I Spent a Decade Taking Care of My Father. Here’s How I’m Writing a New Chapter of Hope After He Passed

This is the fourth article in a 4-part series exploring heartbreak, healing, and the lessons we can all learn from life’s transitions, triumphs, and setbacks. The series will dive deep into how we grow through it all, leading up to our special coverage of Maria Shriver’s new book, I Am Maria, which you can preorder HERE.

Over the course of a decade, I met Dad’s care with grace, honor, and his infectious sense of humor. Celebrating his living and loving was the Leiner way. He’s been gone for two months, and my heart and car are still on auto-pilot. In that blissful split second, when I think I will visit him, I forget and then remember. There is joy-tinged grief in letting the “before” memories flood back into focus. I am realizing how I kept them at bay to be able to meet him in the moment.

Dad was a retired “Mad Man”, with nearly three decades at the same ad agency. He worked on breakthrough pharmaceutical launches with top docs around the world. His brilliant brain faded from Alzheimer’s before our eyes, as the research raged on. 

When he forgot the familiar route from my sister’s house, my siblings and I knew it was time for an intervention. The neurologist who diagnosed his MCI (mild cognitive impairment) never shared any parting advice about best practices, dietary changes, Dad’s safety, or even a book or website with us. There was no whiff, word or single hint about what caretaking might look like.  

We learned to live through each change, navigating the delicate balance of our own households and his growing needs. Each time we averted a crisis (and there were many), I felt the need to shout our learnings from the proverbial rooftop. “Quick, tell the others!” Books and websites are helpful, but much more felt particular to us, our family, and his ever-changing needs. 

So, I compiled many learnings over those ten years. I share some here in hopes they may be a comfort. As I look back, I find beauty—and the peace to move forward into a new chapter of hope. 

Call in the Troops

The first we did was cobble together a family team. Then we brought in someone who helped Dad tidy and check in on him a few hours a day. Dad was prescribed a patch that was meant to slow the disease. It needed to be placed out of his reach and changed every 24 hours. He affectionately called them, “The Patchers”. Finding help is not easy and quite costly. Explore what insurance may cover, if there are local daycare and meal services programs. I wish we had known this sooner.

Think of New Systems

When his cell was left unanswered and the landline was our only connection, we swapped it for a photo phone. We programmed big buttons with our pics to autodial. We put outfits in a basket so he knew what to wear each day. These work, until they don’t and you then you create new systems.

Consider the Wishes

Dad wanted to stay in his home until he could not. While his memory was still sharp-ish, we had hard conversations. “The simplest pine box, please. Nothing fancy,” he said. He gave us permissions and passwords. We talked about his will and finances. We put a limit on the amount of cash he took from the bank for pocket money. Preserving his autonomy and dignity were non-negotiables.

We named a power of attorney and healthcare proxy. In New York, a MOLST (Medical Orders for Life-Sustaining Treatment) is co-created with a physician. This hot pink paperwork and meds list traveled with him everywhere. We updated it often and kept copies on all of our phones. Find out what works in your state. Shockingly, he was sent by ambulette alone, many times, arriving at the hospital before family.

Make It a Home

We moved Dad to an assisted living apartment and made it as warm and familiar as possible with his art, furniture and piano. We brought the party to Dad. From Fudgey The Whale birthdays to bagel bash holidays his life was a celebration, replete with balloons, Ray Charles playlists, grandkids and grand dogs. We read to him, created photo albums, and enjoyed picture books and stories.

Look to the Wipe Boards

The wipe board in his home and hospital room were headquarters for the shorthand we wanted him and others to know. We jotted down the critical: I have dementia. I am hard of hearing and wear hearing aids. Call me Neil.

Have a Hospital Action Plan

The hospital staff caring for Dad was not trained or savvy in caring for memory loss or elders. We took turns spending the night and communicated on his behalf. Everything from meal orders to advocating for his level of care and comfort was on us. Having someone living close by or a plan of action can be very helpful. 

Research Palliative and Hospice Care

It can be incredibly worthwhile to become familiar with healthcare services aimed at optimizing quality of life and reducing suffering. This is life giving, especially with a terminal illness, and these services also take care of caretakers too.

Find the Joy—for Now and Tomorrow

Finally, take care of you, too. Find breaks and laughter. Befriend the anticipatory grief you’ll meet along the way. Most of all, love what is left.

There is so much beauty and peace in looking back as I look forward. Folks remarked, “he must have been a great Dad” in witnessing his care. Caring for him alongside my siblings was the honor of my lifetime. It's what I'll hold moving forward into tomorrow.

Barri Leiner Grant is a certified grief coach and the Chief Grief Officer™ of The Memory Circle. Grant has studied with the leading names in the grief space, including grief certification and education with Claire Bidwell Smith, David Kessler, and Dora Carpenter. Learn more at thememorycircle.com.