Ex pats with dementia
- Thread starter Donk1
- Start date
Welcome to the forum @Donk1
I’ve no personal experience of this but I’m sure others do. It might help if you let us know which country you are in.
There’s a link on this site to help find support in different countries. It might be worth a look -
www.alzint.org
I also found this forum.
www.expatforum.com
Please do keep posting here though. I know you will get lots of support.
I’ve no personal experience of this but I’m sure others do. It might help if you let us know which country you are in.
There’s a link on this site to help find support in different countries. It might be worth a look -
ADI - Our members
ADI is made up of 105 members from around the world, each a non-profit organisation that works to support people affected by dementia, as well as their carers and families.
www.alzint.org
I also found this forum.
Dementia Help
www.expatforum.com
Please do keep posting here though. I know you will get lots of support.
Yes, there are a few threads by people who are living abroad. I recollect that France, Spain and Germany have mentioned and somewhere 'less developed' which was not named.
Thank you so much. We live in Crete and have done for 18 years. I have not returned to uk since we left. We have run a donkey and horse sanctuary for 16 years and live in a caravan at our sanctuary. I have been in denial for the last 5 years but finally last week OH got a diagnosis. Things are not bad at moment, a lot of the time he thinks I am a volunteer although he knows who everyone else is. he is still quite able and enjoys feeding the animals although I need to remind him about things all the time. I am scared as I really don’t know what the future will bring and what to do as it looks like there are no facilities here at all. We live a very isolated existence. we both want to continue living at the sanctuary as long as possible…..but so lonely .
Hi Donk I can really relate to the way that you feel, even tho I am here in a very different life in the UK. My husband hasn’t got a diagnosis yet, and is in complete denial and so I flip flop between feeling the fear of oncoming doom and being in denial myself. I seem to be the only one who can see what is happening to him so maybe it’s me going crazy!
I have told some people on a need to know basis but then feel disloyal. He is only really settled here at home when I am with him, I still go out sometimes in the day to see friends or run errands but feel I have to rush back to check he hasn’t got himself in a pickle ( due to ‘malfunctioning’ equipment or something that was my fault). So I too feel isolated and lonely a lot of the time. He knows who I am but no longer takes any interest in me. I have no idea how to go about getting any help (until he gets worse maybe?) and I fear for the future so maybe a lot of the things you are feeling you would be feeling anyway wherever you lived. Not sure that is much comfort- sorry! - but I wanted you to know that I feel your pain. Sending love x
I have told some people on a need to know basis but then feel disloyal. He is only really settled here at home when I am with him, I still go out sometimes in the day to see friends or run errands but feel I have to rush back to check he hasn’t got himself in a pickle ( due to ‘malfunctioning’ equipment or something that was my fault). So I too feel isolated and lonely a lot of the time. He knows who I am but no longer takes any interest in me. I have no idea how to go about getting any help (until he gets worse maybe?) and I fear for the future so maybe a lot of the things you are feeling you would be feeling anyway wherever you lived. Not sure that is much comfort- sorry! - but I wanted you to know that I feel your pain. Sending love x
@Donk1, I can understand how scared you must be by your OH's diagnosis but I think that you do need to start making plans for the future including what to do about the donkey sanctuary so that you don't have to make sudden decisions in a crisis (e.g. you become unwell or have an accident and there is nobody to look after your OH and the donkey sanctuary). Dementia is progressive and if your OH lives with it for a long time he is likely to need care with every aspect of day to day living which can be very time consuming. He may also start to wander off or do dangerous things which will mean that he will require constant supervision. This all might make living in your current situation unsustainable. There may be services that you can tap into in Crete but living somewhere very isolated is likely to be a problem - as it can be in the UK as well.
You must have had a very rewarding life running the donkey sanctuary for so many years.
Do keep posting for support.
You must have had a very rewarding life running the donkey sanctuary for so many years.
Do keep posting for support.
Thank you. Yes..i know what you mean about thinking you are going crazy. I would think there was a problem and then convince myself it was in my imagination. Only when my sons visited could I get an independent opinion. And yes, even now having got a diagnosis I feel disloyal saying anything to people.
Don't feel disloyal, he will need all the help and perhaps more importantly, the understanding of those around him.
Seek whatever help is available locally, get him used to people coming into the house, cleaners etc, in preparation for the time when Care will be needed.
Bod
Seek whatever help is available locally, get him used to people coming into the house, cleaners etc, in preparation for the time when Care will be needed.
Bod
It's not disloyal, it's helping him, even if he woudn't appreciate it. What you don't want is a situation where he meets someone who doesn't know, tells them a bizarre story, only to have them turn round and say, 'What are you talking about? That didn't happen - are you mad?' Then he'd be really upset.
It's best to tread gently around people with dementia but if other people don't know, they may be insensitive or even hostile.
Hi Donk
I think I may be the person with the undisclosed remote situation. We live in a remote part of the Philippines. Like you many years ago we set up a much needed work here. We work with the very poor people in the area. It was our choice to stay long past the time when we could have gone home to UK.
My husband was diagnosed with Alzheimers nearly 8 years ago but had signs before then.
The decision to stay knowing there was no support, no doctors who understand dementia, no respite care or homes ,but loving where we are and what we do was a hard one and not taken lightly. For me personally despite what is happening it is the right decision
BUT
It is so so hard. It is so lonely. No body knows or understands. There are days I would give almost anything for a hug. The doctor here has prescribed 2 different powerful anti psychotic drugs and told me to give them to him when I think they will help. I do not know what I am doing most of the time just hoping my best is good enough. Local people will help if I pay them but they do not understand.
My husband is now in the later stage. He has regressed to about a 3 year old. I shower him, put his clothes on him, help him with food. He wants to help but can't do much more than sit and watch. It is hard work 24/7.
12 months ago recognizing how much more help I would need to give my husband I made some big changes. I found local people who would take over the work we were doing. What I couldn't pass over to others I stopped. I knew there would come a time that no matter how much we loved the work my husband would need all my focus and at 73 I couldn't do it all.
May I suggest you look at your options. Could you return to UK? I know what it is like to have to walk away from something you have poured so many years of your life in to. You may not want to but it may be the best thing for you both. Look at it from the positive side. Even if you need to stop now just think of all the amazing things you have done that wouldn't have been done without you.
Stay but let the work go to other so that it will still continue .
Looking after someone with dementia becomes all consuming ,work through how you can manage that.
Making some choices makes this whole stuff easier and not so scary
I don't post on this site often but I do use it a lot. The nights he gets a little sleep I read through everything I can. The OCD is driving me crazy at the moment so it's a relief to
LIsten to others sharing
I do hope you get a chance to put in plans for your future.
Thank you so very much for replying….it does sound as though we are in a similar situation. My OH (not married) is still functioning well and enjoys working with the animals still and has expressed that he wants to stay here. I have been looking into the options and it looks like a return to UK is really out of the question as it seems it is impossible to know what help will be available until you have moved and benefits like housing help may not happen for a few months at earliest. We have no savings and live on his govt. Pension. We do own a small house here and some farm land. Having lived in such a beautiful remote location I cannot imagine going back to live amongst a lot of people. So we will stay. Locals here will not help with animals so if the worst comes to worst I will have to try to rehome our rescued horses and donkeys to another charity (don’t even know if they would take them) but again this is unthinkable. The doctors here are very good albeit all being done privately and it seems that any other help is also done privately e.g. find a live in carer But in our local town there does not seem to be any specific dementia help. I am rambling..sorry. i still feel fortunate living an outside life as I am sure it is therapeutic for both of us and cannot imagine what it would be like to be locked up inside a house with PWD. It is so hard to plan when we don’t know how fast this will progress
Hi my parents and I moved to Spain 20 plus years ago… lost dad a few years ago mum has Alzheimer’s…. I was a live in carer in uk for over 10 years often with Alzheimer’s. I have found care in Spain awful…. Care agencies either Spanish or British not honest will do what ever they can for extra money. I tried to keep mum in her own home for a while as due to other circumstances I had to carry on working. Carers were lazy often stole which was easy to do by using a rubbish bag and saying they are going to the bins. Carers not turning up. I moved mum in with me just before COVID struck. It was very difficult mum was angry with her illness which was taken out on me. One incident mum managed to get out of terrace locked me in house course couldn’t find her way home. Somebody found her and called police. Mum told them I was beating her up so I was arrested on spot a night in jail. Worse mum was left completely on her own for over 24 hours. When I got home mum had tried to change her pads mess everywhere including dogs… no meds taken no food for mum think she ate raw bacon…. Burnt paper and cloth everywhere… police would not listen when said mum not safe to be on her own. After that I worried constantly if something happened to me what would happen to mum…. It’s only really me and he. I made heartbreaking decision to find a home for her…. I hated each very short weekly visit I was allowed. Mum was so heavily sedated she could hardly speak she went in being able to walk with a walker to be kept in wheelchair all day no pressure cushion at all. I was constantly being told mum was pretending to have stomach pains always throwing plates. Each resident there in a wheelchair the foot rests were never used a male staff used to do wheelies with them. It terrified mum. Most residents as well as being sedated at night were strapped into bed.
after 4 months I got mum home again. After many problems with carers and mums prescription as it felt I was playing a game who got to pharmacy first to collect me or resident home! I found two wonderful people who help me with mum. Very honest and actually care. The same beliefs as me in that mum has what she likes to eat she has a smoke when she wants and sleeps with her little dog again. It’s been just over a year now mum back home have to say best decision I have made. Care for elderly where we live in Spain is awful. Very little understanding. Less for Alzheimer’s and dementia. It’s still a country where family do the care. Due to so many expats care has become a huge money making business. I do understand that we all need to make a living yet so many go into for greed and thinking it’s an easy job.
sorry to rant on …. Life is now good for me and very good for mum. Even with the illness progressing now.
Spending hours reading through comments and replies on this site has been a life line for me. Some of the things talked about are things I have worked through but the most helpful have been preparing me for what may happen in the future. The one things that runs through a lot of the posts is us admitting we are scared, frightened about what is going to happen, and when and if we are going to manage. I am still scared, I desperately want this to be over but then knowing what that means that seems a terrible thing to think, but I am being honest.
What has helped me most is that after going through shock and denial stage I started to put some plans in place. None of us know how quickly things will progress and I knew that I couldn't stick my head in the sand as that would cause more stress. There are no facilities here, no care homes, medical care team's only private doctors costing more money . So it was time , fighting and screaming inside, to put on the big girl panties accept the inevitable about some of the things.
Donk I have made some unbelievably hard choices as things have become difficult and things had to change. Doing some things that I said I would never do. I have had to abandon people that I was caring for. Trying to find places for orphan boys to live sent me to my toilet floor to howl in pain because I thought my heart would break. But I know it is better for them that I do this now when I can try and make the arrangements rather than something happens to me and someone else less compassionate will deal with things.
I am now at stage 4 of my plans as we are going down hill rather fast my husband with Alzheimers later stage and me with exhaustion and arthritis. I have a couple coming tomorrow to help in exchange for basic accommodation, food and a tiny salary.
Plans don't always work and things like losing a tooth, UTI'S kidney stones, people helping and stealing instead etc etc but for me having some idea how I am going to handle the next step has taken away so stress.
I do hope this site can help you. So much wisdom here.
What has helped me most is that after going through shock and denial stage I started to put some plans in place. None of us know how quickly things will progress and I knew that I couldn't stick my head in the sand as that would cause more stress. There are no facilities here, no care homes, medical care team's only private doctors costing more money . So it was time , fighting and screaming inside, to put on the big girl panties accept the inevitable about some of the things.
Donk I have made some unbelievably hard choices as things have become difficult and things had to change. Doing some things that I said I would never do. I have had to abandon people that I was caring for. Trying to find places for orphan boys to live sent me to my toilet floor to howl in pain because I thought my heart would break. But I know it is better for them that I do this now when I can try and make the arrangements rather than something happens to me and someone else less compassionate will deal with things.
I am now at stage 4 of my plans as we are going down hill rather fast my husband with Alzheimers later stage and me with exhaustion and arthritis. I have a couple coming tomorrow to help in exchange for basic accommodation, food and a tiny salary.
Plans don't always work and things like losing a tooth, UTI'S kidney stones, people helping and stealing instead etc etc but for me having some idea how I am going to handle the next step has taken away so stress.
I do hope this site can help you. So much wisdom here.
Hi Donk. My wife and I have lived in France for 25 years now. She always dealt with all the French paperwork, etc. Her command of the French language was always far better than mine. It was about 6 years ago now that I noticed something was not quite right with her memory etc, but it was only 3 years later that she underwent tests which confirmed that she was suffering from Alzheimer's. I cared for her at home until 3 months ago when her doctor advised me that for her safety and my sanity she should be placed in a care home (perhaps temporarily). We found one not too far from our home. It was a terribly difficult decision for me, but I felt that there was no choice. Her condition slowly worsened and her mood swings were difficult for the home to cope with. it was suggested that she be sent to a special centre that specialises in the disease and undergo a close appraisal, so as to determine the correct medication for her behaviour. They have now discovered that she has a rare form of dementia ( alongside the Alzheimers), called "Bensons"disease or PCA, which affects her ability to process what she see"s. And progresses much faster, than just Alzheimers. Unfortunately, the future is bleak.
Thank you Mikek for your post. I have several times taken my husband for sight checks and been told there is nothing wrong with his eyesight and his glasses do not need changing. And yet he can not see things. Reading up on Bensons syndrome you mentioned fits perfectly. He can see but can't process what he sees. He can have a fork in his hand but he can't recognize it so can't see it. When dressing him he can not recognized items of clothing so if I am not watching carefully he will try and put his shorts over his head or t shirt on his legs because he can't identify clothing. It helps knowing it's not just Alzheimers confusion but another recognized condition. This problem was quite noticeable before the Alzheimers got sever enough for him to be co fused by articles he picked up.
Just another piece of the puzzle.
That combined with the more recent but now regular hallucinations make me sometimes feel as if he is living in a parallel universe . The love lies are now more frequent than the truth just to pretend I understand his world and prevent outbursts. It's all tough but it does help knowing I am not alone.
Just another piece of the puzzle.
That combined with the more recent but now regular hallucinations make me sometimes feel as if he is living in a parallel universe . The love lies are now more frequent than the truth just to pretend I understand his world and prevent outbursts. It's all tough but it does help knowing I am not alone.
