Alzheimer's Dilemma

[Bash]

My dad, the man who taught me how to sail, died of Alzheimer's. What a horrible, cruel disease it is for a sailors. There was a point when dad could still mind the helm with the best of them, but he couldn't remember how to make it back to the harbor. That's when we knew there were problems.

They call Alzheimer's Disease "The Long Goodbye." It's an even longer goodbye to those who can no longer connect with the wind, the sea, and the four points of the compass rose.

The navigational skills go first. The names of things go next--the ability to differentiate between "luff" and "leach," "sheet" and "halyard." Then Dad lost the procedures: how to raise sails; how to reef. Finally, he lost the ability to read the wind, read the seas. Wind went from being a friend to being a disorientation.

But he never lost his love of sailing, not as long as he could breathe. I'm grateful to have been able to take him out those last few times. He enjoyed it, and to this day I treasure the memories.

I'd give anything to have Dad, just once, sail the boat I currently own. Anything.

[hummingway]

Originally Posted by harmony80

I think it would be cruel to stop him from sailing. They don't realize that when it is just the two of us and nobody is distracting him, he sails and I navigate for him and he is happy. I don't want to take that away from him. Do you know any other sailors with a similar situation? If so, I would love to hear from them and know any of their techniques they use to live aboard. So far it seems easier aboard than ashore.

I wish I could help by directing you to someone living this way. It's such a heart rending thing. I understand completely it being easier on the boat. It is a small, familiar environment and when the world is becoming a confusing place it could be it's easier for him to keep his bearings. I see no reason you shouldn't continue as long as you feel you can handle it after all if it makes you both happy that's got to be a good thing.

I won't repeat Bash's moving story with my own but I will say that I believe you have to live life in the manner that brings you joy because all to soon our bodies and minds betray us to our final destiny and it's too late. I wish for you and your husband all the best since I don't feel there's more I can do.

[CastOff]

I say downsize the boat to a daysailer like a Montgomery 17, and spend the rest of your sailing days exploring large lakes. His family should accept this as a concession on your part; and you might find you both enjoy the relaxed pace of sailing where it's easy to take a break for a shoreside lunch or excursion.

When I had my smaller boats i was always taking along older skippers who no longer had boats of their own for one reason or another. There were many times they taught me a thing or two, which added up to a whole lot of sailing/boating knowledge in the end.

You don't get older sailing your mast just keeps getting shorter LOL!

[wadda]

Originally Posted by harmony80

<snip> but I have no interest in changing the oil or figuring out how to maintain the outboard. <snip>

Pay someone to change the oil and fix the outboard...pretend you're retired and go until you don't feel safe.

[harmony80]

Thanks for these great suggestions. I like the idea of a dog, but pets onboard add another level of responsibility for me and other complications like taking them ashore etc. I did just purchase dual wristband alarms that will sound if either of us is further than a boat length away from the boat and we do wear them. And we do have the lawyer thing taken care of, including POA. And I do like the idea of having friends aboard, and everyone is correct that we will need support at some point in time. And we may go to another country where caregivers cost less.

[harmony80]

Originally Posted by wadda

Pay someone to change the oil and fix the outboard...pretend you're retired and go until you don't feel safe.

great suggestion!

[harmony80]

Originally Posted by Bash;

But he never lost his love of sailing, not as long as he could breathe. I'm grateful to have been able to take him out those last few times. He enjoyed it, and to this day I treasure the memories.

I'd give anything to have Dad, just once, sail the boat I currently own. Anything.

Thank you for sharing this.

[hellosailor]

Harmony-
Having been in this situation...Be aware that having a power of attorney, by itself, doesn't accomplish anything. Anyone that needs to see it, will usually require a notarized copy of it, unless your state also has an affadavit law that requires them to accept a simple notarized affadavit (from you, signed only by you rather than the two of you) along with a plain copy of the actual POA.
Pardon me if that's old news to you, it srprised me. And made things much simpler, because now I can simply go to a notary, alone, and get originals made when I need them. Served along with a simple copy of the longer double-signed notarized document.
Your options will vary by state, but these days...even the pharmacy wants a notarized POA before they'll talk to you. And some of the institutions (Medicare) require their own forms, not just the state POA. Then there are the banks, who just don't understand, sometimes they aren't allowed to require their own forms, they have to take what the state sanctions. Again, varying by state.

[Pblais]

We plan to keep sailing, but his family thinks it is unsafe because of his condition.

Everyone here has limitations in their ability to sail. I think you might have to make some changes in how you sail but I can't see why you can't keep it up at least until the point where mobility gets to be too limiting and or uncomfortable. I do see maybe adding another crew member and having some help for some of the tasks some of the time. You still need to stay within the limits of the crew because we all have to do that all the time too.

If you can overcome limits through other means then you will have met that criteria of how much sailing can be done.

I've lost three family members to Alzheimer's and they had nothing in common with the effects of the disease nor any way to predict what they would be or when. None of them survived but it didn't kill any of them either. I'm going around once again with my mom right now. You work with the abilities rather than speculate the future disabilities. You'll never know what someone can't do but you can estimate what they can do and if they really want to be there.

Sailing is mostly just being there. Some people just need a little more help.

[harmony80]

Originally Posted by Pblais

If you can overcome limits through other means then you will have met that criteria of how much sailing can be done.
You work with the abilities rather than speculate the future disabilities. You'll never know what someone can't do but you can estimate what they can do and if they really want to be there.
Sailing is mostly just being there. Some people just need a little more help.

Thank you, Paul. This is the voice of experience I was hoping to find on this site, and I so appreciate your input. I had planned on retiring this year so we could begin cruising again, but I am delaying it so I can install an auto helm. We have never used one before, but I now think it is imperative equipment so we won't take off again until fall 2011 so that we have time to use it before putting it and me to a real test. And I am studying up to improve my weather map reading skills, which up to now has been his expertise. I have however sailed in enough conditions to know that in addition to knowing how to sail, good communication and rules to the road are key skills, but I so appreciate your realistic perspective. (We once got caught between a large pleasure craft on autopilot with no visible captain and a ferry boat coming around it's last exit mark--the ferry boat had very little time to react but the captain let me know to hold my course no matter what, and we did as he said as the ferry boat did a wheelie around us in shallow water on one side and rocks on the other to evade a collision with the motor yacht.) I think we areholding course again.

[Pblais]

A really good autohelpm just can't be a bad idea. I wouldn't be without one myself. It needs to be good enough to steer when you can't or else don't bother. For a Caliber 35 I would go for a below decks hydraulic unit. I had good friends that had one. They couldn't come up with a name they could agree on so they just called the boat "Caliber". The name was already on the boat.

I think you have reached a point as a sailor where you need to admit all the things you really do know. You've seen enough to know better probably says a lot more. It really is about what you already know at this point. It's time to be the skipper and that is the key to being a skipper. You have to work with what you know and lay aside the things you don't know. All good skippers do this. It is the best judge of what your personal limits are as a skipper. You already care deeply about the crew. I can't think of a better test for being a skipper.

Who knows how much you have just failed to admit that you really did know all along. There could be worse things than if you also learned a lot more along the way. It's mostly about making it fun. It was the real goal the first day you stepped on a boat and it should be the last goal too.

[harmony80]

Originally Posted by Pblais

A really good autohelpm just can't be a bad idea. I wouldn't be without one myself. It needs to be good enough to steer when you can't or else don't bother. For a Caliber 35 I would go for a below decks hydraulic unit. I had good friends that had one. They couldn't come up with a name they could agree on so they just called the boat "Caliber". The name was already on the boat too.

Great name for a boat! And a hydraulic unit is what is being added. Thanks much for everything.

[MichaelC]

Harmony, I have never, ever, in my life seen a more total statement of love for a spouse that this. EVER. You are the woman that all men fantasize about having as our partner. I think the downsizing suggestion was a good one. Look at smaller boats, like an Eric Jr, or a Contessa. Try not to alienate his family, but ignore them, basically. You know what he loves as every one who posts here does. The boats and the sea, the sailing of one with the other, is the syren's song we all adore and heed. Find joy in the learning of ultimate skills for yourself, for surely that is something he would want for you. Fly high, beath deep, be with him as long as you can.

[harmony80]

sometimes it is just about trying to do the right thing, even if we don't always get it exactly right.

[SV Someday Came]

Hello

While my response is not along the lines of your question, I hope it will provide useful information. The brain processes music with different brain structures than it uses to process language. Research into dementia shows that music - singing -- can access life memories stored in the brain no longer accessible by language. In other words, someone with Alzheimer's who cannot remember their ABCs when asked to recite, can sing their ABCs. And, if I recall correctly, several studies on dementia go on to show that memories formed at the time of learning a song can be recalled while singing. Thus, elderly patients when singing "Happy Birthday" can recall many birthdays long gone. (Which is why people with Alzhiemer's sometimes cry when singing Happy Birthday or nursery rhymes -- memories from the past flood the brain with all the emotions attached). We are seeing this same phenomena with stroke survivors and with folks that have survived explosions that have damaged parts of the brain: Singing can help recall recall memories when speech fails. Frankly, music provides a deeper level of neuronal healing that has yet to be adequately understood.

I am not suggesting putting your boat's chores to music -- but I am suggesting considering investigating and possibly integrating singing and music into your repertoire of interventions.

How Singing Improves Your Health (Even if Other People Shouldn't Hear You Singing)

BBC NEWS | Health | How singing unlocks the brain

I realize that the research is scanty in this area -- but I believe there is sufficient anecdotal evidence to warrant a deeper look at using music.

Best of luck to you

Michael