My Spouse Has Dementia

You will never regret being kind to your spouse.

In a strong marriage, the sexual expression of love is the sinew that ties two hearts together and forms the kind of bond we depend on to get us through life's greatest challenges. As we age, the intensity of physical passion burns more ember than flame, but the bonds of love can be just as strong, even stronger, than ever.

Alzheimer's forces a wedge in the relationship. Caregiver stress is more devastating than you imagined. Frustration and Anger barge into your home and wreak havoc in your daily world. Anticipatory grief destroys your dream of the future.

Whether the dementia caregiving journey takes a few years or a decade or more, love doesn't fade from a strong marriage. The challenge is learning how to express that love in a new way.

After marrying more than 150 couples, publishing 3 historical romance novels with Harper Collins, and being married for 41 years to a man I loved deeply, I've learned some things about weddings, romance, intimacy, and dementia. I share a few of those thoughts in this episode.

Mentioned in the episode:

You know that caring for a loved one with Alzheimer's or other form of dementia can leave your mind confused, your body exhausted, and your spirit depressed. Yes, and what if I said there's something simple that might help you survive the caregiving journey? Yes, and what if I said this something is fun and free?

I'm talking about improvisational theater, "improv" for short. Imagine a group of people on stage, making up a comedy skit as they go along. No experience required for what I'm suggesting in this episode.

I've been talking with my nephew, Stephen Gillikin, co-founder of an improv group in Los Angeles and founder of a virtual improv class, about how improv techniques might help family dementia caregivers "enter the world" of their loved one.

"None of the books I read conveyed the ugly truth about caregiving: that it can destroy you – even kill you – if you go about it wrong."

That's just a taste of the hard-hitting reality conveyed by author Martin (Marty) Schreiber in his memoir, "My Two Elaines." Elaine was Marty's highschool sweetheart and wife of 62 years when she died from Alzheimer's.

As a former governor, Marty was prepared for the political responsibilities focused on leading the State of Wisconson. As a loving husband to a wife with Alzheimer's, he floundered.

Marty talks bluntly about several aspects of caregiving:

• the benefits of being told the truth of a diagnosis
• the unique stress a husband faces when he is the caregiver
• how asking for help can challenge a man's masculinity
• how critical it is to enter your loved one's world when trying to communicate
• the inevitable anger and frustration of trying to fix the unfixable
• the danger of trying to cope with alcohol -- what Marty calls, "the caregiver's poison."
• self-reflection, regrets, and the importance of sharing personal caregiving stories

This is a love story. Sad. Strong. Encouraging.

For 13 years, John Scully visited his mom in a nursing home. For the last 8 years of her life, she couldn't talk. So he had other conversations. And they became a book. It's called Visited Mom Today: Conversations Through the Lens of Alzheimer's and Dementia.

Mentioned in the podcast: