Sailing with Alzheimer’s

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My mother Hilary came to live with us last February following the death of her longtime partner. She arrived a week before John and I were to give notice of our intent not to renew our lease on the apartment on Mercer Island.  I had kept the apartment for many years as a Seattle pied-à-terre for the time I spent with my children every month. The kids had launched and John and I were going to move onto the boat and live in our pleasant marina community for a year before sailing off for Alaska and then parts unknown for a decade.

Hilary’s arrival changed the plan, of course.  But not as dramatically as we had feared, as you shall hear; she’s a doughty sailor who’s always up for an adventure, and the thought that she’s coming sailing with us to Alaska in two weeks fills her with excitement. Every time we tell her that we three are going to Alaska she hears it with a feeling of wonder, for no matter how many times a day we might mention it, she hears it as if for the first time.

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Hilary is in the moderate, and moderately worsening, stage of Alzheimer’s Disease.

How bad is it? We have not told her that her partner died last year and she has only a handful of times thought to ask about him. Where is he? Why hasn’t he called? Should she tell him that she’s here? She drinks a couple of glasses of red fruit juice in the evening and believes, in every molecule, that she’s drinking wine. She mistakes my partner John for her partner Don, which I never saw coming at any time throughout our long and close relationship as mother and daughter! She wears adult incontinence pants and sometimes, if they get full, knows that something is wrong but can’t tell me what it is.

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How good is it? She’s an optimistic, engaged woman who is excited to be alive and who adores the beauty of the world. She is not any angrier than I would be if I repeatedly found myself unable to comprehend situations or to articulate my thoughts or feelings, and in fact is far less so. She wants to help and to be involved, and she cares deeply for me, and for John, even though she’s not quite sure of our relationship to her or why we’re all living together. She’s healthy and vigorous and always ready for an adventure. Walking around the block qualifies, every day, if for no other reason that the spruces, hemlocks and cedars are newly majestic each time we pass.

So, how do we all manage on Caro Babbo? Pretty well! True, my idea of the romance of sailing with John has taken a bit of a hit, but not much of one, as the grandeur and beauty of the places we’ve sailed are still as grand and beautiful as they would be were it just the two of us. True also, John and I can’t sleep through the night with Hilary aboard, but we can’t do it in the apartment with her either. And true, it’s a small space with a tiny head which eliminates any privacy she might once have expected, but again, I can’t be any more intimate with her toileting than I already am, so making it work on the boat is merely a question of logistics.

She has done well on the boat. For our initial cruise together last year we sailed from our berth beneath the Fremont Bridge on Seattle’s Lake Union to Blake Island, which is a short, easy, picturesque sail. She loved it! With DSCN3377Alzheimer’s the ability to hold an idea diminishes to the point where it really is a day filled with consecutive moments of NOW. She doesn’t reliably remember the moment five seconds ago anymore. So what she sees, really, is a huge part of what she experiences. There’s a lot to see from the cockpit of the Caro Babbo!

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Last August we sailed for three weeks up to and around Quadra Island, the southernmost of British Columbia’s Discovery Islands between Vancouver Island and the mainland. We had some days of brisk sailing, tense moments involving currents and other boats, early morning departures to catch the tide, and days of calm, or quease, or shore time spent hiking or even once renting a car with her. But never any complaints from her or any indication that she didn’t want to be with us on the boat or that she felt uncomfortable or inclined to be anywhere else. There was never a moment when John or I felt she was in an unsafe position. We are constantly concerned for her safety, of course, but in our experience so far our diligence and her willingness (to wear the lifejacket any time not asleep, for example) have made for a sailing experience not essentially different from a drive to a park while wearing a seatbelt.

It is my intent here to write about our experiences sailing with a person suffering from Alzheimer’s. John and I keep learning and adapting, and Hilary keeps changing as well. We have found that there has been as yet no reason to either abandon our dreams of sailing to Southeast Alaska or to have Hilary live anywhere but with us.

We look forward to sharing our sailing adventures with you. And yes, IMG_20150605_114738every single time we three take the boat out, it’s an adventure!

Jennifer

30-MAR-2016

 

 

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