Travel with a family member with AD

[RoseRivers]

Feel a bit of a fraud posting here as I am not a carer officially, I (28) just look out for my aunty (69) now she has been diagnosed with AD. Ever since her diagnosis she has wanted to go to visit Japan, she's never been and always wanted to go. Her husband died recently and because of her illness wasn't able to go alone. I offered to go with her for a week, she wanted 3 weeks but I wasn't sure I could handle it.
Its all booked and paid for but I am worried, its a complete package deal - everything is planned out, hotel, travel, museums, food, I just need to look after her during, but she is getting worse. No incontinence or care in that way needed but she forgets things as soon as she puts them down, repeats herself frequently and forgets things I have told her.

Is it reckless of me to take her? I felt like I was doing something good for her but I don't know if I can handle it. Does anyone have any advice traveling with someone with early-stage AD? I have informed the travel company and I asked her GP about it and they've all said its fine, but I worry.

 

[northumbrian_k]

Hi @RoseRivers and welcome to our supportive and friendly community. It seems to me that you are definitely not a fraud but are taking a very hands on approach to caring for your aunty. I last travelled abroad (to the USA) with my wife in 2016, when her Alzheimer's Disease was quite advanced. We got through it without major mishaps and had some good times that she soon forgot.

It sounds as though your aunty's conditions is less advanced. Extra vigilance is needed but I would not let that put you off.

 

[Sarasa]

Welcome to Dementia Talking Point @RoseRivers.
I'd contact the the disability services of the airport you are flying from. This is the link to what Heathrow offers, but all airports will have similar. That way you shouldn't have to wait around too long, I found delays were the sort of things that would get my mum cross and bothered so smoothing things out as much as possible really helped.

 

[RoseRivers]

Hi @RoseRivers and welcome to our supportive and friendly community. It seems to me that you are definitely not a fraud but are taking a very hands on approach to caring for your aunty. I last travelled abroad (to the USA) with my wife in 2016, when her Alzheimer's Disease was quite advanced. We got through it without major mishaps and had some good times that she soon forgot.

It sounds as though your aunty's conditions is less advanced. Extra vigilance is needed but I would not let that put you off.

Thank you, it is such a relief to hear that from people who have been through it. I've struggled talking to my friends who don't quite get it. I am glad you and your wife had some good times, I think I am focussing too much at this moment on the possible bad.
Do you have any advice on keeping mementos for someone with AD? I planned to make her a physcial scrapbook when we return since she isn't keen on using her iPad or phone anymore

 

[northumbrian_k]

If you have some photos you can easily make up a booklet by importing into a word processing application and adding a brief description of memories related to what the photos depict. During Covid lockdowns I used to send letters to my wife in her care home, comprised mainly of photos with a little bit of text printed on A4 paper. Something like that would be a permanent keepsake. A ring binder and some plastic wallets might help in organising it. If there are any small items or souvenirs from the trip - tickets, visit guides, tourist leaflets etc. - they could be included too. A proper scrapbook that you could both enjoy.

 

[Sue741215]

Definitely get hold of a Sunflower lanyard - we used one recently and were whisked through check in and let through a special short queue through the non automatic passport control section. It also enabled us to easily find seats to wait in the airport in the assistance area where those with wheelchairs wait. It was recognised in small airport in italy as well as in Birmngham where we picked it up - no questions asked at the 24 hour support desk. Prepare carefully for security - my oh very reluctant to empty pockets or watch his bags disappear into the tunnel. Do as I say not as i do as my lack of preparation has caused us problems this year even though I should have learned from last year. Also be very open about her condition and you will find kindness everywhere - I manage to do this without my oh realising as he does not accept his condition exists.

The main issue I would worry about in your circumstance is if she might wander especially in the night and if you are not sharing a room. Suggest you set up Find my phone or similar on her phone and ask her to enable you to see her location - if she is reluctant suggest you make it reciprocal - so she can know where you are as well.

Until she is at the stage where her freedom needs to be curtailed she will likely be as safe on holiday with you looking after her as she will at home. I hope you both have a wonderful time - let us all know how you get on.

 

[RoseRivers]

Welcome to Dementia Talking Point @RoseRivers.
I'd contact the the disability services of the airport you are flying from. This is the link to what Heathrow offers, but all airports will have similar. That way you shouldn't have to wait around too long, I found delays were the sort of things that would get my mum cross and bothered so smoothing things out as much as possible really helped.

That's such a good idea thank you, will this work for connecting flights to you know?

Definitely get hold of a Sunflower lanyard - we used one recently and were whisked through check in and let through a special short queue through the non automatic passport control section. It also enabled us to easily find seats to wait in the airport in the assistance area where those with wheelchairs wait. It was recognised in small airport in italy as well as in Birmngham where we picked it up - no questions asked at the 24 hour support desk. Prepare carefully for security - my oh very reluctant to empty pockets or watch his bags disappear into the tunnel. Do as I say not as i do as my lack of preparation has caused us problems this year even though I should have learned from last year. Also be very open about her condition and you will find kindness everywhere - I manage to do this without my oh realising as he does not accept his condition exists.

The main issue I would worry about in your circumstance is if she might wander especially in the night and if you are not sharing a room. Suggest you set up Find my phone or similar on her phone and ask her to enable you to see her location - if she is reluctant suggest you make it reciprocal - so she can know where you are as well.

Until she is at the stage where her freedom needs to be curtailed she will likely be as safe on holiday with you looking after her as she will at home. I hope you both have a wonderful time - let us all know how you get on.

Thank you for the great suggestions! We are sharing a twin room but we have done before she was ill to save money so I don't think she sees it as me being overbearing - she was reluctant to fill in the form for the travel agent about her illness, but perhaps I can get her to wear the lanyard if it will mean less time standing in queues (her knees hurt sometimes).

 

[Sue741215]

Although they say you have to wear it I didn't even ask my husband as he doesn't acknowledge his illness. - I just had it in my pocket and waved it around at appropriate times - my husband wasn't even aware of it. I wrote to the airport beforehand because they had changed their info to say it must be worn and I have to say they were very responsive to my plea that people with dementia do not always accknowledge their illness and said they would review their online info but that it would be alright for me to show it. Another option I considered was getting us both one and telling my husband it was to show we had fast track!

 

[Grannie G]

Another option I considered was getting us both one and telling my husband it was to show we had fast track!

I love that

 

[Anthoula]

Definitely get a lanyard. OH wore one a couple of months ago when we travelled from Stansted to Heraklion, and back, and we were treated like special guests. Whizzed through all the crowded areas, long queues etc. Felt like royalty!

 

[Yankeeabroad]

The lanyard isn't recognised everywhere internationally (not the US for sure). I made sure I sent a note to the airlines (or used their on line system) informing them of the situation. This went smoothly with AA, however SW personnel were a bit clueless and I had to ask a few times and inform at the gate that he was "disabled" (that was the only thing the ground staff understood) and ask for early boarding.

You didn't say if you were on a group tour or not, but I find most people clue in that there is a problem (after someone asks the same question 3 times in a row ) and often take over the conversation load for a brief while. There is a link around here also for tips about communicating with someone with dementia that could also save your sanity.

My dad has a wallet type thing that hangs around his neck and tucks under his shirt that he uses for travelling to avoid him taking things (like passport) out of his pockets and forgetting them. I also ask if he has everything after he goes to the toilet, etc. to avoid the setting things down and forgetting them.

Make copies of any important documents and IDs and store them on the cloud and have a hard copy in your suitcase in case anything does get lost.

You may have to slow down a bit (more cups of tea in cafes) to avoid everything becoming too overwhelming but I'm sure it will be a great experience!

 

[Sue741215]

The biggest problem when we were at destinations was when we went on trips he was anxious about the bus leaving without us or us not finding it so much persuasion needed and we always ended up early at the rendez-vous point. He also kept getting on other buses to 'check' they weren't ours to the consternation of the drivers. Luckily they seemed to recognise the word Alzheimers - I kept finding myself wanting to point to my head and make the screw loose gesture but managed to stop myself as I know how inappropriate it is!
One plus of being a dementia carer is that feeling embarrassed at his behaviour is well in the past. I actually found it quite amusing the poor Italian bus driver shouting at him to get off the bus and him not taking a jot of notice!