Welcome to My Caregiver Blog

As this is my introductory blog, I thought it important to tell you why I am writing one and what I hope to accomplish.

The reasons are simple:

I want to reach as many family caregivers as possible and help them help themselves and their loved ones. I firmly believe, in fact, it is the philosophy upon which the National Family Caregivers Association was founded, that if we believe in ourselves, protect our health, reach out for help, and speak up for our rights we can each improve our day-to-day lives, but also together we can change our healthcare system and our society to make it more responsive to the needs of families dealing with chronic illnesses and disabilities.

Via this blog, I also want to reach non-caregivers and awaken them to the realities of what it means to be a family caregiver in America today. Caregiving is more than a one-person job. We all need to help each other and we all need to recognize that there isn’t going to be a family in America that is not touched by family caregiving. Caregiving isn’t just my reality. Someday it will be yours – either as a caregiver or a care recipient. We are all in this together.

Caregiving as we know it today is a new phenomenon. That’s because today we live so much longer than ever before. It is shocking to think that in 1900 the average age of death was 47 and people died from infectious diseases. Today the average age of death is 77 and people are dying from chronic diseases such as Alzheimer’s. In addition families no longer are clustered around a neighborhood. They are spread out across the country. Women are in the workforce and medical science now makes it possible for people with severe disabilities and conditions to live for long periods of time.

Unfortunately as the nature of our lives has been changing, the state of our society and the systems that support it have not. Our healthcare system is great when it comes to patching up someone who has been in a car accident, but it is not geared to helping someone with a birth defect or slowly degenerative condition like Parkinson’s. Building codes are stuck in a former age. They aren’t geared to an aging population and more people with disabilities living in the community.

I could go on, but hopefully you get the point. Family caregiving is hard – how can it not be? Someone you care about needs to be cared for, sometimes in the most basic of ways. Family caregiving is hard – but it doesn’t have to be as hard as it is – not if we work together to bring about change.

These are themes you’ll hear me repeat. They are the drumbeat of my life – as the president and co-founder of NFCA but also as a family caregiver myself. And I guess that’s where it all began, with my becoming a family caregiver.

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The following is excerpted from my book: Love, Honor & Value: A Family Caregiver Speaks Out About the Choices and Challenges of Caregiving. It was published in 2002. A revised edition will be out next fall.

It all began on a Sunday afternoon in the fall of 1974 when my husband Steven began feeling a tingling sensation in both legs. He tried shaking them, the way you do when they’ve ‘fallen sleep.’ But that didn’t make the tingling sensation go away. It persisted during the rest of the day and throughout the night. So in the morning, Steven called our internist, in the hope of getting an appointment later that day. But he advised otherwise. “I think you should see a neurologist rather than me” he said. “I’ll give you a referral.” After hearing Steven’s symptoms he recommended Steven go to the hospital for tests. It was obvious that something was definitely wrong, and both Steven and I started to get scared.