Passagemaking with Dementia, part II

Passagemaking with Dementia, part II

Just 12 months ago Sharry, Sam, Celeste, and I crossed the Pacific to Japan and then continued back to Seattle via the Aleutians.

Sharry with Debbie and Andy Howard just before departing for Guam

About to leave Honolulu for Guam and Japan

Sharry’s Alzheimers was identified in 2019 at the UW Memory and Brain Wellness Center, but I now know that the disease began years before that.  Since her diagnosis, there has been a steady (but not linear) decline of her memory and independence. Until recently, she could still enjoy “one more passage.”

On previous passages, Sharry did engine room checks and transferred fuel. On this passage, we tried to keep her out of the engine room to minimize her risk of injury.

This last passage was Sharry’s 12th Pacific crossing. One of her favorite things about the boat is to be out of sight of land for more than five days. In the past, she loved sitting on the side deck outside the wheelhouse gazing at the stars during night watch.

Clay, Don, and Sharry on watch between Hawaii and Guam

For more than two years now, Celeste and Sam have been helping Sharry and I.  Together, we took Sharry on her final Starr passage with the goal of helping revive some of the wonderful memories from our time aboard Starr in Japan in 2010. It wasn’t always easy and smooth–we had all the usual passage making challenges to deal with, plus Alzheimer’s-specific challenges, but we accomplished the goal safely while having fun. What a great team! We are working on another post detailing the steps we (mostly Celeste!) took to make Starr and this passage safer for Sharry. Our hope in sharing this is to help others who might in a similar position make the most of their precious time.

Sharry, Celeste, and Sam enjoying a meal underway

All told, Sharry was on the boat for over seven months and completed 15,000 nautical miles—an achievement for anyone, especially someone struggling with memory loss!

First steps on shore after the passage to Guam

She wasn’t just a passenger; she was active on board, sitting up for wheel watches (never alone) and scrambling, with some help, on and off our 15’ shoreboat and various docks. She insisted on being helpful and never wanted to be left out. She was part of the crew.

Sharry thrilled to be back in Japan!

Sharry and Don aboard Starr at Miyajima, just a few miles from Hiroshima

Even though we’ve been cruising on Starr for 24 years and Sharry organized the galley, Alzheimer’s stole her ability to recall where items belonged. To help, we labeled each drawer and locker. As her ability to match words to their meaning deteriorated, items sometimes ended up far from their intended home. Cooking dinner often lead to an easter egg hunt. We’d eventually find the oven mitts in one of Sharry’s clothing drawers. Thankfully, we never found the knives hidden underneath the bedsheets!

Japan presented physical challenges for getting on-and-off the boat. Sharry did remarkably well given that she often needed to climb a rope and balance on the rail. We never let her attempt getting on or off the boat alone and always had at least one person to hold her hand.

Talking about Sharry’s safety at sea, I vividly recall the situation when we were 800 nautical miles out from Hawaii and an abandoned trawl net fouled the propeller. It was 2:00 am and we were dead in the water, rolling through a 90 degeree arc. We were doing damage control, trying to figure out what had happened while dodging flying objects and trying to tie others down. Sharry walked into the salon, undisturbed by the motion, asking what she could do to help.  What a fearless trooper!

Clay with the net that stopped us, after he cut it free

At our second stop in Japan, Sam and I hiked to the top of the island one morning. At that time, Sharry was physically able, but her mind was unable to cope with my absence and she often exhibited “seeking” behavior. Upset that I’d left, Sharry ran after us, and then Celeste ran after her! Imagine my surprise when I saw Sharry at the top of the mountain!

Granddaughter Kat with Sharry in Japan

Shannon, Kat, and Brooke’s visit to Japan was a highlight!

Family at anchor in Miyajima

As we moved north through Japan, Sharry’s memory problems often manifested through a vivid imagination. When we approached new harbors, she explained that she had friends there, that she’d been there many times before, or that the grocery store was just down the block. Occasionally she’d see someone or something that wasn’t there. Thankfully, these delusions never frightened her. We worked hard to make her feel comfortable and acknowledge what she was saying, no matter how little sense it made.

Celeste and Sam helping Sharry walk to dinner in Hakodate, Japan. At the beginning of the trip, Sharry could get on-and-off the boat by herself and take hikes. 

We have been in Hawaii since October and there has been a marked decline in Sharry’s physical and mental capacity, especially over the past few months. Sharry is often confused about where her bedroom and bathroom are located. She doesn’t always know what a toilet is for. She requires assistance with dressing, grooming, and hygiene. She has difficulty walking any more than 50 to 100 steps. It appears that it’s not only her sciatica hindering her mobility, but her dementia as well.

Happily, she still enjoys mealtimes and outings. The introduction of a baby doll (created especially for dementia patients) has been a tremendous source of joy as she “cares” for her girl and her other “companions.” Her other companions are her cat from Azusa, and her eskimo doll from Pelican, Alaska.

Sharry and her baby doll

Sharry spent more and more time resting in this chair with her dolls

At our Waikiki condo, Sharry tires more easily than she has in the past. A few minutes after eating a meal, for example, she falls asleep in her chair. If we take her for a walk after a meal, though, she does much better. We noticed that she particularly likes meeting new people in the elevator of our building.

Sharry sleeping at the table a few minutes after finishing a meal

Recognizing that being around new people stimulates her, we started taking her several times a week to a wonderful community senior center where she spent much of the day. Sharry blossomed with the activities and new friends. She enjoyed bringing her dolls and animals along for these outings and sharing them with the other participants.

It was becoming clear that being at home wasn’t necessarily the best. Sharry seemed bored and unstimulated and responded by sleeping. She also needed increasing levels of care. We brought in more caregivers—they were wonderful and experienced—but one-on-one time with the same people left Sharry bored. She spent most of each day at home sleeping.

While Sharry was at “camp,” (which is what we called the senior center), Celeste and I visited 6 memory care facilities, all of which were within 20 minutes of our Waikiki condominium. We were impressed by the quality of the staff that each facility had and how long the managers and support staff had been at each of the places. We could have picked any of the six memory units and felt Sharry would have been well cared for.

One entry requirement was the same across the board: incoming resident must be able to walk into the facility. A walker is allowed, but they will not be admitted if wheelchair bound. That was a wake-up call for us given how quickly Sharry’s physical mobility has been declining.

We immediately got on waiting lists with three different facilities and were fortunate to get into the Plaza at Waikiki, which is just three blocks up the Ala Wai canal from our home.

On March 4, Sharry moved into her new home at the Plaza. The Plaza is a retirement facility that has one floor dedicated to memory care. There are about 28 residents and a staff of 6 full-time caregivers and a full-time nurse.

The Plaza recommended that I stay away for the first two weeks to give Sharry time to adapt to her new home. I joined Dan on his sailboat, Kaori, with he and Cheryl in the West Indies. It was wonderful to be surrounded by family.

We were not sure how Sharry would respond to living at the Plaza, but we knew she had been enjoying “going to camp,” her twice-a-week all-day visits at the senior center. We feel that socialization was key for her transition. She no longer tried to “flee,” she no longer searched for me, and she made friends quickly.

Al and Sharry. Al is one of her new friends!

While I was visiting Dan and Cheryl, Celeste has been keeping tabs on Sharry. When Celeste visited on day 10, Sharry did not want to leave the social activity she was involved with to talk with Celeste.  Each day there are social activity leaders who do an excellent job of offering a variety of stimulating activities. I’m told that Sharry especially enjoyed watching a group of teenagers leading the group in songs, games, and skits, engaging the residents at the level of their capabilities.

Sharry surrounded by her friends at her new home

She has made several new friends and is clearly enjoying herself. Her main friend is a lady who also has a “baby girl” and they spend time together talking about their babies.

I’m now back in Hawaii. When I first visited Sharry, she was pleased to see me but wasn’t aware that I’d been gone for the prior two weeks.  When I arrived, Sharry was participating in a cooking class. One of the caregivers alerted Sharry of my presence and Sharry stood up and hugged the caregiver before coming out to see me. Clearly Sharry is at home at the Plaza.

Her mobility has continued declining even in the short time she’s been at the Plaza. I feel fortunate that she has the support to ensure that she needs and I can’t provide. This video illustrates how she walks now:

I’m working on taking care of myself. I am fortunate to meet once a week with Dr. Michael Pauly, a therapist who is hugely helpful and has been patiently working with me since this journey began. I just finished my US Sailing level 1 coaching course and will start helping coach adult and youth sailing classes. That will be a good start to trying to be useful and a way to meet new friends. I’m able to visit Sharry and take her on short outings with appreciation for the moments that she is present with me and knowing that she is well cared for in her new home.​

  • Andy Howard
    Posted at 01:38h, 28 March Reply

    Wow, – brought tears to my eyes Don. Thanks for sharing my dear friend.

  • Beverley Lynn Desmarais
    Posted at 02:21h, 28 March Reply

    Thanks for sharing …… are going through a lot and Sherry is so lucky to have you…..glad she is happy.
    One of her Cousins

  • Atle Moe
    Posted at 02:24h, 28 March Reply

    Yes, heartwarming and sad at the same time.

  • Chris Clothier
    Posted at 03:10h, 28 March Reply

    Thank you for sharing this journey. So good to see how you each are adjusting to life’s changes.
    Hugs to you both

  • Douglas Easton
    Posted at 03:16h, 28 March Reply

    Hi Don

    Thank you for the update and news about Sharry.
    We have fond memories of you both and how you looked after us while we were visiting Seattle.
    Please keep in touch.
    Marlene & Doug
    SV Evolution

  • Janet Mahan
    Posted at 03:40h, 28 March Reply

    I followed your Pacific Ocean travels with Sam. Noted some daily skill challenges during the trip. Sorry to hear your First Mate is not able to join you on future adventures. Thank you for sharing your story and this most recent update.

  • Ginger Marshall
    Posted at 04:06h, 28 March Reply

    Don, thank you for sharing your story. You have, and continue to be, an incredible husband and friend to Sharry. Your understanding of her aging process has made all the difference. You have given Sharry a wonderful gift. So glad you’re making time for you and happy to know that Sharry is finding peace at her new home. Thinking of you, Ginger

  • Jim and Sue Corenman
    Posted at 04:19h, 28 March Reply

    Don. Thank you so much for sharing your travels and challenges with Sherry. We’re so happy you have found a wonderful home for her. Please take care of yourself and when you are back her in Seattle, we would love to see you.
    Sue and Jim Corenman

  • Peter W Powell
    Posted at 05:18h, 28 March Reply

    Don, I have so mix of emotions! I’ve known you two since just after your two children were born! Thank you for sharing,! I love your posts “holding hands” . It’s hard to imagine losing your mate like this!, you two are the best!!

  • Hector Cyre
    Posted at 05:38h, 28 March Reply

    Thanks Don. So sorry that Sharry and you have had to travel this road, but you are standing a very good watch. You provide a real model for all of us as we face the varioius challenges of aging. It takes a special kind of courage to share this journey with us through the blog, but it is so valuable to us and so appreciated. Hug Sharry for us, and tell her that Jan and I often think of both of you and the good times we shared over the years.

  • Scott Stabbert
    Posted at 05:56h, 28 March Reply

    Hey Don,
    Thanks for sharing and for the vulnerability. Love you both.

  • John Ruscetta
    Posted at 10:25h, 28 March Reply

    Don, Thanks for sharing with G and I..

  • Kent Huisken
    Posted at 12:38h, 28 March Reply

    We’ve followed you both for a long time and have enjoyed loving vicariously through your blogs. This was a very touching one. Blessings to you all.

  • Geoff and Candace Daigle
    Posted at 13:09h, 28 March Reply

    Hi Don and Sharry.

    You two show the rest of us what it means to be loving and graceful through tough times. For anyone who’s been married a long time, the way you have navigated rough waters is nothing short of inspiring. We got to see the caring and devotion first hand, and we are so grateful for our time with you both on this past voyage. Thank you for sharing this with all of us who admire the example you’ve set.

    Geoff and Candace

  • David Traver Adolphus
    Posted at 14:04h, 28 March Reply

    This is such an honest and clear narrative, Don. I’m sending it to some friends who either work with or have had people with dementia in their lives. Thank you.

  • Joseph Golberg
    Posted at 15:01h, 28 March Reply

    Dear Don:
    I treasure my passage with you and Sharry on Starr. We both are glad she is comfortable, safe, finding some peace and that you are stretching your wings a bit. Odd how life doesn’t turn out the way we think it is going to. Much Love, Joe and Elayne

  • Ken Diestler
    Posted at 15:03h, 28 March Reply

    I have followed your Blog for quite some time and lived vicariously thru your travels. So sorry about the reasons your travels came to an end but so glad you were able to orchestrate what seems to be the best way thru a problem time.

  • Valerie Creighton
    Posted at 15:25h, 28 March Reply

    Thank you so much for sharing your and Sherry’s journey with us. It might not look that way from your end, but you need to know how inspiring your tale is to us readers, many of whom have, are, or will be facing the challenge of dementia in one of our loved ones.

  • Milt & Judy Baker
    Posted at 15:41h, 28 March Reply

    Our hearts go out to both you and Sharry, Don. You’re managing this just as you do every other facet of your lives, proactively, fully focused, and with your eyes squarely on the ball. The move to “camp” seems spot-on for Sharry and it’s clear it was the right place and the right time. Our love to you both. Aloha.

  • Richard stabbert
    Posted at 15:52h, 28 March Reply

    Don and team
    What a wonderful and heartfelt journey of strength and Love. Don, you have always been a pillar of strength.

  • Jim Leslie
    Posted at 16:30h, 28 March Reply

    What a beautiful walk down memory lane. You two have had a wonderful, adventurous life. Thank you for this update. I wish you both the very best for this next chapter of your journey.

  • Daniel Kerns
    Posted at 16:51h, 28 March Reply

    Thanks for sharing this. Sincerely.

  • Hiroko Sugiyama
    Posted at 17:24h, 28 March Reply

    Dear Don, thank you for sharing the way Sharry was behind the incredible passage to Japan and back.
    I still cannot forget the time I shared with her in Honolulu taking her to tea ceremony event where we took pictures with grand tea master (he is 101 years old now), walked along the beach, swam, and cooked dinner on STARR several years ago. You are the best husband, supporter and carer to her. I will set up a day to cook for you both.

  • Bob Armstrong
    Posted at 18:11h, 28 March Reply

    Hello Don,
    Thank you for sharing. All the best to Sharry and yourself.

  • Ken Williams
    Posted at 18:34h, 28 March Reply

    Don — You are a true hero. Best wishes to you and Sharry through this challenging time.

  • Richard Albrecht
    Posted at 20:52h, 28 March Reply

    What a powerful story of resilience and love in the face of life’s inevitable challenges..

    I am deeply touched by the love you two share and the community of support you have surrounding you.

    Fair Winds and Calm Seas!

  • Jill Hearne
    Posted at 21:33h, 28 March Reply

    What a gift you have given to all of us struggling with aging issues! As always your course is steady and your narrative helpful to others. I will share this with a close mutual friend.

  • Denis Umstot
    Posted at 22:13h, 28 March Reply

    What an inspiring story. I would not have expected the stimulation and dolls working so well.

  • Kat and Jim Petron
    Posted at 23:29h, 29 March Reply

    This is the most beautiful and loving story. It is sad but also so beautiful It really hits home when you personally know the people that are in this love story. We admire you so much for sharing this with all of us. We forget sometimes how precious every moment of our life is with our loved ones.

  • John Douglas
    Posted at 01:52h, 30 March Reply

    Don, you and Sharry are amazing people, brave and kind beyond comparison. Touching and heartwarming; thank you for writing. All the best.

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