Advice on travelling with a dementia sufferer

[the martian]

Good evening

This is my first post, so I apologise in advance if I ask a question that has already been covered. I have to say that I'm impressed with all those here that have been caring for their loved ones, but I find myself in a slightly different position.

My mother is in a care home in Scotland, I live in South Wales. She was diagnosed with dementia last year. My father was her carer but, to cut a long painful story short, he died last October and mum became resident in a care home in Scotland. I am going to get her this weekend and bring her to Wales to live in a care home near me. I am new to looking after someone suffering with dementia - what problems am I going to encounter on an 8 hour car journey? What problems of confusion and dislocation is my mum going to suffer as she adjusts to her new 'home'? I don't think she will miss her house as she hasn't lived there since August last year, and didnt recognise it when I last took her there in October, but I want to take her back there for one last visit and to select some things that will make her new home more, well, homely.

Any suggestions or advice will be gratefully accepted.

Martin

 

[jenniferpa]

Hi Martin and welcome.

First things first. Is your mother continent? Because even if she is make a note of every service area from beginning to end: my mother couldn't be in the car for more than 40 minutes without needing the loo.

No one can really jusde how confused she'll be at the new care home: it could be anything from a lot to not even realizing she's moved, or somewhere in between.

Honestly, is there any way you could avoid taking her to her old house? That might well distress her and if it doesn't then she probably won't be able to decide what to take with her anyway.

Please don't take this the wrong way, because every single person with dementia is different, but it might be like having a large rambunctious toddler on your hands. Is anyone going to be with you on this long drive? People can do very strange things (trying to get out of the car for a start) so someone to deal with her while you're driving would be good.

 

[Sandy]

Hi Martin,

It might be a good idea to discuss your options with the management of your mum's current care home. If she's been there since October, the staff there should have got a reasonable feel for her state of health and abilities.

When we moved my mother-in-law (83, in the middle stages of dementia, after the death of her husband) in April 2008 she found the 90 minute journey really trying. For a start, she wasn't used to sitting in a car for that length of time and got really stiff.

One possible option, if you have the funds, is to consider the services of a private ambulance company. If your mum sleeps well at night, you could even make the journey overnight.

Conratulations for organising the move for your mum so that she can be closer to you.

Take care,

Sandy

 

[TinaT]

I have made plans to take my mum and Ken from North Manchester to my son's house in Guildford either Friday or Saturday this week as it is our twin grandaughter's first birthday. I am now really, really worried about this!!

My mother is recovering from a broken shoulder, some very bad infections which kept her in hospital just before Christmas and she also has mobility problems. Ken has dementia and this leads to all kinds of problems when I'm driving. I arranged this several months ago when I felt I could cope. Now I am frightened of the journey down and the journey back. It takes about 5 hours without stops to get there.

To cap it all, after a conversation with Son and DIL tonight, I discover that one of the bedrooms is out of action. The decorator should have finished last week but one problem and another with the ceiling means that the room will be quite unusable. Ken and I will have to sleep in a third floor bedroom and the steps leading to this are quite steep. I have problems getting up them and I know Ken will have difficulties. There is a double bed in the room but I have insisted that I have a mattress on the floor. As the room is small if Ken does get out of bed, then he will walk straight over me. Another problem is that the stairs lead up to a very small landing just outside the bedroom door so in order to get to the bathroom, we will have to negotiate the small landing with the danger that he will go head first down the stairs if I'm not very, very careful.

I cannot back out now. My mother is so exited about seeing her great grandchildren again. I suggested we postpone it until next month as one of the bedrooms is being decorated. The children will be having their first birthday so at their age I don't think having two little birthday celebrations will upset them. However DIL and Son want us to go ahead with this weekend. I did ask if they would be buying a safety gate for when the children are toddling but son said he did not want to get one yet and also he hadn't the time to get one and fix it up before Friday. He also said he didn't want to put screws in a wall when he would have to move the gate downstairs to the second landing at a later date. I suggested a movable gate as they have one in Ken's Care Home but son did not like this idea. He finally came up with the solution to lock the door and keep the key in. Ken would be quite unable to manipulate a key and in any case if he got out of bed he would fall over me.

Oh dear - what have I promised I will do. I cannot back out now but I am absolutely dreading it.

xxTinaT

 

[Margaret W]

Hi Martin, from the Venusian who is only part Venusian.

Some thoughts.

Being a blunt person, I would not even contemplate taking your mum anywhere near her previous home. You will have enough to cope with on the journey, don't even consider taking her home. That can be done another day/week, or not at all. The most important thing is to get her settled in to bed that night of the journey.

I took my mum on a journey to get a new hearing aid fixed. 45 minutes there, 30 minutes in the surgery, 45 minutes back. She had already forgotten where she lived. Unfortunately the journey back was along roads she recognised as leading to her old home, and she started to get concerned that she had nowhere to go cos her old home had nothing in the fridge for her to eat. I actually thought that insight was rather advanced! As it happened I managed to appease her till we arrived back at the care home and a loving face greeted her. it was a real worry.

So, Martin, other people have suggested you should have another friendly face in the car with you I also suggest you stop regularly for the toilet, so the friendly face needs to be female. This is going to extend your journey considerably. You might also stop for something to eat, so that needs two of you at least, one to sit with mum while one orders the food. You can't leave her on her own at any time.

Your 8-hour journey might easily become 10 hours or more - are you sure you can do it in one day, with your mum? I am now listening to Sandy who is suggesting the private Ambulance. I really think you should consider that for such a journey. It might cost a bit, but be worth it to get your mum there quickly and easily. An overnight trip sounds like a sensible idea.

I wouldn't have liked to move my mum to anything more than a couple of hours away.

What a task you have ahead.

If you can't afford the private ambulance could you stay overnight somewhere where you are all in one room, can keep a check on mum during the night? You might get no sleep but so be it for one night. Or maybe your wife sleeps in a separate room and drives the next day and you look after mum during the night. Just thinking of practicalties.

Hope you work something out.

Love

Margaret

 

[Margarita]

what problems am I going to encounter on an 8 hour car journey

possible agitation , repeating " when are we going to get there "

My mother gets very agitated in the back of a taxi car.
Mum use to travel in taxi cars when going to respite home, my mother can’t take more than 15 Min in the back seat, needs to grip my hands as she agitated about being in the taxi car. My mother fines it very traumatic.
That now I make sure respite are not too far away, mum now better in a ambulance with seats in it , then holding on to the seat in front of her .

Just really depends on the stage your mother in with her dementia. I do hope you have someone else with you to help you in the car journey with your mother ?

 

[Brucie]

I'd recommend "expect the best - be prepared for the worst"

All of what has been said in the posts above makes sense.

I'd add one additional thing.

Once, at the mid stages of dementia, but when I was still caring for her at home, I drove my wife to visit relatives in Cornwall.

She was very agitated when we were there and we cut short the trip.

En route home, in the car, we stopped for a break and she got out of the car and refused to get back in. Unfamiliar fields, claustrophobic in the car, my driving too fast, or just the dementia.... will never know. I talked her back into the car eventually and we arrived home safely after what was our last such trip away.

So, besides all the expected things - loo stops, confusion, etc... - also plan what you might do if she turns to you and says "who are you?" "where are we" - or shouts out of the window "help, I'm being kidnapped"

Probably won't happen, but planning for it will minimise distress on all sides.

Also, I'd recommend not leaving her alone in the car for more than a few minutes - to take on fuel, to buy a paper etc. - unless your judgement tells you it will be ok.

Good luck!

 

[Skye]

Hi Martin

Lots of good advice.

I'd agree with those who said don't take your mum home. It's bound to upset her, and to start off the journey with her upset is asking for trouble.

I'm not clear what stage your mum is at -- obviously you think she is well enough for a long journey. I could take my husband on long journeys in the car without any real problems, but every person with dementia is different.

Are you able to arrange her new room in advance? It would be a good idea to make it as like her present one as possible, after all that is now her home.

And talk to the staff. Let them know your worries, and ring when you are nearly there to give an eta, so that they are prepared to welcome her. This can make a lot of difference.

Good luck, you're doing the right thing, and when your mumis settled you'll be a lot happier.

 

[Grannie G]

Dear Martin

Would it be at all possible to make the journey by train?
It would be equally tiring but at least you would be free to look after your mother.
Also if you check in advance, National Railways will offer help for disabled travellers, including escorts and `buggies` when you change trains.

And Tina, would this be a possibility for you? Would Ken be able to cope with a train journey?

 

[Skye]

The trouble with modern trains is that everything is automated, push-button.

I took John to London by train, and the loos were the problem. They just weren't like the loos he was used to, and the button to open the door worried me. He wouldn't let me go in with him. He refused to go, and I was terrified he'd have an accident.

Of course, that depends on the stage of dementia.

 

[Margarita]

claustrophobic in the car, my driving too fast, or just the dementia.... will never know.

From my experience I would say the dementia, because when mum was traveling in the back seat of a taxi from Gibraltar to Spain with me on a 2 hour Journey my mother became " claustrophobic" .
I had never expression my mother in such a state of mind in traveling with me in back of a car . We both can't drive , so we have always traveled together fine in back of a car .

Taxi driver was asking me " has mum been in a car Crash before? " as he thought that why she was so scared . I told him no I just keep reassuring mum all was OK

I have been to carer group, where a husband told us that his wife keep taking safety belt of in front of car next to him.
So for safety issue, it be advisable to have you mother in the back of the car with someone next to her, who understand where your mother coming from if she gets worried , panicky , agitated

 

[johne]

Martin,
I took my Dad to his Care Home earlier this month (to be nearer to me), but it was a 3 hour trip with only a couple of toilet stops. I arranged that we should arrive at the home at lunch time so there was no problem with having a meal en route. As others have suggested a female co-driver would make things much easier - I could hang around the gents toilets to direct my Dad to the wash basins, hand driers etc and then lead him to the exit. Perhaps if you have to make the trip on your own then you should look for services that have disabled toilet facilities with a seperate door, not in either main block.
John.

 

[the martian]

Many thanks for all the responses, all full of good common sense. Some of the things I've already arranged - supply of medication from the existing care home, thinking about toilet stops and food - and my wife has insisted on coming which will make it less stressful, and will mean that I have an extra pair of eyes.

Mum has said in the past that she'd like to be nearer to us, although I doubt that she'll remember that. I'll be going to see her each day before we leave and I thought I'd try and get her used to the idea that she'll be going on a journey in the hope that its not a surprise on the day.

Train journey - sounds good, but we'd need a car at each end and would add a couple of hours to the time - quite apart from the horrendous cost.

Overnight journey - nice idea and I have tried it before. The roads are quiet, but it is exhausting to do an 8 hour drive overnight and I've got to be in work next day.

Mum has done this trip quite a few times in the past when father was alive (but not since Christmas 07) so I'm hoping being back in the car wont worry her - I cant help being an optimist.

The main part that worries me is getting her to go to the loo at toilet stops. As she's incontinent, we'll have to get her to use the loo, but thats the bit she's always resisted at the care home, and also she's not that good on her feet these days. We'll have changes of clothes and pads with us, and I shall be getting something absorbent for her to sit on as well.

I'm going to the new care home tomorrow for a look at her room and chat with the staff to see if they have any last minute suggestions. I'm quite excited that, after 3 months of pushing the care systems, I'm actually going to achieve this; but at the same time a bit apprehensive about the journey and how she will settle in.

A final question - does anyone have a view about whether dementia sufferers find music helpful or annoying? I know that is a highly individual preference, but am just thinking of ways to help pass the time on the journey.

thanks

Martin

 

[jenniferpa]

I'm going to give you a 50/50 answer: my mother loved to listen to music but any kind of music in the car was not on. That was a life time habit that never broke. She would listen to stories on tape/cd and radio 4 (sometimes) in the car though. All you can do is try it and see. And be aware that as she gets more tired her tolerance may well change.

 

[JPG1]

Would like to wish you a good journey, Martian!

Your Mum is incontinent, so perhaps you need not worry much about the toilet stops, because by the time you get to one … it’ll probably be too late anyway! So pants and pads may take care of it for you. With a little added protection along the way. At least your wife is now with you on the journey, so she may take care of the accompanied loo-visits.

If it’s an 8 hour journey, with stops planned, then the chances are that a fair bit of snoozing may just happen. It happens with most passengers, young, middle and old on an 8 hour journey. As long as the driver(s), if you’re now sharing the driving with your wife, avail themselves of suitable rest-breaks. The intervening hours may take care of themselves.

Gentle music can perhaps be a good recommendation. Some like it; some don’t. Unless your Mum is into heavy rock, in which case … you will know best!

Good luck, Martian!

 

[the martian]

Mission accomplished

Just an update so anyone interested knows the result.

We brought mum to Cardiff as planned on Tuesday 3rd February. I was expecting a long,hard journey, but mum was as good as gold, bless her. As previous posters have said, she dozed quite a lot and listened happily to music and made a few comments on the way, some of which were surprisingly lucid. The one problem that I didnt foresee was that her legs had got a lot weaker and she nearly didn't make it back to the car at the end of the first stop, even though I had parked right outside the door - its so easy to overlook how much walking has to be done inside a motorway stop when they put the loos right at the back of the building so that you have to walk past all the shops.

Anyway, she is now in a new nursing home (and so far has settled in without a fuss) and is only 15 minutes drive away so that I can pop in at weekends or on the way home from work. This is going to be so much less of a worry than when she was 400 miles away.

 

[Grannie G]

Well done Martin. I`m so pleased it all went well.

 

[jenniferpa]

Oh good news! I was wondering how you got on. Yes you're right about motorway service areas - a wheelchair can be a must for those, even if not necessary at other times.

 

[TinaT]

I'm so glad you mentioned the amount of walking at service stations to get to the loo! I forgot to mention that very thing in my post about travelling with husband and mum. It was very difficult to take care of both of them at the same time as they both have walking problems.

Unfortunately some loos are impossible to get to. They are not only at the back of the service station, but upstairs! Have to confess I saw this particular service station yesterday when with my younger son, thankfully not with mum and Ken and I didn't notice if there were lifts. My not noticing shows how badly signposted they must have been, if lifts were there. This service station is just as you come off the main Cardiff/Birmingham A road and onto (I think) the M5.

xxTinaT

 

[jenniferpa]

I think I know that one - is that the one where there's just one coffee shop on one side and a bridge? Because if so you have to find a staff member to take you to the lift that is in a service area (I kid you not). Doable, but not at all easy.