Passagemaking with Dementia

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!

25 Comments
  • Shari Walker
    Posted at 01:20h, 27 May Reply

    Wonderful post.

  • Clay Hutchinson
    Posted at 01:44h, 27 May Reply

    Thanks for the beautiful message Don.. This is a great thing you are doing and should rank near the top of the list of your numerous incredible accomplishments. Good on ya. Please give my best to Sharry, Sam and Celeste. Clay

  • Andy Howard
    Posted at 01:54h, 27 May Reply

    A truly loving post Don. Sharry is an awesome lady and is truly blessed to have an equally awesome and loving soulmate. Love to you both and thanks for the touching and informative blog. Continued happy sailing…

  • Alice Gill Murray
    Posted at 02:44h, 27 May Reply

    Amazing love and adventure

  • Bev Desmarais
    Posted at 02:53h, 27 May Reply

    Tears in my eyes, you two are surely inspirational! Enjoy the rest of your trip. Thanks for sharing enjoy following along.

  • Luuk Oleson
    Posted at 03:27h, 27 May Reply

    Tears here as well.
    Sharry may not be able to revisit this trip in her memory bank, but the present moment must feel wonderful and is enjoyed.
    Wow! to all of you, her support crew. Your own memory bank will have this incredible trip for the rest of your life. To enjoy, and to be proud of.
    Hugs for all, and happy “sailing”.

  • Steve Leonatd
    Posted at 04:03h, 27 May Reply

    Don, when all the stages and treatments are considered, unbounded love will be what matters the most. To Sherry and to you. As you are proving every day. You have made very thoughtful, caring choices. You have my profound admiration.

    Steve

  • Valerie Creighton
    Posted at 04:04h, 27 May Reply

    Wonderful post, thanks for sharing it! We are in Valdez now, exploring Prince William Sound until August. Will try to keep track so we can cross paths up here.

  • Doug Easton
    Posted at 04:24h, 27 May Reply

    Hello Don
    What a lovely post – you have our admiration for the way you are coping with Sharry’s diagnosis.
    Give our love to Sharry – she may remember us.
    Take good care of yourself and enjoy all the time you have left with your wonderful wife.
    Much Love
    Doug & Marlene
    Evolution

  • Joe Golberg
    Posted at 05:39h, 27 May Reply

    Dear Starr Crew:
    We send all our love and shed some tears of sadness and joy. I am so grateful to have made a passage on Starr and feel the rumble of the engine, the rhythm of the watches and miss the ocean. Just got Corbeau back from 2 months of boatyard work, w/ the usual unexpected complications. We hope to see you on your way back through BC waters.
    Cheers from the Islands,
    Joe and Elayne.

  • Nellie
    Posted at 06:53h, 27 May Reply

    what a loving story – holding hands for 60+ years and going strong. I recently spent 12 days in Tokyo with 3 friends from Honolulu. I loved using the public transportation, the sights and smells, the wonderful food and culture, day hikes in the country. Missed seeing you two at aqua jogging. I need not worry as you are enjoying the high seas and surrounded with love. Much Aloha

  • Kimberley
    Posted at 11:10h, 27 May Reply

    What a sweet post. Tears in my eyes too. The experiences and support you and the crew are giving Sharry are inspiring. I am glad you have a good group to support you. We just lost a family member with Alzheimer’s…. it is an extremely difficult process to go thru. Hope your crossing is calm.

  • Atle Moe
    Posted at 11:41h, 27 May Reply

    What an uplifting and at the same time tough read this was. You could feel the love thru every sentence. Safe travels.

  • Milt & Judy Baker
    Posted at 12:46h, 27 May Reply

    Thank you for sharing so much about Sharry’s path into Alzheimer’s Disease, Don. You and your team aboard Starr make it clear that a safe, loving and nourishing atmosphere makes her journey easier, and with the you, Sam and Celeste on her care team she certainly has that in spades.

    I’ve been messing around with artificial intelligence (AI) lately, and based on your latest blog post I asked the popular ChatGPT bot the following question. It’s answer–generated in seconds–is pasted below. ChatGPT is quick to out out that it’s answers are always a work in progress, but I wanted. to share it with you and other readers of your great blog because this particular response seemed to be right on-target.

    Prompt Question:
    Discuss mid-stage Alzheimer’s Disease and the patient living in the moment because she sometimes cannot remember what she was told or doing 10 minutes ago.

    ChatGPT Response:
    Mid-stage Alzheimer’s disease is characterized by a progressive decline in cognitive function and memory. At this stage, individuals may experience significant challenges in remembering recent events and retaining new information. As a result, they may frequently forget conversations or activities that occurred just minutes ago.

    One common coping mechanism observed in individuals with mid-Alzheimer’s disease is living in the moment. Since their short-term memory is significantly impaired, they may rely on their immediate experiences and focus on the present rather than dwelling on the past or worrying about the future. Living in the moment can help alleviate frustration and anxiety caused by the constant memory lapses.

    For someone with mid-stage Alzheimer’s disease, living in the moment can have both positive and negative aspects. On the positive side, it allows them to experience and appreciate the present, finding joy and contentment in simple pleasures. They may engage in activities that bring them immediate satisfaction, such as listening to music, enjoying nature, or spending time with loved ones. In this way, they can still find moments of happiness and connection, despite their memory challenges.

    However, there are also challenges associated with living in the moment. Since individuals with mid-stage Alzheimer’s struggle with short-term memory, they may repeat questions, stories, or activities multiple times in a short span. They may not recall previous conversations or commitments, which can be frustrating for both the person with Alzheimer’s and their loved ones. The person with Alzheimer’s may become confused or disoriented when they cannot remember recent events, leading to increased reliance on others for support and guidance.

    It’s important for caregivers, family members, and friends to be understanding and patient when interacting with someone experiencing mid-Alzheimer’s disease. Gentle reminders about recent events, providing a structured routine, and using memory aids like calendars or notes can be helpful in reducing frustration and helping the person navigate daily life. Additionally, engaging in activities that stimulate long-term memories, such as looking at old photographs or listening to familiar songs, can evoke positive emotions and help maintain a sense of identity.

    Supporting individuals with mid-stage Alzheimer’s requires a compassionate approach that focuses on their well-being and quality of life. Although they may struggle with memory and may live primarily in the present moment, it is essential to foster an environment of love, understanding, and connection, which can positively impact their overall sense of happiness and contentment.

  • Donna Hawley
    Posted at 14:38h, 27 May Reply

    Dear Don , What a moving loving description of your journey with sharry and you and Alzheimer’s. Thank you for sharing Donna

  • Ken Diestler
    Posted at 15:31h, 27 May Reply

    Great description and a great trip with a great supporting cast. Hope you continue to enjoy it as much as possible under the circumstances.

  • Roberta Williams
    Posted at 21:19h, 27 May Reply

    Dearest Don and Sharry,

    Ken and I remember well our cruising Japan the summer of 2010 with you two. And I recall so distinctly the awesome admiration that Sharry had for the people and culture of Japan. As her and I sometimes sauntered the streets of Japan — one time on a quest for ice cream, another searching for a nearby Starbucks — she would speak of it as the most wonderful place in the world, her face literally beaming. She was instrumental in opening my eyes to the wonders of this special country and its people! And for you to take her back to her ‘special place’ is so admirable — chivalrous even. But we really know that, down deep, this isn’t chivalry — it’s pure love flowing from you to her. True love isn’t hard…

    At this stage, many spouses of people with Alzheimer’s’ become frustrated (and sad, grieving) themselves and don’t know what to do. So they stay home more and more and try to manage things. I know — my dad passed away from Alzheimer’s 10 years ago. It was a difficult time. But between my mom and Ken and I — we would still get my dad out there, traveling and doing things ‘as normally’ as possible. You may remember my mom and dad with us in Nagasaki (we flew them in for short visit that summer on Sans Souci) — he passed away 2 years later. We all wanted to be with him and have him enjoy life as much as possible. And as Sharry loves Japan, my dad loved his garden (he had been a professional horticulturist) and puttered in his beautiful garden until just the year before he passed away. In many ways, it was a very intimate time with him, and a time that I will never regret. You will look back on this and feel that this was perhaps one of the most intimate times between you and Sharry. It will be forged in your hearts forever.

    With much love,

    Ken and Roberta Williams

  • Sheila Morrow
    Posted at 23:16h, 27 May Reply

    So sad, so thankful. Thanks to you all for loving my sister.
    Huge hugs, Sheila

  • Geoff and Candace Daigle
    Posted at 23:42h, 27 May Reply

    All of you are just an inspiration. Puts our lives into perspective really. We sit on our rear ends back home, getting our vicarious thrills out of watching your amazing adventures. As Humphrey Bogart said in Casablanca, “. . . it doesn’t take much to see that the problems of three little people don’t amount to a hill of beans in this crazy world”. And we’re the little people. You guys are the adventurers. Fun travels to you all. Geoff and Candace

  • Dan Barr
    Posted at 00:19h, 28 May Reply

    So touching. Yes, I’m adding to the pool of tears…w such real connection, and joy, and struggle, and Great Cruising thru life. I’m looking out, and listening to the symphony thru the door from Bellingham Bay, wondering where you are know…and filled by these posts of friends…and wondering about my own journey w the three year bonus of Tagrisso running out. Safe travels, and fun meetings w SYCers, and CCAers as you turn S. Much love, 😍Dan and Ann. PS I’m remembering a Larry and Maxine story in the Aleutians able to duck in for a break thru some very narrow entrance in the fog thanks to GPS.

  • Pam Neate
    Posted at 09:52h, 28 May Reply

    My father also suffered with Alzheimers. I am in awe of your story of true love , never giving up and following your dreams. Thank you for sharing your story. Safe travels.

  • George Gliksman
    Posted at 13:21h, 29 May Reply

    We are listening. We hear you. We send you all our love and support. Your ‘Journey to Ithaca’ is one of great beauty and grace, and an inspiration to us all. Thank you for sharing it.
    Pam and George

  • Martina Jones
    Posted at 23:35h, 29 May Reply

    Don…your post is inspirational…as are the two of you …ALL these years cruising together as a team in parts of the world most dream of. Stay strong and give your special bride a hug from us. Tina & Braun Jones

  • Phil Swigard
    Posted at 16:21h, 01 June Reply

    I understand what you are going through. I have had the unfortunate experience twice….with my mother and with Pat. Those were very sad, difficult times.

    You are doing all the right things. The worst to deal with is there is no way to fix it, at least it was for me.

    Best wishes.
    Phil
    Eventide

  • Phillip Hawley
    Posted at 01:36h, 06 June Reply

    Don,

    Thank you for sharing your experience with Sherry. over the years and now with Alzheimer’s. I’m saddened by her condition but thankful she is surrounded by so much love, family and friends. I wish you safe travels and calm seas.

    Phil

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