​End-stage Alzheimer’s Proves Healthcare Systems Are Toppling

By Lonna Whiting

lonnawhiting@gmail.com

When we talk about the healthcare system being broken or failing us, what does that actually mean?

It’s a question I’ve been grappling with since 2013 when my mom was diagnosed with early-onset dementia. Almost immediately after her diagnosis, my family was inundated with calls, emails, paperwork—all questioning the validity of her illness; the validity of her basic life needs.

At age 61, she was too young to receive Medicare benefits and still too functioning to qualify for Social Security disability.

She had a little too much money for the Medicaid waiver that would secure her adequate memory care housing, yet she didn’t have quite enough to pay for in-home care and the mortgage on her house.

We had to spend down her assets and money, and essentially make her very poor before decision makers could check a box on a form on a sheet of paper somewhere in Texas that would confirm her infirm.

Advocating for My Mom Became a Part-Time Job

I carried Power of Attorney papers with me wherever I went in case I had to prove to someone that I could make decisions on her behalf. I had a list of phone numbers for Cass and Clay County social workers, an elder-care ombudsman, Alzheimer’s Association case workers, chaplains, assisted living directors, neurologists, counselors, and many, many nonprofit organizations.

In all, it took me and my brother two years to get her adequately settled in at Ecumen, the place she’s called home now for almost a decade.

Once my mom turned 65, however, all that paperwork needed to be revised, re-reviewed, refiled and accepted by state and federal authorities because she’d made it to that magical age when Medicare kicked in. Our county case workers handed over a thick envelope and said, “Just sign the places that we’ve highlighted. Everything will be fine.”

It was the first experience (and the only one) when the “system” seemed to work in our favor, but that’s only because we’d done our homework and prepared ahead of time in anticipation of providing adequate proof that my mother, in fact, still had dementia and wouldn’t be getting any better.

My Questions Since Then Have Been Left Unanswered

What happens to people who don’t have loved ones or friends in their lives to anticipate these types of transitions within the system? Who do they turn to that we can trust has their best interests in mind? Who cares for the anonymous Alzheimer’s resident?

Seven Years Later, the ‘System’ Hasn’t Changed

Just like that, I’m navigating the end of my mom’s life alongside the support of my partner Kevin and many friends.

By some miracle, she qualified for Medicare-covered hospice services in the fall of 2020, until she suddenly no longer qualified and was discharged from services in February 2022. The reasons are complicated, which I outline in my article “When hospice abandons patients,” on Medium.

To cite my article, the reasons for her hospice discharge go like this:

• Because she was now chair-bound, she was no longer a fall risk.
• Because she had optimal vitals, she was not clinically close enough to death.
• Because she’d actually come off some medications for behavioral issues, they considered her improved.
• Because she was nonverbal, she wasn’t acting out or swearing at staff anymore.

Of course, Medicare looked the other way when considering she can no longer hold her own head up, talk, sing, or express much emotion at all. She is completely dependent on help from others, yet the help she receives from others is now extremely limited due to Medicare rules.

Watch: Lonna Whiting explains what happens when someone is live-discharged from hospice at end of life

I consider America’s healthcare system to be a part of our larger failed state.

This failure to support families like mine has also caused me to lose the joy, peace and dignity in helping someone I love deeply die.

Instead of holding my mom’s hand and rubbing her neck with essential oils, I’m sending emails to senators and state and federal leaders, pleading with them to at least acknowledge there’s something wrong with how we care for sick people when we remove the services they need the most, particularly at the end of life.

Instead of listening to The Beatles, whispering “I love you so much, Mom,” into her ear, helping her eat dinner and extra dessert, I’m worrying about what’s going to be taken away from us next.

Ultimately, she will be taken from me at some point very soon, but what’s it going to take for this to not happen to another family enduring both grief and the loss of care support?

It may take examining this failed “system” beginning with the guts. It’s going to take a lot of hard work. It’s going to take all of us who believe health care is a human right.

I’m ready to fight. Are you?

Lonna Whiting is a writer and the owner of lonna.co, a marketing and communications agency. Follow her on Instagram, Facebook, LinkedIn and Medium.