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 😬😬

Depending on their age and license, they may struggle with hire of a motorhome.

If they do go down that route, could someone else drive and the person with the continence issue sit in the back near the toilet compartment ? Cleaning out the toilet cassette isn't a pleasant job but if someone is prepared to do that, it's the most adaptable option. If they want to go alone, a transit size campervan might be more manageble than a motorhome. You can get some VW transporter vans with loos but accessing them doesn't give privacy. Either way, this option does at least give access to a loo and access to clean up if the worst happens.

You can hire private mini buses with toilets which they could use when moving but I have no idea of the costs.

The most suitable in terms of accessing the toilet as and when they need would seem to be the train and that way they could be independent during the journey

It all sounds horribly anxiety inducing for them but I hope it doesn't prevent them starting on the next stage of their lives

Thank you everyone for these really helpful ideas. Yes indeed, the continence is just one of several areas of "resistance" - but the other concerns about coping in a new town are also valid. But they kind of make it even more of a 'now or never' dilemma.

Thanks to the pp who pointed out queues might be a concern - hadn't thought of that, very good point.

We think imodium might help - might be something to try out at home (don't want to end up making the poor soul constipated). Its about 150 miles so probably no need for an overnight (which would almost certainly be a no no anyway) but back roads in a camper (with the curtains drawn!) might indeed be the way.

Fortuitously (for once only) the likely driver also has a similar issue which they are a lot more open about. So they can keep stopping for "their own requirements" (exaggerating them if needed). HOWEVER we are starting to suspect that the lack of any warning leading to an unfortunate and urgent situation may be the Big Fear. Honestly I wish we could just put them on something like morphine or valium for the duration - so they just stopped minding, but hey ho.

(no, sadly they are no longer able for the drive solo, and this really is the stumbling block, having someone else there)

You can hire private mini buses with toilets which they could use when moving but I have no idea of the costs. Thank you @Blistory - I will look into that!

sleeping pills + incontinence pads?

I don't think the train would be feasible. In theory there should be toilets but it might be the far end of the carriage, or the nearest one out of order and then they'd have to go through another carriage to reach it.

Most train loos are fine in terms of cleaning but they can be grim!

haha I hear you @EmotionalBlackmail about train loos - but one at least of the legs would be on a train with those big disabled access loos. And to stress, relative is not physically disabled, but it more emotional/social issues plus (we think) a bit of early cognitive decline.

Yes, the train I was on last week had the big accessible toilet on board, except the other toilet on board was out of order, so everyone was having to use the accessible one. Which meant it had run out of soap and water for washing hands, and was in a rather sorry state!

OP, you say they used to drive, but with a bucket for emergencies. How did this work exactly? If they had time to find a secluded spot, pull over, get the bucket out, clean it afterwards etc, then that presumably means they get a little bit of notice?

i wouldn't recommend an elderly person who's not used to driving a large camper-van hire one . Could a relative do the driving ? Covering / layering the seats in either a van or car is a good shout you could get puppy pads and cover them with blankets too . Pads and pants are a must . Imodium might help and perhaps their GP could prescribe something for the anxiety ( they may not be keen to do this with their cognitive decline but worth discussing ) take a bag with changes of clothes , bed bath wipes , disposable bags and fresh pads . They might benefit from VIPoo and some air freshener if worrying about the smell is part of the embarrassment . Do they have a radar key to access disabled toilets ? You can buy them online or from Argos. I think you just need to have the conversation with them and reassure them that yous will stop frequently and if they get caught short they get cleaned up and on with the journey its not nice but they need to get to their new home and reassure them that yous will just want them close
by and safe !

Could you arrange to follow them and/or lead them on the journey in a different car and then you are the person leading the frequent stops?

You might have a UTI that day?

Really, really bad idea here but sharing just in case. When you have a colonoscopy you have to fast and take medicine that "cleans you out" could they fast and do something similar so there's nothing there to have an accident with?

Have you got them a radar key to reduce the concerns about queues at bathrooms.

There are online maps about toilets and accessible toilets. Here's an example www.toiletmap.org.uk

There are incontinence 'pants' that are far nicer than the 'adult nappies' many people associate with incontinence pads, my dad is extremely private and very obstinate but has accepted using these rather than the inevitable when an accident occurs. For one journey they can be adult about it and use this type of pants and have a discreet bag with wipes, changes of pants and nappy sacks in it.

To be fair, shitting yourself in public then having to get yourself to a toilet to clean yourself up and change your clothing when you're an older person is not a minor issue especially since the spouse would be unable to assist so other relatives would have to be told and involved in the delightful process. No thank you ma'am.. when you're old all you have left sometimes is your dignity.

Adult continence pads plus the hire of a motor home. Get another family member to drive it. Arrange to stop every half hour or so so that the toilet can be used.
Trains are very difficult and unreliable to navigate with this condition.
Your relative is going to have to be honest and practical if this trip is going to be possible.

I really think you should try the immodium option or try to get them to talk to a GP about another medicated option. Not ideal but it's a one off to facilitate being able to care for their other health needs long term.

I wouldn't even consider the train - far too unreliable and even for a fit and able bodied person the toilets are horrible.

This whole issue sounds like it might be far worse than they've shared up until now - how on earth do they cope with ever going anywhere 🙁 could GP help maybe?

Thanks again for all the suggestions including the toilet map. The other family member with the same issue (mentioned in an earlier post) has a radar key - great suggestion!

And yes @jelliebelly - lately it has been dealt with by literally never going anywhere other than the supermarket one block away 😐😐

Hi, I had to move my old Mum which involved a similar length journey. She was also doubly incontinent and very immobile and I spent many hours stressing about how to do it. I finally struck on (if I do say so myself) the genius idea of hiring a wheelchair van and using a commode wheelchair. I made her as comfy as possible with cushions and then if she needed to go, I could pull over, whip the cushions and lid away and she could use the commode while I stood a safe distance away! Commode bucket lined with a bag for easy cheap up. Wet wipes at the ready.
She was happy and felt safe and it worked really well.
Good luck! x

@AlmostAllThere is their GP aware?

I would seriously get them to give Imodium/loperamide a go. It could be life changing.
I'm a care professional and have worked with many people with similar issues.
Speak to the continence team at the GPs. They will be able to advise on best pads/ products to use. The pull up type pants available in the supermarkets are ok but not ideal for bowel incontinence in my experience.
But get them to talk to the GP. They will be able to help.

Im sorry, but this person shouldn't be driving. Please talk to them.

GP can prescribe immodium under its generic name loperamide and they'll get a bigger supply than in the expensive supermarket packets. Agree that it really could make a significant difference.

Have they been checked out medically for this issue? Do they know the cause of the bowel incontinence? It can be a sign of something more serious such a neurological condition or untreated IBS/ IBD for example.

If they can get referred into the local incontinence service they will have options such as irrigation and or plugs which may be suitable options for giving your relative some freedom back.

These are all really helpful ideas. I realise that the main obstacle we face really is not the pooing - so many really practical suggestions! Its the fact that it is Not To Be Mentioned and absolutely Not To Be Witnessed (even a hint). Non- incontinent spouse is really anxious not to upset them on this as it could set things back and they are desperate to move.

However imodium is definitely worth a try. How we would suggest a visit to the doctor for the correct kind of pad I don't yet know. We are up against a massive mental block here....

I agree with the person who suggested driving miss daisy.they are expensive but it is door to door and they will stop at any toilets when needed.we are not frail but both over 70 and don't drive so always use them for holiday journeys

How about they do the journey over 3 days with no more than an hours drive each day, and stops in between? Treat it as a mini holiday with nice places to stay?