Alzheimer's Dilemma

[GordMay]

Originally Posted by MV

...

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

And there doesn't appear to be much (if any) downside.

[David_Old_Jersey]

Originally Posted by harmony80

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

+1

[harmony80]

Thanks, Michael. These are great links. I had heard about the research but had not considered using singing to communicate. I will definitely explore this option and consider how I can use this on the boat. I love to write little bits of poetry so maybe putting the parts of a boat into a little ditty set to a familiar tune would be fun and might actually help when communicating? What a concept!

[Kathee]

I am a new member and your post struck me. As a person who has been taking care of a 60 year old with dementia--she has had it since she was 57--who was a forest ranger in Seattle, WA, and a nurse, I can say that it is far more difficult for her locked up in a facility where I come twice a week to give her some freedom. She took a trip alone to Alaska with the idea (her family suspects) of not coming back, knowing what was in store for her. She has not been able to speak or communicate in any way for two years. No use of her hands (she cannot feed herself) and no knowledge of whether or not she has to use the bathroom... But, unfortunately, she knows everything that she is missing and still sobs and misses her life. I would want to sail out into the middle of the ocean and just know that whatever trouble I got into was ok... No need to survive it. The alternative is laying in a bed, unable to communicate, unable to finally breathe...

[janice142]

Okay, I did the Alz caretaker (for Mother) her last eight years. My obligations moved her off the boat... the most important thing to remember is the word "yes" ... followed by "let me write that down so I don't forget" and "of course that is a great idea -- we'll do that on Thursday" (delay tactics!)

Mother did not respond well (vast understatement) to the word no, so I made every statement a yes. I labeled things "so I wouldn't forget/I get so busy that..." (things like the newspaper -- she'd throw it away before I got a chance to read it)

You're most likely dealing with a husband who has had tons of independence and has made decisions so the longer you can help him to feel fully in charge, the better. You're making the choices, but he won't know that. By leaving notes (by the coffee pot) and things out (visible) we managed for a while. For instance, her snack was by the coffee pot but under a cake lid (clear/one from the grocery store so it wasn't heavy or hard to move) and a note said "for Grandma" ...

As for sailing, having friends aboard may help for a time but be aware that at some point it will notch up the confusion factor beyond usefulness. Just being on the water is a good thing... walking the docks and chatting with boaters is excellent too and I know brought a lot of pleasure to mother.

Good luck. It's a long road but in the end one of value.

[capngeo]

I am a Paramedic as well as a 100 ton Master. I was hired a few years ago by some rich folks to help out (he had advanced Alzheimer's). Granted it was a powerboat, and they only went on day trips, but she was able to get him out on his favorite pastime. Towards the end, we disconnected all the topside controls and I ran the yacht from below while he sat on top and went through the motions.

Perhaps the answer instead of downsizing your boat is to upsize your crew. The local sailing club in my town is chock full of sailors without or between boats, and I'd bet you could find some near you as well. A lot of them would probably sign on for free just to get out on the water!

[harmony80]

Thanks George and Janice, these are encouraging words from the voices of experience.

[JanetGroene]

It's not quite the same but I know a woman who continues to travel by RV with her husband, not despite his Alzheimer's but because of it. She finds that it keeps him engaged and active. He is still a capable driver and, as long as she can handle everything else, everyone wins.

Originally Posted by harmony80

My spouse has been sailing a variety of boats in myriad locations and conditions for 45 years. About 3 years ago I noticed he was having difficulty navigating offshore, and shortly thereafter he was diagnosed with Alzheimers and has been on medication ever since. Now he sometimes forgets how to raise the sails, but can do it with a bit of minor coaching. He can do many things but I need to check everything he does. He has lost his confidence, and it takes him much longer to make a decision or to figure out what needs to be done next. Yet he still is in my view quite capable when we act as a team. I am a highly competent sailor, but I have no interest in changing the oil or figuring out how to maintain the outboard. We plan to keep sailing, but his family thinks it is unsafe because of hiscondition. 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.

[Pblais]

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

"Exact" is mostly after the fact. It is the attempt that matters more than the results. There is more comfort in trying for those that would try even knowing they can't know the results.

[harmony80]

O.K. Now. We have begun our cruising. Ran down the Chesapeake Bay barely ahead of Hurricane Sandy, which we weathered in Waterside Marina in Norfolk

[rtbates]

Don't give up hope There's been great improvement in alz patients given medium chain fatty acids via coconut oil. They produce ketones that the brain can use for fuel when it can't use normal form supplied by carbohydrates and sucrose..
I've been eating it for a month and I now remember things that before were impossible...

Conquering Alzheimers with Coconut Ketones

http://www.coconutketones.com/

[harmony80]

Still o.k., but I inadvertently hit a return and it loaded my unfinished comments. Our first 3 nights aboard we're in dock because I needed to know that my husband could acclimate to the boat. By the 3rd night he was finally able to find his way to the head in the dark and back into the bunk, which is all of 2 feet away from each other. That was an eye opener for me and made me really question if we should be doing this. But we left Rock Hall, MD, and anchored our first night in Selby Bay in 70 degree weather. Because of Hurricane Sandy I had to make another hard decision about whether to get hauled out or run down the Bay before Sandy hit. Having been flooded by Isabelle in 2003, I decided it was best to run south before flotsam arrived as a result of Sandy. We got the boat prepared and weathered Sandy in Norfolk with the wind sheltered by tall buildings. The process of stripping the boat and adding double and tripple lines confused my dear captain, and added to his confusion when we had to take it all off again! So we stayed an extra day just to give him a chance to era climate to the "normal" condition of the boat. Next was the ICW, and we decided to do the Dismal swamp, which the Army engineers said was clear and recently dredged after the first few miles. It was mostly uneventful, but I have learned to communicate more clearly with others on the docks and at locks to let them know that while we appear to have 2 hands on deck, it really is just one with a handicap, as I cannot prevent my husband from trying to help, which I've learned means "be prepared for anything to happen". Now we have been sitting in Oriental awaiting a boat engine part from Yanmar. Now it is really evident that mot having the able mind of the engineer that was once my husband has really hindered us, because he could have done this work and we would have been on our way. Instead, I am awaiting an install from someone else. But, it has given us time to reorganize everything on the boat, which we didn't do before leaving, including getting other spare parts aboard just in case. I hired a mechanic to teach me about the engine and how to change the oil...you never know...and I realize there is so much more I need to know. but, for now, if I know how to do something that is not urgent, he can follow one instruction at a time, and he still has the strength, and sometimes the willingness, to do it. And if he says no, I have learned to wait a couple of minutes and he may say yes. And he seems very happy and contented on the boat. I do not worry about how well he will or will not acclimate back to land once we are finished cruising...time will tell.

[ArtM]

Originally Posted by harmony80

I hired a mechanic to teach me about the engine and how to change the oil...you never know...and I realize there is so much more I need to know. but, for now, if I know how to do something that is not urgent, he can follow one instruction at a time, and he still has the strength, and sometimes the willingness, to do it. And if he says no, I have learned to wait a couple of minutes and he may say yes. And he seems very happy and contented on the boat. I do not worry about how well he will or will not acclimate back to land once we are finished cruising...time will tell.

Few of us have experienced what you are experiencing now, and I suspect that few of us expect that we will.

If you need or would like to have help, I would think there are some cruisers around who would enjoy meeting you and helping you both learn the additional skills you need, and perhaps to reorganize some things on your boat to help make your life easier.

I hope I'm not speaking out of place - unfortunately I'm not currently in a position to do this myself, but I would certainly like to if I had the opportunity. It's people like you and your husband that have helped to make cruising what it is today for the rest of us.

[Seaworthy Lass]

Hi Harmony
You are an absolute champion. And the fact that your husband "seems very happy and contented on the boat" must really reinforce to you that you are doing the right thing. It seems that there has not been a dramatic deterioration over the last couple of years? I know the course of the disease is unpredictable, but I am thankful for this, as much for your sake as his.
Sending my very best wishes.

[harmony80]

Originally Posted by Seaworthy Lass

Hi Harmony
You are an absolute champion. And the fact that your husband "seems very happy and contented on the boat" must really reinforce to you that you are doing the right thing. It seems that there has not been a dramatic deterioration over the last couple of years? I know the course of the disease is unpredictable, but I am thankful for this, as much for your sake as his.
Sending my very best wishes.

We discovered coconut oil about a year ago, and it seems to help with his ability to focus, and although he can no longer write because he cannot spell, he can still read.