Why do we have siblings who won't help?

Helly68

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Mar 12, 2018
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I think my take on the issue of "invisibles" is rather different.
My sister lives, with her husband and children, abroad, so very much not wanting to be invisible, but as @jugglingmum says, you need hands on deck.Hard to do if you are not in the same country.
My sister and I get on very well, but we both had quite complex relationships with both our parents - even before dementia. She visits regularly, but much of the practical stuff, bills, appointments etc is a lot eaiser done by someone in the same country. Also, many things outside the narrow confines of my fathers current life (my mother had mixed dementia, my father now has early memory loss) require me to supervise, arrange and drive him.
I think my sister is very aware of the commitment, and we both fear for the future. I don't have children, so for me, I think it is easier, though I do have a disability, so if physical care is needed, I probably cannot do that. I know she worries about me. we both feel guilt......I am sure all of this is very familiar.
I think our lives now are complicated and the cost of living makes family caring very difficult - who can afford to give up work? I think those who look at caring as "womens work" are of a different generation - in their actual age and outlook. Lots of issues, not many answers.
 

Duggies-girl

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Sep 6, 2017
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@Wildwoodflower my brother was always 'the golden child' and he has always acted as superior to me. He believes he has worked harder and done better than most people, he hasn't. In fact if he hadn't had many hand outs from our parents when he first married then he would not be where he is today. My parents even paid the deposit on his first house to get him, his wife and new baby out of an unsuitable flat. I didn't get these handouts because I worked hard and supported myself and my husband and I saved hard for our deposit. This was almost forty years ago.

My brother lived around the corner to his parents and rarely visited them and he was always on his way somewhere else. He just couldn't give them any time, my mum called him 'the minute man' because he always said 'I can only stay a minute' and off he would go. When dad needed help I had to drive over town and back twice a day and sometimes stay over, my brother on the other hand was always busy and often on holiday.

My brother said he would do anything to keep dad out of a care home (thinking money here) but truth was he did very little. I was unimportant as I had given up work to look after dad who was not ready for a care home but was unable to care for himself on a daily basis so it all fell to me. My dad was a lovely man and a good dad and he needed help. my brother would have left him sitting in his chair until he faded away given the chance.

My brothers wife is a major factor in my brothers indifference, she has some kind of personality disorder in that she needs continual attention from my brother, their children and anyone else in the vicinity. She needs to be constantly showered with love and if she doesn't get everything she wants then she is liable to get upset and 'throw a wobbler' so I do have a little sympathy with my brother because she is hard to deal with and probably very hard to live with. She doesn't like me because I don't pay her much attention and never have. I just can't deal with all the drama that surrounds her.

This doesn't explain my brothers attitude to my parents though because they were always very good to her and treated her like one of their own although they knew what she was like. I could not have put up with what my mum put up with but mum always kept a smile on her face and welcomed her like a daughter.

Funny thing was that these two people who could never spend more than a couple of minutes in my dads house were in there the day after he died clearing drawers and throwing stuff out as fast as possible until I stopped them. They then decided that dad's place would be ideal for them and promptly bought me out with their share of the inheritance. They could never have done that if mum and dad had not financed their early years and now they have the home that they dreamed of.

I don't see them anymore and I don't miss them either.
 

MaNaAk

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Jun 19, 2016
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There seems to be a lot of denial in these situations but invisible siblings seem to use this to their advantage, i.e. if I deny there's an issue then I don't have to do anything.

Is it simply that they really don't want to do it? I'm sure most of us have strategies for getting out of things we don't want to do! (I know I do...) Looking after a person with dementia is immensely hard work and sometimes very difficult and/or upsetting. I didn't want to do it. I didn't have to do any hands-on stuff because mum went from home, to hospital then straight to a care home. I only have a small house so she couldn't have come here, but even if I owned a mansion I wouldn't have invited her to live with me. We've never had a good relationship or been close so it would not have worked. My brother has 2 spare rooms though and I don't recall him offering. But I didn't expect him to do anything I wouldn't do so that was fine...

In trying to understand, I've been thinking how I would have felt if the decision had been made to put mum in a home near him rather than near me. Would I have minded? Would I have been grateful? Would I have been relieved to get out of the responsibility? The answers are that no, I would not have minded. I'm afraid I had no wish to look after mum and did so out of duty really, and because 'somebody' had to do it! But what occurs to me most is that I would not have had a clue about what it means to visit a PWD every week for 3 years, the responsibility, the feeling of being on edge and waiting for a phone call all the time. I would not have understood the constant worry or the actual trauma of visiting a care home full of very sick people and seeing our mum deteriorate every week. (And getting all the grief/anger/blame from mum!)

When I think of it this way, I can actually see why brother just didn't 'get it'. Unless you are there and doing it yourself, you really don't understand what it's like. Then your invisible makes a rare flying visit and tells you, 'She seemed OK to me...' Aaaaarrrrgggghhhhhh!
My eldest brother, who made three visits in the year of diagnosis, only saw dad in host mode until his Alzheimers became severe.

MaNaAk
 

Muttimuggle

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Dec 28, 2021
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Does your sibling (or siblings) help with the care of your parent(s) with dementia?
Mine refuses to do anything to help beyond making a call to our mum one a week and sending her a hamper at Xmas.
There's no good reason for him not to help. He's very wealthy and semi-retired and with time on his hands for holidays and leisure pursuits aplenty. He lives in another country, but could easily be here, at the door, in three hours. Yet he hasn't seen our mother in years.
When I asked him directly to help so as to give me a break, he bluntly refused and threatened to make things difficult with mum's will when the time comes if I asked him again.
Of course, she dotes on him and has a million excuses for why he is absent.
Now, by any measure this makes him a pretty awful person and to be fair, he always has been, When we were children he was a bully. I have wondered were he to present himself, if he would meet the criteria for a diagnosis antisocial personality disorder or what is more commonly termed a sociopath. It's not that rare, around one in 33 men could meet those criteria.
Yet reading these boards it is clear that he is hardly unique and the number of siblings who refuse to help are far greater than the likely number of sociopaths. I went looking for academic research that might shed a little more light on why siblings refuse to help with care so often. There's not very much out there. Sibling relationships are very poorly researched compared to parental relationships.
It has set me wondering. When one child becomes the main carer:
- is it actually more common for other siblings to avoid helping than for them to help?
- how can this be explained? Could it be that sibling order and longstanding roles and gender expectations have an influence on capacities for empathy?
- is it cultural? Do other cultures share the care more fairly?
I'd love to find some data about this and I'm interested to know what your experiences have been.
Wildflower, you could virtually be talking about my brother and the relationship I had with him as a child too.

The other night my horrible brother had a call from the lifeline service to say that Mum had fallen and was on the floor - about 2,30 am. They never managed to reach me because I / we must have been fast asleep and not heard the landline quite a number of times. Brother told them he couldn't go to her because he was "over the limit". He lives in the same city(well some of the time but was there this night). This next part was my error- I had put my mobile phone by my bed but failed to turn off the night time no calls setting.I know this was unfortunate and a mistake I made but we have a landline downstairs which I would usually hear. As my brother had said no to the lifeline people and the lifeline centre couldn't get through to me they phoned our son who lives 1 and a half hours away. Our lovely son started his journey here. When my horrible brother finally managed to alert me with a call he told me Mum was on the floor. In my half awakeness I first thought he meant he was with her. He went on to rant and rant about why had I had allowed the hospital to send her home(2 days prior to that). The hospital had been lovely and very thorough, and despite 2 scans after 2 falls nothing was broken and they could see nothing on a head scan which could have been causing some one sided "head funniness" and her feeling of wobbling to that side. Note - this was a very, very intermittent thing which only had happened very occasionally. He, amongst his ranting and bullying about what he thought I had done wrong, said that he was "over the limit" and couldn't go out to her. I then learned that it had happened over an hour ago - 1 and a half hours ago to be precise and realised he wasn't with her!! So off we went, my husband who is supportive and to my mother's house. Our son arrived shortly after.

Mum was actually OK really. She had had sense enough to prop herself up against the bed and cover herself up. She had wet herself again only because she couldn't get up and I managed to get her to have a cup of tea and settle her, then sort out cancelling the ambulance and instead contact the lovely community nurse team who were so lovely that I wanted to cry. They told us to go home, get some sleep and that he would be with Mum in half an hour. So all three of us went home to our house.
On another connected note here the community nurse man said that the hospital had really concluded that the loss of balance episodes were to do probably with a manifestation of her dementia. She has had physios and OTs "arriving by the minute" over these last few days to organise adaptions and give equipment. Again am very grateful for all this help.
I had tentatively been trying to get some communication going with brother during or prior to this time but I only do it by email (which he says he doesn't read). He wants a phone call but he rants and is so nasty and wants what he wants. I fear letting him into the care agency system thing as he complains about all these services and has, in the past made Mum aware of his complaints. Sadly she somehow likes this "strong, forceful, get things done as they should be done" attitude....even though what he wants is ridiculous and not helpful. He doesn't seem to understand the process of diplomatic negotiation. So in a recent email before this event I have described there was a hopeful sentence. I quote:

"It is my understanding that if I am here in Liverpool it is as much my responsibility as yours to attend to Mum in an emergency, so at least we agree on that point."

That was 2 days before this incident where he let everyone down.
Thinking about it, as I do not know how he and his wife live their lives except to flit between 3 houses, one on another continent and another some 80 miles away, I can only conclude that he fell asleep for over an hour on this night as I have the times of the earlier recorded calls on my mobile. I wonder how severe his drinking problem is. I hardly drink really and I never drink and drive at all but there are taxis.
Mum wouldn't consider going into respite care to recover. I tried to discuss this with her and in that same email from my brother he said "On a separate point, when I spoke to Mum today, she mentioned in passing that you had asked her if she wanted to go into a nursing home" (which of course I didn't ...but there may come a day...) and there followed a further reprimand from him to me. I know she could have easily interpreted my words wrongly but he has been so against any sort of care in the first place. I am not sure now what he actually thinks about the care after I instated it (mostly only a half hour at tea time) because I couldn't cope and she had been mis-medicating her tablets...and this was while he was on a 3 month holiday over Christmas....but likely my brother would never say anything I had done was good.
It is tricky and I am worn down and I am taking each day as it comes and hoping that we might still go away for a planned 4 night break later this week. I have sent a reminder text to him and said that our son will not be able to do a journey in place of him in an emergency. As usual, no reply.
And yes I also feel that I am going through the motions of care for my mother. It is so difficult. She can wind me up so much,still. She never actually had a mass of tact but this aspect of her personality is now showing more. I do the job out of duty. I wonder how I would feel if I didn't have to be the one to put so much in. Would I feel more affection? Possibly. I need a the planned break but really to see what happens maybe before then- but yes I am nervous about the consequences. My health is suffering though. I know my stress levels have been too high.
 
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Violet Jane

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Aug 23, 2021
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There are some siblings who are just rather emotionally immature and are unable to move into a 'parenting role' when their parent becomes vulnerable and needs support and care. Sometimes, they have been very emotionally (and perhaps practically and financially) dependent on their parent or parents and just cannot cope with a role reversal. Dementia is hard and sometimes harrowing to deal with. None of us finds it easy to deal with but we step up because we need to. Emotionally immature people deny that there is a problem, find excuses not to help out or do a disappearing act.
 

Wildwoodflower

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Sep 18, 2021
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So many different stories here, all of them illuminating.
I suspect very few people actually WANT to be carers to a parent or loved-one with dementia, but we saddle up and do it anyway. Necessity, duty, simple human decency, love . . . all play their part in our decisions.
And we could walk away. Any of us. Just like the refusers and the invisibles. But we know that the consequences for the person we care for would be bad and in many cases catastrophic and so we stay.
As some have pointed out above, we won't be solving this mystery here. But I do think that it is a subject worthy of research and better understanding and I hope one day a wandering sociologist finds this thread and starts thinking about it.
 

Duggies-girl

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Sep 6, 2017
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So many different stories here, all of them illuminating.
I suspect very few people actually WANT to be carers to a parent or loved-one with dementia, but we saddle up and do it anyway. Necessity, duty, simple human decency, love . . . all play their part in our decisions.
And we could walk away. Any of us. Just like the refusers and the invisibles. But we know that the consequences for the person we care for would be bad and in many cases catastrophic and so we stay.
As some have pointed out above, we won't be solving this mystery here. But I do think that it is a subject worthy of research and better understanding and I hope one day a wandering sociologist finds this thread and starts thinking about it.
I think you are right because I certainly never wanted to be a carer @Wildwoodflower but I couldn't just walk away from someone in need of help, especially if that person was a much loved and caring parent because as you say the consequences are unthinkable. My parents were good parents which is why I could never understand my brothers attitude.

I suppose we just have to accept that we are all different but I still can't understand it and there is a difference between those who can't help and those that just won't help. My brother was a five minute walk from dads house so distance was no excuse.
 

Palerider

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Aug 9, 2015
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I think you are right because I certainly never wanted to be a carer @Wildwoodflower but I couldn't just walk away from someone in need of help, especially if that person was a much loved and caring parent because as you say the consequences are unthinkable. My parents were good parents which is why I could never understand my brothers attitude.

I suppose we just have to accept that we are all different but I still can't understand it and there is a difference between those who can't help and those that just won't help. My brother was a five minute walk from dads house so distance was no excuse.
A similar situation to me, though not the same. This is so well expressed and I still battle with this even now after all this time.
 

Palerider

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So many different stories here, all of them illuminating.
I suspect very few people actually WANT to be carers to a parent or loved-one with dementia, but we saddle up and do it anyway. Necessity, duty, simple human decency, love . . . all play their part in our decisions.
And we could walk away. Any of us. Just like the refusers and the invisibles. But we know that the consequences for the person we care for would be bad and in many cases catastrophic and so we stay.
As some have pointed out above, we won't be solving this mystery here. But I do think that it is a subject worthy of research and better understanding and I hope one day a wandering sociologist finds this thread and starts thinking about it.
Lots of worthwhile material to read around this, but sadly there is no one succinct answer why people behave the way they do. I think our experiences are complex and often we have different world views but many of us seem to have been met with the same or similar sibling experience. I unfortunately don't have an answer, but I do know work in this field is ongoing, and certainly isn't simple in unravelling it.

I once read a book by Oren Harman called The Price of Altruism: George Price and the Search for the origins of Kindness. Its well worth a read as it explores the survival instinct versus kindness by a man who was academically brilliant but in his quest to be altruistic found a very rugged path. George Price died a pauper and is buried in an unmarked grave, St Pancreas Church, London. The book poses some significant questions, why does altruism exist in a world of survival of the fittest?

 

B72

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Jul 21, 2018
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Altruism is there because we’re humans, not animals. That being said, chimps sometimes look after offspring that are not their own, and all the adult female animals in the herd look after babies. So altruism is also inbuilt.

On a totally different note, my daughter bitterly resents her brother who lives abroad. She knows that as her father deteriorates and I grow older she could have responsibilities he won’t have. I hate to think of her thinking like that.
 

Palerider

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Altruism is there because we’re humans, not animals. That being said, chimps sometimes look after offspring that are not their own, and all the adult female animals in the herd look after babies. So altruism is also inbuilt.

On a totally different note, my daughter bitterly resents her brother who lives abroad. She knows that as her father deteriorates and I grow older she could have responsibilities he won’t have. I hate to think of her thinking like that.
Mmmm just to point out humans are animal, and assigned to the animal phylum known as chordates
 

Duggies-girl

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Sep 6, 2017
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I have been watching the news stories from Ukraine and I have seen quite a few people being interviewed who have said that they simply cannot leave because their parent is bedbound, unable to make the journey or has some other kind of illness that prevents them from being able to escape. My heart goes out to them because that reminds me of dad and I know deep down that I could not have abandoned him whatever the cost. Other people have packed there children off to safety, often with strangers because they have elderly parents who cannot be got out and then you see the volunteers who are staying to look after sick children who are not their own but they still stay. This is more than common kindness, these people are actually making huge sacrifices for others.

@B72 I would not have resented my brother if he had lived abroad but he didn't, he lived around the corner which is a lot different. If he had lived abroad but not shown any interest then I would have resented it. A simple 'How is dad getting on' can make a huge difference, especially if it is followed with 'and how are you'
 

B72

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Jul 21, 2018
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If you’re abroad, and a doctor, and live in a bubble and just pretend everything’s OK. It’s a bit difficult. He’s coming here soon, for the first time in 3 1/2 years. He’s staying a very short time…….
 

Palerider

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If you’re abroad, and a doctor, and live in a bubble and just pretend everything’s OK. It’s a bit difficult. He’s coming here soon, for the first time in 3 1/2 years. He’s staying a very short time…….
Its so easy to think in a singular way. I think the problem with anything around the issues you raise @Duggies-girl is that there will always be others who do not and cannot think in the same way or even able to process with any relevance what it means to help another person. But here in is the problem of what was asked by @Wildwoodflower.

The only time anyone appreciates any kindness is when they themselves are helped, but even then is always the underlying unease of why someone perfectly capable of helping themselves would lean on someone so much when in the scheme of things there are people far more worthy of our help, our kindness. Everyone has their motive for doing what they do, some are genuine and some are just bold big selfist users. Such conversations invoke those who wish to protect their own ends as well as those who genuinely seek help.
 

Wildwoodflower

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Sep 18, 2021
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It is most interesting to learn from @Palerider that research is ongoing.
On the question of empathy and altruism, I was reminded of this paper,
Empathy Altruism Hypothesis
which I came across in an entirely different context a while ago and filed somewhere at the back of my brain. I'm not a scientist, but I have been a journalist for getting on for 40 years and I do like to ask questions and read up on things.
 

Palerider

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It is most interesting to learn from @Palerider that research is ongoing.
On the question of empathy and altruism, I was reminded of this paper,
Empathy Altruism Hypothesis
which I came across in an entirely different context a while ago and filed somewhere at the back of my brain. I'm not a scientist, but I have been a journalist for getting on for 40 years and I do like to ask questions and read up on things.
I have not read this paper, but I will in its entirety by the end of the week. I have read the first few paragraphs and can see its argument already. The purpose of altruism is not fully understood, but neither is Darwins theory of survival of the species and indeed to date there have been some corrections in the survivalist theories, the problem with such scientific theories is that they are seen in themselves as problems to be solved and subsequently fail because they can't encapsulate any objective meaning in terms of the human perspective. How on earth can a human being study itself without any subjectivity ?. Its true there have been some break throughs on some aspects of human behaviour such as the seminal study entitled The Road to Jericho by Darley & Batson (1973) and the shock experiments (Milgram Shock Experiments) but these are all perceptive studies and there are many that have been undertaken inbetween. Human beings generally have the inclination to help but what inhibits this in some scenarios over others is still not understood. More recently has been the move away from role theory to positioning theories, but these are not new in the world of dementia in terms of barriers or enablers to helping behaviour, what is significnat is how the research has vastly moved on into the use of a more objective but still potentially visive use of technology:

 

imthedaughter

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Apr 3, 2019
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Caring duties do seem to fall mostly on one sibling and it's not necessarily the one who lives closest! It also tends to fall more on females (though there are obviously exceptions!) even when the PWD is an in law and not her own parent. (Same for childcare - equality has a long way to go...)
This is true. I have an older brother and a younger one.
Younger one lives 10 minute walk from care home with dad in it. Hasn't set foot in it in 3 years or seen dad for over 2 years now.
I live 7 hours drive away and am really the key carer and main contact. My elder brother lives several hours away but not as many and does chip in but has to be asked.
They are like this because they are male, the younger is babied by my family who believe anything he tells them, and he's an avoider who will stick his head in the sand at any opportunity.
Apart from being the only daughter I probably have the best relationship with dad. I'm his favourite and the one he deems most successful - I moved away, worked hard, have a house, marriage etc. No kids but if we had them it would have been the cherry on the cake. I realised early on how difficult my dad was and reconciled it. Something the other two haven't been able to do. And at the end of the day I am less afraid to get my hands dirty.
For my inlaws I plan to not get involved. I love them but I don't buy presents or send cards, that is up to my husband. And the same for whatever lies ahead. I sorted out my family, he must take the lead with his.
 

MartinWL

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Jun 12, 2020
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I don't defend lazy siblings but it is worth pointing out that legally sons and daughters do not have a duty to care for adult family members. It is a decision of choice and some choose not to.
 

Lawson58

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Aug 1, 2014
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Victoria, Australia
I think my take on the issue of "invisibles" is rather different.
My sister lives, with her husband and children, abroad, so very much not wanting to be invisible, but as @jugglingmum says, you need hands on deck.Hard to do if you are not in the same country.
My sister and I get on very well, but we both had quite complex relationships with both our parents - even before dementia. She visits regularly, but much of the practical stuff, bills, appointments etc is a lot eaiser done by someone in the same country. Also, many things outside the narrow confines of my fathers current life (my mother had mixed dementia, my father now has early memory loss) require me to supervise, arrange and drive him.
I think my sister is very aware of the commitment, and we both fear for the future. I don't have children, so for me, I think it is easier, though I do have a disability, so if physical care is needed, I probably cannot do that. I know she worries about me. we both feel guilt......I am sure all of this is very familiar.
I think our lives now are complicated and the cost of living makes family caring very difficult - who can afford to give up work? I think those who look at caring as "womens work" are of a different generation - in their actual age and outlook. Lots of issues, not many answers.
I don’t think of your sister as an invisible. Invisibles are those who are in a position to help family members but choose not to. It sounds as if she is very caring and would be supportive in helping you but simply cannot.

My husband’s siblings live in UK and we live in Australia. They obviously can’t do much to help but they Skype regularly and he enjoys that very much, and importantly knows that they care about him and maintain the bond.

His children and grandchildren also live in UK but they have no contact with him at all, never a call to see how he is, never a card at Christmas or birthday. I know they are a long way away but their behaviour defines them as invisibles.