Gurney Williams shares the advice he wishes he had received when his wife, Linda, began showing signs of dementia

By People Staff
Updated April 01, 2016 12:00 PM
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Credit: Allison Michael Orenstein

In her new memoir, Where the Light Gets In: Losing My Mother Only to Find Her Again, out April 5, Kimberly Williams-Paisley details how her close-knit family dealt with her mother Linda Williams’ dementia, from mourning the loss of the woman they knew to constantly worrying about whether she would hurt herself – or others.

Paisley’s father, writer and editor Gurney Williams, who cared for his wife round the clock until he and his children placed her in a long-term care facility in 2012, shares the advice he wishes he had received when he was “20 years younger and had no clue I’d have to deal with dementia,” he tells PEOPLE. “Now I know that preparation back then would have lessened the burden weighing on my family in recent years. My hope is that readers at any age – including those recently diagnosed and their caregivers – will act on some of these ideas while it’s still possible.”

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“Enjoy each other while you can. Travel. Slow down. Savor your time together.” That’s what a neurologist told us on the day of Linda’s diagnosis. And we would do all of that. But I know now that the rich but arduous years before she entered long-term care would have been easier if we had started earlier to get the support we would need. Here’s the checklist I wish we had used years before the first symptoms of her dementia appeared when she was about 60.

Take care of your heart for the sake of your brain.
Soon after the doctor delivered the bad news, a psychiatrist told us to walk briskly for half an hour a day to ward off depression. That’s a good prescription for most people of any age to prevent cardiovascular diseases like stroke or heart attack. But growing evidence reveals that exercising and other good-health habits may also lower the risk of dementia or slow its progression. It’s too bad we didn’t stroll earlier and more often before Linda was unable to walk. Click here for lifestyle tips for a stronger brain.

Talk over plans and preferences for the future.

Put them on paper. At minimal cost, a lawyer drew up wills and durable powers of attorney for us, essential documents for anyone who might face dementia. Other important papers– a health care proxy and a living will – cost nothing. They spell out who will make medical decisions for you if you can’t, and detail end-of-life wishes. (For example, Linda and I refused “heroic measures” to keep us alive past our expiration dates.) To find an attorney near you for wills and other related matters, call the Alzheimer’s Association at 800-272-3900. For more information on crucial paperwork, click here. We wish we had added one other page to the file.

Write a letter to close friends and family.
Offer reassurance that you would understand if they could not fulfill all of the preferences you’ve spelled out. Include a message of love and gratitude. Your words will carry more emotional weight and solace than any of the legalese in wills and medical directives.

Prepare now for the expenses of aging.
Already today, end-of-life costs for patients with dementia are substantially larger than for those with cancer or heart disease. On the day of diagnosis, we had no plan in place to meet our upcoming expenses. For us, paying for long-term care required immediate efforts to save, pool resources and reduce living costs – in part by refinancing our house. Click here to explore the full roster of charges and fees, and what federal programs can and can’t offer to lighten part of your financial burden.

As you take these steps, minimize fear.
Linda’s disease spawned anxiety in our family and friends who worried when they routinely misplaced car keys or reading glasses, or struggled to remember someone’s name. Much of this anxiety is misplaced. Click here to learn about normal changes in brain function versus signs that might indicate you should check in with a physician. But remember that many symptoms of other treatable maladies mimic dementia.

If you have been diagnosed with dementia:

Reach out to family and friends for help as soon as possible.
Because Linda at first wanted to keep her condition a secret from most people, it took months for us to develop an informal support group of volunteers to counter the challenges facing us. Like many families, ours is scattered through several states. We should have learned how caregiving tasks could be distributed, even at long-distance. Click here for a concise handbook we wish we had read, including a list of 17 different essential responsibilities too often shouldered by just one person.

Write or dictate your life story and share it generously.
On the end-stage “memory care” floor where Linda lives today, many residents who can no longer talk still appear to enjoy hearing about times long past, or swaying to the lilt of classic hit-parade songs. I wish we had devoted more time in the years-long early stage of Linda’s dementia to collecting her long-term memories so that when her brain faltered we could remind her of a life well lived. It helped us as her disease progressed to gather enough of our own memories to fill a book. She will never be able to read it. But it’s comforting evidence that her brave and buoyant spirit survives in each of us.

Gurney Williams is a writer and editor. He is the father of Kimberly Williams-Paisley, Jay Williams, a professional firefighter and beekeeper, and actor Ashley Williams. He has five grandchildren.