Don’t Let the Sun Go Down*: #MusicMonday

I can’t light no more of your darkness
All my pictures seem to fade to black and white
I’m growing tired and time stands still before me
Frozen here on the ladder of my life

“What day is it?” Bubbalicious asks for the tenth time.

“Sunday.” I don’t look up from the magazine I’m paging through.

She’s quiet, then, “Where am I?”

“The hospital. You came in yesterday and Marvin is taking you home tomorrow. You were dehydrated and feeling dizzy, so you were admitted to make sure you don’t have any accidents.” This is the long version. I usually give this every fifth time she asks.

Don’t let the sun go down on me
Although I search myself, it’s always someone else I see

As the sun goes down, the questions become more frequent, more agitated, more desperate. To change the subject, I show her how to work my iPhone. She handles it delicately “This must have cost A LOT!” She gently flicks the screen. “Who’s this boy?” She asks when she comes to a picture of the Boy. When she gets to the Teen, she looks at her, then back to me, then her again. “This is the Teen, right?” She’s unsure and doesn’t want to make a mistake. I nod. More pictures of the kids. Then we began the age questions. For the next ten minutes, I run down the age and grades of the kids.

And so it goes. For the next hour we alternate between the kids, the day and some caramels she found in the dustiest part of her purse.

Watching someone you love slip away before your eyes is difficult. When she has lucid moments, she remembers that the Mister and I are married and have two children. Then there are times when she scowls at The Mister or pulls back when I try to hug her. She doesn’t know who we are. Now, it’s getting dark, and the longer she and I sit the more she becomes agitated, combative, and forgetful. She smiles and look at me politely or lashes out, claiming she’s not a cuckoo, just the Alzheimer’s. Then she asks what day it is.

For the longest, we didn’t know what was wrong with her. She would do some odd things such as wet a towel, place it in the oven then explain as we questioned the smoke that she was catching turkey drippings. Or the time she took a knife to the Mister for adding “In bed” after reading a fortune cookie. She was convinced that the neighbor had burned her bush despite the fact that every other plant in the neighborhood had lost it’s color due to fall. Then there was her driving. I can’t complain because she taught me how to drive. But as she became more forgetful, driving with her was an adventure for sure.

When she was diagnosed with Alzheimer’s my aunt, mom and uncle were in denial. They were convinced it was light dementia, and that she was just morphing into the crazy lady who demands kids stay off their lawns or that they stop bouncing a basketball because the noise hurt. As she got worse, she would start to wander so a safety bracelet was purchased which she promptly tore off declaring she wasn’t old, she was “Cool.” The last straw was when she fell and had bruises on her legs. Her PCP happens to be my doctor also, so we didn’t have any reports but the family was told that my grandmother either had to go into a nursing home (“I’ll kill myself first! Bubbalicious declared) or live with someone.

Even living with my uncle and his colorful crew, attending a wrongly named adult day care, and the occasional weekends with Queenie, she still manages to forget to eat, properly hydrate and sometimes wash. Basic things I do without a second thought, she does after coaxing and sometimes bribery. This time, she fooled us all. She would snatch a bite here, a sip there. Her purse is a catch all for food she plans to eat later, but forgets she squirreled away. She was dizzy and almost fell and a routine appointment turned into a stay at the hospital.

Per the National Institute of Aging:

Alzheimer’s disease is an irreversible, progressive brain disease that slowly destroys memory and thinking skills, and eventually even the ability to carry out the simplest tasks. In most people with Alzheimer’s, symptoms first appear after age 60.

Alzheimer’s disease is the most common cause of dementia among older people. Dementia is the loss of cognitive functioning—thinking, remembering, and reasoning—to such an extent that it interferes with a person’s daily life and activities. Estimates vary, but experts suggest that as many as 5.1 million Americans may have Alzheimer’s.

Alzheimer’s disease is named after Dr. Alois Alzheimer. In 1906, Dr. Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. Her symptoms included memory loss, language problems, and unpredictable behavior. After she died, he examined her brain and found many abnormal clumps (now called amyloid plaques) and tangled bundles of fibers (now called neurofibrillary tangles). Plaques and tangles in the brain are two of the main features of Alzheimer’s disease. The third is the loss of connections between nerve cells (neurons) in the brain.

It’s a horrible way for someone who once had so much spunk and fight to live. My grandmother would refuse to leave the house without Minnie Mouse red lips, hair perfectly coiffed, and taupe stockings. Don’t ask.

Now, she hides her teeth and forgets where she hid them (deep under the bed is a favorite), runs a thick comb through her hair immediately after it is curled because that “girl doesn’t know what she’s doing!” therefore mussing the style, and her insistence that white tube socks and black loafers are her choice of footwear despite the weather or outfit.

Sigh.

The Teen remembers her when she was lucid and still spunky, splitting a pint of ice cream they bought at the corner store. The Boy knows her as Bubie, who just asks the SAME thing over and over and complains. I remember her as Dolly, the spitfire who assured me that I was doing fine as a new mother, urging me to drink milk so that I could nurse the baby.

“Who’s that lady?” she asks, not quite whispering when her nurse Amanda comes in to assist her to the bathroom.

“That’s your nurse,” I remind her, gathering my things to go home. “Call me if you need anything.”

I hug her and she squeezes back. “Thanks for coming to see me.” A pause. “What day is it?”

I’d just allow a fragment of your life to wander free
But losing everything is like the sun going down on me

Resources for Alzheimer’s**:

Alzheimer’s Association
225 N. Michigan Avenue, Floor 17
Chicago, IL 60601-7633
1-800-272-3900 (toll-free)
1-866-403-3073 (TDD/toll-free)
http://www.alz.org/

Alzheimer’s Foundation of America
322 Eighth Avenue, 7th Floor
New York, NY 10001
1-866-AFA-8484 (1-866-232-8484; toll-free)
http://www.alzfdn.org/

Eldercare Locator
1-800-677-1116 (toll-free)
http://www.eldercare.gov/

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
1-800-445-8106 (toll-free)
http://www.caregiver.org/

NIHSeniorHealth
www.nihseniorhealth.gov/alzheimersdisease/toc.html