Caregiving with a Chronic Illness: Don't let their bad days become yours

My 76-year old mom, who lives with us, and for whom I am a caregiver, is just like the rest of us. She has good days and bad days, and due to a stroke about 6 years ago that left her with mobility issues and cognitive impairment, her bad days can be quite challenging. 

There are weeks when her bad days seem to persist, and I just try to offer support where I can, in order to ease her difficulty. 

I also try not to take them personally. 

I try not to get frustrated when she says she's incapable of doing something I know she can do.

I try not to argue when she insinuates that what I'm asking her to work on is pointless, or even absurd. 

I try not to lose my patience when she is more indifferent or despondent than usual.

Not only do I distance myself in these ways, I try not to let her incapabilities, insinuations, or indifferences become my own.    

When she's having a bad day, it's actually not about me. It's not something I've done, or not done, for that matter. It's just her, experiencing a downturn. Her bad day is not my bad day.  Her struggles are not mine. Her ups and downs are not mine. 

I can take all that on, sure. And for an instant, I may feel like I'm shouldering some of her burden. But in reality, I'm just weakening her support staff. I'm the rock on whom she can rely. If I let her bad days make an impression on me, I'm taking away from the strength and resilience she's counting on me to provide - especially on those days. 

I came to this same realization when I was the primary caregiver for my dad during his 9 month journey withbrain cancer. He experienced many ups and downs - physically, mentally, and spiritually - through surgery, chemo, radiation, and therapy, At the start, I had assumed staying positive was going to be paramount for his well being, especially on bad days. And there was value in pointing out silver linings, of course. But equally as important was that I remained centered and consistent. For that made it easiest for him to navigate his way out of the darkness or difficulty, and back into the light. 

I’m no stranger to ups and downs due to life with illness, myself. A few years ago, I wrote a post about how volatile my days with lupus could be. Some days, I would feel fabulous about life with a chronic illness. Others, not so much. Here's part of the post, entitled "The 'I' on my Chest": 

Some days, I feel indestructible. It's as though my life is completely unaffected by lupus. On those days, I have energy to spare. I wake up rested, and go to bed feeling equally as good. I take a nap, of course, but there's no debilitating fatigue clawing at me for an hour beforehand. All day long, I feel young, active, and alive. When I take my medication, I don't even think twice. So what if a few pills and some lifestyle changes are helping to make me feel so good?  Feeling good means feeling good. And on days like that, I feel like living with lupus is a cinch.

But then, there are other days. Days when I feel anything but indestructible. On those days, the figurative "I" on my chest stands for things like incapable or incapacitated. As I'm going about my day, unable to "do" or accomplish, I feel inferior and insecure.  When I venture to the doctor, I feel more intimidated than anything, and my disease is best described as inconsistent. On days like that, I may feel immobile and incoherent, but I struggle to verbalize either, much less any of the other emotions mentioned above.

In that post, I go on to talk about how important it is to take time to evaluate how we feel from one day to the next, and remind ourselves that we won't feel those things forever, no matter how permanent they may feel at present.

This is why I try to find patience on my mom’s bad days. I know how one day to the next can seem like a lifetime apart. I also know that when her bad days surface, she is trying, probably harder than on any other.

Whatever mental or physical struggles she’s experiencing, they are real and valid, whether I can see them or not.

And thus, I just try to remain unflappable, until her storm passes. I let my own illness serve as a reminder of how quickly her outlook may change, and when it does, I’ll be there to welcome her with open arms. 

Click here to read the entire "The 'I' on my Chest" post. 


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