Genetics can play a role as well. Does dementia, cancer, heart disease, stroke, diabetes or any other chronic disease/condition run in your family? If yes, you’ve likely realized the importance of practically and emotionally preparing to take care of your elderly parents. But hold on a second. Before you feel overwhelmed by starting this process, rest assured that preparing can actually relieve stress! In fact, the very act of reflecting on what you want from caregiving (not just what you feel obligated to do), stepping back to see the big picture of chronic illness, and planning for the future are all ways we can proactively cope with the inevitable changes that time will bring. Trust me, I know this from experience. My caregiving journey started when I was 28 years old. I was a young, starry-eyed professional with a full-time job in Washington, DC. I lived hours away from my parents when we discovered the unimaginable: Dad had mild cognitive impairment, which in our case, led to dementia. And I wasn’t ready. I wasn’t ready to go from being “taken care of” by my parents to helping my mom take care of my dad. Now, ten years later, I’m sharing what I’ve learned from caregiving because I want you to be ready. Below, I’ve gathered the most important first steps when beginning or continuing your caregiving journey—some steps I did take in my life, and others I wish I had taken. My goal in sharing is to save you the stress that I experienced.
7 Steps To Prepare for Your Caregiving Journey
All the steps below are doable for anyone, no matter how close or far you live from your parents.
Step 1: Know that there’s no one way to be a caregiver.
You can provide hands-on care when living with the person with the illness, or you can help from a distance. Keep in mind that all forms of assistance, no matter where you live, are valid and important.
Step 2: Learn all you can about the chronic disease/condition and the symptoms your parent is currently experiencing.
You’ll want to look up common symptoms and research what to expect from the disease or condition in the future, if known. What kind of caregiving is normally needed at the beginning, middle and end? This behind-the-scenes work will help you cultivate empathy and understanding for your parents, and it enables you to create a framework of what to expect long-term. This framework can help you form a future plan for both your parents’ health, housing, wills and finances, based on their needs and values.
Step 3: Reflect on your parents’ needs and what you can realistically provide.
Even if only one of your parents has a chronic disease or illness, both of your parents need help—now and in the future. Start a fresh page in your journal or a Google document (you’ll need these answers for the next steps), and ask yourself:
What do I want this caregiving journey to look like for me, and what are my parents’ needs for their best quality of life? For example, do they want me to be physically present with them all the time, or are they okay with me visiting once a week? Do they want to live in their home for as long as possible, or would they consider moving?Based on what I think their needs are and will be, what do I feel comfortable helping with?Based on their needs and my life responsibilities, what may I have trouble providing (for example, financial assistance, emotional support, hands-on assistance, visiting on a regular basis, etc)?
Step 4: Ask yourself: Do I want to be a caregiver?
Now that you have an idea of what to expect in the future for this illness and you’ve thought through what your parents need as well as what help you can provide, deeply reflect on this question of being a caregiver. Then, if you do want to be a caregiver, ask yourself:
What kind of caregiver do I want to be? (ex: hands-on, long-distance, etc.)Do I want to be a caregiver because I think the role will be fulfilling, or is it because I feel obligated? What aspects could be enjoyable for me as a caregiver? What aspects would be less enjoyable for me? How would my caregiving role impact the rest of my family (spouse, kids, siblings, etc.)?
You may be tempted to skip asking yourself these questions, but this is probably the most important step in this list. Why? Because caregiving research continues to show that it’s essential that you choose to be a caregiver. Choosing allows it to be your decision and in your control—not a job you feel forced into. The more you feel you’ve chosen your caregiving role, placed boundaries on what you can provide and listed the reasons you want to be a caregiver, the less stress you’ll feel throughout your journey. Also, be sure to save your answers to these questions so you can look back on them on a particularly challenging day.
Step 5: Seek out and accept community support
Society teaches us that we have to do everything perfectly by ourselves and not ask for help. Well, I’m here to tell you that that is completely unrealistic. It can be incredibly lonely to be a caregiver, especially without support. It’s also not sustainable. The good news is that community support can come from many different places: neighbors, friends, family, social programs through your local Area Agency on Aging, support groups, and religious or spiritual groups. Now, more than ever, you can find support groups dedicated to the chronic condition (in-person or online), and social media communities of caregivers. When assessing how the community around you can help, Dana Hutson, founder of Cancer Champions and patient advocate, makes an excellent recommendation. She suggests “taking inventory of friends and family based on their gifts and talents,” and then compassionately asking for their assistance based on those strengths. I love this thoughtful and positive approach to asking for help.
Step 6: Communicate with your parents, family members and friends
Now that you’ve done some really important groundwork in understanding the chronic illness/condition, what your parents may be experiencing, what you’re willing to do as a caregiver, what you’re not able to do and who around you can help, it’s time to get the family together to talk about how to move forward. While you now have notes written down about your interpretation of the situation, it’s essential to keep an open mind in this conversation and to listen deeply to your parents. Find out from your parents what they need now, and who among your siblings or family members can help provide that—it may help to talk with these siblings or family members before the big family conversation. The inventory you took in step five will be really helpful in this pre-conversation. If you find that your parents aren’t feeling like they need help right now, keep your notes and stay in touch with family members and friends. When a crisis happens in the future and your parents do need help, you’ll be ready with solutions.
Step 7: Seek out and accept professional support.
Having been through a seven-year caregiving journey at this point, I’ll be the first to tell you: Community support from family, friends, and neighbors is excellent, but it’s not enough. You’re going to need professionals who really understand what you’re experiencing, and who have worked with clients just like you. You’ll need emotional support in the form of a therapist, a certified guide or coach who specializes in the chronic illness or condition to help you navigate through unforeseen obstacles, an Aging Life Care Professional, future hands-on help from a home care agency, and any other professionals that can make this journey easier for you and your family. Next up: 12 Books and Movies for Caregivers
Sources
Centers for Disease Control and Prevention, “Chronic Diseases and Cognitive Decline” National Library of Medicine Study, “Coping strategies and quality of life in caregivers of dependent elderly relatives.“National Library of Medicine Study, “Lack of Choice in Caregiving Decision and Caregiver Risk of Stress.”Dana Hutson, founder of Cancer Champions, LLC and patient advocate.
