Mom's illness and relationship breadkown

petals

Registered User
Jan 20, 2012
16
0
I have watched the relationship with my siblings fall apart since mom's diagnosis 4yrs ago. Living in the UK and my mom being abroad has not helped although I travel every year to africa to visit her and my seriously dad. One of the siblings who live over there stopped communicating with all of us and we do not have a clue why. We all contribute financialy to their care, carer's salary and expensive medicines. My sister has broken silence only now using e-mails to communicate and instruct the carers not to update us on mom's health and at times disconnecting the house phone so that we have no access. She has told us the parents have to be rotated every 6 or 12months to be looked after by their children. This means that they have to be brought to England. When we protested about this plan, we were remanded that we are not from here anyway, we belong down there in africa. My father is disabled from stroke, mom is even confused in her house where she has lived for over 10yrs. How can they manage the weather, the long 11hr flight, immigration control, private care if they become ill here, house with stairs? I am so horrified but I had to tell that I will bring them over to prove the point. She is settling old scores and does not care what it will mean for the parents. Parents are very happy over there and have 3carers taking care of them in a very nice big house.She only visits once a week and spends few days. I am grateful for the job she has done and have always thanked her. We have been told not to thank her but rotate the parents. I think she beleives that we have not contributed as much as she wants, but she has never complained before. She now says to us' I pay the helpers and I control them and instruct them not to talk or share information with people from London'. When I have visited mom, I have to stay in a hotel near the house because she made it clear few yrs ago that since she bought the house for the parents, she decides who comes there and from the last treatment I am not welcomed. This experience has been so humiliating for the rest of the siblings. I have to bring at least mom here so that I can spend 6months caring for her. I feel guilty everyday because I am not with her and other siblings even the one in africa can't visit. Every day I contact her house, I go through this nonsese where I cannot ask what is going on when mom is distresed beause the cares are scared they might loose thei jobs if they spoke to me. I am sorry I have to have a moan, I miss mom and very angry with this illness.
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
This is a particularly difficult situation - I am so very sorry. I have had a couple of friends in this position and they have done everything they can to keep their relatives in their homes (Jamaica in both cases.) The climate - the neighbours - the extended family - and of course home itself - were all thought to be important- And also of course care is less expensive. Though they did find it hard to ensure that their relatives were always getting what had been paid for.
One idea - is whether it is possible for you to give your siblings a break by taking an extended stay with your parents yourself. (Though I realise jobs and family in the uk can make that impossible.) Or if you cannot go, perhaps someone can go as your 'ambassador' or representative and take responsibility on your behalf?
I don't know if your siblings know how different the uk would be for your parents - but the isolation would be alien to put it mildly.
There might be social/charitable/religious organisations that the embassy knows of that are familiar with this problem? Because I know it is a common problem within some communities.
Very best of luck
 

Onlyme

Registered User
Apr 5, 2010
4,992
0
UK
Just a thought but is the sibling in financial trouble, can no longer fund the care and has to sell the house? If the parents are going to be moved every 6 months then there won't be a need for their house.

Siblings are just something else we all have to cope with as they have no idea and make useless comments. I think mine come from a different planet.:rolleyes:
 

longgoodbye

Registered User
Nov 23, 2011
60
0
This sounds very difficult. It sounds like something may have changed, perhaps with your non-communicative sister's personal life? Since she now wants you and the other siblings to be involved with your parents' care by everyone taking their turn to house them, could you use this as an opportunity to have a family discussion with everyone included? Even if it's just a group email conversation. To put it bluntly, the sister can't make this idea of hers work without communicating with you all. This could also be an opportunity to deal with the "no updates to London" issue as without being told the details of your parents' day to day lives you can't possibly be expected to know enough about their routine etc to be able to look after them.

Good luck
 

petals

Registered User
Jan 20, 2012
16
0
Thanks for the words of support and advice.In this situation, there are no financial difficulties for parents back home.My sister bought the house for the parents but iti is actually hers. She is doing well financially and has never lived in this house. All what she does is monitor helpers and pay for everything.Before her involvement, my twin sister who is a medical doctor paid everything but was so good because she encouraged all of us to be involved and contribute what we could afford. She is in south africa herself but a different town. Mom's illness has affected her so much that she never calls that much nor visit her. I know that she can't cope seeing mom's deterioration and comes with any excuse not to visit or even ring from her mobile to talk to her. She hates conflict and will run a mile from it.We are communicating using e-mails but this sister responds when she feels like. I agree that something is happening in her personal life.We have cornered her by telling her that we will have the parents and there has been silence from her. We have offered to pay for everything and begged her to let the parents live in her house but she rejected that option.I volunteered to spend 3months looking after mom and making sure whilst doing the care I stay in a hotel nearby, that was rejected. She does not look after the parents anyway-she oversees their care. I spend a month two months ago doing the proper care and not relying on the carers. Uk will be too expensive and they will not get the care that they are used to. I will be ruined financially because they are overseas visitors. They will be private patients. I do not have a mansion or a bangalow. My sister studied and lived in the UK and she knows the system. She wants to punish the two sisters in the UK by seeing us in financial ruin. This is a bullying tactic and she is using her financial power to make us suffer. I have tried to call her on her phone, she cuts it when she realizes that it is me. Unfortunately mom is sort of aware and she gets very upset and insists that we have a meeting to resolve this issue. She was a strong woman who held us together, Since her illness, we have crumbled and when she has gone, I will have nothing to do with my sister and the country. I just dread the death of any of my parents because we will not be in the same roomwith her or she will avoid us. How are we going to plan their funerals when we cannot agree on anything whilst they are still living?
 
I wonder whether your parents will be able to get visas to come to the UK? If they are SA citizens and living in SA then they need a visa, and at http://www.ukba.homeoffice.gov.uk/visas-immigration/visiting/family/requirements/, the section on family visitors, it says things like:

"You must be able to show that, during your visit, you do not intend to:
...
receive private medical treatment."

(If they are receiving ongoing medical treatment at present, and will not be eligible for NHS treatment here, this might be a hurdle)

and

"You must also be able to show that:
...
you have enough money to support and accommodate yourself without working or help from public funds, or you and any dependants will be supported and accommodated by relatives or friends;"

If you and your household do not have the accommodation and the money to support them while they are here (you would be asked to fill in a form about it all, your household finances and number of rooms etc, I think), then it may not be possible for them to get a visa. Worth looking into.

On a different tack, is there any other family member - an aunt or whatever - who could try to mediate between the family? Are your parents and sister church-goers where minister could help?

It seems a desperate situation, and the idea of moving a dementia sufferer around every 6 months, with seriously long flights at times, seems just plain cruel - not to mention problems of getting travel insurance, will the airline take Mum as passenger, etc etc.

I wish I could think of more ways forward for you.

I hope things work out for you, somehow or other. Pam
 
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Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
Why not look into moving your mum into a care home in SA? That then takes the power out of your sister's hands.

Perhaps this is something positive your twin sister could do to help as she's over there.
 

petals

Registered User
Jan 20, 2012
16
0
I must say thank you so much to the members from the forum who are total strangers but have given me so much support. I have been so scared and embarrassed to join the forum as I thought I will be disloyal to my family by washing the dirty laundry in public. This experience today, the first time I have done it, to be so therapeutic. It is okay to talk to people and I feel so much better. The ideas have been brilliant and some of them have been tried before.In response to the suggestions: We have relatives and an aunt who is aware of what is happening. She is the only one who has a close relationship with this sister of mine. She goes to church but she is scared of telling my sister what she is doing is wrong or try to be a mediator. My sister is using her money to control them and they depend on her. If my aunt challenged her, that will be the end of financial help and the car taken from her. She is too weak to stand up to her. There is no way we can put the parents in a home. I understand that she can loose the power if we took that decision, she will remove them from there anyway and our culture does not encourage relatives to go into a home. We can renovate their own houses and put them back there but that will be too costly. My twin sister has a big house and where there are, the house is just for them and is also very big. But as I stated earlier, my sister owns it and she is the boss. All that needs to happen is my twin sister coming to terms with mom's illness by meeting with her and getting used to a different mom. Once she has dealt with those emotions, she can have both of them in her house; All what we do is pay people to do the work and we can afford that and that is what we do right now. My parents are supposed to be so lucky that they have their children who are educated and can afford to give them a lifestyle the majority of people in south africa can only dream of. Look at what has happened to us?Money and power is used as a weapon instead of looking at the needs of the parents especially mom.I laugh at times when I think this illness has changed us as people. Mom was a well educated, well travelled business woman who ensured that her children achieved the same level of education even higher, will end up failing to work, together. In this crazy sibling group, there are doctors. psychologists, policy makers,lawyers and business women. Maybe this is the problem, too many people with strong views.

The immigration advice and the link was very helpful.This the option we are left with and I will pursue it. If they are refused the visa, then my twin sister has to take both of them. This evening when I phoned home, one of the helpers told me that mom had been flown to another city for a review or assessment. Again my sister does not involve us in any decision and we will not be told about the outcome as she thinks it has nothing to do with us. I would like to keep you updated and we are hoping 2012 will be a turning point in this long family feud. I thank you all for your support.
 

Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
Maybe you play nasty sister (NS) at her own game and suggest the first move on the 'rotation plan' for your parents isn't over to the UK but to your twin sister's (TS) house ;) ;) "just to see if they settle with moving about before attempting a long flight"?

Once they're out of NS's care into that of TS, perhaps you will be able to decide what you want to do longer term.
 

hollycat

Registered User
Nov 20, 2011
1,349
0
You said our culture does not encourage relatives to go into a home

I would be frightened to death of bringing an elderly, sick person to the UK on a visa for 6 months.

WHAT IF your mum's mental state seriously deteriorates while she is here in the UK ?
What would happen ?

I have absolutely no experience of becoming ill in a foreign country, but how on earth would you cope as a family if mum was detained, for example, under the mental health system in the UK ?

How would you feel as a family if mum was placed in a mental institution and/or care home in the UK ?

Sorry to have such a negative view towards it, but to me,it seems a crazy idea to even contemplate bringing mum to the UK.
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
I wonder if your sister realizes that your parents would not be entitled to NHS medical care? At least, not until they had been ordinarily resident for 6 months (I think it is). I'm a british citizen but because I'm resident in the US even I'm not covered when I come back for visits. And the chances of them being able to get medical insurance with their pre-existing conditions is slim to none.
 

petals

Registered User
Jan 20, 2012
16
0
I agree with all your views. I do not want mom to be sectioned should her condition deteriorates within the rotation time in the UK. I know that as a visitor she has to be a private patient and my sister knows that too. I also know that they may not get medical insurance especially my dad who has been closed to death so many times. The long flight will kill him.Although momi's still physically fit at 70, the dementia is beginning to progress much faster now and the aricept is not having much effect. My twin will save the day and I agree, the rotation starting with her will change the situation drastically because they will both remain in SA and continue being supported. I do not think whether they are in their home city matters now because they are both not well. Spending time with their children will make them happy.I will not wish this experience on my enemy.It is a truth that grief or loss can bring families together or it can pull them apart. I feel that members have lifted me from the dark hole and I will hold onto these ideas which I have found to be comforting.
I feel so much better now having shared with you my pain. You have lifted me up
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Actually it did occur to me that this might play out this way: your parents get a visa, turn up at the UK airport but are then refused leave to enter on the basis of their health. It can happen, and since there might legitimately be a concern that these people are being brought to this country so that they can benefit from the social care safety net (even though you know this isn't true), it wouldn't surprise me if this happened. Particularly when dementia is in the mix since this is one of the few situations (being detained for psychiatric reasons) where NHS care would be provided.
 

hollycat

Registered User
Nov 20, 2011
1,349
0
Hi petals

Thanks for sharing your unusual circumstances.

We all think we have problems, till we read one like yours......a bit of a complicated one.

I wish you all the luck in the world

Kindest regards

x x x
 

longgoodbye

Registered User
Nov 23, 2011
60
0
Hello Petals

I hope that you continue to post here. Sometimes just writing things down helps sort it out in your head a little and makes the situation clearer.

I suspect that at the moment part of your difficulty is that you don't have enough information - not just about your parents' health and daily needs - but also about options that are open to you. Remember there are helplines that you can turn to as well as these forums, maybe the Alzheimer's Society's phone line or Help the Aged or even the Citizen's Advice Bureau or a government department like the Foreign Office or Immigration would be able to give you some information on what's involved with non-UK citizens coming here for a long holiday in terms of visas, medical bills, being fit for travel etc. Getting more info about the logistics and consequences while here could help make it clear to Controlling Sister / Sister in Crisis that coming to the UK would be more hassle than she thought or even impossible. Existing medication they're on could be controlled here and prescription refills could be difficult or impossible to obtain, for example. You could present the info in terms of "To bring mum and dad to the UK we need to do A, B, C and be aware of X, Y, Z. Let's look at how to deal with those things before making any plans."

It counds like the initial move will be to Twin Sister within SA anyway which could be the first step to being an improvement to everyone's situation.

Thinking about Controlling Sister, it does sound like she is quite conflicted and I think there's something in there that many carers can identify with. Sometimes it's difficult to imagine that anyone else understands the situation or can provide what's needed as well as we can, and so even though we're almost drowning it's easier to keep going than to hand over to someone else (and later pick up the pieces when it falls apart.) I do think your sister - for all her faults - may be making a cry for help. What she's suggesting is so ridiculous - take the parents but don't talk to me about the parents - that she may feel overwhelmed. I know she oversees care rather than providing it but that responsibility may be quite stressful too. Just a thought.

Keep posting!
 

Butter

Registered User
Jan 19, 2012
6,737
0
NeverNeverLand
Reading everything you have said: your mother wants you all to have a meeting to try and sort this out? Just because she has dementia, it does not mean she is stupid - so maybe her wisdom is right?
I do wish you all the best.
 

petals

Registered User
Jan 20, 2012
16
0
Thanks again to everyone who has given me support and advice. I have considered all the ideas and some of the things said I totaly agree with. Since we wrote to our sister about three weeks agreeing to this so called rotation of hers, she has not responded. I think she is stuck because she will loose the power that she had over the parents. If mom or dad managed to come over here for the visit, she will not be able to get in touch with them herself. We will do the oppsite of what she does with the phone control, and encourage her to call, but sjh won't have the guts to face us.
I think she has been cornered and has no way to go.
The sad thing about the communication is that the helpers are not supposed to talk to us when we ring, they allow the phone to ring until it registeres in mom,s head that the phone has to picked up. She has answered it and sometimes she is so confused when she hears my voice and I get upset because I cannot talk to the carer to find out how she has been or what might have upset her. When I say bye mom, the phone is still on because she has not understood that she needs to put it down. Mom cries for help and I will hear her in the background say 'I do not know how this thing works ', meaning the phone, the helper is to scared to intervene because the instructions are 'Pass on the phone and say nothing to the London people'.
Now I have to call the carer when she is off duty and get information about what is happening in the house with the parents. Although my sister does not stay there all the time, she has put one other carer to be a police officer and will report if the other is heard talking to me. I do not want her to loose her job so Itell her to do what she is told. If I need information, she will text me or I will call her when she is off duty.
How petty and cruel can this get. When mom comes back from this assessment in Jo'burg, I do not expect to get the feedback and I cannot dare ask. If I did which I will never do anyway, it will be I paid for it so I decicide what happens to them. I call SA everyday because it is important to hear mom's voice and to check how she is everyday. The conversation usually last for a minute and is uasually the same, how are you, I miss you and I love very much. Mom loves to hear my voice and my dad too even his speech is not clear. This is so important to them. The process of doing this is so humiliating for me because it is like I am following this stupid and cruel rules. My other sisters refuse to talk whilst this order is in place. We have to be grateful that she re-instated the phone after disconnecting because she thought we were asking the carers too many questions about the parents and refusing to follow her rules which are: She decides what happens with the parents whilst they are under her care. What is it that we need to be talking to them about anyway, she says. I am convinced that something has happened in her personal life that has made her become this person or she is plain cruel. If she knew that we have support from this lady carer, her job will be over. We are so protective of her and grateful for the difficult work that she has to do. I thank her wheneverI can sneak in those words when the other carer is off or when she is the only one with the parents in the house. She also has been told never to accept any gifts from us, I buy her things anyway and use a different address to send them. My sister does not know. If people are doing a good job, reward them. They do not get lots of money for what they are doing anyway, so I help especially if I know that they are devoted to my parents. It keeps them happy and they appreciate the support and words of encouragement.
 

longgoodbye

Registered User
Nov 23, 2011
60
0
Just an idea

Right this is just an idea, but after reading your last message I would like to put this forward (particularly in case the care rotation doesn't happen as it sounds like even rotating within SA may not happen):

(1) Your relationship with controlling sister (CS) is so poor that really, whatever you do it cannot get any worse. The issue of phone disconnection aside, what can she do? And to be honest it doesn't sound like the phone calls you are having with your parents are particularly happy for either party. So nothing you can do will make the situation worse. (And anyway it's not you making it worse, it's CS who chooses to make things worse.)

(2) You are concerned about your parents and no-one in SA is allowed to or chooses to give you the information you need to set your mind at rest that your parents are being cared for adequately.

(1) + (2) = Ask anyone you can to become involved in investigating or monitoring their situation. I don't know the SA equivalent but options here would include friends / family / neighbours / voluntary organisations / official organisations like SW. SW having a legal obligation to investigate concerns about vulnerable people.

I do not wish to worry you but your posts suggest you are very concerned already, I'm just responding to the things you've already written rather than imagining there's any more to it.
 

petals

Registered User
Jan 20, 2012
16
0
Longgoodbye

Thanks for the suggestions. I am very confident that the parents are cared for very well. Despite my sister behaviour towards the rest of us, she has done an excellent job and she ensures that the care that they receives is of a very high standard.As stated in the earlier posting, she has taken mom to her own house in another town, organizing a flight accompanied by a carer for a review medical appointment. I will not fault her on that. When it comes to the siblings, the treatment has been shocking. Whilst she thinks she is punishing us, it is affecting the parents especially mom who feels helpless.The parents are not fully aware of what is going on, because it is happening behind the scenes. They maybe moved around and their situations may be stabilizing for them, why when they have been so happy and are denied without knowing about it that some of the siblings are not getting in touch with them or visiting theri house or should I call it now, my sister's house because of my sister's hostility. When I thought it will be okay last november to be in their house to take of them, I was again humiliated, being told clear that I should not use the house as a hotel. I had to leave with my parents begging me to stay. Any support of training I offered to the carers was criticised even though she never spoke to me directly, it is always via the helpers. She barked and screamed and never came to the town whilst I was there. I can tell you that I enjoyed every single moment I spent with my parents and my mom was at her happiest. I cooked, cleaned, bathed them both. I had so much energy I do not know where it came from.The carers were withdrawn or instructed not to help me at all. I used to get to the house at 4.30am, cook all the meals for the day. By the time the carers came on duty, I had done everything and had enough time to take mom to the shopping centre for nice breakfast and a trip to the beach. I think she had forgotten that in the UK, there are no helpers who cook, clean and wash clothes everyday. I am used to it but she is not because the priveleged people have helpers who do everything for them.I will keep calling SA everyday and intend to see my parents somewhere in SA or you never know England.