Question: Dr. Gary, I am going to be honest with you. I’m doing really well on my meds. I’m undetectable and I feel great. But I know nobody’s future is guaranteed. And I’ve got three kids who are my world! I find myself thinking what if? How can I stop worrying about being there for them?
Answer: I often talk to my clients living with HIV about their children. The conversations usually revolve around how to talk with their kids about how their health. Even with the challenges of being a parent with HIV, these conversations always have a sense of hopefulness. Sometimes we even find something to chuckle over.
But I also have a conversation with parents that is anything but light. Like last week. Here’s what happened:
I have a client who is a single parent, raising two young daughters. We have already had the parenting conversations that I described. This time she needed to have that other conversation. Like you, her meds are working great. But also like you, she can help but “what if” about her children’s future.
I felt my heart breaking when she said to me, “I am worried about always being healthy enough to work and pay our bills. I am worried about being able to care for my daughters. I am worried whether I will be there for them at all.”
What parent doesn’t have thoughts at times about being there for their children as long as they are needed? A parent living with a chronic condition like HIV is like to have these thoughts.
I have to admit that this is one of the hardest conversations for me to have with a client. And maybe the absolute hardest for a parent to have. But it’s a necessary one. My client and I brainstormed together and here’s what we came up with:
Have a family support network. You might have heard the African proverb, “it takes a village to raise a child.” Take that proverb to heart, and create a village for you and your children. Embrace friends and family members who like being around your children. Invite them to come over and cook with you. Enjoy activities together outside of the house. Reassure your kids that they are loved by other responsible adults.
Enlist people who can help if needed. Think about the tasks around the house that you might need help with if you weren’t able to handle all of your responsibilities. And then think about people in your circle of friends and family who might be able to help out from time to time, or on a regular basis, if you needed assistance. You might want to make a task list. Try to associate tasks with people who you think might be willing to step in and help out. To give yourself some additional reassurance, you might want to approach the people on your list and ask them if they would be willing to step up to the bat if needed. You might want to check into the provisions of your health plan to see what might be available to if you needed help at home.
Do the numbers. While you’re at it, also check out the fine print on any disability plans you have in place, to get a sense of what your finances would be like if you were unable to work. As well as what public assistance programs might provide. It’s better to know what you’re dealing with than not to know. Knowledge is power.
Designate guardians. When my niece and nephew were very young, my brother and sister-in-law asked me if I would be willing to step in as their children’s guardian in the event that something happened to them. I was surprised and honored to accept this responsibility. When I agreed, legal documents were created to formalize this agreement. It gave my brother and sister-in-law peace of mind, knowing their children would be cared for by someone who loved them. It was reassuring for me as well because I trusted myself to be a good parent a whole lot more than I trusted someone the courts might assign. We hardly ever discussed it after that. We didn’t need to. An ironclad agreement was in place.
Make it legal. As my own family members did. Sit down with an attorney who is experienced in trusts and wills. Make sure you get advice on any and all potential outcomes, and what you can do to protect you and your children.
Have a talk. I’m not suggesting initiating a gloomy discussion with your children and potentially causing them to be fearful. Instead, watch for signs that they may be worried about your health and/or their future. If so, ask them if they have anything they want to talk to you about. Or watch for teachable moments, e.g. after a scene from a TV show. Remind them of how loved they are. Reassure them you are making sure they will be always be taken care of. If you are asked a direct question, answer it in a way your child can understand. If you have a partner, they should be involved in these discussions.
And then, enjoy your life. None of us are guaranteed a future. We only have this moment in time. So enjoy each and every moment with your children. After all, each day is an opportunity to create a new memory.
You and your children. It’s hard to think about not being able to meet all of their needs. But take the time to protect their future. You will have that much more peace of mind to share in the present.
Gary McClain, PhD, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, www.JustGotDiagnosed.com.