Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets. 

I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.

I'm today's host for an episode that will feature three voices, one of a partner of an individual with primary progressive aphasia, CeCelia Zorn, who also happens to be a former professor in the department of nursing at the University of Wisconsin – Eau Claire; along with Tania Riske, an SLP at the Mayo Clinic Health Systems Eau Claire, and Nancy Petersen, a social worker with expertise in grief and bereavement from Ability KC in Kansas City. Each of them have both professional and personal experience and expertise with grief and loss. June is aphasia awareness month, so we wanted to take this opportunity to share the lived experience directly. Today's episode will address grief, death, and loss: leaning into a much-needed discussion.

Biosketch:

Our first guest, CeCelia Zorn, Ph.D., met her husband Wayne in high school in rural northeastern Wisconsin. Wayne died from the consequences of primary progressive aphasia last August, 2023. Since that time, CeCelia has continued her work as an advocate for families living with primary progressive aphasia and more recently about grief, death, and loss as a care partner. Cecelia brings multiple perspectives to our conversation about grief, death, and loss. She is a registered nurse and a lifelong writer. She has been an award-winning university professor for 32 years. CeCelia reads voraciously, plays pickleball, and is relearning how to play the flute – taking individual lessons, playing in community bands and auditing university music history class. She volunteers at the local free clinic and is an active member of the Board of Directors for Wayne's former memory choir. On a daily basis, CeCelia strives for a life enriched by kindness, joy, perseverance, curiosity, patience, and collaboration. But she will be the first to tell you, "some days are easy but some days you just crash. Yet everyday it counts because I remind myself, life isn't waiting for the storm to pass it's about learning to dance in the rain."

Tania Riske, MS, CCC-SLP is a speech-language pathologist at Mayo Health Systems – Eau Claire. She initially entered the speech language pathology field through her volunteer work with the Chippewa Valley Aphasia Group and graduated from the University of Wisconsin – Eau Claire Communication Sciences and Disorders program. Currently, she serves as an adjunct faculty member at UW Eau Claire, teaching undergraduate courses such as anatomy and physiology of the speech and hearing mechanism. Tania continues to enjoy treating patients with aphasia and their families within the LPAA Paradigm. Developing plans of care, counseling individuals' unique lifestyles, goals, interests, and priorities. Tania is an avid trail runner and equestrian.

CeCelia, Wayne, and Tania were my guests for Episode 49 – Primary Progressive Aphasia: A conversation with Wayne Zorn, CeCelia Zorn, and Tania Riske.

Nancy Petersen, MSW. Nancy grew up just outside Tulsa, OK and has an undergraduate degree in Speech Language Pathology from Oklahoma State University. She received a Master of Social Work from Jane Addams School of Social Work at the University of Illinois at Chicago, where she worked in urban hospitals and neighborhoods. Nancy is currently a Community Liaison for Ability KC, assisting patients as they transition from acute care to an intensive outpatient complex neuro-trauma rehab program. Her job also involves providing conferences and education to the medical and general Kansas City community. In her 30 years in the helping professions, she has learned much working in a variety of areas including nursing homes, hospice care, a suicide hotline, senior home care and case coordination. She has served on both the local and national Board of the Funeral Consumers Alliance providing education and advocacy relating to consumer protections in the funeral industry. Nancy is also involved with the Children's Mercy Hospital Rare Disease Patient Family Advisory Council, as well as the Ethical, Legal, and Social Integration (ELSI) Committee for the CMH Genome Project. Nancy has been married to Jimmy for 24 years and has an 18-year-old son with a rare disease, 21-year-old daughter, a cat, a dog and many wonderful friends.

Take aways:

• Avoidance. We avoid difficult conversations and miss opportunities to engage our clients and their families in important discussions about loss and grief.
• Culture. There is a culture in the US of avoiding or sugar coating conversations about grief, death, and loss; using euphemisms to describe death.
• Prolonging. We (as a society) are often guilty of prolonging life at any consequence and failing to consider quality of life.
• Loss. Loss and grief do not exclusively apply to death and bereavement. They apply, as we know, to identity and loss of a whole host of pieces of our lives and identity, particularly following stroke and aphasia.
• PPA and degenerative loss. This loss is something we know is going to happen and open conversations about loss may help to open the door to bigger conversations about death and dying.

Interview Transcript:

Jerry Hoepner: let's just kind of settle into a conversation. I really appreciate having the 3 of you here together. I know you all fairly well, but having the lens of a speech language pathologist, the lens of a social worker, and the lens of someone with the lived experience themselves is just a great way to have a conversation about a complicated and challenging conversation sometimes one that maybe people want to avoid. So, I'm just excited to talk to all of you. I'm going to open it up on the front end with a really broad question. I want to be careful, you know. I don't want to make you relive moments and things like that, but I also know that you are here because you want to be advocates for teaching and conversations about death and dying and grieving, and all of those processes. So, wondering if the 3 of you are willing to share a little bit about your personal background and experiences with grief. CeCelia, go ahead.

CeCelia: Yup, yeah, I happy to start. Thanks, Jerry, for kind of pulling us all together. I really appreciate the opportunity to be part of the conversation. The thing that comes to mind when you pose that question is my family history around dying and grief and death and I'm so fortunate to have had that family experience. I think it was sort of a balance between the emotional side of dying and death, and the practical side of dying and death, and our family held both of those at the same time. It wasn't just the emotion, and it wasn't just the practical aspects, but it was sort of, I don't know, running down a river of white water with one foot in each canoe, and I remember specifically, at my dad's death bed. There were 7 of us kids, and we of course, mourned his passing and were extremely emotional about that, and stayed with him 24, 7 for 3 weeks, etc. Etc. And but at the same time we were talking about. Should we have spaghetti or ham at his funeral luncheon? So, sort of the practical aspects of how is this all gonna come together in a few weeks when we knew the funeral was coming? So, for me, that's a strength that has carried throughout my life. And I I just am so appreciative of that. And I can only speak to my experience. Perhaps other families have had similar experiences, or one versus the other, or neither. But I just wanted to sort of throw that out there. That sort of ability to handle both things sort of in the same at the same time, has been a source of strength for me.

Jerry Hoepner: Wow! Thanks for sharing that, CeCelia. And I'm not sure that that is the experience of a lot of people that ability to do that. I want to take a step back, and mention something I should have mentioned. CeCelia. You kind of wear a couple of different hats, so you were a nursing faculty member for many, many years you have that holistic care, nursing perspective on grief and death as well, and then you also wear that lived experience hat as well. If I can use that metaphor in dealing with your husband. Wayne's death related to primary progressive aphasia. So just so. Our audience is understanding those perspectives. I think that's important. And to go back to what you just said, everyone has a different experience, and I'm not sure that everyone does process those things in parallel.

Jerry Hoepner: Nancy, I'll invite you to share a little bit next.

Nancy Petersen: Well, I'd be happy to. So, background is I have a master's in social work from Jane Adams at University of Illinois, at Chicago my experiences over the time figuring out what I wanted to be when I grew up, and what I ended up doing where I worked at a suicide hotline. For 3 years. I then worked in hospice for a number of years, including pediatric hospice while kind of in