Travelling abroad with my mum, advice...

[RaspPav]

Hi All

I'm hoping for advice not judgement. In 2013 we (me, husband & 3 children) took my mum to Florida, she had not been diagnosed then but we knew there was a memory issue. She enjoyed the holiday & although we did we were exhausted due to the extra pressures of dealing with Mum's needs. Mum had a diagnosis of mixed mild dementia earlier this year. We know she had got worse in the year leading up to her diagnosis but she's unchanged since then. So, we've booked to go to Florida again this year, I hasten to add that having discussed this with her consultant, gp & cpn all of them think this is a positive thing & have given some advice for travelling. We also have lots of things in place now which make things easier, I look after her medication for example.

We've booked for just over 3 weeks this time to enable us to take things more slowly & have more rest in between the busy peak visits. Mum has made it very clear that she's looking forward to staying at the villa some days whilst we visit parks. Again, the consultant thinks this will be fine as long as we check in with her throughout the day. We do have a couple of US mobiles which we take with us. The villa also has a phone line.

I've sorted her insurance. I've also been advised to sort her esta ASAP as I may have to apply for a visa due to her mental health. I was quite shocked at this but will go through the process if needed.

I've booked a hotel near the airport the night before our flight to avoid early morning travel.

I was thinking of taking one of our 'talking tiles' with us to record a message from us on days we are out so she knows where we are, when we'll be back & how to ring us. I'll also put a photo of us on the tile so she can associate it with us.

I'm looking into trackers as well in case we get split up in the parks. This may sound a little excessive, I'm just being precautious as there are times we'll all go on rides apart from mum & I worry she will walk off. This didn't happen last time & hasn't happened locally, I'm really just thinking of all possibilities. Does anyone have experience of these? Can you get ones you wear as a bracelet for example? So far we are trailing a smartphone one for myself, husband & older son but these would be reliant on wifi in the park & of course mum taking her phone with her (currently she only has a basic Nokia so the step up to iPhone may be a step too far.)

So, if anyone has any tips for travel I'd be very grateful...

Many thanks

 

[Cat27]

Welcome to TP

Travel can be extremely disorientating for people with dementia.
Does her travel insurance cover her for being left alone if you have to apply for a visa due to mental health?

I would be very wary of leaving anyone with dementia alone in a strange place.

 

[Amy in the US]

RaspPav, welcome to TP. I hope you get some good advice and suggestions here; I know I have.

You may want to do a search and see if any older threads turn up, that would have ideas/suggestions for you.

One idea that I've seen here is to travel with a carer, as in, take a dedicated caregiver with you. This gives you an extra pair of hands and/or someone to help cover the night watch, et cetera.

I think it's great you have talked to her doctors and have sorted the insurance (very important). Perhaps you might also want to look into where the nearest hospital will be to where you're staying (heaven forbid in case of injury), and also the nearest walk-in clinic. Here in the States they are sometimes called urgent care, minute clinics, or walk-in doctors offices (not the same as going to A&E/the emergency room at a hospital, some are open late hours and weekends, some open 24/7, all can provide care for all sorts of issues from colds to cuts to earaches to tetanus jabs--things you don't need A&E for, but do need a doctor/nurse to check out). They can be stand alone (often in strip malls or office buildings) or inside a supermarket/big box store or chemist.

I would also locate the nearest 24 hour pharmacy (chemist). Some of the big chains here in the States are CVS and Walgreen's. Big box stores like Target also have pharmacies inside, although not usually 24 hours, and big supermarkets often do as well. The management of wherever you're staying, can probably help you find these.

I would not leave anyone with dementia, alone in an unfamiliar place (whether that's the toilet at the airport or where you're staying in Florida). And if she's in the park with you, and doesn't go on a particular ride, I would leave someone with her--basically I wouldn't leave her unattended anywhere. And definitely make sure she has your contact information somewhere on her person, and that your phones work in the States.

There may be more disorientation/confusion than normal.

Routines and energy levels may be disrupted by both traveling, and the time shift. Be sure to account for the time difference with any time-sensitive medications.

I've definitely seen others here on TP mention that you may see behaviours when traveling, that you don't see at home.

My other suggestions are general travel ones such as, make sure you have enough of her medications to last the trip, plus extras in case you get delayed or lose any. Don't pack needed medications in checked baggage. Remember that some medications that are prescription only in the UK are available over the counter in the States, and vice-versa. Have current copies of all prescriptions. That sort of thing.

I'm not familiar with the talking tiles and am curious about those?

I'm sorry, I don't have experience with trackers, but others here will. I don't think it's extreme; it could come in handy. I think you are trying hard to be conscientious and plan well and cover all your bases, so you can enjoy your holiday.

I will see what else I can find for you.

I hope all goes well and you have a good holiday!

 

[Amy in the US]

Here is a factsheet from the Alzheimer's Association: https://www.alzheimers.org.uk/site/...entID=158&_ga=1.70188691.269683097.1423530746

 

[balloo]

Welcome to TP

Travel can be extremely disorientating for people with dementia.
Does her travel insurance cover her for being left alone if you have to apply for a visa due to mental health?

I would be very wary of leaving anyone with dementia alone in a strange place.

i would agree i look after my MIL ad she has dentia and i dare not leave her alone for more than 10 mins and our house which is where she has lived for the past 3 years i would never leave her alone in a villa she does not know . could you not organise a carere for her to come with you .only option i can think of. We took MIL with us last year to greece and at all times some one was left with her.

 

[Izzy]

This is one older thread which discusses holidays -

http://forum.alzheimers.org.uk/showthread.php?81295-Holidays

 

[marionq]

Tip from the police to me when John was at the height of his wandering:

Each day before you go out take a photo on your phone of how she looks that day showing the clothes she's wearing.

If the security/police have to search for her you will have an up to date photo of what she looks like on that day.

 

[fizzie]

I would definitely check out your insurance. If you leave someone with diagnosed dementia alone in an unfamiliar place I think you may find that it will invalidate your insurance.

I'm wondering if you could find an agency who would provide a carer whilst she stays at the villa - even if someone came in four times during the day (that would be my minimum and I have to admit I'd be very unsettled unless someone was with her all day) - I was always amazed at how even 'familiar' places were quite disorientating on some days and set up a chain of events if support was not given immediately.

I have to agree that there is NO way that I would leave someone with dementia waiting alone in one of the Parks - pure volume of people even at slow times is likely to induce panic - I would always make sure she had someone with her.

I'm sure you'll have a great time but always find Florida parks so exhausting lol - enjoy

 

[tigerqueen]

Hi RaspPav
Good on you for continuing family Holidays whilst you can. You will know when the time comes to stop. Unfortunately I can't help with trackers as I've not had cause to use them, but I have travelled widely with my husband since his diagnosis with alzheimer's 4 years ago. We are keen birdwatchers and have travelled to south africa, Ethiopia, Canada and panama. I must admit I have never left him alone but other than that we've always carried on as we would at home. As others have said I thi nk your insurers will have asked the question "will someone be with you at all times", mine does.
Your preparations sound good, like the airport hotel etc. Toilets are our biggest problem on holidays, I always have my OH sleeping closest to the toilet at night and leave the toilet light on and use disabled toilets together. Airports can be very busy and confusing too and if you can afford it airport lounges are a nice place to spend the wait for your flight. We will not be travelling so far anymore as last year my OH mistook the main door for the bathroom door and I finally found him wandering the hotel corridor in the night. Good job I woke up. As dementia progresses confusion, especially at night or when tired gets worse. I mitigate tiredness by having siestas and rest days.
I've rambled on a bit but hope this helps. Enjoy your holiday x

 

[Gwyneth]

Travel

Hello. My husband and I have spent our lives travelling worldwide in a variety of ways. My husband even worked for 9 years as a tour manager leading parties all over. We were invited in October to a family wedding in Melbourne where we have stayed many times. We planned a stopover in Singapore to revisit it, and a short break in Cairns to do the Barrier Reef. We were away 3 weeks. It was extremely stressful and difficult and I nearly cut our losses and booked a flight home from Singapore. My husband could not remember any of the itinerary even though he had a copy of it and studied it frequently. He had no idea of where we were to stay overnight at Heathrow, how to get to and from hotel to airport and on the flight no clue how to operate the Screen video control so constant pressure on me. The disorientation and confusion kicked in big time in Singapore even though we had a private car pick up. No clue where we were, where the toilet was in our room and when he woke for the loo I was on red alert as he woukd open the room door and lock himself out. So I have learned a big lesson that long haul and itinerary changes are now out of the question. I would not leave my husband alone as even after several days, he still found things unfamiliar. On a brighter note, we have just had a lovely relaxing week in Tenerife, going from A to B and back, an all inclusive hotel and staying in situ. No decisions to make. A rest for me too! However, the tips given are excellent. I always tuck a card with details of hotel and contacts etc in his wallet. So good luck and hope it goes well. I hope Raspav, I am not judging. My philosophy is to be as gung-ho and carry on as much as possible but have realised long trips are a very tall order now even with lots of tricks in place. I travel alone with him so maybe it is a bit more stressful. Let us know how it goes and travel safely. Best wishes from Gwyneth

 

[RaspPav]

Thank you all for your advice, some I had already written on my list such as leaving a card in Mum's bag & wallet with the relevant details on. I will most definitely take a photo each day & can make this very unobvious by taking a family photo each morning to 'record' our holiday, that way mum won't feel it's for her benefit.

I did want to comment further on leaving my mum in the villa or at parks.
- firstly, & most importantly, I would never leave my mum, be it for 2 minutes or several hours, if I judged that she was not up to it at that time.

- that said I realise that you are all caring for people at different stages & in any case every individuals journey is different. My mum for the most part is fully capable of looking after herself, she drives & having been with her on recent journeys in which I've sat back & let her get on with it, she knows where she is going, knows where she's parked the car, waits for me outside the toilet when we've gone, remembered the time of appointments if she has one whilst we are out.

- that said, as previously noted, I would feel comfortable leaving mum at the villa if she wanted to. The consultant, GP & cpn all know & have assessed my mum & all have said that she would be safe to stay in the villa if she wanted. I will reiterate, I would not do this if I noticed a deterioration of any kind in mum.

- For this reason the first week of the holiday has been planned for trips or quiet days in which mum will definitely want to participate. I'm thinking more in the last 2 weeks, there will be odd days when mum will simply not want to go to the parks, it's her holiday too & if she wants to lay in the sun all day why not?

- as for when we are in the parks we already have a strategy in place to ensure mum doesn't wander off after a loo break for example. There are enough of us that there would always be one of us waiting outside, as we do with the kids so this way mum doesn't feel she's being 'watched over'. There are also parent swap areas so if mum wasn't going on a ride (which is highly likely) she can still come with us & wait in these areas, that way she gets to enjoy the walk up to the ride which is often very worth it & we are not worrying that she's on her own for too long.

- I'm not saying it won't happen but mum has not yet wandered off at all. In fact, on the two occasions where we've gone off & agreed to meet up but she's been confused of where to meet us she has simply phoned me. We will both have US mobiles whilst over there & of course she will have one with just our number in it to save confusion. I'm even going to attach instructions on which buttons to press etc.

I can understand all of your concerns and I do hope that in return you understand my own situation. I am fully aware how travelling can make mum feel & also that anything can happen but I'm living in the now with a full scope of what has/can/may happen & just want to be as prepared as possible.

I did search for 'travel' threads before I posted my own but I couldn't find any, I just got pages of anything with the word travel in any comment.

I like the idea of noting emergency contacts & places such as dr offices & hospitals. We have purposefully stayed in the same area again as we are familiar with what is there but will of course print up to date info before we travel.

I really do appreciate your help & support.

Oh, one last thing, I did try to get someone to come with us but there were only 2 people we could ask & neither of them were able to come. We are not in a financial position where we could pay for someone else to come along just in a carer capacity & mum would not want a stranger coming along anyway.

Many thanks

 

[RaspPav]

RaspPav, welcome to TP. I hope you get some good advice and suggestions here; I know I have.

You may want to do a search and see if any older threads turn up, that would have ideas/suggestions for you.

One idea that I've seen here is to travel with a carer, as in, take a dedicated caregiver with you. This gives you an extra pair of hands and/or someone to help cover the night watch, et cetera.

I think it's great you have talked to her doctors and have sorted the insurance (very important). Perhaps you might also want to look into where the nearest hospital will be to where you're staying (heaven forbid in case of injury), and also the nearest walk-in clinic. Here in the States they are sometimes called urgent care, minute clinics, or walk-in doctors offices (not the same as going to A&E/the emergency room at a hospital, some are open late hours and weekends, some open 24/7, all can provide care for all sorts of issues from colds to cuts to earaches to tetanus jabs--things you don't need A&E for, but do need a doctor/nurse to check out). They can be stand alone (often in strip malls or office buildings) or inside a supermarket/big box store or chemist.

I would also locate the nearest 24 hour pharmacy (chemist). Some of the big chains here in the States are CVS and Walgreen's. Big box stores like Target also have pharmacies inside, although not usually 24 hours, and big supermarkets often do as well. The management of wherever you're staying, can probably help you find these.

I would not leave anyone with dementia, alone in an unfamiliar place (whether that's the toilet at the airport or where you're staying in Florida). And if she's in the park with you, and doesn't go on a particular ride, I would leave someone with her--basically I wouldn't leave her unattended anywhere. And definitely make sure she has your contact information somewhere on her person, and that your phones work in the States.

There may be more disorientation/confusion than normal.

Routines and energy levels may be disrupted by both traveling, and the time shift. Be sure to account for the time difference with any time-sensitive medications.

I've definitely seen others here on TP mention that you may see behaviours when traveling, that you don't see at home.

My other suggestions are general travel ones such as, make sure you have enough of her medications to last the trip, plus extras in case you get delayed or lose any. Don't pack needed medications in checked baggage. Remember that some medications that are prescription only in the UK are available over the counter in the States, and vice-versa. Have current copies of all prescriptions. That sort of thing.

I'm not familiar with the talking tiles and am curious about those?

I'm sorry, I don't have experience with trackers, but others here will. I don't think it's extreme; it could come in handy. I think you are trying hard to be conscientious and plan well and cover all your bases, so you can enjoy your holiday.

I will see what else I can find for you.

I hope all goes well and you have a good holiday!

Hi Amy in th US,

Really helpful stateside advice, thank you so much. Take a look at the tiles on the Alzheimers website, unfortunately it won't allow me to post the url which isn't helpful! Let me know if you can't find them & I'll see how else I could address this. They are on the shop page under 'daily living aids'

We've got them but have yet to set them up. I was going to set them up with photos on, eg a photo of the washing machine insitu, you then record your instructions for how to use the machine & all you have to do then is press the 'tile' which will repeat what you've just said into it! Great idea as mums not getting to grips with the new machine due to it being a bit more advanced than the old one & I often have to show her what buttons to press. I was also going to put one by the phone with a recording of our main telephone numbers. I guess the possibilities are endless really.

Many thanks

 

[Amy in the US]

RaspPav, thank you for the additional information on the tiles. My mother is long past the stage where this will be helpful, but I know others for whom it might be of assistance, and will pass along the relevant info at my carers' group.

If there is anything I can research or look up for you near your destination, or tell you what something is (such as the name of a grocery store or pharmacy or business or something), please don't hesitate to ask.

I do hope your holiday is relaxing and you all enjoy some sunshine.

If you're so inclined, we would be interested to hear updates, please.

Best wishes to you and your family.

 

[Jasmine123]

Holiday sounds great

Hi, I haven't got any specific advice though your holiday plans has made me think of holidays my mum has been on since she was diagnosed. She got diagnosed five years ago and since then has travelled around India, Bolivia with my dad and I have also been on holiday with her. A year after she was diagnosed we went skiing and on the first morning took her on the slopes. After three turns she decided skiing was no longer for her (fair enough) and then she relaxed in the chalet in the day and we took turns going back at lunch time to pick her up and take her up the ski lifts to have lunch up the mountain with the rest to us. I never at the time thought that it wouldn't be ok to leave her in the chalet alone and she made it clear she didn't feel up to skiing. My most recent holiday and will be my last with my mum was in the summer when my mum, my sister and her baby and I went to Somerset for a week. By this point she couldn't really talk, wandered continuously and needed help with dressing and bathing and eating. So because of this we found a little cottage that had a gate so she couldn't wander and as activities we just went to market towns, bought interesting food and made nice meals as there wasn't much else we could do. Obviously our trip to Somerset is in no way relevant to your trip to America as your mother sounds very capable. It is more to say that we adjusted our holidays so that we could keep going on holiday and am glad we have done so.

There were obviously really stressful moments and I definitely felt more stressed out at the end of my holiday in Somerset then at the beginning but still think it was worth it. So all the best on your trip to America.