My Spouse Has Dementia

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

Your spouse has Alzheimer's. You know he - or she - shouldn't be driving. When you bring up the subject, you hear some version of, "That's ridiculous! I know how to drive a car." 

He might be right. He might still know how to drive a car. The problem is that he shouldn't be driving a car. 

No, this isn't a simple matter of semantics. Your spouse may still have the muscle memory to operate a motor vehicle. That doesn't mean he remembers the rules of the road. At some point, the muscle memory fades, too. Plus, medication may cloud both physical and mental functions. 

Getting your spouse to give up the car keys is traumatic for both of you. For weeks, my husband stood at the window and stared at the spot where his car used to be. I watched from the kitchen, knowing we were both at the threshold of a major change in the progression of the disease. 

In this episode, I share some of my own stories, as well as those of my friends. 

Some states require that when a doctor diagnoses dementia, the doctor must report the diagnosis to the state's department of motor vehicles. There's an article about that on MedicalNewsToday.com. 

Not long ago, a personal injury law firm in West Virginia contacted me about a guide the firm had created titled "Dementia and Driving." The guide talks about when a person should stop driving. It gives a list of things to watch for and includes additional links you might find helpful.  

Alzheimer's robs a person of so much. When it comes to driving, you might feel that you're robbing your loved one of even more. It all comes down to your need to be observant, patient, realistic, kind, brave, and responsible.

There's so much at stake. 

Mary Lou Falcone became a caregiver when her father had a massive stroke. She was 10 years old. The experience prepared her for the day, many years later, when her husband, illustrator and 1950s rocker Nicky Zann, was diagnosed with Lewy Body Dementia (LBD). 

In her memoir, I Didn't See It Coming: Scenes of Love, Loss, and Lewy Body Dementia, Falcone talks about what it was like to have an international career, to be thought of in their social circles as "the golden couple," and then to face the cruel reality that the love of her life had an incurable, fatal disease.  

Falcone talks candidly about three of the most challenging aspects of caring for a spouse with dementia, especially LBD: incontinence, violence, and hyper-sexuality. 

She also shaes the challenges she faced in writing the memoir, particularly when her second editor guided her to reveal the deeply buried emotions that resulted in this personal and poignant story, a winner of the 2023 NYC Big Book Award "Distinguished Favorite" in the category of Caregiving. 

Falcone also shares an overview of the differences between LBD and Alzheimer's Disease, why it can be difficult to get a diagnosis, and her ongoing work as an advocate for LBD awareness. 

The interview portion of thie episode was originally recorded for a show on YouTube called "Page 1." Here's the link to see the video version of this podcast episode. 

The video version on YouTube includes a PSA created to honor my husband's memory. In the PSA is a photo of me and my husband at a wedding reception in 2017. Several hours after that photo was taken, he was rushed by ambulance to the ER. He had choked on a piece of meat. 

The PSA also includes a brief video I took one morning while my husband and I were hiking around a local reservoir. 

For more info in Mary Lou Falcone and her book, see her website: MaryLouFalcone.com  

Sometimes, the dreams we carry inspire us. Then life changes, especially if your spouse has dementia. Now, those same dreams weigh us down… and we have to let go. Advertisements for some memory care facilities and some dementia service agencies don’t help. I find those ads insulting. 

You’ve read the message in blogs and brochures.  Depending on where you and your spouse are in the dementia journey, you’ve probably had at least one person from a memory care center or caregiving agency look you in the eye and say – as though they understand exactly how you feel – that they stand ready to take on the burdens of dementia care so that you can go back to just being his wife.  To which I say: What do they think marriage is? One big date? … That when things get tough, the spouse will bail? 

My rant is NOT about whether a caregiver is physically weak or strong, emotionally delicate or resilient. People are different. Their experiences are different. Their physical capabilities are different. 

My rant is NOT about whether or not you care for your spouse at home or you place your spouse in a memory care facility.  People are different. Their home situations are different. What kind of support they have is different. 

My rant is about advertising that assumes spouses don’t want to take care of the personal needs of their spouse.

This is a cautionary tale about a dear friend, a family caregiver who died first. She was in her mid-70s, a few weeks younger than I am. In mid-April, she had a stroke. She died mid-July, just as I faced the one-year milestone of my husband's death from Alzheimer's. Her death emphasized the reality of caregiver stress and the importance of caregiver support. 

You may not have time to listen to this episode now. You may start and find it triggers something personal and painful.

So here's the one piece of advice I share in the epiode. I hope you will embrace it. My neighbor said this to me last week as I sat on her deck, crying:  Keep living until you feel alive again. 

My husband died last summer. He had Alzheimer's. I’ve experienced a lot of “firsts” without him: his birthday, my birthday, Halloween, Thanksgiving, Christmas, New Years, and most recently, Valentine’s Day. Some of those days passed without incident. Others…not so much. 

It's March. I survived the first holiday season alone. I know there is no end-point to grief. We caregivers learn to carry it. We balance it between sad songs and sweet memories. We treasure the grief. It's proof that we had our own moment of Camelot. 

To help me through this year, I’ve chosen three "guidewords," an important ritual I do every January. For 2023, my words are: Emerge, Share, and Contentment. Each one tosses me out of my comfort zone. And each one gives me strength. 

In this episode, I talk about those three guidewords and about surviving my first holiday season alone.

I hope you don't need this information. But chances are good you know someone who does. If so, please share this episode. The best thing we caregivers can do is share our stories. 

Not feeling festive? No surprise. For those of us caring for a spouse with Alzheimer's or other form of dementia, December can be a cruel month. While much of the world is joyful. We're sad. It's part of the journey we're on. Today is the Winter Solstice. Light is returning to the Northern Hemisphere. In ancient Rome, this marked a time to celebrate and give gifts. The "wow" gift was a piece of the life-giving sun. The wow gift was a candle. 

Read about the poem "No Matter How Dark" in the book "How Far Light Must Travel" by my friend, the late Judi K. Beach. Be inspired by her encouraging words. 

Chose a word that represents a spiritual gift, something you want to give to others and something you want to receive for yourself. My spiritual gift to you, and to me, is Contentment. May you find peace in the caregiver's struggle. 

Are you caring for a spouse with Alzheimer's?  You need to know that hope, like optimism, can strengthen your resilience or distort your reality. Hope can also be the key to your surivival. 

My husband died four months ago. In caring for him, I journeyed from confusion to determination, from anger to cynicism, from defiance to acceptance. I shunned hope. I grasped for hope.  Only when forced to live in the moment did I find peace. Only then did I learn that NOW is where hope lives. 

This episode includes a list of ways someone can help a family caregiver.