“I’m sorry,” said the passenger to me on the Hurtigruten ship as we made our way into the fiords off the coast of Norway. This was in response to my sharing that my husband, Kris, had been recently diagnosed with Alzheimer’s. The comment was made with sincere concern. It was based on the general understanding that a prolonged journey lay ahead for us. A journey that will be difficult and potentially terminal for my husband and exhausting for me as his caregiver. Looking ahead, I am endeavoring to accept that this will most likely be true. We are in the mild cognitive impairment (MCI) phase of this disease.

Over this last year, I have found numerous “windows” of light and moments of delight. In addition, the research now is shifting the assumption that Alzheimer’s is a deadly disease. Recently, the language around Alzheimer’s is changing from “Alzheimer’s dementia → death” with more references such as “Alzheimer’s pathology” and “Alzheimer’s disease continuum.”

In the beginning stage of this “continuum,” I am trying to focus on my own internal processes to arm myself with mental resources that will support this journey. What does this mean? I have always been a planner and a project- based thinker. I adore the gratification I get from setting a goal, working towards it and then accomplishing it. I have recognized that now a new approach is required.

It is momentary, it involves small steps, one at a time and it includes a recognition of an unknown future…no timelines, no goals, no action planning! This is hard and necessary. In working to shift my mindset, I am aiming to be more present in the moment…..more present to myself, others and my surroundings.

Not every moment is pleasant. It is sometimes frustrating and difficult, but it is real and honest. This is what I am learning sometimes with great resistance. A famous Zen koan refers to this practice: “Step by step in the dark, I have found the next stone.” This is one “window” I have discovered along this journey.

Another “window” has been the discovery of the Alzheimer’s Association^®. Little did I know that there were abundant resources available to accompany us and many others as we travel along this journey. We now belong to a support group that has been invaluable for us both. We have each found comfort in meeting with others and sharing our on-going experiences. The Redwood Caregiver’s Association has also provided emotional support and counseling.

Another “window” arrived unexpectedly. We travel to San Francisco to receive Lecanemab  infusions [one of the treatments that may change the progression of the disease]. Initially, I dreaded the idea of making a five hour round trip twice a month….the traffic, the interruption to my schedule, not knowing how effective these infusions might be. However, we have discovered a community of kind-hearted nurses and personnel at UCSF who greet us with familiarity and warmth.

Kris settles into his infusion chair with an expansive view from his floor to ceiling windows, receives an assortment of snacks and gets “plugged in.” I then go for a walk. I meet interesting people on the streets, stop for a fresh baked peasant pie, breathe in the fresh air and gaze at the many and varied landscapes and art installations sprinkled around the area.

Kris relaxes in his luxurious chair and enjoys being attended to by the nurses. He has had no negative effects from these infusions. Do they help? We don’t know. But we have come to enjoy these excursions sometimes coupled with a visit to a local museum or a bite to eat before heading home.  

“Step by step in the dark, I have found the next stone.” We are learning to live moment by moment, stone by stone while still holding the understanding of the journey that lies ahead for us both.

For more information on resources and support groups visit alz.org or call the Alzheimer’s Association 24/7 Helpline at 800.272.3900.