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A Day in the Life of a Caregiver

Mom in her mid-thirties.

My mom, now, is most likely experiencing the middle stages of vascular dementia and Alzheimer’s. It’s admittedly tricky to tell since dementia can manifest differently for each person, but my guess is based on learning from a caregiver workshop I’d taken several months ago.

Since her diagnosis about two years ago, I’ve been trying to learn what I can about her condition and ways to help alleviate stress, for her and for our family as we move forward.

Today, for instance, I woke up earlier than usual because the to-do list began piling up in my mind and I was also dreading the thought of dealing with morning traffic as I drove about an hour to my parents’ place.

My mom was slated to have a colonoscopy this morning (which we had to postpone because I’d failed to notice that she should’ve stopped taking aspirin five days prior). Perhaps considered a routine, preventative procedure for most people, but for mom, I was concerned because she especially loves food and her mood changes can be, as with many folks with forms of dementia, swift and unpredictable (notice my expectation).

She’s only about 4' 10", but she has often out-eaten others in our family. We’re not sure where all the calories go, but she enjoys food, especially baked goods. So the thought of having to restrict her diet for two days leading up to the colonoscopy was not ideal and I was bracing myself for how she might handle it.

When I’m a few minutes away from reaching their place, my cell phone rings and it’s mom. She wants to know if she can have milk or not. I tell her I’m not sure, but that I’m about ten minutes away and that I’ll find out when I get there. She sighs dramatically and mentions how achy she’s feeling this morning.

One thing I’m learning (and have heard from other family caregivers too) is that if there’s any person who will spark negative thoughts and crankiness in my mom, it’ll be me. A therapist (who also was a caregiver for both of her parents when they had Alzheimer’s) warned me about this possibility — that mom’s proclivity for negativity (which, to be fair, was a part of personality already) could be exacerbated around me or others close to her.

Although it’s perhaps easy to consider someone with dementia and their experience being far different from your own as a caregiver, it’s sobering to learn that, according to the Alzheimer’s Association, the number of people with Alzheimer’s may triple by 2050 — from 5 million or almost 14 million. That said, it’s also promising to see more and more attention given to this public health crisis, which will hopefully lead to a cure and, in the meantime, spur more innovative approaches to caregiving and how to better support people living with dementia.

As a caregiver, I often struggle with balance. I also struggle with feeling okay to publicly acknowledge and share that I am a caregiver (this is especially challenging to do within a culture that doesn’t necessarily recognize caregiving as valid or important labor).

Depending on the day, my mom is hyper grateful, almost ecstatic, and she explains how we all should feel more gratitude in our lives. Other days, she believes our family doesn’t love her, that we’re stealing from her, abuse her, and she openly shares this with others (friends, strangers, her doctors, etc.) as well.

What my mom — and her condition — are both teaching me is to let go. To let go of my expectations. I still have them, of course. But I try to let go, to stay open, to walk in the door of my parents’ place with more openness (and less bracing of myself about what may/may not happen). When my mom is cranky or complaining about how I don’t do enough, or how my dad or sister are terrible to her (which they aren’t), I try to remember that it’s my expectations that actually cause more grief and stress (than the actual behaviors my mom necessarily manifests on a given day).

Even on the hardest days, I must remember how my mom’s behavior is invariably compelled by desires that are familiar and universal to all of us (with or without dementia) — we want love, reassurance, someone to simply say, we are here.


Today’s goals:

— Refill my mom’s medication dispenser (and make sure her aspirin stops in time before her colonoscopy)

— Go through cabinets and fridge and get rid of any questionable things (mom has a tendency to horde), such as used to-go containers, half-chewed gum, used tissues, etc.

— Pick up dad’s refill of Ranexa

— Manage parents’ monthly bill payments

— Look up how to apply for SSI for them