Not certain what’s up with this routine thing, but it’s happening. And, I’m the one making it happen!?
Here’s the story: on May 18th we pulled in to Glen Ellyn – a suburb of Chicago. On May 26th, we moved in with Maribel, who is living with early onset Alzheimer’s. Her home reminds me of the home I grew up in, in Cupertino, CA.
It’s a “3/2”, one level ranch, AND THE BEST PART, has a screened in patio overlooking a park-like backyard.
Over the last year Maribel has had various/inconsistent part time help, but her need is greater. Now, I’ve never assisted someone with memory loss, so I’m doing a lot of Google homework to get caught up. I feel pretty good about some of the changes we’re making around here, and it’s evident that Maribel is getting stronger too.
Arriving To The Scene
You heard me correctly, Home Depot. This is Maribel’s lifeline, where she works as a Greeter. She loves them, and they love her. However, we learned this was also the place she could smoke freely. When she was home, cigarettes were confiscated. We have found cigarettes in flower pots, the ice machine, under the mattress… and cigarette butts… in places which make the landlady extremely nervous about what goes on when no one is looking. Maribel got quite sneaky. Then, volatile when questioned. People were taking away her independence, and her brain couldn’t remember she JUST smoked a cigarette 10 minutes ago.
Nothing To Do
One complication with Maribel’s disease is the inability to realize what to do next. This results in a lot of couch time. Maribel wasn’t even going to a bed at night – preferring clothes on, and sleeping on the sofa with the TV on. She wasn’t eating, or eating right, and her weight dropped 35 pounds in 3 months. With her Alzheimer’s brain, it is almost impossible to be a self-starter.
Lost Phone, Lost Purse, Lost Money…
Much of her home was chaotic, and Maribel gets into a panic attack when she misplaces one of these items. I’m telling you, the color leaves her face, her heart clearly races, and her entire body starts to shake. Next thing you know, all the cabinet doors are open, sofa cushions on the floor, the bed torn apart… in seconds!
Literally and figuratively, we cleaned up around here. Healthy food, exercise and minimizing clutter.
Getting Maribel Buy-In
Surprisingly, she has accepted our intrusion. She has allowed us to tuck away the endless costume jewelry,
sort the clothes that no longer fit, get rid of the magazines & junk mail, even rearrange the kitchen cabinets. And, she’s a very good eater when someone else is cooking.
While Woody is putting some meat on her bones, I see my job as a motivator. No one can make you quit smoking, but here are some reasons you may want to quit…. do any of those sound important enough?
Let’s just say we’re down to FOUR cigarettes a day. No more sneaking. We’ve seen her postpone her cigarette for two hours, studying this sign.
I think just having the cigarette and lighter nearby, is comforting.
I’m really looking forward to the morning Maribel wakes up and says, “I’m done, give me that patch – I’m ready to QUIT.”
Routine Makes Life Easier
Predictability is important for a person with Alzheimer’s. We’ve come up with a white board where Maribel can see what her day looks like, and minimizes surprises or the unknown. Sure, she’ll still ask a dozen times, “do I go to Home Depot today?,” but the board helps.
We’ve missed only one “Brisk Walk” due to weather, and missed a trip to the library because someone got started cleaning windows. Ugg – who starts on windows?
I am as transparent as possible with Maribel. She is struggling with panic attacks which lead to destructive behavior, like smoking or chewing on her fingers. She is unable to communicate what set her off, “what they did, is, you know…” I play interpreter – it’s weird how good I’m getting at this. Then try to redirect her, and talk about what we do have control of – like our health. I am guilty of Therapeutic Lies, and it makes me feel terrible inside, regardless of how I justify it to myself. Maribel’s future is frightening and at the moment, unknown. We focus on the day, and work together to get things done. In this effort we will soon have clean windows.
UGG! WHO STARTS WINDOWS?!