New Award Recognizes Long-Term Caregivers Who Blog

Do you know someone who has cared for a severely disabled family member at home for ten years or more, and who writes about caregiving on a blog?

When my mother, Judy, who had dementia, lived with me and my young family nine years ago, and I worked outside the home, writing was my safety release valve. Jotting down my thoughts and worries in stolen moments in notebooks and on scraps of paper helped me keep my sanity while I struggled to come to terms with my new role as a “sandwich generation” caregiver. But the sustained writing that formed the chapters of my caregiving memoir didn’t happen until Mom moved into assisted living and I had more time to breathe. And I didn’t start a blog until my book came out a few months before Mom passed away two years ago. Sometimes I wonder, if Mom were living with me today, whether I would be posting my worries, fears and lessons learned on a blog. But back then a blog never occurred to me.

New recognition for blogging caregivers

A brand-new award program seeks to honor those of you who are blogging about your experience caregiving full-time at home for a family member with a severe disability.  The program, launched last week, is called the “Caregifted Blog of the Week Award,” and is a partnership between the blogstream  ChangingAging.org, which challenges conventional views of aging, and the nonprofit Caregifted.org, which grants respite to long-term caregivers.

Read more about the Caregifted Blog of the Week Award, and how you can nominate someone, here.

The 24-Hour USAgainstAlzheimer's Tongue Twister Challenge!

You've seen the "ice bucket" challenge that raised tons of money for ALS research, right? Well, USAgainstAlzheimer's, a national advocacy group for people with Alzheimer's disease and their care partners, has launched their own ice-bucket-type challenge:  

The #Alztonguetwister Challenge!

In the next 24 hours, record yourself saying

"Six stick shifts stuck shut" – six times, as fast as you can.

If you'd prefer not to get your tongue tied, you can donate $20 or more to help USAgainstAlzheimer's in our mission to end this disease by 2020.

Click this link to watch George and Trish Vradenburg, co-founders of USAgainstAlzheimer's, attempt the #alztonguetwister challenge. Then post your own video in the next 24 hours and nominate three friends – or donate to USAgainstAlzheimer's.

What do you say: Tongue twister? Or can you give now to help USAgainstAlzheimer's save lives by stopping this disease as quickly as we can?

Elder Caregiving for Years and Years is Fairly New: Why Social Security Benefits Need to Catch Up

My mother, Judy, and me shortly after she moved from my home into assisted living. If I had left my job to care for her at home, I would have wanted to be able to receive a Social Security credit for a percentage of the wages I would have lost. As many of us live longer, family caregiving for an elder parent or spouse with frailty, dementia or other chronic health problems can last for five to ten years or more. Has “long-term” care always lasted so long? Not even close.   

Life expectancies, living arrangements and elder care have changed radically in the last century. It’s time for our safety nets such as Social Security to catch up.

If we look back to the early twentieth century, it’s clear that the extent of our caregiver stress is fairly recent. If you feel exhausted, it’s partly because the responsibilities of elder care were never meant to go on for years and years—and were never meant to be a job for one person with little help.

What does this mean for family caregivers today? How can our social policies better support caregivers? 

In my post this week for caregivers.com, I look at elder caregiving 100 years ago compared to today, and share information about a new bill in the House of Representatives, the Social Security Caregiver Credit Act, that would go a long way to updating our social policies to reflect the realities of elder caregiving in the 21st century.

At the end of the article I share an easy way to tell your representative that you want family caregivers to receive Social Security credit for leaving their employment to care for a dependent relative.

Read more here.

Staying Friends with a Person with Advanced Dementia

"How do you continue a friendship when your friend no longer remembers the story of your friendship?"
                     -- Susan H. McFadden, Ph.D., co-author, Aging Together:
                               Dementia, Friendship, and Flourishing Communities 

Book Review:  Aging Together

I have lived in an intentional community, a “cohousing” community, with my husband and children for 16 years. Our homes are built quite close together, we share outdoor space and “common houses” with meeting rooms, laundry facilities, dining areas, and play rooms, and many residents join village meals several times a week.

Such an intentional community serves as a kind of laboratory for aging not “in place” but “in community.” As cohousing spreads across the world, it has the potential to teach us a lot about one of the growing challenges—or opportunities—of aging:  how to maintain friendships with people we care about who develop Alzheimer’s disease or another dementia.

With one in 8 people over age 65 developing dementia, and nearly 50 percent over age 85, each of us is likely to have a friend with dementia, be a care partner for a person with dementia, or develop it ourselves. Aging “in community,” whether we live in an intentional community or a suburb, means that we will have to choose how we respond when our friends start to develop dementia. Will we grow closer, or slip away?

A recent book, Aging Together: Dementia, Friendship and Flourishing Communities by Susan H. and John T. McFadden (Johns Hopkins University Press, now out in paperback), is an excellent guide for anyone who cares about a friend with dementia.  It’s addressed “primarily to persons who have not given much thought to what will happen to their own friendships when forgetfulness increases.” The key question, the authors suggest, is “How do you continue a friendship when your friend no longer remembers the story of your friendship?”

The authors of "Aging Together: Dementia, Friendship and Flourishing Communities"Susan is a professor of psychology at the University of Wisconsin, Oshkosh, and writes extensively on aging, religion and spirituality. John, a minister for over 30 years, has served as a pastoral presence to people with advanced dementia. As Susan says in a video of a talk they gave together, “Regardless of whether you or a loved one have a diagnosis of dementia, we are all living with dementia. We need to tell a new story about dementia—a story that is not defined by fear and exclusion.”

In the video, John says “We can, together, weave a new story—a story about continuing friendships, rather than withdrawing from friendship. It’s a story about building dementia-friendly communities where our neighbors with dementia, and their care partners, are still very much a part of the give and take and flow and life together in community….[You can tell your friend,] ‘You’re going on a difficult journey, but you don’t have to do it alone. I, your friend, will travel it with you; I will not abandon you.’ ”

Read the rest of my review of their book and watch their video on ChangingAging.org.

Is It Worth the Cost to Hire a Geriatric Care Manager?

My mom, Judy, and my son, Andrew, when he was one, visiting Grammy's "big lake water" at her isolated cottage. Mom's symptoms of dementia were just beginning, and it took me several years to figure out what was going on. Looking back, I wish I had hired a geriatric care manager to assess her living situation.Occasionally on this blog I write about things I wish I had done differently as a care partner for my mother, Judy, who lived with vascular dementia and probable Alzheimer’s disease. Today I’d like to talk about geriatric care managers—what they are, and why I wish I had hired one.

Even though I felt acutely stressed as a “sandwich generation” caregiver (caring for my children as well as my mother), I rejected the idea of hiring a geriatric care manager (a GCM). I was trying to stretch my mother’s modest savings, and thought that hiring a GCM would be too extravagant.

Looking back, I wish I had hired a GCM, even before Mom moved into my home. A GCM would likely have had a real impact on the choices I made and the quality of my mother’s life, my life, and that of my husband and children.

In my post this week for caregivers.com, I outline some of the ways we could have benefited from hiring a GCM, and discuss the main reason people decide not to hire a GCM.

Read more:  Five Reasons to Hire a Geriatric Care Manager, and One Perhaps Not To