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: 

John van Gurp's YouTube channel: John and Heather's Dementia Journey

Be sure to listen to episode 28 about how using improv can help caregivers enter the world of their loved one. Let me know if you'd like to be part of an online improv class where all the participants are dementia family caregivers.

I'm working a future episode about how it feels to have to care for a family member with dementia when you would never refer to that person as your "loved one." If that's you, please contact me. Email: [email protected] 

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.

To read more about what I think could genuinely help family dementia caregivers, read the associate blog post on my main website,  ZitaChristian.com

Mentioned in this episode:

Stephen Gillikin, Actor, Improv Teacher, my nephew

International Women's Podcast Awards

(Mentioned because out of almost 700 entries from 35 countries around the world, My Spouse Has Dementia was short-listed for the 2025 annual awards!)

Episode 27, interview with Marty Schreiber, author of My Two Elaines

In case you're wondering, I generated all of this content. Not AI.

“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.

Martin Schreiber's website: My Two Elaines

If you're caring for a spouse with dementia and are finding it hard to tell family and friends what you're going through, send them this link to  Episode 23: The Caregiver You Love Needs Help

At part of their daughter's wedding ceremony, Heather was supposed to give their daughter a necklace that had once belonged to Heather's mother.  Heather's husband, John, talks about what it was like when he and his daughter realized Heather had not brought the jewelry. "Our daughter actually took me aside before the ceremony and said, 'Dad, I've been wondering about something and I have to ask. Does mom just not care anymore or does she have dementia or something?'"

In four short years, John Van Gurp watched his loving wife, Heather, fade from a beautiful, vibrant, creative, multi-tasker to a woman who can no longer dress herself, feed herself, or manage personal hygiene. Her decline has been fast. 

Like so many others in his position, John hoped his wife had been afflicted with something manageable. But after assorted labs and scans, the diagnosis was primary progressive aphasia, a form of dementia. 

For his own well being and to help other family dementia caregivers, John created a YouTube channel where he could post videos about the experience of caring for Heather.

John came across episode 21 of this podcast where I shared a concept I call "anticipatory healing." He mentioned it on his blog. The internet brought us together and, in no short order, John agreed to be my guest on the podcast and talk about the journey he is taking with Heather, his wife of almost 40 years. 

John talks candidly about the challenges of managing what had always been Heather's tasks. "Suddenly I'm responsible for all the linens in the house, all the bedding and blankets and cloth stuff. I have no interest or, or knowledge or expertise in cloth stuff like curtains and pillows. Heather loved this stuff. She used to decorate with pillows and blankets. And I remember thinking once, Honey, you've left me. You've gone to live in your head and you didn't leave any instructions. ... I'm getting emotional here thinking about it, but you know, ... we didn't have a chance to talk about it. And you know, that's tough. That stuff is tough. The handover. Yeah, the handover is, is awfully hard." 

You can watch videos of John and Heather's caregiving journey on his YouTube channel. Just search for "John and Heather's Dementia Journey."

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:

VisitedMomToday.com - The website of author John D. Scully

 Alz Authors, a podcast that interviews authors of dementia caregiving memoirs.

I grew up listening to Walter Cronkite. He signed off each nightly newscast with “And that’s the way it is.” As a kid, I was often alarmed by the news. But I reasoned that if Walter Cronkite respected me enough to tell me the truth, then I could handle it. Yes, my reasoning was flawed. Mr. Cronkite didn’t know me. 

In this episode, I share deeply personal stories from my childhood. That's when my first caregiving experience really began. Both of my parents had enough confidence in me to tell me the truth, even at five years old. 

Still, decades later, Mr. Cronkite's respect and my parents' confidence helped me find the resilience I needed to care for my husband. He had Alzheimer’s. Today’s family dementia caregivers need someone who respects them enough to tell them the truth. Caregivers need the truth to make a plan -- for minimize the chances of falling, to recognize what might be a urinary tract infection (UTI), to serve food not likely to cause choking, to adjust the household budget to hire a CNA (Certified Nursing Assistant), to ask the hard questions about the real costs of memory care facilities. Sometimes, we can plan only one step at a time. But one step IS progress. 

I hope that in hearing my childhood story, other caregivers will be able to look into their pasts and recognize times when they found strength. Now is the time to draw on that strength. We need to survive. 

This episode is a message for the caregiver to send to someone else, someone who doesn't know, or doesn't understand, the stress the caregiver is going through.

I liken that stress to driving alone, in an old car, up a steep mountain on a narrow, twisting road with no place to pull off. There are no guardrails. The caregiver's spouse is at the top of that mountain, dying. 

 I created this episode especially for the caregiver whose spouse has Alzheimer's or other form of dementia. While statistics vary, approximately 40% of family dementia caregivers die first -- meaning, the caregiver dies before the person with dementia dies. Stress can be deadly. 

If you are not a caregiver, but you love someone who is, you might think of the caregiver as a strong person, someone who can "handle it." Don't be fooled. Many caregivers are simply too proud to ask for help. 

In this episode, I share some of the stressful situations I confronted in caring for my husband. He died of Alzheimer's. I also offer ways to help the caregiver you love. 

I also invite listeners to contact me via email or voice mail (go to https://myspousehasdementia.com) and let me know what obstacles you face in trying to help the caregiver you love. 

"Between now and dead, you've got a purpose. Don't be timid."

Before she retired as a hospice chaplain, Reverend Victoria Burdick faced her own death several times. In her 30s while in divinity school, she wrote a series of essays she called "Lunch with Heron." In one of those essays, "The Tall Ships," she recounts the breast cancer diagnosis that led her to the Festival of the Tall Ships in Europe, and her harrowing ordeal crewing on a ship with a captain and crew who were rarely sober. 

One night, exhausted after an 18-hour shift at the helm, and weak from the cancer drugs she was taking, Victoria, mother of two young girls, came face-to-face with what was now an 8-week prognosis. Her self-determined transformation empowered her to survive. The day she pulled her rigging knife on the captain--the day she caught him molesting his young daughter-- confirmed the strength growing inside her. 

Victoria is descended from seven generations of sailmakers, seafarers, and what she proudly terms "warf rats." Growing up on the water prepared her for the ordeal described in the book and movie "The Perfect Storm."  Yes, she, her father, and other members of her family's crew were on one of the ships caught in that storm. 

It comes as no surprise that when faced with the diagnosis of cancer, she sought to do battle on the deck of a ship, a place where she had once before beaten death. 

Victoria personifies courage and the determination to survive, two qualities needed by those of us caring for a loved one with Alzheimer's or other dementia.  

The "Lunch with Heron" essays are not published. Victoria Burdick graciously agreed to share one of the essays here with the hope that her experience might inspire others. You can learn more about her and her work at her  website: AuthenticCeremony.com 

You've probably heard of anticipatory grief. Unbidden, hidden, and immediate, it comes with the diagnosis that your loved one has Alzheimer's. Depending on when the diagnosis was delivered, it can be several years or more before your loved one dies.

Something in addition to anticipatory grief can also happen along the way, especially in those devastating late years of the disease. I call it Anticipatory Healing. It's connected to grief. 

My husband had Alzheimer's. I'm publishing this episode on the second anniversary of his death. In these last two years, I've come to see my grief in three stages: 

1. React:  This is the six-month, zombie-like period right after my husband died. I didn't have the mental energy to handle anything more than what was absolutely necessary -- the funeral, Social Security, insurance, probate, and more. I saw the fool's errand in all that wishful thinking I had indulged in when my husband was first diagnosed. I felt a new kind of empty. 
2. Realize:  Over the next year, the truth of my new reality settled on my shoulders. I had already absorbed all of the routine tasks my husband used to handle. That happened several years earlier. Now there was a finality to those tasks. I learned to carry grief without it closing my throat or stinging my eyes. I needed to think about my future...because now I realized I had a future. 
3. Reflect: I'm here now. Looking back, I can see how countless little visions of the future shaped the belief that I would survive. Those visions were not obvious! Some were born from frustration. Others from determination. Others from imagination. Hidden in those visions and experiences, I discovered inner strength. I learned to set wise priorities. I found joy, deep joy, in loving memories. I accepted my new life. In doing so, I anticipated that my heart would heal. 

For a person with Alzheimer's or other form of dementia, wandering can be dangerous. If that person isn't found within 24 hours, the chances that he or she will suffer serious injury, even death, increase dramatically. The family dementia caregiver will likely experience serious stress until the loved one is found. 

According to the Alzheimer's Association 6 in 10 people with dementia will wander. A person with dementia might lose the ability to recognize familiar places and faces. Losing that ability can happen at any stage of the disease.

Connecticut has partnered with the Alzheimer's Association to offer a state-wide registry to help police and first responders locate people with dementia who have wandered. The program is called "Bring Me Back Home." 

When you register your loved one on the program, you'll be asked to complete a form. It asks for a lot of information. Even if you don't live in Connecticut, download the form. Pay attention to the information the authorities find helpful in finding a person who has wandered. 

The Senior Services Department of UPMC (Universithy of Pittsburgh Medical Center) also has a form that can help first responders if your loved one has wandered. That form is called "Wandering Behavior: Individual Profile." You can download it for free, too. 

If you're a family dementia caregiver and you're suddenly asked to provide information about your loved one, you might be under too much stress to remember everything in the moment. So download one, or both, of these forms. Start filling them out now. Have the information handy should you ever need it. 

Mentioned in this episode: 

Alzheimer's Association 

Register to the Bring Me Back Home Program

UPMC - Wandering Behavior: Individual Profile