AARP’s Caregiving Story Campaign: Kay from Virginia

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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.” ┬áIt 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.

When will I stop believing what my demented Mom tells me?

carlyhostMy sister came to visit to help chase down my Mom’s medical issues giving me a break and allowing me to focus on my daughter’s foot surgery. The true sandwich generation dilemma — both Mom and daughter need medical attention and care right now.

My daughter is only 11, but had chronic foot pain due to an extra (accessory) bone that outlasted all the non-surgical options we pursued. She stopped dancing and gutted out soccer as the goalie to help her team who lost two players due to broken bones. Surgery was a few days ago. Thankfully, it went well and I just finished spending the last two days as foot-maid (pun fully intended).

My sister just returned home yesterday and my Mom just called telling me her “cupboard is bare.” Not only does logic tell me she still has plenty of crackers and chips, she is in a community that serves every meal and that also has a “store” where she can pick up bread and peanut butter and jelly if she really is out of supplies.

However, I immediately feel guilty and assume my Mom is reporting facts. I can’t stop the urge to believe my Mom. I’m not sure if I ever want to lose that ability because it will mean I know my Mom is lost to me for good. Reflected.