Genetics of Alzheimer’s Disease

My Personal Journey in the Betwixt

My good friend Carrie Jalonen wrote a book called Liminal Life: Navigating Transitions with Authenticity. My substack is Betwixt Proxy which I picked because at the time I started writing a couple years ago the word betwixt fit with what I experienced as a caregiver and medical decision maker in between the times when my soulmate was “there” and “not there” on his Alzheimer’s journey.

Carrie and I often mused on how this place I called betwixt and the place she called Liminality were the same concept.

This morning I was driving down Manzanita Road on Bainbridge Island where I live. It is one of those backroads with towering cedar and fir trees on either side. The elegant sinuous boughs overhead create a solid canopy, giving the driver a sense of being in a tunnel. Depending on how much sunlight makes it through the canopy, one can be awestruck by nature, or feel a foreboding sense of uncertainty about what is around the bend.

That’s where I am this morning. This past Monday I had my genetic counseling session. I am APOE3/APOE4. The only worse combination would be to have two APOE4 genes. That in combination with a positive ptau217 blood test means I at significant risk for developing Alzheimer’s. The disease that took my husband from me day by day over years. The story that I am writing in a memoir I have been working on for year that is in the process of being edited. I have pitched it to four agents, one of which asked for the first 50 pages.

And now I am in the betwixt myself—the space between being a dementia caregiver and potentially being a dementia patient.

It is the tunnel.

I can look down the tunnel and see the sun, which for me is the knowledge that I may be predisposed, but there are many lifestyle changes I can incorporate in my life that decrease the risk of developing Alzheimer’s, and at the day to day level I can prioritize things that are most important to me. Spending time with my grandkids, tending to friendships and hobbies that I have relegated to the pending file of my life, thinking if I am eligible to get the anti-amyloid drugs maybe it will help me NOT get it, and yes trying to get published.

The uncertainty component is this weird guilt feeling that I might pass this gene on to my children and grandchildren. I get why they offer genetic counseling. Of course I have horrifying memories of what this disease did to my soulmate and how I would rather drive off a cliff than go through that, but somehow even that pales in comparison to thinking about being the “cause” of their future Alzheimer’s.

I know. I know. I shouldn’t go there.

Can’t help it. It’s the dark side of the tunnel.

I have to choose to focus on being present in whatever time I have, and move through this betwixt educating my kids and supporting them by letting them do with the information what feels right for them.

It’s a sunny day today in Seattle. The tunnel was filled with light and a dozen different colors of green.