Asian Families and Dementia

[Witzend]

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

Yes, it was all too easy to have someone put away in those days. Wilkie Collins' book 'The Woman In White' was all about inconvenient women being locked up in asylums, either because they 'knew something' or because the husband wanted to get his hands on a wife's money. It caused a massive sensation when it came out, sold vast numbers, has never been out of print and is still a pretty riveting read.

 

[forgottenmyname]

Thanks colinberry1

Thanks a lot colinberry for your advise. Really great help to me. I agree that my aunt is the only one that stepped forward. But that doesnt give her any right to mistreat my mum or me. Specially I didn't ask her for any help at all. For some reasons that I had yet to discover and they will come out to light in the future(I am sure) She's just appeared out of the blue. I do really appreciate help from anyone close to mum, that seems honest and humble. But this is not the case with my aunt. I am not happy at all with the situation as it is. I want the best for my mum. When I say the best I mean. Serenity and peace. And lots of love. I am learning a lot in this forum. Trying to gather as much information as I can to help my mum. The isolation doesn't help as you said in your message and talked dearly about your wife. We have to include them in every aspect of our lives. Even if that means fighting prejudices and ignorance towards this illness. About my mum coming to UK. That's not a choice for us. Even tho she's got the legal right to stay for longer periods of time with us and visit as many times as she wants. She has only visited me in UK once, many years ago. She loved it! But my mum is too attached to her home and country. It will completely kill her to live elsewhere. If anything. I am the one that has to move there to look after her. Happy to do so. But I need to get ready and prepared. It wont happen overnight. I stopped crying now. Thanks God for that! I am acting upon this with all my strength. By learning and reading and talking to people about it. Incredibly there are lots of people in similar situations in UK that can help in many ways. So I am in the right place. I would never, ever, give up on my mother. Its not about duty or sacrifice(I've got a brother that doesnt care) For me its about love. I love my mum so much. For the moment the majority of Cuban Citizens dont have acces to the Internet, so they dont know what's going on inside or outside Cuba, most of the time. You find out about news by words of mouth. If you are lucky enough. That's why the Regime hasnt changed for ages(54 years). Its the perfect and most represive form of ruling. Keep them blind and they wont see. Keep the deaf and they wont hear. Keep the scared and they wont talk. Ok all the best for the future. Lets keep these talks alive! Thanks again for your time.

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.

 

[sweetmole]

Hello
I am glad to see stories that everyone has shared.

It is very sad how communities react or don't react. Everynight I shed a few tears at the lack of community support.

I went to my corner shop recently and the guy was asking what was wrong with my mum and I told him. Then he went on to say yes I do understand but my customers don't. Your mum comes in here and wants to touch the children. It may upset my customers.

I just didn't know what to say. We have lived here since 1985 and have used that shop since then albeit new owners. What do you do. What do you say?

I was hacked off really

 

[Superwoman!Not!]

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?

Hi sweetmole,

I am also Sikh and care for my mum who has early onset Alzheimer's and she is only 61!
Yes the Indian community are not accepting of any mental health illness. They refer to these illnesses as madness! My mum has lost all her so called friends and family are only concerned from afar. My own brother has decided thT he can not deal with mum and has stayed away for the last 6 months. My mum was diagnosed 2 and half years ago and is declining too rapidly. It took 1 and a half years to get the diagnosis. Because of her young age, it was thought that she had depression. I did not give up and insisted that her memory was failing her and made sure all tests where done. That in itself was hard as my mum didn't understand all the questions and they got a translator ( which delayed the process) and finally we got there. I look after my mum at him with my dad and other brother with my toddler. My mums family are in another country and did not accept her illness. My dad took her over there and because there are days where she seems fine they thought she will get better. My dad is very good and tells everyone that she has Alzheimer's and tells them how tough it can be. As do I.
My frustration at the moment is there are no places that I can take my mum where she can sit and talk to other Asian ladies. My mum is traditional and don't want to do puzzles and crosswords. She was a housewife and liked to cook, clean and take care of her family. I want to get fellow Asians together to form a group and perhaps open our own day centre. Since my mums diagnosis, people have been more open to talk to my dad about their own experiences with Alzheimer's and my dad has realised that this illness is common in our culture but never talked about.
We need to talk about it and I have a Facebook page where I write about my mum.
I am here if you ever need to talk and/or need advice.
Sorry I may have gone on a bit.

 

[BR_ANA]

Hello
I am glad to see stories that everyone has shared.

It is very sad how communities react or don't react. Everynight I shed a few tears at the lack of community support.

I went to my corner shop recently and the guy was asking what was wrong with my mum and I told him. Then he went on to say yes I do understand but my customers don't. Your mum comes in here and wants to touch the children. It may upset my customers.

I just didn't know what to say. We have lived here since 1985 and have used that shop since then albeit new owners. What do you do. What do you say?

I was hacked off really

If your mother goes shopping with someone I would print a card saying
" mother has serious non transmissible neurological disease. If she disturbed you I apologise. "
On pocket, then if you noticed that someone become distressed, or before, give the card.

Btw, I live on Brazil, I just asked the most gossip people of neighbourhood to spread the news. "Neurological disease" and " bully daughter will turn your life in hell if you do anything bad to her mother". And I keep always someone with mom. She complained about lost of freedom but she enjoyed company.

 

[keegan2]

Hi, I am sikh and my O/H has alzheimer's. I know what you are all saying about asian ignorance. When I took O/H to India his own mother said I should give him more milk it would make his memory better. She never rings to find out how he is nor do other family members from back home (mind you it might have something to do with me not sending any money back home for them, my needs are now greater than theirs now. Also I have no time for anyone who has none for us).

 

[Earthangel]

Hi sweetmole,

I am also Sikh and care for my mum who has early onset Alzheimer's and she is only 61!
Yes the Indian community are not accepting of any mental health illness. They refer to these illnesses as madness! My mum has lost all her so called friends and family are only concerned from afar. My own brother has decided thT he can not deal with mum and has stayed away for the last 6 months. My mum was diagnosed 2 and half years ago and is declining too rapidly. It took 1 and a half years to get the diagnosis. Because of her young age, it was thought that she had depression. I did not give up and insisted that her memory was failing her and made sure all tests where done. That in itself was hard as my mum didn't understand all the questions and they got a translator ( which delayed the process) and finally we got there. I look after my mum at him with my dad and other brother with my toddler. My mums family are in another country and did not accept her illness. My dad took her over there and because there are days where she seems fine they thought she will get better. My dad is very good and tells everyone that she has Alzheimer's and tells them how tough it can be. As do I.
My frustration at the moment is there are no places that I can take my mum where she can sit and talk to other Asian ladies. My mum is traditional and don't want to do puzzles and crosswords. She was a housewife and liked to cook, clean and take care of her family. I want to get fellow Asians together to form a group and perhaps open our own day centre. Since my mums diagnosis, people have been more open to talk to my dad about their own experiences with Alzheimer's and my dad has realised that this illness is common in our culture but never talked about.
We need to talk about it and I have a Facebook page where I write about my mum.
I am here if you ever need to talk and/or need advice.
Sorry I may have gone on a bit.

Hi, Unfortunately, I think your religion, creed etc.... doesn't make any difference. For years people are so unaccepting of Mental Illnesses and treat people as second class citizens. Mum was a devoted church going person, was church of England, but high church, our priest doesn't belief in woman priests, so gone Catholic. Mum can't understand why no one speaks to her, sniggers behind her back and no one offers to come and visit her, or take her to church. Even the Church Wardens behaviour was disgusting. Basically, people are ignorant of dementia and until you have looked after someone with dementia, I think we are ignorant too..... Just done the Dementia Friends course, recommend to everyone, should be taught to children as well.

 

[LadyA]

" bully daughter will turn your life in hell if you do anything bad to her mother". And I keep always someone with mom. She complained about lost of freedom but she enjoyed company.

Br_Ana - I like your style!