My Spouse Has Dementia – Details, episodes & analysis

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.

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.