Maybe your father suffered a stroke and you go to sit with him for two hours every morning and drive him to physical therapy every Thursday. Perhaps your auntie is having some problems remembering to take her medicine so you stop by every day on your way home from work. Or maybe you left your job and are going to move in with your grandmother who recently broke her hip after falling in the shower.
Do any of those scenarios sound familiar? Then you are indeed a caregiver.
How Does That Make You Feel?
When you first find out you’re going to become a caregiver (or slide into that caregiving role without even realizing it), you’re probably going to experience a range of emotions. Fear, anxiety, anger, frustration, honor, pride, or complete and utter cluelessness. If your loved one’s diagnosis is terminal, you may experience symptoms of grief as well.
Whatever you feel in this moment is not wrong. It’s not about the emotions themselves, but your reactions to them. In a situation where you’re inclined to focus solely on the person you’re caring for, you have to be sure to check in with yourself first. It’s like that famous airplane analogy: in an emergency situation, you have to put oxygen on yourself first before you can help anyone else. Figuring out how you feel and what you need to be okay is fine. Caring about yourself isn’t selfish.
The Starting Line
Caring for a family member, especially someone older than you, can be awkward. Caregiving can come with duties, responsibilities, and conversations that are just plain uncomfortable. As a result, a lot of families put off talking about the uncomfy stuff, like advanced directives, wills, or money because they dread feeling awkward. Newsflash: feelings can’t actually hurt you, but being unprepared very well might. One way to work through your feelings is by taking action.
One of the single most important things a caregiver needs (especially those caring for someone with a progressive or terminal disease) is Power of Attorney (POA). There are different kinds of POA, but it basically gives the caregiver permission to make decisions about the loved one’s care when they are unable to do so for a short or long period of time. This document allows the caregiver to make decisions on things like how to manage the loved one’s pain to whether or not to perform CPR on someone when they stop breathing. Power of Attorney may sound really heavy, and that’s because it is. But without this document, caregivers are really limited in terms of the info they have access to and the decisions they are legally allowed to make. Having this one document can make a huge difference on the care your loved one receives so it is very important for the primary caregiver (the one providing most of the care) to get it as soon as possible.
A simple Google search will bring up the proper Power of Attorney for healthcare form in your state or country.
Some caregivers may be shocked by how little help or support they have from family members. Siblings you thought would be more involved in the care of your loved one may fail to do their fair share or may bail completely. That is why it is important to identify the roles everyone will play. Someone will be the primary caregiver, providing care daily or weekly care most of the time. Someone else may provide transportation. Another person may do the grocery shopping, while another still may handle the bills. Unfortunately, some caregivers find that people they’d hoped would help them out, end up not being so reliable. You call for help, but they are always mysteriously “unavailable.”
The absent sibling or cousin is not unusual. But going back-and-forth about how terrible the other person is will be a waste of time and does not help your loved one. That’s why it’s important to identify the dead weight in your circle and cross their names off the list of helpful helpers. Again, it is going to be awkward, but it will make your life much easier. Once you’ve figured out the people and resources that will actually help you, you can divide up your responsibilities between reliable family members, friends, neighbors, local nonprofits, places of worship, and medical team.
Once you’ve figured out who will do what, write it all down and make sure everyone understands their roles. Communicating well and often will make care run more smoothly and your loved one will be better off as a result.
Technology makes it a lot easier to make sure everyone is on the same page – literally! Shared calendars on platforms like Google Calendar and Apple iCal allow users to create individual calendars for everyone on the care team and lets everyone access one “master” calendar. Features like color coding and reminders keep everyone organized and being able to see everyone’s personal schedules makes scheduling easier. Of course, it’s always good to have an old-fashioned wall calendar or datebook as a backup plan if technology fails (because it will). Remember: Update one calendar, update them all. Sometimes it may seem like overkill, but it’s better to have too many reminders than to miss important meets due to miscommunication.
The Beginning of the End
Taking care of another whole, grown-up human being can be overwhelming and it may be tempting to put tasks off and just address them as they come up. But caregiving can be as unpredictable as it is overwhelming. That’s why it is important to talk and think about what your loved one wants for the end of their life. One way to start the conversation is to find out if they have a will and/or advanced directive. These documents are really important because they tell you exactly what to do for the loved one (e.g. leave them on life support, cremate their remains, scatter their ashes at their favorite park, etc.) and what to do with their estate (e.g. who gets Grandma’s favorite gold pin, what charity should get all of Auntie’s old clothes, how do we split up the funds in abuelo’s bank accounts, etc.).
Depending on your loved one’s condition, it may seem pointless to talk about this stuff; their disease isn’t deadly and they can still think for themselves, so why get all morbid? Because life is unpredictable. There are cases where people diagnosed with terminal illnesses survive against the odds, but there are also cases where otherwise healthy people end up dying unexpectedly. Dealing with the ill, the aging, and the dying can be really difficult – especially when it’s someone close to you. But the more prepared you can be, the more room you’ll give yourself to grieve and mourn the way that is right for you, without all of the guesswork it takes trying to figure out what your loved one would have wanted you to do.
No Matter What
Throughout the caregiving process, you will hear voices (either in your head or actual voices from other people…) that will comment on how you’re doing. Therefore, I’d like to leave you with the following reminders:
- You are a good person and you’re doing the best you can.You will not get everything right. Because you’re a human. And humans make mistakes. Fix what you can fix and keep on moving.
- You know your loved one. You may not know everything about them, or maybe the person you’ve always known has been changed by illness. But, at the end of the day, if you think something is wrong or are concerned your loved one isn’t getting the best treatment, don’t be afraid to speak up! It could be something as simple as adjusting their pillow or something bigger like challenging a diagnosis. Whatever it is, as long as you have your loved one’s best interest at heart, you’ll never be doing the wrong thing.
- Don’t sweat the small stuff. Seriously. Nothing in life is perfect. That is especially true in the world of family caregiving. Dinner may not always come out the way you wanted it and your schedule will be thrown off every now and again, but you can’t let life’s interruptions ruin your entire day. Acknowledge that the plan has changed, don’t worry about who’s to blame, and move onto the next thing. A balanced attitude will help you avoid stress for yourself and your loved one.
Whatever your caregiving situation looks like, there’s no need to be ashamed or embarrassed. Taking care of someone who can no longer care for themselves is an amazing thing. Not only are you helping them with the physical tasks of daily life, you’re helping them live their lives with a bit of dignity and compassion. You’re letting them know that just because they are sick, and their lives as they once knew them have changed, they are still whole, human, valued.
Aisha Adkins is a writer, caregiver, advocate, graduate student, and speaker based in Atlanta, Georgia. A graduate student at Georgia State University’s Andrew Young School, this authentic storyteller is driven by faith, inspired by family, and eager to use her talents to affect positive social change. She is a full-time caregiver for her mother and founder of Our Turn 2 Care. When she is not a doting daughter and agent of change, she enjoys classic film, live music, and nature.
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