If you are currently caring for a partner or a family member with dementia, please know that support exists. Reaching for it is not a failure of love. It is an extension of it. Resources are available across many countries and organisations. Please do not carry it alone if you do not have to.
Most conversations about dementia are written from the outside. This one comes from someone who lived it with his wife for five years and chose to stay.
Ulrich Schaffer speaks with host Sanna about 56 years of marriage, what it cost and gave him to care for his wife Trudy through dementia at home, and the poems he has spent a lifetime writing toward. One of the rarest conversations in this series.
About the Guest:
Ulrich Schaffer is a poet, author, photographer and philosopher based in British Columbia, Canada. Born in Germany during the Second World War, he has published over 200 works in 10 languages. His recent English books include Book of Rights, With You Without You, and Handbook of Courage.
Key Takeaways:
- A marriage is not just two people. It needs a wider circle to hold it.
- Suffering, seen clearly, becomes one of the greatest teachers.
- Allowing someone their freedom, even when it risks their safety, is a form of love.
- The spiritual dimension of a relationship is what carries you through what the practical cannot.
- Caring for someone who is changing does not end when they can no longer name you.
Reading From the Episode:
Ulrich read from Indestructible, a prose poem about what difficulty is really asking of us. The closing lines:
"Perhaps it is only a disguised invitation to be indestructible, because I have not yet learned it to my core. It would not be the first time that the darkness opened up and flooded me with light."
Connect With the Guest:
Website: https://www.ulrichschaffer.net
Books on Amazon (worldwide): search Ulrich Schaffer
Books mentioned: Book of Rights, With You Without You, Handbook of Courage
Episode Chapters: (approx.)
[00:00] A Loss That Does Not Get Named. Sanna opens on grief for someone still present.
[02:10] It Is All in the Mind. Ulrich on a phrase from his eighteen-year-old self.
[04:00] Born in Wartime. A family lined up to be shot, and a life spent understanding it.
[09:30] Six Years and a Book of Poems. How Ulrich and Trudy found each other.
[16:00] When She Moved to Europe. Three years apart, and a marriage that held.
[21:00] The Last Five Years. Caring for Trudy through dementia at home.
[28:40] Her Freedom Was More Important. Letting someone risk themselves because that is who they are.
[33:00] Marriage as a Spiritual Matter. What was at the centre of their 56 years.
[40:00] Reading: Indestructible. A poem written toward the light that follows darkness.
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Resources:
Global Dementia Caregiver Support Resources
International Organizations
- Alzheimer’s Disease International (ADI) 🌐 alzint.org A global federation of Alzheimer and dementia associations in over 100 countries, offering education, advocacy, and links to local support services.
- World Health Organization (WHO) – Dementia Resources 🌐 who.int/health-topics/dementia Evidence-based information for people living with dementia, caregivers, and health professionals.
Country-Specific Support
- Alzheimer’s Association (United States) 🌐 alz.org 24/7 Helpline: +1-800-272-3900
- Alzheimer Society of Canada 🌐 alzheimer.ca
- Alzheimer’s Society (United Kingdom) 🌐 alzheimers.org.uk
- Dementia Support Line: 0333 150 3456
- Dementia Australia 🌐 dementia.org.au National Dementia Helpline: 1800 100 500
- Alzheimer’s and Related Disorders Society of India (ARDSI) 🌐 ardsi.org
For Caregivers Everywhere:
Many caregivers find comfort through:
- Local caregiver support groups
- Respite care services
- Community health centers
- Faith-based or cultural support networks
- Online caregiver communities and peer groups
