Caregivers on parade…

I opened our Sunday paper today to find an article titled, “How Can We Help Our Nation’s Caregivers”? Its a nice article and touches on many of the key issues for people new to this role. The article focuses primarily on spouses or children who find themselves in the role of caregiver for an ailing partner or parent. This is, of course, how most people will experience the role of caregiving.I resonated with each point in the article from my role as a Mother to a boy with disabilities. The section I honed in on, however, was a full column briefly describing the financial toll of being a caregiver. This is where we can all chime in. They have two ,aom points:

  1. The government will only step in to help when people have exhausted every financial resource.
  2. Many caregivers are women and men in their mid-forties who are still building their careers and may be just hitting their stride. Once they take on the caregiver role, they experience “sharp drops” in income through personal wages and loss of savings. They cite the following statistic: “Over the course of a lifetime, caregivers sacrifice an average of more than $500,000 in total income.”

The article goes on to list some questions to ask the Presidential Candidates about this issue and quotes the statistic of 44.5 million family caregivers.

I am betting they did not include the millions of family members who stay home to care for a child with a disability. I think they only included people who care for the elderly.

Imagine what it looks like if you add in not only parents who care for adult children with disabilities, but how about those of us who were forced not to re-enter the workforce because dealing with issues related to a child with disabilities made us unemployable? I know that’s my experience. It’s hard to work in a hospital when you’re being paged all the time because your child missed the toilet and got potty on his sock at school. Believe it or not, one year I received multiple calls to come get him from school for this reason. Thankfully, I knew to say “change his sock or let him go without” and did not cater to their wishes. But it still took 20 minutes of my day each time. Add to that the notion that the entire hospital knew I was getting these calls. “Joan Medlen, dial the operator for an outside call” echoed through the halls.

I have been lucky. I have managed to create a career that is based on contracts and work that I can do from home (www.DownSyndromeNutritin.com). It has other problems, though. When I travel to do presentations, it is not always easy to find someone to be here with Andy in the evenings. My husband and I have arranged our schedules so that he takes on the morning duties and I take on the afternoon and evening events. My husband works 1-11pm. This is great when I”m home, but when I need to travel during the summer, it means finding someone to be here for ten hours.

Not everyone is this lucky.

I recently came across some data from the National Survey for Children with Special Health Care Needs. I have not yet had a chance to look it over as closely as I would like, but will soon. A cursory review suggests that 21.7 % of all parents of children with special health care needs had to cut back or stop working because of their children’s medical needs. The costs related to that care caused 16.7% of families of children with special health care needs to experience financial problems. Last, 8.7% of those families spend 11 or more hours per week providing or coordinating their child’s care. Across the board the numbers in these categories for children with no special health care needs were significantly less (3.9%,3.9%, and 2.8% respectively).

Just another question to leave hanging for now.

I’ve had the last two posts in “draft mode” for quite a while. I’d like to be more timely with this blog – it may stray outside the “sandwich generation” topic…we’ll see. But, I think it’s a good place to ask a lot of questions – not that anyone will see!

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About Joan

I am first, and foremost, the mother of two amazing young men. One of them has Down syndrome, Autism, Celiac Disease, and uses few words. I focus my work on providing support, training, and creating tools that will create quality lives, quality health, and connected community for him and his peers. It's true. We can all have a quality life, with quality health, and connected communities in which we thrive. Let's go on this walk together! You can learn more about me and my work at www.DownSyndrmeNutrition.com
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