Passagemaking with Dementia

26 May Passagemaking with Dementia

Four years ago, Sharry was diagnosed with Alzheimer’s dementia.

Still holding hands after 60 years

She is now in mid-stage. That means she might not know where she, except she knows she is on Starr. She often won’t know what happened 10 minutes earlier.  She does funny and sometimes frustrating things, like taking other people’s stuff and hiding it in our stateroom. We know most of the usual places to look but sometimes it might be weeks before we find whatever went missing.

https://www.alz.org/help-support/caregiving/stages-behaviors/middle-stage

We are convinced Sharry is safer here on board rather than at our places in Hawaii or Seattle.

Our son Brooke helping Sharry with her back exercises when he visited us in Miyajima. One of the many challenges we’ve encountered with Alzheimer’s is that when Sharry’s back doesn’t hurt–when she takes the medication and does the exercises–she can’t remember that she’s dealing with a disc issue.

Sharry and I have been holding hands for 60 years. As kids her greatest wish was to live at least six months in all the great cities of the world.  While we haven’t done that, we have had Starr in many places on her wish list.

We spent a year cruising Japan in 2010-2011. We both felt and still feel cruising Japan is the top of our favorite places. If you read her Japan blogs from 2010 and 2011 you will be amazed over the depth of her passion for Japan and her writing skills (click here to see the blogs, scroll to the bottom for the oldest). Fortunately, Sam Landsman is an excellent writer and he is a good second best!

For the past 23 years we’ve run Starr together, with friends helping on the passages that were longer than 5-8 days. Sharry was a curious adventurer and we worked well together—we were a team. I maintained and drove the boat. Sharry managed itinerary planning, solved bureaucratic challenges, arranged for cultural experience, led the provisioning efforts, and so much more. As her memory issues have progressed, she’s become a passenger, unable to help in areas that she had previously mastered. It’s painful to witness. I have always been a problem solver and a repair man who jumps right in and gets his hands dirty, but this is a problem I cannot solve. I just have to be patient.

A few years ago Sharry was helping out in the engine room.

Now, she spends much of the time underway sleeping. She can’t stand watch.

Fortunately, we don’t have to give up the cruising lifestyle that has brought us such joy over the years. Celeste is on board as crew/caregiver help. Celeste is an RN who has been with us over a year now. Sharry has finally bonded with her. Celeste has taken on many of the roles that Sharry used to manage. Sam Landsman is onboard as co-captain/co-engineer with me and frees me up to support Sharry. Sam and Celeste both offer Sharry loving support, which helps because this is the hardest passage I have ever made.

Checking safety gear and practicing donning survival suits in Hokkaido. Safety at sea with an Alzheimer’s patient is an added challenge.
Safe in the arms of Celeste.

Sharry can’t go anywhere alone. Celeste and Sam have been a great help and allow me to have occasional alone time.

This past couple of years when we would reminisce about our experiences, Sharry would tell me she wanted to return to Japan. We are so glad we did. We are sorry to leave Japan, but we are anxious to explore Alaska.

Kathleen Hurlow, fellow CCA member from SV Capaz, with Sharry. The social side of cruising is more challenging with Alzheimer’s. New faces can be disorienting to Sharry. We mention to visitors that Sharry has Alzheimer’s so they understand why she asks the same questions over and over. 

It is May 27 and we are now on watch underway in heavy fog on the 1350nm passage from Hokkaido to Attu, at the western end of the Aleutian Islands. Russia’s Kuril Islands are 90 nm off our port side. Sharry is next to me in the pilot seat and listening to classical music streaming via Starlink. Sharry asks me where we are and I tell her the same things over and over. She is at peace.

Blossom the robotic cat is a great source of comfort for Sharry

As I have started talking about where we are with Alzheimer’s to friends and acquaintances, I realize that there are other cruisers who are in the same proverbial boat. Cruising with Alzheimer’s is different than before, but Alzheimer’s doesn’t have to mean selling the boat. Feel free to reach out to me if you want to talk. It helps!