Tell Us: What Did You Need on Your Loved One's Diagnosis Day?


Tell Us: What Did You Need on Your Loved One's Diagnosis Day?


Several years, I released a free ebook called “After the Diagnosis.” The booklet included tips and suggestions from family caregivers on how to manage after a family member’s diagnosis as well as information about navigating the health care system.

I’m updating the ebook and would love to hear your suggestions in order to make the resource truly helpful. What kind of information, if any, did you and your loved one receive? What kind of information would have been helpful for you to receive the day off the diagnosis? What did you need in the days and weeks afterward? Which resources would have been helpful for you to have?

Please share any thoughts and requests in our comments section below.

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What I needed most would have been to have had the diagnosis two years earlier. My family and I had two years of expecting my husband to recover from his stroke and wondering why he was getting worse instead. After two years we finally met a doctor who said he had vascular dementia, like her grandmother.\r\nAt that point I could have used all the information I have gained and am still gaining.


We’ve had a helpful conversation on Twitter about information we need on Diagnosis Day. Some suggestions I had not thought of include:\r\n--Organizations that help pay for medications\r\n--Clinical trials\r\n\r\nCertainly, referrals to community organizations that support us as well as to disease-specific organizations will be helpful, too.\r\n\r\nI’ll continue to share and add to this list. Thanks to all who offer ideas!