Long journey - continence issues and dignity

[AlmostAllThere]

So elderly relatives are 3 hours drive from nearest family. One of the couple very keen to move, the other (the only driver) is starting to become cognitively frail, but kind of "mostly here" still. But also has (the more severe kind of) continence issues, and is very very anxious about being any distance from a loo.

Thus they do not want to be driven because of lack of privacy requesting loo stops (and always used to travel with a bucket just in case, which is a nono if they aren't alone) But they are now too cognitively frail to drive the distance alone.

This alas is becoming a huge stumbling block to the move - which probably needs to happen soon while they can still process what is happening.

One option might be the train - it's not a mainline all the way and I m not sure they have been on a train in the last 40 years, and there's a lot of fear of the unknown (incredibly restricted lives especially since covid).

Alternatively - something like a winnebago? Can you use the toilet when it's driving along? Hire a small private coach???? (Luckily they are not short of money, although they are horrified by extravagance).

I am kind of thinking aloud here, but if anyone has any ideas, however left field.... fire away 🙏🙏

Oh and I have already thought they could perhaps do a 'practice' train journey just between their town and the next station, but there is a LOT of resistance to overcome -to even discussing anything that isn't the daily round of armchair with tv, drive round the block to pick up shopping, armchair and tv, bed 😬😬

I would suggest the journey is in a car, with stops planned in, but with appropriate disposable pants to be worn for the journey. They may not like that idea but if they're so fearful about an accident it's the better option. I don't think they should now be driving at all as it's the risk to other people's safety as well as their own. Trains are often unreliable now unfortunately.

You will need to be kind but clear and directive about this. Sorry as I know it's uncomfortable being the bad guy. Been there done that.

Is the new accommodation sorted, and therefore the issue is just the one journey from A to B? Surely then the journey could just be carefully planned with lots of stops at cafe/services/pub lunches etc. even if it takes all day, it's only the once.
Or are multiple trips envisaged to view properties etc? In which case I would try to arrange viewings in blocks of a couple of days and find a suitable hotel at the new destination. Make use of video viewings etc to minimise trips.
Your plan of a RV might work in that you could stop anywhere for the toilet to be used. It would be extremely dangerous (and contrary to seatbelt laws) to have anyone use the toilet whilst the vehicle is moving, let alone an elderly frail person.
You would need to give extra reassurance to the older person regarding the journey eg 'we will drive for 20 mins then stop here for the loo, then we'll drive for 35 mins and stop here for coffee and loo, then another 35 mins to our lunch stop where we'll have the loo, and a little fresh air' etc.

Your plan of a RV might work in that you could stop anywhere for the toilet to be used. It would be extremely dangerous (and contrary to seatbelt laws) to have anyone use the toilet whilst the vehicle is moving, let alone an elderly frail person.

Exactly what I planned to post. Fine to use anywhere you're stopped (and in an emergency I'd risk it in a stationary traffic jam if it was going to take a long time to reach a junction). But absolutely not during normal driving.

Thank you @Holesintheground and @rightoguvnor , you are both talking a lot of sense. We all absolutely agree about them driving themselves, which was - unsurprisingly, sadly - their initial proposal 😱

We have found a suitable home, they are leaving the selection to us (a responsibility in itself) but the whole project is currently on hold (mainly) because of this one issue. Heels have been dug in.

I like the idea of setting out an itinerary of stops. Relative is acutely bashful about their "needs" but it is possible spouse could smooth it over with "really wanting to stretch my legs regularly for my back" or similar. Possibly. But yes, worth at least trying.

As you can imagine having found a place, agreed a price, started to draw up plans for a couple of alterations and talked to a builder -- just aughhh!!

While of course we don't want to bully, and wouldn't get results that way, we can also see (which they probably don't) that if its left too long, the QoL at the other end will almost certainly suffer. And we'd found a lovely little place for them too 😭

and thank you @NoBinturongsHereMate - message received and understood. (although that doesn't apply to coaches? - and the one with incontinence could probably manage the steps fine (the spouse probably couldn't but they are not so bashful and would just request a stop at the services)

There's a company called driving miss daisy who offer transport for frail people. It might be safer for them to travel with a carer, possibly the frail person in a wheelchair, with regular stops at service stations. They could wear continence aids for comfort, a man could use a continence sheath., the train would be a nightmare getting on and off, stairs, noise, changing platforms. Where is the journey between.

Yes, the logic of motor homes vs coaches is a bit shaky (but that's laws for.you). There are more hard things to bang your head on if you fall in motorhome - tables, kitchen counters, cupboards, so it is a slightly different situation.

I appreciate this isn’t the point of your post but if it a male with urinary incontinence I would politely but firmly insist they see a doctor as it may well be an enlarged prostate. Of course nobody wants to face up to these things happening to themselves but an elderly male in my family put it off so very long, vigorously denied any problem despite clear evidence etc that by the time they were in the medical system (due to hospital admission for other reasons) they had become too frail to operate and now is permanently catheterised as the extremely large prostate otherwise causes dangerous urinary retention. All of which would have been avoidable if they had acted much sooner.

On a practical basis if this is only a one off or occasional trip, regularly scheduled stops, appropriate large scale urinary continence disposable pants worn as a back up, perhaps limit liquids within reason in the few hours before the journey.

Not urinary - it's actually a lifelong disability that has always restricted them but while fully independent and still driving etc, they arranged all their own accommodations and noone outside the couple really needed to know, which was how they liked it.

Spouse has only recently begun to share (more of) the full reality...

Its difficult isnt it and I am guessing you are at the start of a journey looking out for elderly relatives. Elderly people very often hide what is going on, and have no issues in fibbing about what is going on. They dont want to go into home and fear if they reveal what is really going on they will be forced into one!

It sounds like you really care about them and want to do the right thing but I would urge some boundaries here otherwise you could well find you are spending more and more of your time managing them. As old people get older their world becomes smaller and smaller and they often need significnat asisstance and you will probably find they only want someone familar to do it. No carers in the house - just you and they get more and more anxious about everything really.

Good luck - you have lots of good suggestions here

Thank you @MichaelandKirk - bless them, they really do hate imposing and repeatedly say as much. We are trying to enable "supported indepence" Currently situation is "remotely supported and risky independence" but a recent stay in hospital has triggered this (currently failed) intervention...

Oh and the train journey is about 4 hours, one change (and mercifully not at Birmingham new street 😅)

My late Mum 'didnt want to be a burden'. She cried and begged me not to put her in a home... it was a horrible time for both of us. She was a burden, I had to set some boundaries and at one point when I got annoyed with her calling me about very little she cried and said if she couldnt ring me who could she call to help her.

In the end she went into a home and only lasted 1 month. Not sure I have any answers tbh. Age UK told me to have boundaries but everytime the phone went I would jump! Almost always you had to jump to it. Mum had fallen. Paramedics were on their way. What was I meant to say Call me in 1 week as I am just about to get on a plane, refuse to take the call from the Doctor because I was just about to go into a meeting. Its all very difficult.

The journey should be done in very short intervals with planned stops, also with added incontinence pants for security. I would also suggest layering up the car (both passenger seats, obviously, so it doesn't seem targeted), and attributing this to the dog you regularly transport (friend's dog, or something). You'll obviously need to lay some conversational groundwork about this, but the more Swiss cheese layers of protection against an accident you have in place, the less stressful it will likely be for the incontinent spouse.

Gosh @MichaelandKirk you really went through it, didn't you?

Thanks @verysmellyjelly . Further enquiries are now suggesting 30 minutes might be too long - I think the lack of 'notice' (warning?) may be the issue, but there is a frustrating amount of guesswork involved!

Are you sure they're not stalling the whole process because of this issue? As it seems relatively minor in terms of the upheaval of their whole lives.

@I8toys It's not minor if you have bowel incontinence. Experiencing it in front of someone else is incredibly distressing. While obviously this needs to be figured out, it's understandable that the incontinent spouse wants to avoid that happening and is anxious about it. Not to say that burying their head in the sand is the solution, of course, but it's a very human response!

Can't they just wear pads? I wear them myself on long trips just for the added confidence and security.

Sounds like an excuse really.

It's nothing a simple pad won't solve.

Apologies I phrased that badly. I have a DH with incontinence so know about planning journeys, breaks, stops, pads etc. It just seems this is a thing that could be resolved with planning so are they just halting the whole process of moving, using this as a stumbling block.

This is what I'd do - map out the journey and stop at every town/village pub on the way every half hour if necessary. Have a spare driver. Use the backroads and rejoin the motorway when each "business" is done. Do the journey in two days. Stay overnight halfway or nearer to the new place if that works.

Insist on top of the range incontinence pads, the GP/District Nurse/Pharmacy etc. will advise.

Make it as easy as possible. There's no need to do it all in one day is there?

I agree with a PP. I think they don't want to move to the new place.

Could you hire a camper van with toilet, go there then plan a slow trip back on roads where pulling over for regular "sightseeing stops" is feasible, a roads rather than motorways basically. Can they travel 30 minutes between stops even?

Plus incontinence pants just in case

They will also be fearful of a queue

I think the motorhome option is the best. Pull over whenever necessary. Takes the worry out of everything

Is there not medication they can take temporarily to facilitate this journey?