle her midnight medications and even give her pedicures.

“You’re not paying them money, are you, Brenda?”

I’m getting--well, no I’m not--used to the sad physical transformation she’s going through: vacant eyes, halting steps, more and more fragmented, delusional conversation. She has aged a decade this week. The broken ribs were a major setback. She’s in constant pain.

One afternoon I come in her back door and she asks, “Where’s my little Brendie?”

The first time she asked that I said, “Oh my God, Mom, don’t you recognize me?”

Now I say, “I’m your big Brendie and I’m here. Want some M&Ms;?”

By June 12, we’re back in the emergency room as a readmission. She came down with pneumonia on her fifth day home from the broken ribs, which we knew was possible.

In the ER, she takes the plastic oxygen nose tube from one of her nostrils and places it on her forehead. Questioned, she tells the technician they always did it that way in Missouri. A minute later, she removes the oxygen level measurer tube from her fingertip and ties it in a pretty bow around her bed rail.

At one point, Mom offers me “a lot of money” to bring her a pair of slacks and a $100 bill so she can catch the SCAT bus home from this awful hospital. I’m considering the offer. I hear she’s made the same offer to the night janitor.

This time around, she has “minders” to keep her in bed; she tries to escape. They infuriate her. She’s rude to them, my meek little mother who never raised her voice the first 78 years of her life.

The hospital stay is five days this time. I bring her home June 16. She looks 10 years older. She gingerly sits down in her Barcalounger. Then she is up, taking a shaky step forward.

“Mom! Use your walker!” I admonish.

And then I realize what she is really doing--she has stood, smiled and opened her arms wide just to give me a big hug.

As the days pass, she increasingly wants me there all the time. I’m drained when I’m with her and guilty when I’m at home. I dread everything.

I can’t stay. She is a caricature; she needs constant care. She roams the house nightly from 2 a.m. on.

Mom’s been taking Vicodin, a narcotic painkiller for her broken ribs, which take months to heal. Her eyes are like pinpoints. She looks like a Stephen King character.

She still wants to catch a bus home, although she’s home.

As June ends, I’ve become steadily more involved in every aspect of her life. I have taken over her bill paying, check writing and shopping. I take her to the grocery store daily--it’s the only thing she still wants to do. She can’t address envelopes. Last week she paid a bill by mailing her uncashed Social Security check to the cable TV company, addressing it to “TV Ventura.”

She knows something’s not right. She says, “I’ve lost my numbers, Brenda.” This poignant admission from a woman who was a head bank teller and accountant for 50 years.

In the early weeks of July, reality settles in as a series of ups and downs for both of us. Mom has begun taking the latest Alzheimer’s drug, called Aricept, and she is showing some improvement--fewer delusions about deceased relatives, missing daughters, money, jewelry and M&Ms.;

On the morning of July 10, I lose my temper. I’ve read four books on Alzheimer’s and think I have to be the perfect Alzheimer’s daughter. Then suddenly I am hissing through clenched teeth, “Be quiet, Mom. You’ve asked me that 15 times in the last hour!”

She shoots back, “Jesus whiz and damn it, Brenda, I’m not a baby.”

The sniping continues. The next day she swears at me and the caregiver all day. She’s frustrated and cranky; she’s lost control of her own pills, her driver’s license, her privacy and independence, even her right to cross a street or take a bath by herself.

Swearing is classic Alzheimer’s behavior, say the books I’m reading.

It goes on like this as the days pass. By mid-July, she is beginning to regain strength and takes walks now without her walker. She also is off the Vicodin. There are good days, but bad days, too.

July 15 is one of the good ones for both of us. What a nice day. Mom is mellow like years ago. We take her to a little outdoor Mexican cafe for tacos. Can this last?

And a couple days later, there is a very good day for me--the day I needed to reach.

For the first time, I find myself at an Alzheimer’s support group. It’s what I need--everyone there is in the same situation Mom and I are in. They smile when I tell them about my guilt, my loss of temper lately and my overwhelming desire to run away to Cancun.

“Ditto,” they say.

Think I’ll go back.

FYI

More than a dozen free Alzheimer’s support groups meet throughout Ventura County. For information, call the Alzheimer’s Assn. of Ventura County at 485-5597. The Long Term Care Omsbudsman Program of Ventura County also holds free support group meetings for relatives or caregivers of Alzheimer’s patients. Call 656-1986 or 373-7371 for meeting times.