There’s a scene in the Clint Eastwood classic, “Pale Rider,” where one of the cowboys exclaims (after witnessing Eastwood’s “Preacher” character whoop up on the bad guys): “Preacher, my ass!” That’s how I feel today when I see the phrase “Embrace the New Normal” from the OBC Creed. WHAT? Impossible.
Because the “new normal” has shifted again. Oh, I was ok with it as long as it was mom being what we’ve come to know as mom: pleasantly confused, yet funny; slower, yet still moving; jumbled; yet still talkative. Last few weeks? Not so much.
What I know is that it could shift back to this former mom, or it could shift into a worse mom. Meaning, a mom whose disease has progressed. This is the reality. And that’s what I don’t want to embrace.
But, we have no choice, right? Dementia marches on whether we like it or not. It is a terminal disease.
But for the longest time, we were blessed with a sort of pause — a space where mom seemed to stay the same. We got used to it. We didn’t like it, but we got used to it. Yes, we embraced it. Sometimes we gave it one of those mean girl hugs – the ones that are a bit too tight, if you know what I mean. The ones that really aren’t nice. A fake embrace.
About a week ago, mom wasn’t feeling well. My sister-in-law called and said “hmmm…I don’t like the way Nuni (NOTE: that’s her grandmother name–long story) is acting.” Then the director of the memory care unit called and said, “If she doesn’t bounce back, you may want to consider your options.” Meaning, bring in Hospice.
OK, what does that word mean to you? To me and my big, extended family, it meant PANIC! Death is imminent. But apparently, the new Hospice ain’t like the old Hospice. They don’t just rush in when a person has days to live, they also come in when certain other criteria are met. Meaning, in mom’s case: she isn’t walking independently anymore (she’s in a wheelchair); she isn’t talking as much anymore; she’s lost weight; and she’s sleeping a lot of the time. Oh, and she’s fallen several times in the last months. And has a history of cancer (even though that’s not relevant now, thank heavens).
I should’ve known. Mom hasn’t wanted to go to the beauty parlor lately, so something had to be wrong – bad wrong. I figured it was the allergies she’d been battling, but I made my plane reservations anyway. The next day I was in Dallas, and I didn’t like the way Mom was acting either. She just wasn’t, well…mom.
I met with Hospice, had very long conversations with my siblings, then signed the papers. It was official: Mom was a Hospice patient. I hate the way that reads, but that’s the new normal.
Now, the Hospice nurse assured me she has patients that’ve been on Hospice for years. I’m banking that mom will be one of them. We’re not ready to lose her yet. We’re not ready for her to deteriorate into that state we’re all familiar with — the end-stage stage.
Reality? Mom was diagnosed with dementia sometime in 2008. We think. We can’t remember. (Insert aging joke here). In the 2013 Alzheimer’s Disease Facts & Figures, the Alzheimer’s Association reports that the average life expectancy after diagnosis is 4-8 years. You do the math. Yeah, I’m hating the new normal right about now.
Mom got to feeling and acting better in the days I was there. I was hoping for a trend, but it seems she didn’t get her hair done again this week. So, I don’t know. In the meantime, we go about our plans for the holidays, make travel arrangements, and know in the back of our minds that if necessary, we’ll catch the next plane to Dallas.
She could bounce back as she has countless times in the past years, or she might not. My brother reminded me today how bad Mom was years ago before we moved her to memory care, and how much better she got after she settled in. I know we all hope that’ll be the case now. That there’ll be an upturn. That she’ll get feisty and active again. That one day we’ll wake up and it’ll seem like this Hospice thing was just a mistake. That Hospice will call and say: “We discharged your mom; she doesn’t meet the criteria anymore.”
I’m not holding my breath, because I’m trying to be a big girl and face facts. Actually, I’m grateful Hospice is in the mix now. They’re there numerous times a week, and we can all benefit (mom especially) from more ears and eyes on the ground. And if mom has one of her spells (scary medical term is “syncope”), she doesn’t have to be rushed to the ER. Those ER trips are hell on mom, and hell on her sweet husband who won’t allow her to go without him (even though he really can’t understand what’s happening). Hell on the loving family members that accompany her there. Hell on those of us who wait by the phone, wondering if this time, it’s more than a fainting spell.
So, with your help, I’ll get to work on truly accepting, and embracing, this new normal. I’ll focus on the OBC Creed, written in a moment when things weren’t so pressing, when deep down I knew those phrases were true.
As one of my best friends reminded me this trip (when I wished for a crystal ball so I’d know what was coming) all we ever have is one day at a time. (Thanks, Alyssa).
And lo and behold, today was a good day for mom. She wore lipstick; she sang hymns with the group. She sat in her wheelchair and gazed outside at the patio garden, and when asked what she was doing, she answered “just chillin’.” (Insert hysterical laughter here). We didn’t know she even knew that expression.
So, let’s take it from mom. Let’s chill. If she can do it, so can we — one day at a time.