On the first day of summer we introduced our new campaign, the ABCs of Caregiving. Each week, our team has shared our thoughts, perspectives, and insights on a number of caregiver-related words representing each letter of the alphabet. Now we’ve compiled the second half of our series for you in case you missed any…in case you have a friend or family member you’d like to share these with…in case you would like to review and reflect on them all. And see our previous post highlighting the first half of the alphabet if you missed any earlier letters!
As caregivers, we need to learn that it’s okay and necessary to say “no” to some things. Don’t overload your schedule by committing yourself to things that you don’t have the time or energy to do. Sometimes, saying “no” is the healthiest, most rewarding form of self care.
On the contrary, make sure you say “yes” to things as well! It can become all too easy to allow your life to be consumed by caregiving, and to let your social life fall to the wayside. Don’t let that happen! You deserve to have a life separate from caregiving. When a friend asks you to grab a cup of coffee, and you’re able to get away for an hour or two, say “yes!” Know that you have the freedom to say “no,” and the privilege to say “yes.”
Organization is key as a caregiver. Each person’s organizational process is different and unique. What may be seen as orderly to one person could be a puzzling mess to another. Whatever your style is, embrace it and stick with it. Creating order and simple processes throughout your day can have a huge impact on your efficiency and the amount of time and effort you spend on your tasks. Quick tip: Use a calendar with extra side space. Only use this calendar for your loved one and write on the extra side space for lists/thoughts/reminders throughout your day.
Caregiving demands selflessness and sacrifice, compromise and compassion, grit and grace. It stretches you in ways you never imagined possible. It brings all your humanness — the good, the bad, the ugly — to the surface. And if you’re willing to learn and grow through it, it strengthens you in areas of weakness you didn’t know existed.
Your personality is a vital part of the way you give care — and the way it is received. If your personality clashes with that of the person in your care, you’ll need to do some serious boundary setting and conflict resolution early on — and continuously throughout — your caregiving journey. Some people have personalities well-suited to caregiving; others find it more challenging to give and compromise. Some people have personalities well-suited to receiving care; others resist it with every fiber of their being. Wherever you find yourself on the spectrum, keep in mind that you are an individual with a unique personality comprised of flaws, quirks, values, dreams, and limits … and so is the niece, stepfather, friend, great aunt, or husband in your care.
Caregiving challenges your personality and personhood on a daily basis. But that doesn’t mean you have to lose yourself in the process. In fact, if you allow it to, caregiving polishes the rough edges, chips away the blockages, shines light in the dark places, and may just bring out the very best in you. Make sure you take a look at our blog post and YouTube video on personality types and caregiving!
Something that I’ve found to be both fun and meaningful through my caregiving journey is to write down my grandmother’s words. If she says something funny and completely off-the-wall, mentions a memory that I’ve never heard her talk about before, or pulls me close and utters some wise and deeply thoughtful advice or speculation, I write it down in her exact language. This is a way of freezing time: something we thought couldn’t be done!
If you preserve your loved one’s words in the exact language in which they were spoken, you’ll likely find that revisiting those quotes will bring you right back to the moment they were formed. You’ll find yourself laughing at the funny moments, and pondering the insightful moments as if you were there once again. It’s a bit of magic we all have within ourselves: the ability to preserve a moment almost perfectly using nothing more than the written word. And as time inevitably progresses onward, these quotes will become treasures.
It is sometimes hard to know what actions to take as a caregiver. As my grandmother’s mind gets less sharp, I have been questioning: do I obey every request of hers, even when she seems to be letting fear control her decisions? Or do I do what she used to love in hopes that it will make her feel happy? We can all benefit from being pushed outside our comfort zones, of course, but it’s difficult to know when it’s helpful and when it’s disrespectful to be the one doing the pushing. To balance this, I try to respond to how my grandmother is reacting in the moment, even as I’m doing said “pushing.”
I think it can be healthy to encourage “new” experiences, but make sure you check in often to make sure you’re doing it for your loved one’s benefit, and that you’re being respectful of their reactions and responding to their cues of enjoyment or of discomfort. For example, don’t just go outside because it will make YOU happy, do it if you feel that’s what will also make your loved one happy. (Not that their happiness is more important than yours, but it should be considered and respected.)
Something that I think we forget to do sometimes is to just sit and be with the person for whom you care. Every person has something to offer, so sit and discover what there is to be discovered that day. I find that when, just for a few minutes, I stop worrying about the laundry and the dishes and the ever-growing to-do list and simply sit and talk with my grandmother, my day feels so much more valuable. Caregiving is not about checking items off a to-do list. If it were, it wouldn’t be called “caregiving.” To give care, one must truly care. It is easy to lose sight of that. So start by sitting. Sitting with a person automatically makes us care about them a little bit more.
As a caregiver, tangible actions will help you as you move forward during this journey. We can often get stuck in the day to day duties and expectations, and we may forget that each day is a gift with our loved one. Each choice we make has an impact in tangible ways. Take simple actions such as reading stories aloud, singing favorite songs, or glancing through family photos together. This will serve your loved one as they engage in storytelling, listening to music, or reliving fond memories. If you’re the primary caregiver and providing tangible hands-on tasks (like bathing, feeding, and incontinence care) it may be difficult to find time to consistently engage your loved one in other ways — and that’s okay! Enlist trusted friends and family as support and guide them with tangible ways to make a difference in your loved ones care. Check out our blog post Eliza’s Top 10 Caregiver Activity Ideas for some tangible ways to pass the time by keeping your loved one engaged!
No two caregivers are alike. No two caregiving relationships are alike either, because the individuals receiving care are unique too.
We mostly think of being unique as a positive thing…and it usually is. But when your unique perspectives, personality, and preferences collide with those of the person in your care, you often get conflict. Confusion. Chaos. Also, comparing yourself with other caregivers — or measuring your own caregiving relationship against another’s — hurts instead of helps.
You must recognize your own identity as a caregiver and not become so enmeshed with the person in your care that you don’t have your own thoughts, feelings, or interests — because that level of co-dependency typically leads to resentment and relational troubles.
Today, find ways to celebrate the unique relationship you have with the person in your care. Don’t compare: Celebrate his/her uniqueness, and yours.
In the age of smart phones and social media, capturing videos is often a very present part of our everyday lives (or maybe it’s something we avoid.) But capturing videos at high points of our caregiving journeys, no matter what else is going on, will be a forever reminder of all the good amongst the struggles. So next time you’re with your loved one having a picnic, playing a board game, even going for a stretch-those-legs walk around the kitchen or washing the dishes, take your phone out and capture a memory that you’ll treasure for years to come. Recording voices as they tell stories/memories or family history, as well as recording laughter is something, I’ve found, to be priceless.
A huge part of caregiving is waiting: waiting to hear back from doctors, waiting for a bad mood to pass, waiting for a new season to bring a change in scenery, waiting for the wash cycle to complete, waiting for the coffee to brew! Especially if your caregiving experience is with senior care, or if you are a parent caregiver alone and exhausted with your child all day, the days move slowly.
Mealtime is slow, walking down the hall is slow, communicating even just a word can feel like an eternity. Anything that involves a lot of waiting also requires a lot of patience, and caregiving is no exception. Patience is the golden virtue of caregiving, so to all the patient caregivers waiting to be seen: you are a gem, you are changing someone’s life, and you are seen. Thank you for being willing to wait.
To-do lists sometimes get a bad rap, but honestly, where would we be without them? While it is good to have some freedom from the never-ending list, it is also good to be able to visibly “X” some things off and be done with them, especially on the ever-growing list of caregiver responsibilities. I suggest making a list of the big things you need to get done in a week’s time: “call Mom’s doctor, pick up prescriptions, grocery shop, Mom’s shower day, pay Mom’s bills.” That gives some flexibility, and takes the pressure off to cram so much into a day that you forget to actually live.
Write out your list on paper, and glance at it in the morning to figure out one thing you can complete with the time, energy, and emotional capacity you have that day. And when you complete that task, take a marker and “X” it off your list! Doing this will give you a much deserved sense of accomplishment. It is easy to get into a funk of feeling like you’re not accomplishing anything most days, especially if your routine is nearly identical from day to day. Being able to physically cross things off with a thick, permanent marker will remind you that you are, in fact, accomplishing a great deal of items on your list. Try not to let the “X” rule your life, but instead let it fuel your drive to keep going!
Younger caregivers are becoming more prevalent nowadays. If you are a youth caregiver, you may need to challenge the societal norms by taking baby steps or giant leaps outside of your comfort zone. Give yourself the ability to be flexible with your circumstances, with an understanding that you will figure it out one day at a time. Be assertive in your role. Build your support system. Give yourself grace. Although you may feel alone as a younger caregiver, you are not. (Believe me.) Foster the connections you have to build you up as you do the best you can to care for your loved one.
Caregiving is not always a glamorous, passionate task. It requires long nights and early mornings. It requires the mundane. But how do we maintain our passion, our drive? I believe we allow ourselves to look at the full scope of things, the big picture. Perhaps our kindness will create a domino effect. Perhaps our long nights will bring to ourselves an unexplainable calm when it’s all said and done. I believe we maintain our passion by finding what we love in the mundane. Writing our true feelings. Capturing moments of gratitude. Or even allowing others to care for us when we need it most. These things will refuel us. What we love will bring us back the zest of life. Caregiving is zeal whispering, and it is a beautiful, loving secret.
Search for the hashtag #ABCsofCaregiving on Facebook, Instagram, and Twitter to see all the ABC images together, and sign up for our newsletter to get access to the ABCs e-book, soon to be available for download!