Asian Families and Dementia

[beech mount]

Many cultures find "Madness" Dementia etc as a block on any future marraige prospects
and a taint on the family, and will try to hide away the person affected by it to the extent of sending them home, divorce etc. This does not apply only to "Imigrants"
John.

 

[sweetmole]

My Mum has Dementia...it's an incurable illness but you can't catch it.

I have told everyone about my Mum....We and she need help from each and every person who can give it. I won't allow the word "Mad" meaning insane to enter the conversation and I tell Mum off when she has called herself stupid for forgetting something. She is not mad, she is not stupid....she is ill. She might behave in an evil way sometimes, ( and does regularly)she certainly can drive me potty, but she did these things before the illness too.
I know that there are people in all cultures who find the thought of mental illness to difficult to face, but it is a fact of life and refusing to acknowledge it is a far greater crime in my book than having a " daft" relative!
If the time comes that you think your input is not wanted, or that you are being driven out, you MUST report your concerns to the Social Services, using the words vulnerable, and elder abuse. Even if you cannot protect her, you need to be a voice for your Mum.
Keep posting and good luck.x.

I do not know how many times I have said to my father, your wife's brain does not work in the same way anymore. If she had a broken leg you would probably be more sympathetic. He just looks at me blankly. And then I find myself getting nasty and saying I hope this never happens to you dad because I will not support you.

I will report my concerns to social services. Very good advice.

 

[sweetmole]

In the last ten to fifteen years, Ireland has had such a huge amount of immigration, a lot from Eastern Europe, but many, many from Africa and Asia too. I do remember the question being raised in training classes several years ago, about care homes and residents of a different culture - or even day care centres. No conclusion was reached though, because so far, it just hasn't arisen. Yet, I see many quite elderly people among the Asian community here - always with younger relatives.

I do have maybe a little insight into the problems of one-culture care facilities though. I'm in Southern Ireland, which has always by tradition been Roman Catholic. My husband and I are not Catholic though - we aren't Protestant either. We fall into a very "minority" Christian group, and Wm was a Minister for all his adult life. Anyway, it was arranged for him to attend the local Alz. Soc. Day Centre one day a week. He went twice, and refused to go back - he hated it. And one of the problems was that they were saying prayers the days he was there, and they were Catholic prayers to Mary, and he was both unfamiliar with them, and would have been uncomfortable with them. But I could see that it would have been a very familiar and comforting ritual for the other clients at the Centre. So, the question is - how do we keep that comforting and familiar culture and yet make our Day Centres and Care Homes multi-cultural? And the problem of losing what would be a second language, and going back to the language of their youth is another one, isn't it? I was interviewed one time by a woman who wanted a home carer to live in with her mother, who had Dementia. She said her mother couldn't go to a Day Centre or a Nursing Home, as she was Swiss by birth, and as her Dementia had progressed, she had lost all her English, and reverted to her native language, and so couldn't communicate with people around her here anymore. I didn't take the job - I don't speak Swiss German, and don't do live-in work anyway.

Sweetmole, you have my sympathies and blessings as you proceed. Let us know how you are getting on. Once you cast your net out for information and support, you may (hopefully!) find that there is more out there than you know.

Thank you for your story. I am getting a wonderful education on this site. When mum was in hospital everyone, the doctors, nurses, catering staff all kept saying oh your mum's english is not very good. I would get so mad. All they had to say was speak english to us and she would have spoken. I know some people forget altogether but she is not at that stage yet.

 

[sweetmole]

Many cultures find "Madness" Dementia etc as a block on any future marraige prospects
and a taint on the family, and will try to hide away the person affected by it to the extent of sending them home, divorce etc. This does not apply only to "Imigrants"
John.

Wow never realised. Thanks.

 

[Onlyme]

Many cultures find "Madness" Dementia etc as a block on any future marraige prospects
and a taint on the family, and will try to hide away the person affected by it to the extent of sending them home, divorce etc. This does not apply only to "Imigrants"
John.

I was just going to post this. I am pretty sure that a relation of mine had dementia but it was hushed up. Things have been said about her and her mother being strange when they got older and forgetting things. The familiy closed ranks and they were just kept in the house as they were always said to be ill. No one talked about them and they were sponged from the records.

There are still some older relatives who dropped contact with Mum once they heard she had dementia. I might have well have said she had taken up prostitution by the silence it was met with.

In the book Jane Eyre they have the mad wife locked in the attic. The husband was tricked into marrying into a family that had madness in it and was never told.

Until 1990 anyone with a mental illness could be locked up and the family often washed their hands and pretended it had never happened. There was a lot of social sigma having someone with any mental illness - even post natal depression.

We no longer lock people up but we don't know how to react and feel uncomfortable around anyone we see as different.

I recently took my kids out somewhere and there was an elderly lady with her son. Before he could stop her she walked up to my teenagers and touched one's hair and then the others as they have very curly hair. Both kids stood still and waited for her to finish and move away. The son appologised but we shrugged it off as fine. I was so proud of my two that they didn't react and told them so. The eldest said they realised that she had probably got dementia and couldn't help it.

It is going to take a while but we will educate the next generation.

 

[21citrouilles]

I'm sorry that both your mother and you have to endure the situation as it is. It's heartbreaking... Whatever the culture, nobody should be hit. I hope that help will be possible for both of you.

Another culture that I know of, the Morrocans, don't put their elderly in Care Homes, as they feel it's the duty of the family to take care of them, and this duty falls to the daughters. It would be dishonour for them I think to act otherwise.

 

[meme]

Hi to you....I am not sure about home care which seems to be what you want for now....but if ever needed there are many nursing homes providing specialist Asian and dementia care..Farily new and easily googled,.in the south of England ,Yorkshire and in Staffordshire.. ., I believe one floor is for Asian residents with Gujarati/Punjabi and Hindi speaking staff.., vegetarian kitchen and a prayer room...There are other homes that provide well for Asians too. There was a tv programme recently showing an Asian care home and the love and care there between staff and residents...(possibly as the culture is very "elder friendly" and respectful) was heartwarming

 

[grove]

Hello & Welcome !

Sorry notn able to help about the Care Home question but just wanted to say hello & welcome to T Point & hope ypu find as Supportive , Helpful & friendly as I have done My Father has Dementia & lives with Mum ..... as we all live near each other try & help Parents as much as I can

Sounds like you are having lots of good advice all ready


Take care & please do not forget you need some me time as well ...... ( sorry to read about your unhelpful Brother not helping your Mum with Breakfast in Hospital )


Love & much support

Love Grove x x

 

[Kebuck2012]

Culture

Hello
I have what may be a rather bizarre topic to discuss.

So from the headline you will probably gather that my family is Asian. I just wanted to know if certain cultures treat dementia in different ways? Good and bad.

One of my aunts said that in our culture we have no word for 'dementia'. So you are either called normal or 'mad'!!!!!!!!!!!!!

I really detest this label and I know that people in my mum's 'former' circle of friends had been treating her badly and excluding her from social gatherings and so on. I used to think her increasingly argumentative nature was because she had few close friends and only had my dad, brother and me. But now clearly her brain doesn't work in the same way anymore.

So, does anyone know if the Asian community is like any other? My dad was reluctant to tell people she had been diagnosed. He said no people will take advantage. I screamed at him. I said people are doing that anyway. Being rude, excluding her, looking at her funny, not talking to her anymore, making fun of her odd behaviour. Seriously how worse could it get? My mum is so isolated.

I decided to start telling people myself when mum went into hospital recently and these same 'friends' were ringing the house and my mobile non stop to ask how she was. Yet not one person came for a cup of tea when she was out of hospital. I said to one Aunt I wanted to let you know that mum has been diagnosed with dementia. The reply 'oh yes I know'. And I thought well if you know then why do treat her like ****? I then realised that telling my mum's friends seemed to have little impact.

I asked my mum's Consultant how many Asian patients she has. She looked at me and said not many!!!!!!!!!!!!! HUH! How can this be?

This disease does not pick and choose which ethnicities to descend upon.

So, please anyone with some advice, knowledge, anything please reply. Are we under-educated, ignorant in this field? Or do we have parents with dementia left untreated and just at home. And no one talks about the changes in behaviour and care needs? I do not know any other relative, friend, friend of a friend who is in a care home, or has home care. Nothing?

Is it that different cultures will support sufferers differently, and perhaps not seek a diagnosis from the GP rather keeping things in the family. Families seem to stick together better, so there is a larger network... I am only speculating as a white guy, and would welcome input. I live with and care for my 86 year old mum who has a dementia, i sought help from locals and church but people are afraid of visiting incase they do or say something wrong. Bring back love and remove political correctness

 

[RSD]

Hi sweetmole,

I'm Asian (Sikh) and can relate to much of what you say. I think it would be fair to say that knowledge of dementia (what it is and what it means for the person concerned) in the Sikh community is sadly lacking, especially among the elder generation. I suspect its the same in the Hindu and Muslim communities.

My mother's Alzheimer's was diagnosed about 2 years ago and the response from friends and relatives has been mixed. Some have been unbelievably supportive and understanding while others have shown incredible ignorance and insensitivity. I've had several say that there's nothing wrong with my mother. Or, why haven't we asked the GP to give her something for it. Or, and this really beggars belief, one cousin who said he knew about these things and what we needed to do was feed her lemon pickle! Go figure. In short, lots of useless advice but no offer to do anything sensible like visiting her and just giving her the benefit of their company for an hour or two.

I've looked into care homes, and the only places which cater for Asians are, unsurprisingly, located in areas with high immigrant communities. We live in Hampshire and there is nothing available near us, but, when the time comes, I think proximity to where we live so that we can visit regularly and often, is more important than some of her other cultural needs. In the meantime, my wife and are I doing our best to look after her in our house (she moved in about a year ago). When we feel no longer able to cope, then we'll consider live-in care first before going down the care home route since the cost is about the same, and it would allow her to continue living in surroundings that she is familiar with. When the time comes though, I know that some of the same relatives who would feed her lemon pickle will criticise me heavily for "dumping" her in a care home and failing in my duty as a good son. I just take solace though from the fact that there are others (the ones who still come to visit) who will understand.

Since religion seems to play such a central part in the lives of many elderly Asians, I had hoped there might be more support available from the temples. Sadly there seems to be just as much ignorance amongst the people who run these places as there is in the general community. I suspect the mosques and mandirs will be the same.

I'm sorry you're having such a hard time with some of your family. What your mother needs is support and care from those around her and if she's not getting that then I would definitely look for external help, especially if you suspect she's at the receiving end of violence. Social Services would be the first point of call.

Good luck and hope it all works out. Happy to answer any questions you may have.

 

[Witzend]

I'm sorry that both your mother and you have to endure the situation as it is. It's heartbreaking... Whatever the culture, nobody should be hit. I hope that help will be possible for both of you.

Another culture that I know of, the Morrocans, don't put their elderly in Care Homes, as they feel it's the duty of the family to take care of them, and this duty falls to the daughters. It would be dishonour for them I think to act otherwise.

I guess it's all very well in cultures where you have a large extended family, with people always around to share the caring. It's a bit different here - families widely scattered, daughters needing to work to pay the bills, so much of it falling on just one person.

I have a Mediterranean-origin sister in law and years ago my BIL would go on about how wonderful her culture was at looking after their elderly, cleaning up their mess, etc. Fast forward to when FIl had dementia and his behaviour was becoming 'challenging' - my sister in law had him for a very short while, but that was absolutely it.
'Not one more DAY!' were her exact words, and I honestly can't say I blame her. She added that back home, such people would be heavily drugged to keep them docile. She was a trained nurse and I think she knew what she was talking about.

Also, FWIW, we have Indian friends (in India) and the wife's mother is very elderly, with dementia. They do not look after her themselves, she lives 100 miles or so from their home, still in her own home, but with a couple of live-in carers. Such things are of course relatively a lot cheaper to organise in India. Last time I saw them I said to the wife that we were often told in the UK that other cultures (especially perhaps the Asian) invariably look after their own elderly themselves - she said that's just not true, anyone who can afford it will employ a lot of help or use a nursing home. Of course there are many people who can't afford it and don't have any choice.

 

[PeggySmith]

Hi Everyone,

Slightly different focus here. We live in a small town whose population is almost exclusively white. My MIL has dementia and has carers coming in 4 times a day which is how I got to hear about the lady I'm going to describe - a bit because I don't have a lot of information.

She and her husband moved here when they retired. Possibly to be nearer family who don't appear to visit.
Husband died.
Lady has carers and may have dementia (carers wouldn't mention that and couldn't answer me if I asked).
Carers say she is "Indian"
At lunchtime she has a 1 hour visit to meet her special dietary needs. She says that widows in her religion/culture are not allowed to eat meat.
She directs the (white) carers to cook rice until its mushy and to fry vegetables with "seeds and stuff". When they're cooked, carers are instructed to add generous amounts of tomato ketchup.
The only other bit of information I have is that she's quite grumpy and critical.

I was hoping that if I could find out what religion she is that I could approach the community in Bristol for help but, I guess, RSD has pretty much closed the door on that one.

Is this likely to become more common, do you think? Anyone got any ideas about cooking a palatable (to her) but healthier meal?

 

[jaymor]

I know when I was on the internet finding more homes to look at quite a few of them listed several languages other than English that were spoken at the home. Most seemed to be Asian languages. I expect that it is the carers who are bilingual so being able to chat in their own language with a carer would be a real bonus.

Jay

 

[colinberry1]

Hi Sweetmole, well I think people are the same all over the world, it is money that make people different and changes the perception of the societies.

I believe it is all down to persona, some people can handle or shall I say willing to handle the situation with dementia, but some cannot cope in dealing with the dilemma.

I just wonder how did the working class cope in the Victorian era, I guess they must have had the same dilemma that Third World countries have today.

I guess it's no use of expecting too much from anyone in this situation you and your father find yourself in, the word travels fast through the family the reality is no one wants any of that type of responsibility. I guess years ago they were probably left to die, it was no use of the maid or butler turning up and telling his Lordship that they needed time off because their mother or father have dementia.

I will say it is a sad and heart-breaking road ahead, and even quite a lonely one.

 

[Witzend]

I just wonder how did the working class cope in the Victorian era, I guess they must have had the same dilemma that Third World countries have today.

I guess in both those cases the general incidence would be much lower, since so many people would be carried off by something or other before dementia could hit them, and even if they did get it there would not be the medical treatment to keep them alive through sundry infections and other potentially life-threatening conditions.

Not long ago I read a Victorian novel (an Arnold Bennett, I think it was Clayhanger - where he describes a case of dementia developing in a man who had been a powerful and active businessman. From the detail I would imagine Bennett must have seen it at first hand - in this case a fairly rapid decline and death.

 

[colinberry1]

I do not know how many times I have said to my father, your wife's brain does not work in the same way anymore. If she had a broken leg you would probably be more sympathetic. He just looks at me blankly. And then I find myself getting nasty and saying I hope this never happens to you dad because I will not support you.

Well I think that must have strike accord with your dad, it takes a lot of time and effort to come to terms with his situation it all depends on his persona, whether he has it in him to accept the responsibility that are set before him, God only knows, but you're lucky to be gifted with such love and understanding for your mum.

 

[colinberry1]

Not long ago I read a Victorian novel (an Arnold Bennett, I think it was Clayhanger - where he describes a case of dementia developing in a man who had been a powerful and active businessman. From the detail I would imagine Bennett must have seen it at first hand - in this case a fairly rapid decline and death.

I came across this article, quiet interesting.

Sent to the asylum: The Victorian women locked up because they were suffering from stress, post natal depression and anxiety

http://www.dailymail.co.uk/home/you...ing-stress-post-natal-depression-anxiety.html

 

[forgottenmyname]

Hi everyone!

Sweetmole, thanks for sharing your story

I totally understand your point of view and concerns about the abuse and humiliation going on in your family/friends circle. My story is so similar. I was born in Cuba. I've been in UK for 20 years, married to an English gent. But all my Cuban relatives live in Cuba. So far away from us here in UK. A month ago I traveled to Cuba to see my mum. After 3 years of only phone contact. Something in her words didn't sound coherent to me on the phone. Even tho my aunt kept sending me several emails. Reassuring me that my mum was fine. But I know my mum well. I knew in my heart that it wasn't the case. So I got there(4th Dic) and my aunt had already organized a psichiatrist without me being present. Or without me asking her to do so. Anyway, the results came positive for Alzheimer. But even tho my aunt was there at the time of diagnosis, even tho, I talked to the Dr about the diagnosis, etc. My aunt kept saying to the neighbours and the rest of my family that my mum was fine. I went very sad and angry. So frustrated because I only had 2 weeks holiday to be there for my mum. New emotional issues to cope with. It was overwhelming. Her house was filthy, hoarded with rubbish that mum picked from the street, mum was starving, really thin and confused. I stayed with her. Despite the fact that cockroaches were crawling all over the place, the stench, not running water, nothing to cook with, not food, nothing! But I refused to leave my mum alone. During the 8 days that followed I had several strong arguments with my aunt. The way she was trying to treat me. By shouting at me like she was shouting at my mum. Was totally unacceptable. So I snapped against such violence. Even tho I am a quiet/ soft nature person. I don't like people talking to me in that manner. She shouted at my mum while we were cleaning the flat. You didn't need to be an expert to realized that mum was very sick. The way mum spoke was childish and incoherent. But my aunt carried on insulting, shouting and humiliating my mum in front of me and others present. Calling her all the names she could find. The whole neighborhood could hear what my aunt was saying. There was a point when I couldn't stand it anymore and interrupted her by asking politely please don't keep doing this. Its very hurtful. Don't you see my mum is sick. Its not her speaking. Its the dementia. My aunt carried on and on. I felt powerless. Because in Cuba we don't have Social services or anyone we can call for help. Only the police. Sure I don't want to get the police involved and create more trauma to my poor mum. During the next days. My aunt was marching inside my mum's house clearing more stuff, she brought strangers to help her do this. Regardless of what my mum's feelings or mine's were. My aunt was taking advantage of the fact that I had my days counted in Cuba. And that I don't have the time to fix anything without her help in such a short period of time. And because no one else in my family(despite the fact that mum has several brothers and sisters) Was willing to help her. Or look after her. In Cuba we don't have any services that protect the elderly people from violence. The stigma and humiliation my mum is enduring while I am here in UK. Is totally killing me. I feel guilty to have to leave her with such people like my aunt. But I've taken my first steps. And I am getting to know more about Alzheimer. And talking to people in this forum certainly helps a lot. Because I haven't being able to talk about this with anyone else. Not even my husband. The whole situation is harming me. I cant sleep properly. I am not eating properly. I cannot function as a mother to my dear daughter. I am just trying to find a solution to my mum's health issues. But I cannot find peace of mind. I feel totally alone at this point. If I keep crying I will dehydrate. It helps a little. Any advise, suggestion as little as you think it may be. Can be of great help to me and my mum. Please. Thank you.
Apologies about my English language grammar mistakes.

 

[colinberry1]

Hi forgottenmyname, well there is no answers to this solution only responsibilities to whom that are prepare to succumb. Cuba is quite a close community and strong family ties, so it just goes to show you that dementia still to the majority is something totally confusing and difficult to accept.

Hopefully the Internet might educate the majority in the world who are caring and prepare to sacrifice some time on the net to educate themselves about this problem that eventually may happen to all of us, but you know what people are like they always think it will never happen to them, but I'm sure it is going to be an extremely slow process.

As for your auntie, you have to remember she is the only one who have stepped forward and prepared to lend some help that is what matters, it is no use trying to judge her ability to comprehend this situation the only thing that matters who stepped forward to help, any help is better than no help.

But if you are determined to do more for your mum you can try to gather information over here on the possibilities of bringing her over on compassionate grounds. But I'm sure you are going to have to succumb to some difficulties, as the society will see it that it would be additional stress on the existing system over here.

Sadly our society are not prepared to accept or interact with people who have dementia, I was also an antique collector and dealer previously you could always see us on cash in the attic, but the dealers at the auction house I used to visit, don't seem to be able to accept people with dementia amongst them, I was told by a prominent dealer in one of my favourite auction house that he did not understand why I brought my wife there, so I had to stop going because it's clear that she was posing a problem to them. Well she was all so posing a huge problem to me, but I was prepared to succumb to all the difficulties that occurred believe me there is a huge amount to deal with, but after all she is my wife that I promise to take care of till death do us part.

 

[Navara]

If you are a young Asian then I would urge you to make a lot of noise to your local authority about lack of/need for provision for people with dementia in your community. The road to change has to start somewhere.