Holiday Blues

[Chrystle]

My partner has mild-mod dementia, but the lead up to his diagnosis meant we missed out on hols for a couple of years. Things having 'settled(!)' after diagnosis, I was keen to get a couple of holidays, which we did - BUT, my partner experienced disturbed nights where he appeared to act out dreams - to the extent of going out into the corridor, locking himself in the bathroom and then being unable to get out - and being very cross I had locked him in!- illogical conversations etc. Seems funny now, but scary (I thought he had wondered off at 2am at one point) and tiring at the time. It almost ruined our holiday, and I'm thinking what it's best to do. Not going on holiday at all is an option of course, but my holidays are precious and I'm not giving up yet. Any thoughts on what we can do to make it easier for him?
Does any one else out there feel as I do, that some of this is him trying to get his own way on holiday? 2 holidays were disrupted, but the one which proved most difficult was 'my' holiday. He was much more prepared to overcome the problems on the other holiday which was more what he wanted to do.
He is on memantine and takes it at night, as it makes him so sleepy - anyone else have experience of this?
Thanks for reading this.

 

[vmmh]

My partner has mild-mod dementia, but the lead up to his diagnosis meant we missed out on hols for a couple of years. Things having 'settled(!)' after diagnosis, I was keen to get a couple of holidays, which we did - BUT, my partner experienced disturbed nights where he appeared to act out dreams - to the extent of going out into the corridor, locking himself in the bathroom and then being unable to get out - and being very cross I had locked him in!- illogical conversations etc. Seems funny now, but scary (I thought he had wondered off at 2am at one point) and tiring at the time. It almost ruined our holiday, and I'm thinking what it's best to do. Not going on holiday at all is an option of course, but my holidays are precious and I'm not giving up yet. Any thoughts on what we can do to make it easier for him?
Does any one else out there feel as I do, that some of this is him trying to get his own way on holiday? 2 holidays were disrupted, but the one which proved most difficult was 'my' holiday. He was much more prepared to overcome the problems on the other holiday which was more what he wanted to do.
He is on memantine and takes it at night, as it makes him so sleepy - anyone else have experience of this?
Thanks for reading this.

I took my OH on a trip from New York to Hawaii while I thought him still capable and able to enjoy it. He said he wanted to go and had always talked about it in the past as a thing to do "someday". So when the chance came, we took it. Thankfully, my sister went along with us. She helped me keep track of him in the airports and when restroom breaks were needed. And at times when we were in a sight seeing group and got separated. If it had just been me with him, I would have gone totally crazy for the number of times he walked off. And I would have been fearful everytime I went to the restroom that he would be missing when I came back out. And since he "didn't look like he had a problem" strangers did not understand my panic when he would walk away from me. We also had a problem with one of the presentations done by the local actors at the Cultural Center. They were portraying how past strangers to the island were greeted and used native language with native dress. This upset him terribly at the time and for the remainder of our trip. He kept referring back to it with a lot of hostility. I never would have thought that type of thing would be an issue. So, my response to you would be to be careful with going on holidays. People with dementia typically don't respond well to changes in their environment and their response can be very unpredictable. And take someone else with you if you can

 

[Manc70]

My partner has mild-mod dementia, but the lead up to his diagnosis meant we missed out on hols for a couple of years. Things having 'settled(!)' after diagnosis, I was keen to get a couple of holidays, which we did - BUT, my partner experienced disturbed nights where he appeared to act out dreams - to the extent of going out into the corridor, locking himself in the bathroom and then being unable to get out - and being very cross I had locked him in!- illogical conversations etc. Seems funny now, but scary (I thought he had wondered off at 2am at one point) and tiring at the time. It almost ruined our holiday, and I'm thinking what it's best to do. Not going on holiday at all is an option of course, but my holidays are precious and I'm not giving up yet. Any thoughts on what we can do to make it easier for him?
Does any one else out there feel as I do, that some of this is him trying to get his own way on holiday? 2 holidays were disrupted, but the one which proved most difficult was 'my' holiday. He was much more prepared to overcome the problems on the other holiday which was more what he wanted to do.
He is on memantine and takes it at night, as it makes him so sleepy - anyone else have experience of this?
Thanks for reading this.

Hi Chrystle, our last ‘proper’ holiday was three years ago, the last one I really looked forward to. I’d booked it because I had known for about a year that things weren’t quite right with my OH and I wanted to get away, relax and gently bring up the fact that he needed to see the GP. He did then we had a few years of getting the diagnosis I knew was coming. As you say holidays are precious so these days I book one or two night breaks not too far from home but these can be stressful, the days being ok but nights spent either reassuring my OH when he’s confused about where he is, or only half asleep ready to spring into action if he gets up. I had half decided to give up on holidays but I’ve taken the bull by the horns and booked a 6 day holiday in September involving a long drive and short flight which I only feel able to do as we are going with good friends which makes me feel more secure. I talk about the plans, show my husband the website of the hotel we are staying in, the rooms, grounds etc, every now and then in the hope that it becomes as familiar as possible to him, although I don’t hold out much hope but you never know. When I am tired I often think I would rather just be staying at home and have to hope my usual energy and determination comes back. Best wishes to you

 

[Amethyst59]

We are still taking holidays, but with some adaptation. Our first real signs of dementia were my husband leaving the hotel room in the night. For a few holidays, I dealt with this by piling empty suitcases in front of the door, so he would make a noise and wake me if he tried to get out.
The second thing we do is to leave a light on in the bathroom and leave the door open. Night wandering is often a search for a toilet. That one worked for a good couple of years.
Now we travel only to familiar places, and I know that I will only half sleep the whole time we are away. So, I won’t go anywhere that I have to drive for too long...or we take someone with us. Going abroad now, we take someone with us, so I can get some sleep in the day and so we can manage toilet trips between us.
The other thing we do is cruise. I am aware this is not an option for some people and that we are really lucky to be able to. We book the same cabin on the same ship each time. I cannot attend lectures or activities unless my husband comes with me, and we do not leave the ship in ports, unless we can wander around streets in sight of the ship. (He is anxious, if it is out of sight). We have done some booked trips from the ship, but that was in Russia, where we couldn’t wander and where we had gone at his request. My sister was with us, but even so, he had a psychotic episode on the coach back to the ship on one occasion.
Short story....holidays are not easy, but possible. When the time comes that his anxiety and my exhaustion means a holiday is more trouble than pleasure, we will stop travelling.

 

[Herewego]

My partner has mild-mod dementia, but the lead up to his diagnosis meant we missed out on hols for a couple of years. Things having 'settled(!)' after diagnosis, I was keen to get a couple of holidays, which we did - BUT, my partner experienced disturbed nights where he appeared to act out dreams - to the extent of going out into the corridor, locking himself in the bathroom and then being unable to get out - and being very cross I had locked him in!- illogical conversations etc. Seems funny now, but scary (I thought he had wondered off at 2am at one point) and tiring at the time. It almost ruined our holiday, and I'm thinking what it's best to do. Not going on holiday at all is an option of course, but my holidays are precious and I'm not giving up yet. Any thoughts on what we can do to make it easier for him?
Does any one else out there feel as I do, that some of this is him trying to get his own way on holiday? 2 holidays were disrupted, but the one which proved most difficult was 'my' holiday. He was much more prepared to overcome the problems on the other holiday which was more what he wanted to do.
He is on memantine and takes it at night, as it makes him so sleepy - anyone else have experience of this?
Thanks for reading this.[/QUOTE

Hi Chrystle

My OH was diagnosed in 2017 but I have seen this coming since 2011 when we did an around the world trip. In 2011 it was little things I noticed, that were different or unusual behaviour which made me wonder if he was headed towards dementia - his mom and several of his uncles/aunts had it so while I wasn't looking for it, being on holiday brought it out and made me aware of it.

Since 2011 we have been on a number of holidays and as his illness progressed, each one has become more challenging with the last one in Dec/Jan 2017/2018 -a 6 week holiday travelling from the UK to Australia for 6 weeks to see our daughter. Judging by previous holidays I realised that it was now or never as our travelling days were coming to an end.

Issues which appeared as the illness progressed:

• 2011, constantly wanting to be told/reminded of where we were going, when, how etc. Had given him an itinerary of the trip with all the detail (set out clearly) but did not refer to it or said it was confusing - wanted constant reassurance about where we were going, how long we were going to stay etal. I did nearly all the driving as it was obvious that he was more nervous than usual when he was unsure of where he was and I needed to tell him repeatedly every few minutes (on the 2 times he did drive) where we were headed, how long it would take, where we were turning etc.
• In 2013 went to Ireland, more issues like previous trips but in addition he woke at night seeing 'people' in our room, needing to make sure he did not get lost when we were out and again I did all the driving
• In the following years did some trips, but in 2016 I decided we should go to Canada to visit my family and his brother as I did not think he would be able to go again as even though we did not have a diagnosis I knew. It was increasingly obvious that his sense of direction no longer worked, his ability to remember any information for any period of time was extremely poor, he was very nervous of staying anywhere by himself - I left him for 3 nights in the care of his brother (OH stayed in a B&B), I stayed with him the 1st night and the last night, but made sure his brother collected him in the morning and brought him back in the evening of the 3 nights in the middle, making sure he got into the flat and knew where everything was before he left.
• Our final trip in 2017/2018 - would have been impossible without the fact that we stayed with our daughter so it did not fall entirely on me to look after her father. It was a good trip, was glad we did it but can't say it was truly a 'holiday' for me. It also made me realise that 6 weeks was too long, it would have been better to just do 4 as while he was confused, the final 2 weeks were the worst and he became more and more confused each day. I thought the longer he stayed the more he would settle, but that was not the case - in fact, quite the opposite happened.
• This year, my OH does not yet know it but he is going on holiday at the end of August for 7 days!! I happened by chance to come across an advertisement for a holiday for disabled - when I looked into it I found the organiser had been doing these for 20 years, lived near us and was happy to take OH - without me! OH will have an able bodied male companion who will take sole charge of OH and look after him day and night. This will give OH something he enjoys (or always used to anyway), he already thinks he is travelling somewhere all the time, and the bonus is I get 7 days at home without OH - bliss!
• I on the other hand will be going away for 3 nights next week leaving our 3 adult children in charge of their father. - they do know sort of what they are getting into, but I suspect they may have a better understanding of what I live with day in day out - I don't think I will be able to do this again and believe next time I need a break I will have to find either respite for OH or get someone (company) to live-in while I take a break. My mom is 93 and my older sister has terminal cancer so I know over the next year or two I will have to go back 'home' (overseas), so will definitely need OH to be looked after while I am gone - he won't be able to come along and I could not expect the kids to look after their father for more than a few days.

We have had more holidays than I described above, but what it demonstrates is a decline which has now lead to separate holiday's and eventually (this year?) OH will not be going at all. Part of a holiday is to rest and recuperate but travelling with someone that has dementia and especially as the illness progresses, there is less rest and little recuperation in particular for the carer - and is certainly confusing for the OH and hence stressful for him - I noticed with each holiday this has become worse!

What would help - definitely travelling with someone else to assist, especially at airports and on flights. OH got lost in Sydney Airport when we arrived - I was collecting our bags, he was right near me, picked up a bag turn around and he was no where to be seen! A tracker on the phone, or other device that works in the country / area you are travelling to would be useful - peace of mind even if you don't have to use it.

Your idea of familiarising him with where you are going is a good idea but as you say - may or may not work. He is likely to be much more agitated while you are away - keeping him occupied with lots of activities is good, but he will also (in all likelihood) get tired before you do and I have found if my OH is overtired/over stimulated, then he doesn't sleep well either. You may need to do less sightseeing or activities than you might have done in the past.

I only tell my OH information on a need to know basis or he will be up early and packing every day until the day of the trip - he is already doing this and he is not aware that we are going anywhere! He does not recognise our home of 35 years as our home and is currently 'working' and wants to complete the job so he can go 'home' which he thinks is in England, but we are in a different country! He travelled internationally a lot with his employment and now thinks he is 'working' - the current obsession!

Anyway - good luck, hope you enjoy your holiday - do ask if there is anything specific you want to know.

 

[highland girl]

Hi we took a holiday earlier this year, was very hard and stressful, but like you I don’t want to give up on holidays. We’ve had to give up hotels and eating out.
So trying self catering in a fully accessible caravan in sept. What I learnt from my earlier holiday. Don’t plan to do anything in mornings or evenings. Just go out in afternoon. Accept nights are going to be restless he’s in a strange place. Make sure he can’t leave the building room or whatever without you hearing. Someone else said in hotel put something in front of door so you can hear. For me I need to think ahead with shopping etc as if he refuses to go out we won’t be able to eat (at home we always have back ups in freezer). Prepare to be embarrassed with his behaviour at times in public, it is always worse if away from home. BUT we might as well be somewhere nice having problems as at home. We don’t go abroad anyway so within driving distance which I have had to shorten. Hope this helps xxx

 

[DeMartin]

Hi we took a holiday earlier this year, was very hard and stressful, but like you I don’t want to give up on holidays. We’ve had to give up hotels and eating out.
So trying self catering in a fully accessible caravan in sept. What I learnt from my earlier holiday. Don’t plan to do anything in mornings or evenings. Just go out in afternoon. Accept nights are going to be restless he’s in a strange place. Make sure he can’t leave the building room or whatever without you hearing. Someone else said in hotel put something in front of door so you can hear. For me I need to think ahead with shopping etc as if he refuses to go out we won’t be able to eat (at home we always have back ups in freezer). Prepare to be embarrassed with his behaviour at times in public, it is always worse if away from home. BUT we might as well be somewhere nice having problems as at home. We don’t go abroad anyway so within driving distance which I have had to shorten. Hope this helps xxx

Re non freezer food, M&Sand Waitrose both do/did shelf stable stew type meals, no refrigeration needed. Tinned peas, corn, potatoes, or instant mashed potato.

 

[Harlech]

We are still taking holidays, but with some adaptation. Our first real signs of dementia were my husband leaving the hotel room in the night. For a few holidays, I dealt with this by piling empty suitcases in front of the door, so he would make a noise and wake me if he tried to get out.
The second thing we do is to leave a light on in the bathroom and leave the door open. Night wandering is often a search for a toilet. That one worked for a good couple of years.
Now we travel only to familiar places, and I know that I will only half sleep the whole time we are away. So, I won’t go anywhere that I have to drive for too long...or we take someone with us. Going abroad now, we take someone with us, so I can get some sleep in the day and so we can manage toilet trips between us.
The other thing we do is cruise. I am aware this is not an option for some people and that we are really lucky to be able to. We book the same cabin on the same ship each time. I cannot attend lectures or activities unless my husband comes with me, and we do not leave the ship in ports, unless we can wander around streets in sight of the ship. (He is anxious, if it is out of sight). We have done some booked trips from the ship, but that was in Russia, where we couldn’t wander and where we had gone at his request. My sister was with us, but even so, he had a psychotic episode on the coach back to the ship on one occasion.
Short story....holidays are not easy, but possible. When the time comes that his anxiety and my exhaustion means a holiday is more trouble than pleasure, we will stop travelling.

Hi @Amethyst59 , I thought I was reading a post I had written when I saw your post. I have experienced the exact same behaviour on holidays! We did a Mediterranean raise last month and OH would complain about leg hurting if we strayed away from the ship too far, although he could walk around the ship,all day, reminds me of children making up stories when they don’t want to do something. We had an issue last year where OH went out of the cabin instead of going into the bathroom (even though the light was on ) and I didn’t wake, so this year I was able to keep open the wardrobe door with a suitcase which blocked the cabin door and kept open the bathroom door. He functions well at home in his usual routine, but can be difficult in other circumstances. I have a weekend break booked in September for a girlie break, with family providing meals for OH late afternoon as he is able to manage as long as he doesn’t cook (toast is still being managed). I just need to be able to not be responsible 24/7 for a few days. I read posts often on TP but don’t often post myself, but saw your post and was surprised at the similarities.

 

[Izzy]

I took my husband on holiday for many years into his diagnosis. It got harder to do as the years went on. Every time we went away we seemed to be faced with another issue and I attempted to find a solution to that before we went away again. On holiday in Turkey he disappeared from the room twice. I had suitcases bundled up in front of the room door but he somehow managed to move them without me hearing him. He had gone to the toilet during the night and turned right and went into the corridor instead of left to come back to bed. I spent the last few nights of the holiday sleeping on the floor in front of the door! I thought that was the end of our holidays but someone on TP suggested getting a portable infrared door alarm. I did this and it was a great success. The one I got doesn't seem to be available now but this is more or less the same -

Infra red alarm.

As time went on other issues presented themselves and eventually we could only go if I took someone else with me. We always made full use of the assistance available at airports too.

Eventually the time came when I realised he wasn't getting much out of the holidays and the stress I felt while we were away meant I wasn't getting much out of them either. This was the point where I decided to give up our trips.

 

[Amethyst59]

I took my husband on holiday for many years into his diagnosis. It got harder to do as the years went on. Every time we went away we seemed to be faced with another issue and I attempted to find a solution to that before we went away again. On holiday in Turkey he disappeared from the room twice. I had suitcases bundled up in front of the room door but he somehow managed to move them without me hearing him. He had gone to the toilet during the night and turned right and went into the corridor instead of left to come back to bed. I spent the last few nights of the holiday sleeping on the floor in front of the door! I thought that was the end of our holidays but someone on TP suggested getting a portable infrared door alarm. I did this and it was a great success. The one I got doesn't seem to be available now but this is more or less the same -

Infra red alarm.

As time went on other issues presented themselves and eventually we could only go if I took someone else with me. We always made full use of the assistance available at airports too.

Eventually the time came when I realised he wasn't getting much out of the holidays and the stress I felt while we were away meant I wasn't getting much out of them either. This was the point where I decided to give up our trips.

I was hoping you would see this thread as I know you travelled with Bill a lot. I’m going to look at that alarm, brilliant idea. I didn’t know you could get such things.

 

[Izzy]

I was hoping you would see this thread as I know you travelled with Bill a lot. I’m going to look at that alarm, brilliant idea. I didn’t know you could get such things.

It really was good. I passed it on to friends when Bill died. To be honest the only person who ever set it off was me when I was trying to switch it off in the morning! The sound is ear piercing.

 

[Amethyst59]

It really was good. I passed it on to friends when Bill died. To be honest the only person who ever set it off was me when I was trying to switch it off in the morning! The sound is ear piercing.

Lol, can see the same thing happening to me!

 

[Agzy]

My OH and I have enjoyed many caravanning holidays in our tourer and have covered a good part of Europe and Holland has been her favourite place. Having been diagnosed 40 months ago things changed until this year she announced no more holidays, ever, at all! However, much to her credit she told me to continue to go as long as is possible (can’t be too long as I’m 76) and so I have, and not just caravan holidays either. For instance I have just come back from an 18 day coach tour of Canada which was wonderful and plan to go to Spain for 7 weeks in the van. All this because she genuinely wants me to go giving her the full control of the TV zapper and the freedom to watch endless TV oldies which is how she passes the time. Helpful family and friends have also been esential as are my daily phone calls and messages. No idea how long this will last but, like me, please think of your holiday needs and do your best to overcome the guilt and just go for it while you can.

 

[Chrystle]

Hi @Amethyst59 , I thought I was reading a post I had written when I saw your post. I have experienced the exact same behaviour on holidays! We did a Mediterranean raise last month and OH would complain about leg hurting if we strayed away from the ship too far, although he could walk around the ship,all day, reminds me of children making up stories when they don’t want to do something. We had an issue last year where OH went out of the cabin instead of going into the bathroom (even though the light was on ) and I didn’t wake, so this year I was able to keep open the wardrobe door with a suitcase which blocked the cabin door and kept open the bathroom door. He functions well at home in his usual routine, but can be difficult in other circumstances. I have a weekend break booked in September for a girlie break, with family providing meals for OH late afternoon as he is able to manage as long as he doesn’t cook (toast is still being managed). I just need to be able to not be responsible 24/7 for a few days. I read posts often on TP but don’t often post myself, but saw your post and was surprised at the similarities.

 

[Chrystle]

Thank you so much for responding to my post - I felt really encouraged to read of someone else having a similar experience, it's true what they say about feeling less lonely. And the suitcase idea is really helpful!
My best wishes to you,

 

[Chrystle]

Update - we recently managed a short break in the U.K., self-catering in a cottage - my OH slept well whilst there with no wanderings or dream acting out. My theory is that this is because our cottage was very very quiet, hardly any outside noise. On both our earlier holidays there was a lot of noise at night, and some of his disturbance came from wrong interpretation of that noise. Interestingly, my father, who also had Alz, had a similar experience while in hospital - notorious places for unexplained nocturnal noise!
I'll never prove it, but it has given me hope that we need not give up all holidays just yet, and I would be most interested to hear any of your comments.
Thanks for reading this, great to have a place to go with dementia dilemmas.

 

[margherita]

Hi @Chrystle ,
I am glad your holidays went well and you sound more relaxed.

We have been living in the country since OH retired and it is very quiet here, too quiet for my taste.
My husband has always been very fastidious when we went on holiday and Alzheimer's has not improved his behaviour, so I have given up going on holiday. Hopefully I can have one on my own one day because I feel I am under house arrest.

 

[AliceA]

I have given up the idea of holidays. The advantages are outweighed by the disadvantages. Pershaps I will reconsider it I go for a individually accompanied for us both with door to door service next spring. We have had had good holidays and travel experiences so now both come into the older bracket I think I will rest on my laurels.
I do have the advantage of a rich dream life. Last night I went to a house in Spain, nowhere I had been, so not a memory. When we suddenly had to restrict our lives to lookafter a grandchild at weekends I used to visit an island in my dreams. I used to tell my husband where we had been, he used to say I wish you had forewarned me! So perhaps I will settle for astral travel for a bit!

Re non freezer food, M&Sand Waitrose both do/did shelf stable stew type meals, no refrigeration needed. Tinned peas, corn, potatoes, or instant mashed potato.

My husband likes ParsleyBox meals. These do not need a fridge and had a very long date. He has dysphagia so has to be on a soft diet. These are slow cooked but 2-3 mins to heat. Sometimes there is an offer in magazines. £19. I used them for days when I need a real shortcut. As a cook from scratch person it is quite an adaptation!