Alzheimer's Dilemma

[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.

[Doodles]

Sorry to hear this. I don't know any others in this situation, but my gut feeling would be to keep sailing as long as possible. Of course the family will want to protect your husband as much as possible, but if the two of your enjoy it keep at it. Its your lives.

Besides, I would think anything that challenges the mind and body would be good therapy. Just my opinion of course.

[SaltyMonkey]

Very sad to hear this news. I know no one in your position, but I do worry that perhaps at some point it's going to be more than both of you can manage.

Worry about this for myself as well, as I get older. I'm forgetting little things...washing twice in the shower because I forget etc...

Keep us posted.

[daddle]

It's entirely your decision. You are his spouse and protector. The family's involvement ends at expressing their opinion. That's part of the spouse deal.

I'd say if you are both reasonably happy and safe then carry on. Reasonably happy and safe is about the most any of us can expect. Be brave.

[maxingout]

It's one thing to have short term memory loss, and to forget how to do certain tasks on a yacht. It's quite another thing to have impaired judgment.

To me, the dividing line between sailing and not sailing is impaired judgment. When judgment is obviously impaired, it's time to have different activities in a less demanding and more forgiving medium.

[hellosailor]

Harmony, having dealt with dementia in the family and with friend's family, I can tell you an awful lot depends on how quickly it progresses, and it can change radically and quickly with no real prediction.

If your spouse occassionally gets lost (figuratively) on the boat--you are sailing solo and he may very well be in danger. Suppose he forgets to keep one ye on the boom, and it clocks him? Or you go voerboard, and he forgets you were just on deck?

I very much agree with you that it would be good to keep sailing as long as you both can, but once folks start "getting lost"...even when that's not literal, it is time to reconsider what is safe versus what must be reluctantly reconsidered.

Maybe you can find some guests to crew with you? Or at least, make sure you are taking precautions--as if you were sailing solo, because now you've got to keep one eye out for yourself, one eye out for the boat, and still another one out for your spouse.

Whatever you decide, good luck with it. And don't forget to take care of the caregiver--Alzheimer's is in some ways harder on the ones who don't have it.

[SkiprJohn]

Yes, I have a friend who has done extensive sailing since WWII even round the world a couple times. We started taking notice when he t-boned another boat on its mooring and ran one of the boats aground by freezing on the tiller. Now there is always a competent skipper with him and more often it is his spouse who is a great sailor. He truly loves to sail and none of us would ever think of taking the opportunity away from him.
regards,

[David_Old_Jersey]

Originally Posted by harmony80

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.

No first hand / relevent experiance to help.

But just to say that in some things there are no right or wrong decisions, just practicalities to consider - often with no "good" choice either way. In your shoes I would settle for the right intentions and if the practicalities turn out different from hoped then so be it as............

........IMO both you and the family are right. But IMO your call, and when made for the right intentions then whatever the call or the outcome is / was will be the right thing. The present risk is that he does something that endangers himself / the boat / you - whilst these risks remain at a level acceptable to you / him then I don't see a problem (the rest of us will just have to take our risks ). As you say, he's happy onboard with you - and I strongly suspect it's not just about the sailing He knows he's in a place he's loved and even if things later go further to the point of being ashore and his specific memories fail him and the technicalities of where that love comes from eludes him - deep down it will always be there. and be felt. It's a funny thing is love

But on the practical front and depending on circumstances with the family may be worth trying to keep them onside as later their support / help may be needed onshore. Even if the temptation is to tell them to butt out I am sure you have discussed matters with your husband - why not get him to write his thoughts down in a letter or shoot some video onboard / under sail? to either give to the family now and / or for later (for you as well).

Of course all circumstances and choices vary - but in your husband's shoes, for another week onboard with you I would settle for some risk of wandering overboard...........

[Dockhead]

Originally Posted by daddle

It's entirely your decision. You are his spouse and protector. The family's involvement ends at expressing their opinion. That's part of the spouse deal.

I'd say if you are both reasonably happy and safe then carry on. Reasonably happy and safe is about the most any of us can expect. Be brave.

+1

I've seen a similar situation. Not Alzheimers but loss of mental acuteness, memory problems, and a collapse of confidence.

Only you can decide, but when I get to that point I would hope that my loved ones will support me and keep pushing me out there. The risks go up dramatically but the risks are well worth taking, in my opinion, and more and more worth taking the further along one gets.

If on the other hand you take him off the boat and park him in an armchair somewhere, where there are no such risks, he will deterioriate fast, having no challenges and not much interest in life.

Personally, I'd rather die with my sea boots on, even if the risks come out wrong and it's a few years earlier, rather than vegetating somewhere in a risk-free environment.

[sarafina]

We have two lovely couples in our club dealing with this. In each case the still healthy spouse kept sailing as long as was feasible. The impaired spouse, like yours, was happy on the boat and happy on the water. One of the couples went to using harnesses and jacklines at ALL times. Friends sailed with both couples as things progressed. They were all getting older and singlehanding for the one spouse while keeping the ill partner safe was a lot to manage. A friend along extended their sailing by a few years in each case.

Now the dementia patients no longer sail. But in each case the club has remained a huge source of support and comfort for the couples. They can come to the club. It's a familiar safe environment where everyone knows the deal and helps out. Going to resturants has become unmanagable because of unpredictable responses and reactions, but dinner at the club is fine, no problem if the evening gets challenging. Someone packs up the meals and they get help out to the car and that's that.

It's somewhere the supporting spouse can get support for themselves, and a break. In one case the ill partner get parked happily at the bar with a soda and watches the room and chats with whomever sits down to say hello. No one expects her to remember names and we often introduce ourselves on bad days when she just doesn't remember at all. But she is happy and her husband is able to relax and enjoy as well.

I hope that you are able to find the support you need as you manage your lives. Best of luck.

[harmony80]

I really appreciate the suggestions from everyone as well as the encouragement.

[anjou]

Traditionally this has been a difficult subject for society to face and discuss but its an ever growing feature of our lives and the sooner we become more comfortable discussing the unthinkable, the sooner its going to get easier to deal with.

A friends mum has severe memory loss due to an infection she caught whilst in hospital for something else. It drives Grace mad when mum stays with her, and its not mums fault that she only has a 30 second memory.
I just tell myself, there but for the grace of god........and prey its never going to be me, and just as an added insurance, I do all i can to help out and be as patient and caring as I can.

Continued mental stimulation is a benefit. Its a 'use it or loose it' approach, so I guess its good to keep active and doing something youve enjoyed in the past.

[AquatiCat]

Agree about taking on another person as this progresses, but on a 35' that would be tight. I also keep thinking of a service dog for some reason... you can't stay awake 24/7 and an intelligent, well-trained dog can watch over someone with dementia when the partner is asleep.

[Jim Cate]

Dear Harmony 80,

This is from Ann on Insatiable, not Jim.

David Old Jersey suggested two things that I thought were brilliant. The first is to try to keep your husband's family involved. I can imagine how defensive I might feel in your shoes, but perhaps you can explain how important it is for both your husband and you that you do what you feel is best for the two of you. Let them know you appreciate their concern, AND that you (and he) will make the decisions.

The other idea David mentioned that I thought was wonderful was to document your husband's pleasure and contentment while sailing. Firstly, it might help with the family issue; secondly, it will reinforce for you that you made the right decisions; and thirdly, I'll bet there will come a time when your husband will enjoy watching that video time after time.

I'd like also to second the idea that you seek support for yourself. Your batteries will need re-charging, too, and getting those ducks and whatever legal ducks are necessary lined up beforehand may help you to feel safe continuing to do what you both love.

Both Jim and I wish you the best of luck with this one, and smooth sailing.

Ann, s/v Insatiable II, lying Queensland, Australia

[DeepFrz]

Anne just touched on something very important, legal documents. It is very important that you have POA so that you can properly look after your husband's affairs. I had joint POA with my brother to look after my mother's affairs but because my brother wouldn't agree to execute it at the bank and with the government we came close to losing a substantial amount of money. Because it was a "jointly or severally" POA I was at least able to ensure she had proper medical treatment but I could not look after her finances.