When a loved one is diagnosed with a chronic condition, you can feel your entire life has been halted. There are a variety of illnesses that are chronic including Alzheimer’s and cancer. Children may receive diagnoses that they will carry for a lifetime, which reshapes a family’s entire idea of their future. For those whose life expectancies are shortened by their conditions, changes have to be made that can feel even more jarring and difficult to cope with. Self-care can fall to the wayside, and everyone can find themselves struggling to adjust while grappling for some semblance of normalcy. To help you cope, here are a few things to know about chronic illness in the family and ways to respond.
Learn to Accept the Unknown
We live in a time where anything can be found with a simple internet search. In some cases, a deep dive into the third or fourth page of search engine results still yields answers. For example, you may know and understand common women’s health issues, but what about the uncommon ones that appear seemingly out of nowhere? And what happens when you don’t know how someone’s health is going to change or even how long they’re going to live?
Learning to accept the unknown is imperative to adjusting. Children may not need to know the details about a loved one’s condition, but they will also notice shifts in the family unit and need responsive, compassionate care. Working with a social worker (LSW, LCSW or MSW) can help families begin to modify their routines and plans while still providing structure and stability for children. When someone in the household has greater needs due to their health, the therapist can provide tips for meeting them without compromising self-care or neglecting others.
Find Ways to Finance Care
Money stress affects mental and physical wellbeing. It can create relationship conflict between caretakers and couples responsible for managing a child’s or loved one’s healthcare. For adults, options like long-term care insurance may be able to help as it covers costs. You can review a guide that answers whether long-term care is worth it and help you make the right decision for your family. You should also think ahead about how your loved one’s needs may change.
Will they need to be moved to an assisted living facility? Will you need to hire a home nurse or care aide? Do they have savings that can help offset living expenses? How does their health insurance coverage currently meet their needs, and what changes need to be made to ensure their necessary medications, equipment and treatments are covered? A social worker is skilled at care coordination, and they can help you begin to work through these stressful questions. They can also help you break up care routines with other family members to ensure no single person is overburdened.
Make Time for Yourself and Your Family
Even if you become the sole caretaker for a loved one, you deserve time to look after yourself. You also deserve time to be with your family. Having uninterrupted time with your partner and children can help you maintain a sense of balance in your lifestyle. You should avoid using your time with them to discuss your loved one’s care or allowing their condition to completely overtake your life. This is easier than it sounds, of course, which is why therapy is such a valuable tool. It gives you space to vent your emotions, work through your real and valid fears and get supportive guidance on how to handle them. Caretakers have to remember that their lives can’t be all or nothing. This black and white mentality will only lead to more stress, and it forces you to choose between yourself and your loved one instead of caring for both.
Ask for Support
You do not have to handle caretaking on your own. It doesn’t make you a bad parent, child or anything else to need help. You’re only human after all. It’s not uncommon for family members to take on the responsibility of caretaking entirely alone. They feel guilty if they ask for help, and they push themselves too hard to do everything independently. They may not know how to ask for help or assert their own needs, so they suffer in silence. Make sure that you are open about your need for assistance and space, even if it’s uncomfortable at first. Surround yourself with people you trust, and don’t feel like you are failing because you need time to recharge. Despite your family member’s illness, you still have your own life to live as well. You can make their caretaking a part of it, but it does not have to overwhelm your entire identity.
Focus on the Person, Not Just Their Condition
Your family member is still a person beyond their diagnosis. Although it will change their own identity and become a part of it, it doesn’t make up the sum of who they are. Even though you may be thinking ahead or constantly envisioning the worst, you should also try to see them as the person underneath their health problems. Spend time with them. Laugh together. Make memories. Communicating and sharing with one another brings you closer together, regardless of whether you are their caretaker.