Most of us end up as caregivers without any advance warning or preparation for the role – instead, an accident or medical condition has created a situation where someone we love needs us to help them. We may be sister, son, parent, or friend, but we also are now caretaker.
While caregiving, you may balance checkbooks, shop for groceries, give medications, assist with doctors' appointments, prepare food, and help with bathing and dressing. To some degree, helping your loved one just comes naturally. But because of that, you rarely consider the emotional, physical, and financial toll this new role may be taking on you.
While understandable, the more you know, the better you’ll cope. So consider these basic points as you start on the caregiver journey, and you’ll be able to navigate with a bit more confidence in this new role.
Elements of Caregiver Support
Recognize that feeling overwhelmed and caregiver stress is a completely normal, understandable reaction. Moving into a caregiver role means taking on a responsibility that you may feel unprepared for and uncertain about. It’s normal to experience a range of emotions, including some negative ones, as you transition into this role. So don’t feel guilty if you feel sad, frightened, angry, or confused – things have changed, and you have a right to react to those changes honestly.
The following actions will help you cope with your new caregiver role and reduce caregiver stress:
Start a “questions” list. You want to get organized as soon as possible, and one way to do this is to start a list for all of the questions you need to have answered. How do I…? When do we…? Is it okay to…? What should I do if…? How do I handle…? And the really big one: Who can help? This list becomes the starting point for taking control in your caregiver role, and will give you a way to deal with all of your questions without being overwhelmed by them.
Figure out what help you need. Caregiving is a team effort, with you as team leader. But it’s up to you to decide what help you need and when. This may be ongoing medical help (might be regular doctor’s office appointments, or in-home care, or coaching on administering meds), help retrofitting a home for wheelchair accessibility, help with weekly tasks such as meal prep and delivery, or simply back-up so you can take regular mental health breaks. (This is often called “respite care.”) Every situation is different, but your job is to understand no matter how tough or strong or independent you may be, caregivers need help.
Identify who can provide that help. Is it family, friends, professional providers, community organizations, local government agencies, your church members? Start checking, or have someone do it for you. Many disabling conditions also have national organizations that provide information, resources, and a network of support that can help – be sure to check the Disaboom Resource Center for associations that may be able to assist you. And don’t forget to check with your local public library for “helping organizations” within your community.
Move toward establishing a daily/weekly routine as quickly as you can. When you’re a caregiver, it’s easy to feel like your life is out of control. The reality: sometimes it will be. But it’s a good idea to get a regular schedule in place for both you and the person you’re caring for: routine is comforting and provides a sense of familiarity and security for both of you.
Make sure you’re caring for yourself as well. Caring for another person, even those we love most, can be as exhausting as it is rewarding. It’s mandatory that you give yourself some breathing room – an afternoon off once a week, a regular get-together with your best friends, an art class every Tuesday and Thursday morning. In order to protect the well-being of the person you’re caring for, you first need to protect your own mental, physical, and emotional health.
Focus on fitness. Being a caregiver can be stressful, and your body has some very definite ideas about responding to stress, none of them good over a long period of time. The antidotes are exercise, eating healthy, and doing calming activities like meditation or getting a massage. Yes, sometimes it can be difficult to find the time, but it will be even more difficult to make time for being sick.
Take steps to stay connected. Caregivers can easily begin to feel isolated; the effort to get out of the house and connect with others may seem to be too much. But it’s important to your own mental and emotional health to keep the personal ties you have, or make new ones that support your new role. These might be local or online support groups, online communities, forums, or blogs that you initiate or participate in, professional activities that you can engage in from home, online courses that you can take, or volunteer activities that may or may not have anything to do with your caregiving role. The point is ongoing human contact – we all need it, caregivers or not.
As part of your staying connected, consider participating in one or more of the disaboom caregiver forums, where you can ask questions, answer them, and connect with others who share your situation. Also, blogging about your experiences is a great way to express your ideas as well as your emotions.
Find joy. It’s not easy being a caregiver, but you will have choices. To a great degree, those choices will shape the quality of your life. Will you focus your energy on anger and frustration, or on cherishing those moments that bring you joy? Whether it’s a garden you’ve nurtured or a symphony you listen to or a phone call laughing with a friend or the smile of a child – life brings moments of joy if we look for them. Yes, some days it’s easier than others, but don’t forget that you deserve to make joy a priority every single day.
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For more information about caregivers getting the support they need, see Building Your Caregiving Team.
Learn more about the types of support needed if you are a caregiver, in Family Caregiver Suzanne Mintz Offers Caregiver Support.
