The moment when a diagnosis comes is different for everyone. And, as hard as it is to believe, it’s better than limping along without a diagnosis. Whether it’s for you, your child, or another loved one, the days and weeks – even years – after the diagnosis are going to be akin to marriage. The diagnosis is simply the wedding.
How do you settle in for the (potentially) long haul of a diagnosis? With planning, courage, and help.
Finding Dr. Right (not just Dr. Right Now). The obvious first issue you’ll have to wrestle to the ground is finding great health care professionals. Depending upon your diagnosis, you might need a second or even a third opinion. This is the medical equivalent of dating. Do your personalities, values, and chemistry click? If not, keep hunting for the right match.
Read the fine print – then read it again. Your health care plan is going to be a critical partner in your relationship so you’d better familiarize yourself with it. This will be especially important during open enrollment periods when you have the ability to compare plans (if you’re lucky) and squirrel away pre-tax dollars into a health spending account (if you’re really lucky). Not only should you carefully consider the financial aspects of your health care plan, but also be sure to evaluate the location for services, the quality of the specialists that are available to treat the diagnosis at hand, and the types of services the plan covers.
Keep records, but don’t keep them to yourself. Record keeping is going to be important for you and other caregivers. It helps when you’re sick, overwhelmed, or if someone else has to step in to help. I began keeping detailed records of my daughter’s care early on. It was there to remind me of important points that I might overlook in the heat of the moment, and it was also there in case something happened to me and my husband had to step in. Be sure to keep a copy both electronically (in a safe place) and a hard copy.
Have a plan. Many diagnoses require some level of planning with respect to care. How should you manage a medical crisis? If the patient is an adult, what does s/he want done? The type of planning involved in managing a diagnosis will vary over time and with respect to the life-stage of the patient. This may include planning for you – the caregiver – in the form of a special needs trust. It may also include discussions regarding resuscitation and invasive care. It can also be as simple as knowing when to head to the emergency department during an asthma attack. Regardless of its complexity, be sure that caregivers understand the plan and how to proceed during an emergency.
Connect with others. One of the best things about the Internet age is that it allows you to connect with entire communities throughout the world that understand what you’re going through. These resources can be amazing. Yahoo Groups and Facebook have groups and communities associated with just about every diagnosis under the sun. And if they don’t, you can step in and be the lead by creating one. Members of these groups often have very useful insights, great tips, and reality checks. Of course, use them wisely and be careful about how much personal information you share.
Ask for help. Whether you need some caregiver time off, financial advice or assistance, or evaluations, there are resources out there. Early Intervention, for example, is free and doesn’t require any referral from a medical professional. Services vary by state but they can be an amazing resource for infants and young children facing developmental delays. State and federal medical assistance is also available, with significant variations at the state level. Some states are quite generous; others are horrible. Carefully evaluate what your state has to offer using online resources or by contacting your county health department (always a good first stop).
Over the coming weeks, I’ll be writing more focused pieces for various types of caregivers – parents, spouses, and children of aging parents. However, this general advice can be useful for just about anyone as they contemplate their role as caregiver. Yes, the diagnosis can be overwhelming, but it can also be liberating. Once you have that piece of paper, so to speak, you can get on with living.