Routine is a blessing and a curse in our caregiving life. It keeps us sane and drives us crazy. It is our double-edged caregiving sword. Every day we live by it and some days we think we’ll die from it.
In Mom’s case, it goes something like this:
We speak before breakfast, usually around 7:30am, like clockwork.
She tells me that she slept ok but she’s tired.
And that she’s going to go to breakfast, after which she’ll do her swim class.
Then she’ll have lunch. Followed by the movie of the day. And dinner.
Sometimes there’s a visit from a friend or friends in there which is always a highlight.
When we speak in the evening, it’s the same conversation day after day.
“The day was good. It was busy. Lots to do. It’s a wonderful place.”
While in Steves, it’s more like this:
Steve comes out of his room anywhere from 9 to 10:30am.
He greets us with the same warm but unsure smile.
After breakfast Steve plays a game or goes out for a ride or watches the birds.
On good days, he’ll do some walking and others he’ll do some riding in his wheelchair.
Then a rest, followed by lunch. Maybe another game and then another rest.
Occasionally there’s a visit from friends and this always fills us with gratitude.
All of a sudden it’s dinner time. Sometimes he makes it down for dinner, other times he doesn’t. The house is loud at dinner time with 3 kids aged 12 and under.
Before we know it, it’s time for bed. Again.
In both cases, we rinse and repeat. Day after day and week after week, without blinking an eye. Because it’s necessary. Mom’s Alzheimer’s and Steve’s Lewy Body Dementia make it so.
Almost pointless (but not quite)
My writing (er…venting) here is almost pointless. To live their best lives in spite of their challenges, Mom and Steve need routine. And we need it too, so we can support them. And most of the time, the routine feels like a life preserver tossed to us by a passing ship as we tread water in the middle of the frigid North Atlantic, wondering how long we can hold on. It’s a blessing.
This writing is almost pointless instead of completely pointless because writing happens to be a key self-care tactic for us. So here I am to tell you that the routine, the thing that saves us from drowning more often than not, sometimes makes us wish we could stick hot pokers in our eyes. On some days regardless of how necessary it is, the routine feels like an impenetrable barrier. A wall that freezes us in an eternal state of monotony and keeps us away from the outside world and all of its wonders and joys and simple pleasures. On those days, routine is anything but a blessing. On those days, it feels like a curse.
It’s quite the juxtaposition. Our inner battle between the blessing and curse had been simmering in my subconscious (for sometime, I think) until recently. It came up in a conversation with a friend and has been top of mind since. Fast forward to earlier today, when this question was put on the table by Michelle Seitzer (Founder of the fantastic site Caregiving Advice) during #carechat on Twitter:
What has been the most shocking/surprising thing about caregiving so far?
The answer, for me, came faster than instantly. My fingers had typed the sentence and hit send tweet before I even consciously thought about it. Mom taught me a long time ago to think before I speak but this was a reflex from my caregiving soul.
The blessing and the curse of routine/monotony.
How can something so vital be so insufferable at times? I’ve spent a lot of time thinking about this question and have a developing opinion: it’s the wrong question.
It doesn’t matter how it came to be. How or why routine is simultaneously a blessing and a curse really makes no difference. What really matters is how we react to it. What we do about it. That’s the important thing.
Thanks to more than a little help from our friends, here’s what we’re doing about it.
We can’t work on it if we deny it or don’t see it. This is about as cut and dry as it gets. But it’s integral. Without recognizing and acknowledging, we can’t do anything about the problem. Like just about anything else in life, the path to resolution begins with acknowledgement.
Recommit to being ok with the present
Live in the present. Seek joy in the little things and moments. I’ve long known the importance of these things. Lindsay and I both have. But sometimes the routine sucks you in and before you know it, it’s difficult to see the caregiving forest through the trees. Enjoy the little moments and document them. You’re going to miss them when they’re gone and in the meantime they’ll insulate you from the monotony of routine.
We’re going to set goals for to be spontaneous. Sounds hokey? It is. Completely. But I think it’ll help for a couple of reasons.
- It’ll be in bite-sized chunks. Once a week, do something unplanned. Nothing crazy, I’m not talking about skipping down to Mexico or hopping a flight to Vegas. This is about doing something easy, unplanned, and for me/us. It’ll force us to take advantage of whatever small slices of time we can find. Even better, it might just force us to make the time.
- It’ll prove to us that whatever guilt is for being spontaneous is unearned. This will be needed reinforcement that we shouldn’t feel guilty for doing things for us. There will be no room at the inn for unearned guilt. Hooray!!
Get in their shoes
When I feel the monotony beginning to weigh me down, we’ll commit to reminding ourselves (aloud) that if we’re weighed down by it, how must Mom or Steve feel about it? Enough said. Our challenge pales in comparison to theirs. We need to follow their lead. And fight.
Will it always be a blessing and a curse?
Will these actions make routine any less of a concurrent blessing and curse?
Too soon to tell. But I know working on it will make me feel more sane than not. Maybe that’s all that matters because remembering how comforting routine is to Mom and Steve (although relentless to us) helps us along.
We watch Steve’s boring, quiet days and it kills us. But then we remember it’s comforting, comfortable to him to stay home and sit outside in quiet. We think it is. His smiles tell us so, hidden amongst the day. But it will be harder when he can’t communicate with those smiles. Then we’ll just be left to question.
A blessing and a curse. Can you relate?
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