“Where’s Rod?”

These two simple words had more impact on me that anything my mother has said to me in my entire life.  Mom was calling for me while I worked at my computer, I came to see what she needed.  She looked directly at me and asked, “Where’s Rod?”  I responded, “I’m Rod, mom.” She put her head in her hands and said, “Oh, I’m so confused…”

This points out to me the reality of what’s to come.  It’s not a great thing to think about.  I’ve heard stories from others talking about loved ones no longer recognizing them or thinking they were someone else – I guess I just didn’t realize that mom would get to that point with me.  Now, it’s been several days, and it hasn’t happened again; but I do realize this was a brief glimpse into our probable future.

How it Hit Me

Fear.  Shock.  Mostly fear, I think.  Because this dynamic could change everything.  Right now, I’m able to care for mother at home and I’d like to keep it that way.  It’s my hope that she’ll be able to spend her last day in her home of 35 years.  But what has been dominating my thoughts are the questions of what conditions could drive me to decide I can no longer properly care for her here.  Up until now, our care issues have been fairly straightforward.

Continence Issues

So far, we have had the continence issue managed fairly well.  But she hates her incontinence undergarments; so, if she gets up in the night, without fail she’ll take them off.  If I see her heading to the bathroom during the day and I can’t get up to assist because I’m in a meeting, I’ll have to get her in a fresh pair after my meeting.  I do have an incontinence pad on her TV chair. 

With her ileostomy, fecal incontinence isn’t a concern.  However, earlier this week she also removed her ileostomy bag in the night.  Apparently, it happened early in the morning because there was almost no excretion when I was getting her out of bed.  But this is a behavior that is also a warning sign of coming nocturnal behavior concerns. 

Behavioral Issues

With the lockdowns we haven’t had family gatherings yet, we’re talking about trying to have gatherings out in the yard on warm days with iced tea instead of coffee.  But my mother’s days aren’t currently filled with much activity.  We can’t go for “walks” – it’s been too cold to take her for wheelchair strolls, best we have is the occasional drive down by the lake.  Although, mom’s favorite store (St. Vincent de Paul’s) has opened again, so I’ll be taking here there again when she’s up to it.

Currently, for the most part, mom watches TV, eats, drinks, goes to the bathroom, and sleeps.  This has been her primary behavior for at least the last 5 years, the primary difference being no more shopping at the secondhand store or family gatherings – and the fact that she’s almost unable to understand how to play her tablet games anymore.  But the dementia has changed something, and this routine doesn’t work for her quite so well these days.  I’ll hear her calling and when I go to check on her, she’ll tell me, “I need to move something, but I don’t know what.”  If I ask her what she wants moved, she’ll tell me, “I don’t know, I just need to move something.”

Sometimes while I’m working, I’ll see her pushing her walker through the house and relocating one of the many silk flower arrangements in the living room.  Sometimes I see her doing things in the kitchen, and yes, she’s moving things.  Any unwashed flatware from the sink or counter will be moved into the drawer.  Things she doesn’t think belong on the counter will be moved to a drawer or cabinet.  It’s often an adventure when I have to figure out where she’s put something that I need…

Sometimes she’ll pick up the wireless phone, point it at the TV and start pressing buttons.  So far, she hasn’t accidentally dialed an international number that I’ve seen appear on the bill.

So, behavioral issues are very minimal at this point.

Nocturnal Behaviors

Here’s an area we’re just entering, and I’m concerned that I may be forced to take steps here that she’s really going to hate.

Her leaving the house isn’t a concern, my mother isn’t ambulatory enough to even make her way across the porch unassisted, much less down the stairs or across the yard.

I keep incontinence pads on the bed to protect the mattress, so right now there’s no great risk associated with her removing her incontinence undergarments at night.  It just means changing the bedding more often and doing more laundry. 

But if removing her ileostomy bag in the night becomes a common behavior, the only option I’ve identified so far is dressing her in anti-strip clothing at night.  But this will mean she can’t use the toilet in the night, so that necessitates an adult diaper every night.  It’s hard to write that because it’s hard to even think of things getting to this point.  I can’t imagine how she’ll fight that when it becomes necessary.

Her Cognitive Decline

I’ve never personally known anyone with dementia, so I have zero experience here.  I didn’t have a clue that her decline could be so rapid, and that I’d see such marked changes from one week to the next.  Each week, things grow more difficult for her, more confusing, and unfortunately, more frightening.  She still has lucid moments, and those are when she expresses her fear of what’s happening to her.

Seeing her trying to use the phone as the TV remote is just one of the behaviors that she’s exhibiting that helps me understand just how confusing everything is to her right now.  But as I wrote above, her not recognizing me was one of the most sobering moments yet. 

In Closing

First, dear reader, in all of my posts, I try to find something positive to hold on to, something to look out to the horizon for.  My apologies for not finding one here.  Life is changing so fast for my mother in ways that are changing my life at the same speeds.  It’s more than a little disconcerting; I’m just trying to adapt, hold on, and grow into the best caregiver I can be.

Second, if you have any experience here or wisdom you can share with me, please do so by commenting on this post.  I could really use some guidance from the voice of experience.  Thank you.