How To Dementia: When the Worst Happens

Dementia doesn’t come with a how to manual, so I wrote one - On the Frontlines: An Unpaid Carer’s Adventures in Early Stage Dementia.

Like quicksand, it is anything but quick. It creeps into the family, and can be masked by grief, loneliness, and confusion. For me, Dad’s decline after Mom’s death, compounded by isolation during Covid, and a toxic relationship in his never ending quest for love. Dementia is a gut punch, not just for the person diagnosed, but for everyone involved.

The Early Signs: Beyond Memory Loss

Hollywood portrays dementia as forgetfulness, but that’s just the tip of the iceberg. In reality, it’s a slow erosion of logic and personality. My dad’s irrational decisions and erratic behavior were initially dismissed as an attempt to buy love from a woman intent on spending his money. It wasn’t until his bank fired him and he lost control of his finances that the harsh reality of his cognitive decline hit home. According to the Alzheimer’s Association, over 6 million Americans are living with Alzheimer's disease, and this number is projected to rise to nearly 13 million by 2050.

Here is an interactive infographic on stages of dementia from 美国加州大学尔湾分校

Navigating the Emotional Minefield

My book is the discussion I wish I had had when navigating early on. It takes lessons learned from The Fletcher School at Tufts University on Low Intensity Conflict, applying them to stay ahead of someone for whom standard rules of logic no longer apply.

Adding to the complexity was becoming the unpaid carer for a parent who I never felt cared for me. My dad was a fleeting presence in my life, often more a source of frustration than comfort. When dementia clouded his decisions and he began seeing me as the enemy, it was a cruel echo of my teenage years. Many carers face this struggle – moving past old grievances to handle present responsibilities.

The Endless Relentless Grind

Let's not get into the politics of care and the lack of infrastructure supporting those of us who end up managing family or friends diagnosed (or not) with cognitive decline. There are approximately 15.7M of us now and that number will grow as we age beyond our mind's ability to thrive. Someone diagnosed with dementia can have 7-10 years to live.

It is a long time to live when every day can be a battle. In the space of a year, my Dad and his girlfriend blew through $1M before she exited (hopefully for good) stage left. The book offers creative and pragmatic advice (that hopefully is also funny) that goes beyond the usual useless BS about "taking care of yourself" or "setting boundaries." Yeah. Right. When the house is burning, having someone tell you to "breath through the stress" is nuts.

Finding Meaning in the Madness

When I first started writing On the Frontlines, I thought it would be a great procedural serial crime novel. Each moment I went through in protecting my Dad against himself, felt like an episode of Law & Order.

Writing has been cathartic and hopefully the tips about legal, financial and other protections will be a lifeline for others in the same boat.

Dementia caregiving isn’t about finding peace; it’s about making peace with chaos.... and finding someone (me!) who will make sick jokes about it. Here are three tips from the book.

1. Pay Yourself for Caregiving

I have trouble with the phrase “Unpaid Caregiver” as someone who grew up in a system where pay = value. Why is it I might pay a home health worker or cleaner or other, but we haven’t normalized paying ourselves for the effort of caring? Many families that don’t have the resources my Dad had, end up working less or leaving jobs to deal with the care needs of their dementia person. Can you afford not to be paid?

2. Plan Your Own Exit

Prepare for your own end-of-life with your family early and often. In the US, there is barely a system that allows you to contemplate end of life when there is a life-limiting diagnosis. There is nothing today for a cognitive-limiting diagnoses where quality of life, wealth and family dynamics can be destroyed. In the U.S., families pay out of pocket for 70% of the estimated $395,000 lifetime cost of dementia care, which includes unpaid caregiving.

Discuss with your loved ones what quality of life means to you and make sure your wishes are documented. This may include drafting advanced directives or exploring the legality of assisted dying, depending on your location.

3. Understand Love from a Legal Lens

My Mom stood by my Dad for 65 years until she died from cancer in 2020. It would have been her (and our) joy that Dad found someone to spend his life with. He cycled through multiple real and imagined love affairs (and continues to do so with someone I think is a bot). Even if his lusts were just an 80 plus year olds' reliving the lust of teenage hormones, no problem. In his case, he bounced $300,000 in checks, and otherwise drained his (and Mom's) savings at a wild clip.

When dealing with a loved one's romantic involvement, especially when they are cognitively impaired, you need to protect their assets and legal standing. This involves understanding local laws about trusts, marriage, common law marriage, and asset division. Your situation might not be as drastic as mine, but I bet you will read some things you didn't think of in the book.

More Tips

I priced the book cheaply because I want people who need help to get it. Even if you aren’t currently dealing with cognitive decline in the family, you will sooner or later. There are actions you can take now to protect yourself and your loved ones.

Buy the book, write a review. Share your own experiences or tag someone who might benefit from this book. Let’s start the conversation about what should happen before it’s too late.

Call to Action: Buy On the Frontlines and share your thoughts!