In the summer of 2019, we kicked off our very first ABCs of Caregiving campaign on social media. It was so popular we brought it back for another season, and we love hearing the ways each letter and lesson resonate with you. Here, we’ve compiled the caregiving lessons from letters N through Z. Credit for these reflections goes to Eliza Brown and Latia Johnson (letter Q).
N is for Nuisance
Some of the things we have to do as caregivers are just a nuisance. Scheduling appointments. Picking up prescriptions. Making meals. Keeping the house clean. Paying bills. The list of nuisances seems to be ever-growing. Those everyday things that have to be done can sometimes feel like more of a task than the actual caregiving!
But if you think about it, even those small, in-between things are powerful in caring for someone. Stop doing just one nagging little task, and the fallout could be monumental.
O is for Open
A piece of advice I’d give to caregivers in all stages is this: be open to change. It’s incredibly easy to get stuck in routine, but be open to learning new approaches and fresh ideas.
Try a new lift that might be easier on your back; try a new snack to get your caree to eat! Try listening to a different kind of music, or put on a different channel on the TV once in a while; invite different friends over to brighten up your day; be open to new physical therapy exercises and new ideas from your caree’s doctor.
Be strong enough to advocate and put your foot down when you know something shouldn’t change, but also be humble enough to recognize that you don’t know everything all the time, and that someone else’s idea might just be the trick!! It’s all about balance. Be open to the discomfort of change.
P is for Persist
To persist is to continue going in spite of difficulty, opposition, or failure. Which sounds like the exact definition of being a caregiver.
To continue in spite of the sadness. In spite of physical pain. In spite of feeling as if you cannot go on. Caregivers persist.
Q is for Quiet
Quiet can be found in little pockets of the day. Washing dishes and just getting lost in the rhythm of washing and rinsing, letting the stillness overcome you. It can also be watching your loved one sleeping and seeing how rested and still, they are, knowing that all is well for another day.
Quiet doesn’t have to be sound; it can be just slowing down and taking in everything around you, the changing of the season, drinking your favorite cup of tea, listening to a favorite song, or reading a few chapters in a book.
Quiet is what you make of it. It’s learning to take a time out and do something for yourself — a form of self-care.
Quiet can be religious, like saying a prayer. Or a ritual; for example, setting out your clothes for the next day.
No one can tell you how to enjoy your quiet; it is what you make of it, what you feel helps you re-center and prepare for the next life happenings.
R is for Resist
To resist is to withstand the effect of something.
I was just telling a friend yesterday about my process of coming-to-terms with my grandmother’s dementia. And reflecting back on that experience, the word “resist” continues to be in the forefront of my mind.
To withstand the effect. To withstand the effect of my grandmother losing memories that I still hold close in my heart. To withstand the effect of my grandmother asking me who I am. To withstand the effect of my grandmother forgetting my grandfather.
To resist is to withstand, and I think years of seeing my grandfather live with dementia, to now caring for my grandmother in her years of dementia, I have learned to withstand. To resist.
Because, as I was telling my friend, my grandmother’s dementia doesn’t make me sad. That’s not an emotion I often associate with it.
It doesn’t bother me that she doesn’t know who I am, or that she doesn’t remember teaching me how to sew, or that she doesn’t remember how she’d make apple cake for our church events.
Because she still smiles when I walk into the room, and we still laugh until we’re doubled over, and the memories that we shared are still there for me, and I’m still able to be there for her.
We are still best friends, and memories — while still precious to me — are no longer as important as truly living the moments we share now, today.
This isn’t to say that dementia isn’t sad, or that if you’ve had an experience different than mine it’s any less valid. The reality of dementia is that everyone processes it differently, and every emotion you feel about it is worth expressing.
S is for Speak Up
A huge part of being a caregiver is being an advocate. Speaking up for the person for whom you care when they can’t. Going to bat for them, fighting for their rights and for their humanity and for their safety.
I’m not my grandmother’s primary caregiver, so advocating for her on a professional level isn’t something I’ve had to do very often. But it’s something I’ve seen my mom do for her a TON, and something that I’m learning how to do from observing.
Just from what I’ve seen, speaking up isn’t always what you WANT to do. It’s uncomfortable. It doesn’t always feel polite, even if you’re using the kindest language you can. It feels like overstepping boundaries and questioning where you “have no right” to question and nagging to get every piece of information you can get.
Advocating for somebody is not fun. That’s why it’s such an important part of caregiving — because others won’t be naturally inclined to do it. In the few times I’ve had to speak up for my grandmother, I’ve even had to give myself a bit of a pep talk beforehand. A little, “this isn’t about you right now, it’s about her.”
Speaking up takes practice, and it takes bravery, and it takes patience. Sometimes you’ll speak up for the wrong thing. It happens. Learn from it and move on, but don’t stop advocating for your caree. Because oftentimes you’re the only one that’s going to do it.
T is for Thinking
As I took on more caregiving duties for my grandmother, it astounded me how my brain was going at 100mph all. the. time. Caregiving brain is exhausting! And incredible!
Trying to be three steps ahead of my caree to think through and problem-solve for every possible scenario before they get to it; trying to identify any obstacles — physical, mental, emotional — and remove them; trying to keep them safe and secure and reassured and happy and entertained and the list goes on…
Caregivers can never turn their brains off. Even when I’m sleeping at my grandmother’s house, I am a caregiver in my sleep: aware of every noise in the house and outside, ready to jump out of bed if I hear my grandmother coughing or talking or even just stirring.
Thinking about different medication times and quantities, doctor appointments, visits from PT, OT, nurses, wound care, music therapy. The list goes on and on and on.
Caregiving is exhausting. Caregiving is emotional. Caregiving is a huge part of someone’s life. If you know a caregiver, give them some encouragement today. I guarantee you, they need it.
U is for Understand
A gift that is pretty universal throughout caregiving is that once you’re a caregiver, you understand other caregivers, even though their days and routines and circumstances are quite different than your own.
That’s the beauty of what brings us all together here! Michelle posts about her daughter, I post about my grandmother, and caregivers from all over have come together over these stories!
Caregivers supporting caregivers are SO important for this very reason. To feel understood is to feel seen; to feel seen is to feel significant; to feel significant is to be a confident, healthy caregiver.
V is for Variety
Whoever first said “variety is the spice of life” must have been a caregiver. Because variety is truly the secret ingredient to caregiving.
Mixing things up; making a mundane day feel more exciting just by doing something different. This is what makes the overwhelm of caregiving seem a bit lighter.
Have dessert and a movie instead of dinner. Do a dance while you’re helping them get their shoes on. Invite a friend over who has a friendly pet. Blow up a balloon and toss it around. Do the unexpected to keep your caree entertained, relaxed, happy, and engaged. Variety is the spice of caregiving.
W is for Why
This one word question is one I ask in my lowest times, on the most difficult days, the days when caregiving feels more like an intruder than a gift — why?
When caregiving interrupts the flow of our routine, when it makes my family argue with each other or sacrifice or miss out on something — why?
When my Dad started needing a caregiver while my grandmother still needs complete care as well — why?
A new diagnosis, a fall, a death in the family — all things that might ask us “why?”
X is for Xerox
Because I don’t know how many times a day I wish I could make a carbon copy of myself so I could get double the amount done.
Do you ever wish for help, but then realize explaining how to help is just more exhausting than doing it yourself? Caregivers need a xerox machine for ourselves!
But in all seriousness, caregiving is complicated, and there are millions of moving pieces that others are simply unaware of. If you’re a caregiver, somewhere off in your corner of the world wishing you could copy yourself just to get that one more task completed, know that you are not invisible. We see you, we’re in a similar boat, and we’re here if you need a pal.
Y is for You
Caregivers are often the invisible driving force. In the background, weary and stressed and often lonely. Today is a reminder that YOU are an integral part of your caree’s life. As @negspacelife puts it so beautifully: you are part of the story.
When it feels like you’re on your own, just remember you have a whole community of caregivers here to support you who have been in a similar position and know what it’s like.
Z is for Zest
To have a zest for life is to have a feeling enthusiasm for life itself. And what a better way to wrap up our ABCs of caregiving than with a reminder of why we are caregivers in the first place.
We not only have a zest for our own lives, but a zest for another’s life as well. We value life enough to make sure someone else’s is as good as it can be. And that’s a beautiful thing, if you ask me.