My Spouse Has Dementia

Can Improv Help Dementia Caregivers Survive?

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 suggesti...

My Two Elaines - A Governor's Dementia Caregiving Memoir

“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...

A Husband Videos His Dementia Caregiving Journey

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...

Visited Mom Today - An Interview with Author John D. Scully

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....

How Did I Survive? Truth, Strength, and Walter Cronkite

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 t...

The Caregiver You Love Needs Help!

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 ...

Tall Ships and Facing Death - Victoria Burdick, Hospice Chaplain, Ret.

"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 nig...

Anticipatory Healing - What Family Dementia Caregivers Need to Know to Survive

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 ...

Wandering and the Bring Me Back Home Program

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 a...

The Dilemma of Dementia and Driving: Taking away the keys?

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,...

"I Didn't See It Coming" - Interview with LBD caregiver Mary Lou Falcone

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 th...

Illusive Dreams and Frustrating Dementia Care Ads

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 ...

My Caregiver Friend Died First

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 p...

Why Join a Support Group? To Survive!

My First Holiday Season Alone

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 ...

Not Feeling Festive? Light a Solstice Candle

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 "...

Alzheimer's and Hope - A Gift or A Curse?

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 inc...

The Power of Grief, Community, and a Tree

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.

Death and the Funeral

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 Celebr...

Hospice - Help When the End is Near

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.

Sudden Falls and Rapid Changes

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.

Mistakes and Dementia Self-Care Rituals

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.

Our Loved Ones - The Power of the Stories We Tell

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.

Alzheimer's and Vision Changes

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.

Why You Need a Medical ID Bracelet

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.

Lost in the Front Yard

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.

Using the Word "Alzheimer's"

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.

Getting the Diagnosis

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.