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. And now, we’ve compiled the first 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.
Caregiving isn’t limited by age. Every day, around the world, people of all ages rely on a caregiver for support, and those caregivers range in age from 8 to 108. Siblings. Spouses. Grandchildren. Grandparents. Neighbors. Nephews. Parents. Partners. Sons and daughters. Friends and relatives. When you think of caregivers, remember them all. And if you’re one of them, know that you’re not alone!
When we each start our caregiving journey, we are beginners. We have a starting point, where we only know a little bit and with every new challenge and obstacle that comes with being a caregiver, we are beginners again. Even when we know a lot, we are always beginners at some point.
Communication is everything in most situations, and no less in caregiving. In fact, if there’s a communication barrier (like hearing loss, slurred speech, or memory impairment), communication is even more vital. First, since the help you are offering is likely rather private and personal, they need to be aware of what you are doing. Second, if they are easily confused, forget who you are or where they are, or even forget that they are no longer able to complete certain tasks, open, respectful, and clear communication — making sure they can hear you and can see your face — helps them feel at ease.
The more a space is intentionally decorated, the more content and even happy people are in it. Caregivers should keep this in mind, because the space of the person for whom they care is often limited. For example, they may sit in the living room all day, visit the bathroom when somebody is available to take them, and sleep in a bedroom. So those three rooms should bring joy!
If your loved one is for any reason unable to stand up straight enough to see eye-level decorations, lower them to a new “eye-level!” Change the tablecloth more often, and use bright, bold colors and prints. Hang pictures low on the walls. Put out intricate china or treasured trinkets on end tables; place vases of flowers to be visible from where they sit. Think about what is important to the person for whom you care, and make that apparent to their senses.
Empathy is not always an easy trait to develop, especially while caregiving. The mundane tasks of caregiving, day in and day out, leave caregivers with little emotional capacity from which to draw on. And as they often feel drained, impatient and frustrated, caregivers may wonder, “How can I empathize when all of my being is at its wit’s end?” But when a caregiver brings herself to a place of peace, tranquility and gratitude, that’s where she’s able to see another individual’s value and worth. And that perspective — even when she’s at her lowest and most overwhelmed — can never be taken away.
We all can learn to be empathetic. Awareness of our own feelings, thoughts, and triggers allow us to embrace empathy so we can provide the best possible care for our loved ones.
Whether you’re the parent of a medically fragile child, the daughter of a parent struggling with mental illness, or the partner of someone with a degenerative disorder, fatigue is inevitable. Caregivers of all ages — caring for people of all ages and in all stages of life — often experience fatigue on more than a physical level. They may be weary emotionally. They may be depleted mentally. They may be burdened spiritually. Caring for someone else weighs heavily on the body, soul, and mind — especially if you’re not paying attention to, or meeting, your own physical, emotional, mental and spiritual needs.
On a regular basis, caregivers must push through tasks they never dreamed of doing: changing a grandparent’s incontinence garment. Comforting a child while he’s receiving chemotherapy treatments. Helping a spouse bathe after a stroke leaves her partially paralyzed.
Caregivers develop a tremendous amount of grit, because whatever their caregiving situation may be, there are minutes, hours, and days when they have to push — and push hard — to get through. There are appointments with health care providers, phone calls with teachers and therapists, care assessments with discharge planners, and more: and these interactions often require fierce advocacy, dogged persistence, and a bold determination to achieve a positive outcome. And all the while, caregivers are managing the daily grind of their own lives.
Grit is leaning in, hanging on, and pushing forward when the going is hard. Grit is demanding the best for our care receivers. Grit is caregiving on the front lines.
Laughter is truly the best, most universal, cheapest, fastest-working medicine that I have encountered. Caregiving can be full of daunting task after daunting task: changing, bathing, ostomy bags, wounds, sun-downing, emotional lashing-out, etc. It can easily become burdensome to have all of these as your daily responsibilities, but a sense of humor can change some (not all) situations around entirely!
Making light of a situation in which there is embarrassment or frustration certainly takes self-control and positive thinking, but that bit of extra effort can make an incredibly difficult situation into something fun, possibly even enjoyable, and perhaps even a treasured memory. An added bonus is that if you’re caring for a member of your family, chances are you already have a shared sense of humor in some way! A caregiver with a sense of humor is a happy, appreciated caregiver.
Something that I often forget to do is invite others to be a part of my caregiving experience. Especially as a millennial caregiver, I assume that people my age don’t necessarily want to hang out with my grandmother in their spare time. But whenever I DO invite friends to come be a part of our day, we end up having a truly wonderful time.
The generational gap is a beautiful, complex, rich part of life that deserves to be explored. Instead of going out every time you want to catch up with a friend or family member, try inviting them to your house or your place of caregiving every so often. Caregiving can be lonely, and others will often feel timid about inviting themselves into your life in that way. So take the initiative and invite others into your caregiving life!
There will always be moments of hardship in every caregiving journey, but those difficulties make the joyous times stand out even more. When something truly good happens, no matter how large or small, we should celebrate it for what it is: a joyous moment in the midst of a seemingly relentless storm. The joy will keep you going, even when the storm gets rough. Pay attention to these moments, and share them with those around you, or even share them with us and we will do a virtual happy dance with you!
Caregivers have to work with a lot of people. Doctors, nurses, specialists, social workers. Teachers, tutors, therapists. Insurance companies, pharmacists, and medical supply providers. The list goes on.
Because of these multiple interfaces, a huge part of a caregiver’s job is very often behind the scenes: emailing, coordinating, calling, following up, scheduling, bill paying, ordering, cancelling, rescheduling. All of this work requires strong organization and time management skills. But it also requires interaction with people who may not always be understanding, compassionate, or able to help.
So when you find a keeper, hold on to them! Tell them how much you appreciate the extra mile they walk for you and the person in your care. Send them thank you notes. When you see them in person, bring them flowers, coffee, or chocolates. Keep kind people in your corner, caregivers. You can never have too many keepers!
One battle many caregivers face on a daily basis is repetition. From children with special needs, to parents or grandparents with short-term memory loss, often those for whom we care repeat their observations, needs, concerns, and questions over and over again. Because of this, we can easily slip into automatic responses; after all, it can be mind-numbing to respond sincerely to the same concern hundreds of times a day. While this practice of automatically responding can preserve our sanity, it can also quickly lead us to overlook legitimate needs or become apathetic.
It is important for caregivers to continue to listen, even if we are still guarding ourselves against becoming emotionally exhausted. Hone in on his or her base emotion: are they afraid? sad? confused? curious? anxious? Try to at the very least address this foundation emotion physically or verbally, even if you cannot answer thoroughly and specifically every time. Listen closely to what their main request is, and you may avoid going on auto-pilot with your responses.
When you are going through a difficult time, your mind is constantly burdened. The weight of your circumstances will affect your ability to care for yourself, let alone anybody else. Obviously, a vacation to somewhere far, far away would work wonders, but this sort of escape is rarely an option in the midst of a trial. So instead of a week-long vacation, treat yourself to a minute-long vacation!
When you are feeling overwhelmed, worn-down, mentally or physically exhausted, take one minute and try your hardest to clear your mind of every single heavy thought. Remove yourself from the physical place in which you were feeling overwhelmed (hospital room, dinner table, waiting room, etc.) and do something that allows you to fully focus on something different. Walk to the vending machine or cafeteria to get a snack or coffee. Step outside, call a friend and don’t talk about anything important. Don’t let difficult times get the upper hand on your health. You are in control. For just sixty seconds, escape your situation and immerse yourself in something refreshing.
Want to follow this campaign on social media? Search for the hashtag #ABCsofCaregiving on Facebook, Instagram, and Twitter.