My Spouse Has Dementia

“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:  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.  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.  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. 

When tragedy reshapes your life, having a supportive community is key to your survival. Since my husband died of Alzheimer's three months ago, I've been in a cave of sorts, rarely leaving the house. My neighbors drew me back into the world of the living - with a tree.  For family dementia caregivers, grief and guilt can become interwined. This episode includes a simple, self-care ritual for the caregiver.   

From the time my husband was diagnosed with Alzheimer's Disease, my goal was to care for him at home. He died last month, at home, in my arms. This episode shares deeply personal details about the changes in our relationship, the loss of physical intimacy, the physical realities of death, the practical considerations of a funeral, and more. Mentioned:  https://www.myspousehasdementia.com  https://www.celebrantinstitute.org (Find a Life-Cycle Celebrant) https://www.marycoburn.com (Life-Cycle Celebrant) https://dinastander.com (Death Doula and Life-Cycle Celebrant) https://www.carmonfuneralhome.com (CT - green funerals)    

My husband died at home on July 19. From steady decline to dramatic drop to sudden nosedive, to death -- that was the pattern. I was prepared for some steps. Others blindsided me. Hospice helped both my husband and me in ways I didn't expect. 

Alzheimer's degrades a person slowly over a period of years. When a downturn comes, symptoms can escalate suddenly. As a dementia family caregiver, you need to know what that downturn could look like. Knowing can help you survive. 

Studies show that how the dementia family caregiver interprets her stress is key to her survival.  I'm sharing 3 rituals I created that have helped me.  I also share 3 mistakes I made in the early years of caring for my husband. He has Alzheimer's, late stage.   

Zita Christian shares three personal stories about her husband who has late-stage Alzheimer's. She talks about the importance of telling the stories of our loved ones before they are seized with dementia. She talks about why it's important for us to tell our own stories, too. 

Even if a patient with Alzheimer's has healthy eyes, the brain can distort what the patient sees. Depth perception changes, too, as does the ability to recognize common items. For an 81-year-old man whose mind tells him he's now in his teens or younger, seeing his reflection in a mirror can be alarming. 

If your loved one wouldn't understand or know what to do if the police called your home because you'd been in an accident, you need to wear a medical ID bracelet. With the right info, it alerts first responders that your spouse has dementia.  Check out LaurensHope.com for a variety of medical jewelry. 

More than 20 years ago, my husband successfully thru-hiked the Appalachian Trail. More recently, he took a walk in our small condo complex. When he was finished, he got frustrated because his key wouldn't unlock the front door. It wasn't our front door. 

The power of a name is not restricted to fairy tales. For the longest time, I couldn't bring myself to talk about my husband's diagnosis: Alzheimer's. When I finally faced the power loaded in that word, everything changed. 

There was a difference between the news I expected and the news we received. Hearing "Alzheimer's," our future suddenly crumbled. The disease affects everyone differently. Maybe my husband wouldn't forget who I was. Maybe he wouldn't forget where we lived. Maybe he wouldn't get any worse than he was now. Maybe pigs fly. I had so much to learn.