An Unpredictable Routine


January 2nd is my favorite day of the year. After months of holiday hysteria and hi jinks, I get to resume the daily routine that keeps me grounded and sane… the predictable pattern in a string of days where I know exactly what’s expected of me and can perform my duties handily. I can once again embrace my inner boring.

I view this routine as a reasonable requisite for my job as caregiver to my 92 year old mother. To date, it’s been a relatively easy gig, and my duties on Mom’s behalf have been necessary but not excessive, centered mostly around dinner and doctors. For the most part, Mom’s had all her marbles and has been pretty adept at playing with them, so long as there are no major disturbances in her force field. If she could wake up every morning, have her muffin and coffee, read her paper, and remain within the walls of her 980 square foot apartment, her force would be just fine forever.

But, each time Mom returns home from “rehab” (code for nursing home, where she’s been 3 times in six months), her cognitive chaos becomes more acute. Her pace (in doing everything) slows another notch. Her well-worn stories have holes in the who-what-when-and-wheres, and she surprises even herself with how she fills them. All urgency in her days is gone… no rush for the paper/coffee/muffin… no remembering to tell me that she’s in pain… no motherly need to correct or remind me to close the door… no defining defiance from her lips… no rush for the bathroom… 

With each act of omission, my own confusion and concern escalate; it’s as if our mother/daughter caregiver covenant has been altered and the new guidelines have yet to hit my in-box. My nights and head are filled with questions… Did she take her meds this morn? Can I trust if she says she did? Should I install a video camera? Would that humiliate her? Will she be able to make her own lunch? Can she make it to the toilet? Exactly what are her capabilities? And that most important question - how long can I do this before I can’t do this?

Our routine is becoming anything but, and I’m suspended in a black hole of hurry-up-and-wait… I’m not sure what’s safe now, and what’s not… I’m engaged in a persistent battle of empowerment and imprisonment, constantly gauging, assessing, and questioning to ensure I don’t over or under estimate her abilities. Where last week she could readily dress herself and make her own lunch, this morning she seems confused about the mechanics of her pants. Or maybe she’s just physically unable to step into them? Either way, I can tell she needs a little help. The lunch meat is still sitting unopened on the refrigerator shelf and there’s no sign that she’s eaten today. But she said she did… Did she?

Best case scenario is that I’m worrying for no reason and Mom is just experiencing the common side effects of repeated bladder infections. Caregiver sites and related Facebook pages I follow, indicate that such cognitive chaos is common among seniors with UTIs. Throw in the unsettling change of scenery associated with her multiple ER, hospital, and nursing home stints, plus the hoopla of the recently consummated holiday trifecta, and maybe her puzzlement makes perfect sense… Maybe, when all this settles down, Mom can put all her marbles back into her bag.

But what if it’s not the best case scenario... What if it’s the beginning of the worst case scenario - dementia or Alzheimer’s? I am completely unprepared to be that kind of caregiver. I read about adult children whose parents are in the throes of these dreaded diseases and they talk about “going with the flow” and letting their parent live in whatever moment they’re experiencing. But I’m not sure I’ll be so adaptable... I’ll want to correct Mom when she errs on reality and set her straight – a strategy not strongly recommended by those in-the-know.

Clearly a new normal is emerging for me and Mom which I haven’t yet wrapped my head around. But, in recent years, I’ve learned that I only have to do it one day at a time… I have to keep it in the day… focus on the present… do what’s in front of me… put one foot in front of the other… I have to ask for help when I need it… None of these being organic, go-to strategies for this caregiver.

January 2nd is also the harbinger of a shiny New Year… a time to reevaluate, rethink, review and revise. This year, my reigning resolution will be to reframe my reality with an eye toward resilience. This year, the regular rebooting of my routine may just have to wait.

Emily Gaffney4 Comments