Today’s the deadline for getting my blog post to my friend and colleague at The Respite, Cindy Ballaro. For the past couple of days I’ve been trying to shorten the list of possible topics, but the list continued to lengthen. Should I write about the international Saging Conference I attended last weekend at Lake Junaluska? Or the wonderful 4 week class I conducted at The Respite on Conscious Elderhood where 8 women taught me so much about aging? Perhaps early-onset dementia? I’ve been seeing more and more clients who are dealing with this disturbing phenomenon. Maybe what I really need to write about is my 85 year old mother’s three week visit from Cape Town, South Africa? Or Gen-X’ers as caregivers?
This last one kept coming back to me. So here I am, poking around on various sites to see if there is any literature out there or if someone else has written about this particular generation needing to take on a huge responsibility as caregivers for parents at a relatively young age. The reason I even considered this as a topic is that I’ve recently had the honor of meeting two young women who have been caring for their mothers. Both of them are the youngest in the family and have much older siblings. But they are the ones who have become the primary caregivers. Perhaps it’s because they were at home during the most recent years when their elder sibs had already left for college or jobs or marriage. Or perhaps they are the closest to their mothers because their mothers were more experienced and relaxed at parenting when Child #3 or #4 came along.
I’ve noticed the different timbre and quality of interaction with this generation of caregiver. There is much more humor and teasing and bantering in between the devastation and seriousness and sadness. There’s also a sense of fun that’s brought to the weight of it all.
And at 35 or 46 lives are filled with exciting and vibrant adventures like parenting, perhaps; or building a career, going to grad school, dating, traveling. It’s the “Eat, Pray, Love” time. What a whammy it must be, in the midst of that stage of one’s life, to discover that one’s parent needs to be cared for on an intimate and constant basis? What about these young women’s moms being there for them when they need support from a grandmother for their children or a sounding board of advice about a career move, starting a business, or help with an educational decision? Or tips about a relationship?
We haven’t even discussed that Gen-X’ers may still need some financial assistance from parents – like help with a down-payment on a car or home.
One of the first sites that came up when I searched “early onset dementia and generation x” was a book that I have just ordered, called Three Years and Thirteen Dumpsters: Cleaning House After Dementia which I can’t wait to read. It’s written by Joy Walker. Here’s a description: The author discovered her father’s early-onset Alzheimer’s disease had progressed to dangerous levels in the Fall of 2003. Forced to step in and assume control of his life, person, and finances, she spent the next two years living with her father as a part-time professional care-giver and business manager, teaching herself the necessary skills as she went along. It was during those two years that she developed a new relationship with her father, and a new understanding of herself. In the Spring of 2006, she dedicated six months of her life to cleaning out and selling the family home, experiencing events both hilarious and heart-breaking throughout the project.
In the Huffington Post’s Health News, Rev. Amy Zietlow in her blog post “The Coming Age of the Family Caregiver” writes that “According to the AARP, most informal caregivers provide an average of 21 hours of care per week, so basically a part-time job. They paint a picture of informal caregiving where caregivers assume responsibility for their loved one’s day to day care, triage any health care crises, absorb financial burdens big and small, and tend to underestimate how much time and how stressful being a caregiver will truly be. As a mother of three, these observations sounded a lot like caring for a toddler. It shouldn’t have surprised me then when their data showed that a typical caregiver in the US is a 46-year-old woman who works outside the home.”
A 46 year old is one of the older Gen-Xers but we are seeing children as young as 30 now being the primary caregiver for a boomer parent. The number of Americans suffering from early onset dementia is growing as the baby boom generation ages. Boomers aren’t getting dementia at a higher rate than previous generations; it’s just that there are 78 million Americans who are between 47 and 66 years old. The Alzheimer’s Association estimates that about 200,000 Americans under 65 have Alzheimer’s disease.
Read more: http://www.alz.org/alzheimers_disease_early_onset.asp
The Aging Services Network is not adequately prepared for younger caregivers and younger onset dementia. Many Memory Care Centers are purpose-designed for older residents and family caregivers. This is a challenge that will need to be addressed. Luckily, in Charlotte we have visionaries who are responsive to changing needs. I want to give a “shout out” to The Ivey Adult Day Care because they have an Early Onset Support Group as well as special programming for younger participants in their adult day care.
We, in the field of aging, need to listen to these younger caregivers and provide them with even more support as they juggle all the roles they are being asked to play. And we can learn so much from them as to how environments need to be re-designed for those with earlier onset dementia, as well as the type of support and care we can offer that may look different to what we have historically offered. They can make a significant contribution to the field of gerontology by loving their moms and dads in their unique and creative ways.
Dr. Lyndall Hare
Gerontologist at The Respite