AARP’s Caregiving Story Campaign: Kay from Virginia



Kay020AARP is running a campaign “I <3 Caregivers”. I shared my story and hope you will consider sharing yours.

I am your classic sandwich generation caregiver. A few years ago, my parents started to change, subtly at first. My Mom didn’t recognize an old family recipe I made (my cooking is not THAT bad) and my Dad’s humor dimmed. Over the course of the next few years, there was a stroke (Mom), broken hip (Dad) but they recovered and remained independent. We now recognize that both parents were walking into dementia together and we were very worried for their safety. Our parents were in a Continuing Care Retirement Community (CCRC), but they were unwilling to change their lives as their health changed.

Our parents drove even after their doctor submitted papers to revoke their driver’s license. My siblings came to town to help hide cars and manage through this change. Then my parents would jump into cabs and arrive at their destination with no money. One evening our parents broke into their own home–then called the police to say someone broke into their home. They fought hard to maintain their independence and didn’t want anything to change, but it needed to change.

Last year my father died of cancer that was undetected until he could no longer move his tongue. It was a hard choice to make–do we put a man with Alzheimer’s through chemo? Four weeks after his diagnosis he died in hospice care.

Having your Mom call and ask you why you never told her that her husband died is heartbreaking. The hardships she faced being alone and not remembering were difficult to navigate. She is in an Assisted Living community and we are facing a steep decline that landed her hospice care two weeks ago.

Thankfully, my parents were very open about discussing their wishes for end-of-life care. Knowing what they want and making those choices is still difficult.

The experience was so overwhelming, I ended up leaving my full-time job in an executive role at a Fortune 500 to launch a business (MemoryBanc) to help other caregivers organize all the papers and documents needed to support a loved one.

In 2013, MemoryBanc won the AARP Foundation Prize for “Older-Adult Focused Innovation.”  It turns out, everyone over the age of 40 should use the system to get their documents, accounts and assets organized.

I don’t wish this path on anyone, but the journey has made my life richer, my bonds with my siblings stronger, and my path and choices for the rest of my life clear. Accomplished.

Yikes! One in Three Americans is a Caregiver.

crowdAt almost every visit, my Mom will ask “Who would help me if you weren’t here?” I tell her friends would fill in or she could hire someone, but she always bats away these responses. My mom is currently in an Assisted Living facility. For three years I have been very involved in the care and support of my parents. They were 78 and 79 years old when I turned into a caregiver.

An AARP report from 2010 stated that one-third of U.S. adult population plays a caregiver role in households across America. That totals 65.7 million caregivers. A previous report I found put this number as 44 million — either way — it’s a large number of people. We all have unique roles and challenges as caregivers.

At almost every adult gathering, you will find a discussion about this topic and many of the caregivers are overwhelmed, frustrated and often hog-tied because they lack access to the information they need to better support the person they are helping.  

I feel like I was lucky. Because my parents had dementia, I had time to work with them to collect and organize much of their household information. My parents had completed their estate plans, and I held a Durable Power of Attorney. When that didn’t work or we found that it could take weeks and even months to navigate the approval process. We ended up setting up online access to most of their accounts to allow me to easier help my parents. Shhhh, don’t tell — it’s against most online user agreements.

For those of you dealing with a loved one with dementia, please know that my mother was very resistant to turning over these reigns. To this day she doesn’t recognize her limits and I set up a small checking account so that she could still keep a checkbook in her wallet and write checks if she so desires. My father helped me navigate most of their accounts. I hope that you are able to at least get access to the information you need. Once you have gone through the process of trying to be a caregiver and running into roadblocks, you will start looking at your own life and affairs. If someone needed to step in and help you, could they?

This topic seems to be such a cloaked conversation. I do see media outlets covering the topic more as many in the media are dealing with issues in their own families and are trying to bring light to this topic. I’m doing my job to shed light on this subject and offer simple solutions with MemoryBanc. Powered.