Alzheimer’s and Narrowboats

[Didne]

Anyone got any experience with having an aged parent with Alzheimer’s aboard their narrowboat ? … I want nothing more than to live on a narrowboat … for the time being just holidays and days away would do … but I need to include my elderly mum who is in the early stages of Alzheimer’s … she isn’t taken to wandering off (and in fact physical mobility issues would hinder her with that anyway … boat would have to be adapted for easier access) … when I talk to her about holidaying or even living on a boat she’s enthusiastic … she’ll have forgotten the conversation before the next time the subject comes up but but she’ll end up being enthusiastic again …but how possible is it really ? … Im sole carer for mum, but my own mental health is really going down the pan with feeling so trapped, stuck in her house and going nowhere, and a narrowboat would really help me in that respect … but not if the boat ends up trapped in a marina costing a fortune to go nowhere if it is just plain impossible for mum … Your thoughts appreciated … Cheers, Didne xxx

 

 

[Tony Brooks]

I don't know if this helps, but we took my dad on a very small four berth hire boat on the Chelmer navigation for a few days. He was fit enough, but I think his experiences in bomber Command in WW2 lead to him eventually pickling his brains to an extent. It went well enough, although he did miss going to the pub each evening and did read the same newspaper each day and comment on it as if it was the current one. When we gt our own boat he sat there perfectly happy as we moved along, but that was only day trips.

[beerbeerbeerbeerbeer]

1 hour ago, Didne said:

Anyone got any experience with having an aged parent with Alzheimer’s aboard their narrowboat ? … I want nothing more than to live on a narrowboat … for the time being just holidays and days away would do … but I need to include my elderly mum who is in the early stages of Alzheimer’s … she isn’t taken to wandering off (and in fact physical mobility issues would hinder her with that anyway … boat would have to be adapted for easier access) … when I talk to her about holidaying or even living on a boat she’s enthusiastic … she’ll have forgotten the conversation before the next time the subject comes up but but she’ll end up being enthusiastic again …but how possible is it really ? … Im sole carer for mum, but my own mental health is really going down the pan with feeling so trapped, stuck in her house and going nowhere, and a narrowboat would really help me in that respect … but not if the boat ends up trapped in a marina costing a fortune to go nowhere if it is just plain impossible for mum … Your thoughts appreciated … Cheers, Didne xxx

 

 

Please don’t,

unfortunately I don’t think moving onto a boat is your solution,

You’d be taking on a whole load of new responsibilities,

just looking after yourself and a boat will be very hard work,

living on a boat really ain’t the doddle it’s made out to be

 

my mother has Alzheimer’s and the last thing I’d do now is invite her on board,

sadly your mother’s condition (and my mother’s) will only get worse,

 

I don’t know what the answers are but I think it’s best to seek some professional advice,

Something my sister and I are trying to sort at the moment. 

 

 

 

 

[Sue68]

Hiring or a share boat are better solutions. Mobility could be more of a handicap. It's why we left our boat. I hope she is claiming attendance allowance.

[Ken X]

Unfortunately, my wife and I have had the experience of taking both mothers through Alzheimer's to eventual death. 

 

It constantly challenges you in so many ways from the health issues and nursing provision, all the paperwork associated with running their lives, Power of Attorney, claiming all the monies you are eligible for and liaising with the local authorities.

 

At times we were scanning and exchanging documents, arranging doctors and hospital visits and ordering medication at the same time as cooking, washing and generally caring for mum.  Then, just as you relax, thinking you are in control, life bites your bum and the next crisis appears.🙂

 

There is no way I would attempt to undertake what we did from a boat.  Sorry but there it is. 

 

What you need is support for yourself to ensure you remain able to provide the love and care your mum will require.  Talk to people, network and build a virtual support structure around your family whilst you are in the early stages of the illness. 

 

Then you can go for visits and days out, hopefully on the water if this is what you enjoy, and keep you both as happy as possible.

 

There were good days and times when we laughed fit to bust, so it's not all negative but easy it is not.

 

We both wish you well and hope you get the support you will need.

 

 

[enigmatic]

Day trips where you can watch her and talk to her at all times sound easier than being on a canal overnight.

 

I would suggest looking into charity boats in your general area as a first step: there are quite a few of them specialising in taking small groups of people who are elderly and/or have disabilities on day trips. That way, you can see how she reacts to the canal with the support of a crew (who quite possibly have some very relevant experience of their own)

[Stroudwater1]

I really wouldn’t get a boat that includes your mum. It’s possibly quite dangerous with all sorts of things needing maximum brain power that she sadly won’t  have. Things like leaving water or gas on, roaming at night getting off the wrong side or in locks etc. The other posters are quite right.

Perhaps you can try respite care for her and you escape on a narrowboat or get help from the Alzheimer’s society. I think you can get a sitting in service via them. As well as attendance allowance I hope you’ve got a council tax rebate for her?

 

I presume she’s under a memory clinic who may help you more with things specific in your area. If you are moving on a boat those things may change availability as you move around 

[blackrose]

3 hours ago, beerbeerbeerbeerbeer said:

Please don’t,

unfortunately I don’t think moving onto a boat is your solution,

You’d be taking on a whole load of new responsibilities,

just looking after yourself and a boat will be very hard work,

living on a boat really ain’t the doddle it’s made out to be

 

I think this is right. I know nothing about Alzheimer's but boat ownership can be very challenging and time consuming from a maintenance and upkeep perspective. It can get frustrating even for those who are good at DIY and I'm sure it would just add to your already considerable burdens.

[rusty69]

TL;DR In the short term maybe, longer term, doubtful.

 

I have no experience of parents on boats with alzheimer's (the parent, not the boat). I do have experience of boats though,and a mum who was diagnosed with vascular dementia nearly 8 years ago, so my words might not be much help to you, but I will add them anyway, and apologise in advance as you probably know the day-to-day stuff.

I would agree with a lot of what has already been said, particularly with Ken X. Get as much support in place as you can, be that power of attorney (hopefully already in place), attendance allowance, mobility aids, fall alarms and carers allowance for yourself and blue badge for parking if you drive. Spend some time looking at the age uk website; and contact local authorities to see what help you can get.

Now, onto the boat stuff.Firstly, I would be quite concerned about what your mum would be doing whilst you were steering the boat. If sat inside alone, even going through a lock may spook her, and if outside, you would have to leave her so you could work the lock. You say your mum already has mobility issues, and that any potential boat would need to be adapted. As your mum is in the very early stages of dementia, and if the boat can be adapted to her needs, and IF you can get a third hand to act as a carer then, in the very short term you may well 'get away with it', especially on day trips. Longer term, as others have said, it's unlikely, and you will either end up with a boat you can't use as a liveaboard or you will have to find someone to care for mum so that you can.

I found with my own mum that as the disease progressed she became more unsteady on her feet. I suspect on a moving boat it would be much more disorientating and may lead to increased falls. Falls are not good at the best of times, but add in a bit of water,locks,solid fuel stoves etc, then a fall becomes much more of a concern, especially if you are in a remote location and require assistance.The changing scenery may also be detrimental in the later stages as the familiarity of surroundings that you get in a fixed location would disappear.

Don't give up on your dream of boat ownership though. You may well be able to get out on the water by using respite services, day care centres etc. Living aboard would be more of a challenge, especially during the later stages of mum's dementia.

I was far too selfish to care for my mum on a day to day basis myself, but have a small idea of what it is like albeit on a short term basis and I really feel for anyone that takes it on long term. Don't forget that you must care for yourself as much as you are for your mum and having a dream will help.

As for my own mum, she moved into a home earlier this year after 8 years of support from her family.

I wish you the very best.

Edited November 17, 2023 by rusty69
remove ambiguity

[Crewcut]

Here's a link that might be useful Didne...

 

https://canalrivertrust.org.uk/boating/go-boating/boat-holidays-and-trips/accessible-boat-hire-and-trips

 

 

[Didne]

Thank you all for your thoughts and links …  and to @Bod for the p.m. … I’ve always harboured a notion of one day living on a narrowboat, but I must admit, in my mind it was always just me on my own sailing off into the sunset with no one to please but myself … doing it now does seem to be developing into a circus to try and please everyone else all at my expense and inconvenience … there are a couple of family members keen to come along and help, but it would not be the peaceful experience I crave and a long way removed from what I was looking forward to and I’m at the stage now of really going off the idea … at least until I can do it my way … I do need something positive in my life though … perhaps a share boat as suggested above would be a good compromise … could try that out with mum … if she’s okay with it great … if she isn’t I could still go without her and find temporary respite care for her … I think we could both do with a break from one another … and if I only manage to get 2 or 4 weeks a year then at least it’s something to look forward to and I’m not paying for it to sit rusting in a marina doing nothing the rest of the time … I’ll have to look into that … Thanks … xxx

 

 

 

 

[agg221]

Not sure quite where you are geographically or whether this is financially viable but I had a thought.

 

Although our boat is mainly used for family trips, there are times when I use it on my own. It isn't strictly a bolthole, but there have been occasions when it has certainly been an advantage to get away and have time to stop and think, even if only by going for one night with a quick trip out and back. The mental health benefits of this should not be under-estimated, particularly in your circumstances.

 

If you are in a suitable location, would it be viable to have a relatively small boat, say 30', and keep it fairly locally? It wouldn't be for living on, but rather for short trips away when care can be arranged. If relatively local then that could just be a night, so that it was easy to get back if needed but it is still a break. A shorter boat is cheaper to own, maintain, licence and moor but 30' would also be big enough for a week or two away on your own if you got the opportunity.

 

The huge advantage of ownership is that you can do those short ad hoc trips when the opportunity arises. We go out all year round - not necessarily to go anywhere in particular but to potter about getting a few things done on the boat, probably with a run up to the local town, moor overnight and go out for a meal. It's only 20mins boating each way, or 40mins the other way to the winding hole, but that doesn't feel like it matters - it's the being there, cruising along and not thinking about anything else in particular. It does come at a financial price, but if that is viable then the advantage of being able to get away from it all for a bit, even if that is only brief, might make it worthwhile.

 

Alec

[Didne]

Actually yes I was pondering on that idea too … wondering if maybe a cheap and cheerful grp boat might even do ? … xxx

[Poster girl]

Last year when we cruising we met a boat at a lock with an elderly gentleman steering and an elderly lady trying to do paddles with tears in her eyes and no will or strength to carry on. After assisting her through the lock and then to moor up she started to explain that in a lucid moment her husband with dementia had begged her to take him on their narrow boat. In her heart of hearts she knew she couldn’t cope but wanted to try and do it for him. We left her having made sure she had contacted her family and arranged for someone to come and assist her whist they went back to the marina. She said the only way she could be sure that he was safe was to let him steer and then she worried herself sick he would step off the back or side without sensing danger. Things might not be so bad now but sadly they will get worse. Talk to people, tell them how you feel , help is available and admitting it to others is the first step to getting it. Good luck and take care.

[Crewcut]

14 hours ago, Didne said:

Actually yes I was pondering on that idea too … wondering if maybe a cheap and cheerful grp boat might even do ? … xxx

 

In the circumstances a great idea, something like this? While all boats take time and work and money, something like that would be relatively easy to maintain and keep, you'd learn a lot & have a much better idea for the future of whether or not full time boat life might really suit you...

[Stroudwater1]

Two other advantages of a GRP boat they are usually a lot faster than a narrowboat, engine depending. You can travel further in a given time if necessary and as for any short boat you don’t need a winding point necessarily to turn round. 
 

 

 

 

 

[agg221]

7 minutes ago, Crewcut said:

 

In the circumstances a great idea, something like this? While all boats take time and work and money, something like that would be relatively easy to maintain and keep, you'd learn a lot & have a much better idea for the future of whether or not full time boat life might really suit you...

Completely agree - what you don't want is a project - something that you can jump on and use, and do bits and pieces to to make it your own is ideal, but not something which is another source of stress. A cheap steel boat is almost certainly going to be a source of stress as it is cheap for a reason. A boat such as the one linked to by Crewcut may be perfect for what you are currently wanting.

 

The only thing to watch for in GRP boats is whether there is heating. Given your likely pattern of use you probably don't need to worry about high levels of insulation and multi-fuel stove fitting (although it would be nice if it was there, and you could probably fit one as a reasonable scale of project) but if you are planning on getting out on it occasionally at any time of year, you do need to make sure that the heating will allow this. I wouldn't regard this as a barrier - just something to be aware of in the price as you either need it to be present, or budget to add it.

 

Alec

Edited November 18, 2023 by agg221

[Didne]

Wow … that’s amazing to hear your positive views on a grp boat … I must admit I was expecting them to be viewed as ‘the poor cousin’ to steel narrowboats … my completely uneducated and novice thinking is that they look rather fragile in comparison … and for heating (and I know this sounds stupid) they look like they might melt if you put a solid fuel stove on board (?!?) … but I do rather like the look of that one … and maybe it’d be well suited to rivers too ? … I know absolutely nothing about grp boats though … even less than I do about narrowboats (and that’s saying something ! ) … if that were a steel narrowboat I’d be a bit freaked out by its age 1986 … that’s because I already had a 1991 narrowboat drastically fail a survey due to thinning of the baseplate steel so now I’m rather wary of older boats … do grp boats have surveys too, and at what age do grp boats start developing age-related problems ? … I think I need to start learning about them … xxx

 

 

A really good point about learning about boats and boating in general too, by starting off with a ‘beginner’s boat’ … xxx

 

 

 

 

Edited November 18, 2023 by Didne

[Ken X]

If you have the budget for a small grp runabout then this may be the answer to gain experience of the world of boating. 

 

I know little about the grp market but I do know you are going to need time away from caring for your mum to recharge and reset your mind.  Nobody can care 24/7 and remain effective, particularly in the long term.

 

If you can share the cost and time needed to maintain the boat with family members even better.  You may all find it therapeutic.

[Crewcut]

1 hour ago, Didne said:

Wow … that’s amazing to hear your positive views on a grp boat … I must admit I was expecting them to be viewed as ‘the poor cousin’ to steel narrowboats … my completely uneducated and novice thinking is that they look rather fragile in comparison … and for heating (and I know this sounds stupid) they look like they might melt if you put a solid fuel stove on board (?!?) … but I do rather like the look of that one … and maybe it’d be well suited to rivers too ? … I know absolutely nothing about grp boats though … even less than I do about narrowboats (and that’s saying something ! ) … if that were a steel narrowboat I’d be a bit freaked out by its age 1986 … that’s because I already had a 1991 narrowboat drastically fail a survey due to thinning of the baseplate steel so now I’m rather wary of older boats … do grp boats have surveys too, and at what age do grp boats start developing age-related problems ? … I think I need to start learning about them … xxx

 

 

A really good point about learning about boats and boating in general too, by starting off with a ‘beginner’s boat’ … xxx

 

 

 

 

People do still have surveys on fibreglass boats and if you start reading up about them you'll come across osmosis as a thing with fibreglass hulls. For practical purposes you can forget about it unless on inspection you see a lot of blistering on a fibreglass hull. If there's a bit of blistering it can easily be dealt with & I'll get it in before anyone else does & say no (fibreglass) boat ever sunk due to osmosis...

 

Through hulls always merit inspection - these are holes in the hull to let various things out or in or to vent air, e.g., like sinks draining out, toilet water in/out, engine cooling water in. That particular boat has an outboard and a chemical loo so I don't think there would be any below the waterline through hulls that you'd need to worry about. Any through hulls below the waterline though should have a seacock fitted and their operation should be checked. I had a look at a Highbridge 32 recently and that had heavy wooden beams (I don't really know what to call them - underwater rubbing strakes?) fixed underneath to stop the fibreglass rubbing on the bottom in shallow water. Water in the bilges might suggest these needed refixing/sealing but if there's no water in the bilges when the boat's in the water again I wouldn't worry unduly. That said I would absolutely want to see it out of the water to have a look at the condition of the hull below the waterline and the beams underneath (assuming the 27 also has them). Other things to check would be the integrity of the mounting for the outboard engine to make sure it's strong and properly fixed in place and the same thing for the rubbing strakes down the sides.

 

With fibreglass you really don't need to worry about the condition of the hull in the same way that you do with a steel boat because fibreglass doesn't erode over time like steel can rust as such. It's very strong, larger areas of it can flex a bit and it's not hard to repair. The oldest fg boat I've had was a sailboat built in 1969, the things that do wear out like the engine and the sails and the rigging was all much newer but the hull itself was original & very sound. Depending on your risk tolerance you might want a survey but taking someone with you who knows what they're looking at & can give you an unbiased view, obviously testing everything to make sure it works as it should would suffice for this sort of boat in my opinion...

[Alan de Enfield]

42 minutes ago, Crewcut said:

With fibreglass you really don't need to worry about the condition of the hull in the same way that you do with a steel boat because fibreglass doesn't erode over time like steel can rust as such.

 

I think you mean 'corrode' rather than 'erode'.

Erode means rubbing or wearing away and I'd suggest that GRP is far more suseptible to eroding that steel.

[Didne]

Hmmm … well … right … on Saturday I took mum to see a 55’ narrowboat I was considering buying … the whole point of looking at boats of this size is to enable mum to come for holidays and days out … which means needing space to accommodate her plus a couple of crew to help with her since I cannot look after her and the boat at the same time … having hitherto been all enthusiast, everything changed once she got on the boat … too old, too tired, likes her own bed, nothing to do (huh?!?) … then on Sunday we went out for a trip on a little day boat and all I got from mum the entire time we were out on the water was ‘when are we going home? … can we go home now?’ … hmmm … well … not much fun for either of us … hmmm … at least I’ve discovered she really feels about it before its too late … it’s just not for mum

 

So one good thing that came of that was that the day boat was actually a little share boat … very basic, small, old, cheap and cheerful, run by a cooperative of the owners and available year round often at short notice … it roves all over the canal system wherever each owner fancies going and only has winter moorings (not so far from me) which it doesn’t return to until the end of the season, so you never know til the last minute where it’s going to be so no getting bored with the same stretch of canal … I really like that … and Its so basic I can afford it … I’ve said I’d like to go ahead and join in … and that would be great in giving me some breaks away and some boating experience without all the expense and responsibility of sole ownership 

 

But there’s another issue here … when mum either dies or goes into a care home, her house will have to be sold (she’s actually got enough savings for a few years in a care home without selling the house (unlike me … having been caring for her and unable to work I have very meagre savings) … but having been trapped here far too long already looking after her, I don’t want to remain here any longer than I absolutely have to ... plus I couldn’t afford the bills for such a big house anyway) … but that will leave me with nowhere to live … I cannot face the prospect of ending up stuck in some little flat somewhere in one permanent settled place … I love to travel, I love new experiences and discovering new places … being stuck here in this one place all this time has already been detrimental to my own mental health … and the idea of the boat was to give me somewhere to live after mum doesn’t need me anymore … somewhere that can move with me … Mum was going to fund it initially (to come out of my inheritance later) … When the house is sold I thought my one sixth share would come straight to me and that would be my money to live on … turns out it’s not like that … apparently (lifetime interest … I don’t really understand all this) mum is entitled to the interest from the sale until the day she dies meaning I have to wait until then for the money to live on … and in the interim ? 
 

So I’m starting again looking at smaller boats ... as a future liveaboard … something just for me … no need to take accessibility into account any more if mum’s just not interested … no need to have room for anyone to look after her either … but it’s going to have to be a lot cheaper to run if I won’t have house-sale money … maybe a really small narrowboat … if it ends up having to be a grp boat instead id be a bit concerned about collisions with steel boats on the canals, so I wonder about getting a river boat instead ?… if wider than 7’ I’d be restricted to wide canals but perhaps a river boat would be okay in coastal waters as a means of accessing other rivers ? … I know absolutely nothing about grp boats … I feel like I’m right back at the beginning again … 
 

Your thoughts, as always, welcome and treasured … xxx

 

 

[haggis]

Sorry your Mum didn't take to narrow boating but as you say, better to find out now rather than later. It sounds ideal getting a share in a boat so that you can go cruising to have a wee break and that gives you time to look around for a boat which will be suitable for you to live on. Could some of your family help to fund the purchase and you could pay them back when your mothers house can be sold?

[Ken X]

It's quite a challenge dealing with Alzheimer's.  We had many similar conversations to yours whilst on days out  Unfortunately it comes with the territory.  Enjoy the good days.🙂

 

One of our mums gradually regressed to a child-like state over several years but we managed to keep her in her own house until ten months before she died.  She had stopped sleeping by this time and her live-in nurse was not able to keep her safe.  Mum was dozing for one hour then roaming for two hours continuously and the poor nurse just could not keep tabs on her 24/7.

 

I have no wish to delve into your finances but it's really worth making sure you are claiming everything you are entitled to and not paying anything you don't have to.  A bit of time with a independent financial adviser or similar may be useful.

 

I tapped up my financial advisor and his advice saved us a lot of worry.  One little gem amongst many was the fact that when mum finally went into care for her own safety, she only had enough money for eighteen months care.  Then her house would be sold to fund further care.  He said "When you have six months or so of money left, put the house on the market and inform the local authority, in writing, what you are doing and why.  Then, if the house sale has not completed after the six months are up, the local authority will pick up the tab for the care home until you have the cash to reimburse them".  Mum died before we got to this stage but things like this all help grease the wheels.

 

Don't give up on the boating dream.

[Janey M]

Hi Didne! I see I'm not the only coop member who browses these forums! Not boat advice but have you come across the Carers UK website forum?