My husband has dementia which has accelerated in past 4 years - worse in past year . Ok tracelling if I prepare well & no stress .... Howver this time around he is getting anxious and confused in evenings - time to go home etc- I think it is sundowning. Firstly I thought just jet lag . Have given him melatonin 2 nights to settle him . Don’t want to make a habit of it as he is on Xarelto ( blood thinner) . Feel pretty much alone with this - wouldn’t want to worry my family anyway . Have coped with all changes so far . His memory is now appalling - no short term whatsoever . Needs to be watched 24/7 .
Sundowning has appeared while abroad on holidays-
- Thread starter Country lady
- Start date
Hello, Country Lady,
I assume you are in the Uk....and not sleeping? Dementia has such an affect in everything doesn’t it? Your post caught me eye, as it was my husband’s behaviour when we were abroad that first alerted me to the fact that he might be ill and not just forgetful and sleepwalking. I presume your husband has a formal diagnosis? If so, then it could well be he is exhibiting sundowning. I think the best comfort I have to offer you right now, is I have found behaviours exhibited have not been constant or permanent. I have had afternoons when my husband has not recognised me at all, or known where he is (when we were at home), but this is by no means seen every day. It is still relatively rare, though becoming more frequent.
I’m wondering if you are panicking, wondering if you will ever be able to travel again? Our first incident was in 2015. Since then we have still travelled extensively, but I have made some adjustments. We tend to stick to Europe, try to avoid extremely early flights, so he does not lose too much sleep, and more recently, we have discovered cruising. It is expensive, but it is also almost stress free. We use a company that specialises in travel for the over 50’s. Another solution for us, is to travel with my sister. She very kindly keeps my husband company so that I can get out for the occasional long walk, that he cannot manage any more. (That is due to his age, more than dementia).
Your last point, that he needs to be watched 24/7 also sounds familiar. At the moment, most days I can leave my husband for a few hours in the morning. His confusion tends to arise more after he has had a nap, or deep sleep. He wakes several times in the night, and needs to be guided to the toilet, as he sometimes wanders and can ‘perform’ in the wrong place entirely.
This lack of sleep,for me, led me very close to ‘carer’s breakdown’ just before Christmas...and I’m again in a pretty precarious position. I was advised, well over a year ago, to start getting help before you need it. That way, when it is necessary, it is also accepted as it is familiar.
I cannot stress this highly enough. My husband started to attend a form of day care, fist once a week....now twice. I call it a club...so he does too. I am in the process of arranging a sleep in carer, so that I can have regular nights off. I will be increasing the day care so that I can get regular exercise. I cannot pretend that my husband is thrilled with all this. He wants to be with me all the time, day and night. If I complied with that, I would have a breakdown and he would have to have 24/7 care from a stranger.
To preserve what life we still have together, I need time out.
Please,take the advice I was given and find some help, be it a carer, or day care (clubs!).
You will find this forum an invaluable source of information and support. The members are amazing.
I assume you are in the Uk....and not sleeping? Dementia has such an affect in everything doesn’t it? Your post caught me eye, as it was my husband’s behaviour when we were abroad that first alerted me to the fact that he might be ill and not just forgetful and sleepwalking. I presume your husband has a formal diagnosis? If so, then it could well be he is exhibiting sundowning. I think the best comfort I have to offer you right now, is I have found behaviours exhibited have not been constant or permanent. I have had afternoons when my husband has not recognised me at all, or known where he is (when we were at home), but this is by no means seen every day. It is still relatively rare, though becoming more frequent.
I’m wondering if you are panicking, wondering if you will ever be able to travel again? Our first incident was in 2015. Since then we have still travelled extensively, but I have made some adjustments. We tend to stick to Europe, try to avoid extremely early flights, so he does not lose too much sleep, and more recently, we have discovered cruising. It is expensive, but it is also almost stress free. We use a company that specialises in travel for the over 50’s. Another solution for us, is to travel with my sister. She very kindly keeps my husband company so that I can get out for the occasional long walk, that he cannot manage any more. (That is due to his age, more than dementia).
Your last point, that he needs to be watched 24/7 also sounds familiar. At the moment, most days I can leave my husband for a few hours in the morning. His confusion tends to arise more after he has had a nap, or deep sleep. He wakes several times in the night, and needs to be guided to the toilet, as he sometimes wanders and can ‘perform’ in the wrong place entirely.
This lack of sleep,for me, led me very close to ‘carer’s breakdown’ just before Christmas...and I’m again in a pretty precarious position. I was advised, well over a year ago, to start getting help before you need it. That way, when it is necessary, it is also accepted as it is familiar.
I cannot stress this highly enough. My husband started to attend a form of day care, fist once a week....now twice. I call it a club...so he does too. I am in the process of arranging a sleep in carer, so that I can have regular nights off. I will be increasing the day care so that I can get regular exercise. I cannot pretend that my husband is thrilled with all this. He wants to be with me all the time, day and night. If I complied with that, I would have a breakdown and he would have to have 24/7 care from a stranger.
To preserve what life we still have together, I need time out.
Please,take the advice I was given and find some help, be it a carer, or day care (clubs!).
You will find this forum an invaluable source of information and support. The members are amazing.
You are both describing familiar behaviours which are very stressful and upsetting. We have had a period of several years where I thought I was on top of this through a combination of daycare four days a week and higher levels of Trazodone.
We are now back to occasional nights of needing to go to bed very early then up at midnight or 2 am getting ready to go to work. On one night actually fully clothed and limping down the street. Last night after an hour of distressing behaviour I struggled him back upstairs and in to bed still in his clothes. Of course this morning he was very puzzled as to how this happened. He has no memory of it at all.
In short this is an ongoing issue, a work in progress, a downward slope - however you want to describe it - and we all have to think ahead as to how we're going to deal with it and survive it without becoming ill ourselves.
As far as foreign travel goes I stopped this after 2014 for my husband. Stress at home can be handled but in a hotel abroad it s an added problem. I used my respite last year to go abroad myself for a short holiday and it did me the world of good.
We are now back to occasional nights of needing to go to bed very early then up at midnight or 2 am getting ready to go to work. On one night actually fully clothed and limping down the street. Last night after an hour of distressing behaviour I struggled him back upstairs and in to bed still in his clothes. Of course this morning he was very puzzled as to how this happened. He has no memory of it at all.
In short this is an ongoing issue, a work in progress, a downward slope - however you want to describe it - and we all have to think ahead as to how we're going to deal with it and survive it without becoming ill ourselves.
As far as foreign travel goes I stopped this after 2014 for my husband. Stress at home can be handled but in a hotel abroad it s an added problem. I used my respite last year to go abroad myself for a short holiday and it did me the world of good.
hi @Country lady
I'm not sure whether you are on holiday now - if so, do whatever it takes to keep your husband settled while you are away as you can revert back when you are home and have a chat with his GP?consultant
maybe even call in to a doctor/pharmacy and ask for advice
if you feel you need help, please do contact your children - they have a right to worry about you both; you are their parents (well, that's how I felt about my parents and was so glad when they were honest with me) - they may well want to help and it will support you to have them to talk to (though I do appreciate that doesn't always follow)
and if you need help getting your husband home safely, do call them so that they can meet you or come to you
if you are flying, I believe that airport staff can see you through speedily if they know there is a need, so do contact your flight company
I'm not sure whether you are on holiday now - if so, do whatever it takes to keep your husband settled while you are away as you can revert back when you are home and have a chat with his GP?consultant
maybe even call in to a doctor/pharmacy and ask for advice
if you feel you need help, please do contact your children - they have a right to worry about you both; you are their parents (well, that's how I felt about my parents and was so glad when they were honest with me) - they may well want to help and it will support you to have them to talk to (though I do appreciate that doesn't always follow)
and if you need help getting your husband home safely, do call them so that they can meet you or come to you
if you are flying, I believe that airport staff can see you through speedily if they know there is a need, so do contact your flight company
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That's true Shedrech. We had a horrendous delay in 2013 flying out of Miami to Heathrow. I spoke to the airline rep and told her about John's Alzheimers and she went into immediate action and got us on an alternative flight. I was sorry I hadnt spoken up sooner.
Thank you for the advice . I am managing fine really - ignoring some of the restlessness - and giving him small amount of medication if needed when awake during night . Like you said - if necessary better to use meds &!revert st home . We are in SE Asia . I’m guessing this is the last long- haul trip - so trying to make the most of it . He is now pretty familiar with area but needs constant minding or will get lost etc . But I know he is enjoying himself ( most of the time)
Not easy - but worth it to be away in sunshine ....
Not easy - but worth it to be away in sunshine ....
@Country lady Maybe it's the disorientation of location and time zone which your husband is suffering from? I know myself that even a 1h difference can upset me so I cannot imagine how it must affect a person with dementia.
I've noticed with mum that the sundowning has returned (mum had it a bit in France) but I put it down to the side effects of the antibiotics and infection she has.
The problem with sundowning is you don't know if other factors cause it such as other issues such as jet lag, change in routine etc
I've noticed with mum that the sundowning has returned (mum had it a bit in France) but I put it down to the side effects of the antibiotics and infection she has.
The problem with sundowning is you don't know if other factors cause it such as other issues such as jet lag, change in routine etc
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Ah, so some of the others were right...you are away right now. I cancelled a trip to Nepal in November as I didn’t think we would cope. It sounds like you are doing exactly the right things and that you are both managing to enjoy some of the holiday. Please keep posting when you come home and let us know how things went.
I have just returned from Thailand with my husband, and I agree that the biggest problems occur at the airports and long journeys. On our way out, we had 'Fast Track' through the security, which costs extra but so worth it. I explained his difficulties to the staff, and they were great.
The obvious difficulties occur at the busy airports (Bangkok). It is a stressful going through visa / getting baggage etc. When we got to our final destination, he was exhausted, and slept quite a bit. Over the following few days, he adapted to the time zone, and was just the same as he is at home- dependant on me 24/7, but he enjoyed walking the beach,swimming and people watching. He obviously enjoyed the good weather and the change of scenery. He always loved travel. There were obviously some 'moments' but that happens at home as well.
The flight home was more stressful. Due to weather, the 2nd flight was longer, and he was pretty 'jumpy' and agitated. I had lots of trips to the toilet- but the Air Crew were very understanding, and he really didnt disturb anyone except myself. (stress++++). I took the advise from this forum to use whatever it took, so I used some my emergency supply of Anxicalm, which definately helped him. Then when we arrived- 2nd last flight to land before airport closed- snow everywhere, which meant we could'nt go home, and had to stay with my Daughter for 3 days. This was stressful for him, as children were so excited in the snow- lots of running in and out and lots of noise. Since we arrived home, he is much more settled, and says he really enjoyed the trip. Personally, I intend to continue to travel as long as I can with him- he is deteriorating so much , but I feel that he enjoys the change, and also I love the travel. He follows me about, so whats the difference? I do not worry about his being ill abroad, as I have already experience this, and basically the care was excellent.
The obvious difficulties occur at the busy airports (Bangkok). It is a stressful going through visa / getting baggage etc. When we got to our final destination, he was exhausted, and slept quite a bit. Over the following few days, he adapted to the time zone, and was just the same as he is at home- dependant on me 24/7, but he enjoyed walking the beach,swimming and people watching. He obviously enjoyed the good weather and the change of scenery. He always loved travel. There were obviously some 'moments' but that happens at home as well.
The flight home was more stressful. Due to weather, the 2nd flight was longer, and he was pretty 'jumpy' and agitated. I had lots of trips to the toilet- but the Air Crew were very understanding, and he really didnt disturb anyone except myself. (stress++++). I took the advise from this forum to use whatever it took, so I used some my emergency supply of Anxicalm, which definately helped him. Then when we arrived- 2nd last flight to land before airport closed- snow everywhere, which meant we could'nt go home, and had to stay with my Daughter for 3 days. This was stressful for him, as children were so excited in the snow- lots of running in and out and lots of noise. Since we arrived home, he is much more settled, and says he really enjoyed the trip. Personally, I intend to continue to travel as long as I can with him- he is deteriorating so much , but I feel that he enjoys the change, and also I love the travel. He follows me about, so whats the difference? I do not worry about his being ill abroad, as I have already experience this, and basically the care was excellent.
