Monday, 19 January 2009

Agoraphobia - our Care Network

I don't look after Marie alone. There is a care network.

Marie needs 24-hour care. She couldn't last one single minute without knowing that there is someone nearby that could come to her assistance within minutes. Or so she believes. And this belief rules her life.

There are others in our family who also need care. We have 2 small children. Then there are my businesses, without which our standard of living would take a sharp drop. This wouldn't actually bother me too much – I've led the millionaire lifestyle and found it lacking – but not being able to provide the best possible childhood for my 2 children is not a possibility I let myself consider. I also try to be available for my grown-up children when they need help or something sorted. Last, and not least of course, is Colm, who needs time with his family, a legal representative and someone to oversee that the care package the state provides is operating the way it should.

This is our care network -

  • My 3 adult daughters who live nearby, who assist me look after their younger siblings and Colm. They take the younger ones out on trips, particularly during school holidays. They babysit when required. They make sure that Colm is involved in all the family occasions and take him to their houses or out for a trip on an ad hoc basis. This works very well. Btw, their partners are equally helpful.

  • My staff, who are aware of Marie's disability and my family obligations. They work extra hours at the drop of a hat for me when required. Often, before I've got round to asking them for assistance, they have seen a need and have accommodated it.

  • Our neighbours, who are always there when required to be available for Marie when I have to go out.

  • Our friends, who never question why Marie cannot get into a certain building or attend an open air event. They just accept her the way she is.

  • Our family doctor, who visits Marie at home, since she can't get into the surgery. No matter how trivial the matter is, when Marie rings, she's here within a few hours.

  • Local businesses, most of whom don't do deliveries, but collect/deliver to Marie (when I'm not around) without charge.

  • Our local school and nursery school. If I cannot collect the children on time, it's no bother to them. They'll look after them until I do. Likewise, if I have to leave earlier than usual in the morning, I can drop the children off early.

  • Marie's parents, who look after her, and sometimes the children too, when I'm away for a few days.

There's not a day passes that I don't feel immense gratitude to all the folk who assist Marie and help me in my capacity as a carer.


Sarah♥ said...

Marie is very lucky to have such a lot of people who are willing to help her.

I have my mum.


rosiero said...

I have visited Marie on her blog and left a comment. She will probably find the blog a great way of offloading her worries by telling her story and maybe will find the help or solution to her progress. I am glad you have a lot of support around you. Your grown-up children in particular sound real gems. It must take a weight of your mind, particularly when you have to be away from home and cannot keep to a routine.

Robert said...

Sarah - You're right. She's very lucky. And she knows it. But we are also lucky that we live in a small, friendly community. I don't think life would be so easy in a big city.

Robert said...

rosiero - Marie just started her blog out of the blue - no input from me! I'm not quite sure what she hopes to get out of it. We'll have to wait and see. I'm rather proud of my grown-up children. They help me more than they know. I expect your daughter will turn out that way too.

Nechtan said...

That is a really good network of understanding people you have there Robert. Quite amazing really in today's world. I wonder if it has something to do with your location- obviously not family but the others around you.

For example I cannot get my GP out and haven't seen him in person for over 2 years. Even getting a phone conversation with him is sometimes an ordeal. He is very understanding when I talk to him and helped enormously with referals and the DWP but if its anything else then he feels I should at least make the effort to go to him even though I physically cannot.

Also at the moment I am having to keep my daughter off nursery every second week because although my wife could drop her off but cannot pick her up. Our older daughter went to nurserty from 9:00-16:00 but our younger daughter only goes 9:00-11:30 and they are not flexible in the least.

It must be a great weight off your shoulders having such people around you. Especially to have children who are so willing to lighten the load. Together it is something that money cannot buy.

All the best


Robert said...

Nechtan - I live in one of the most friendly areas in England I have ever known (and I've been around...) - although when I lived in Glasgow I found everyone very friendly too. I think the GP goes "the extra mile" for Marie. One of my daughters has an inflexible nursery school, too - something which I don't understand - aren't they supposed to be serving US?

Kaci said...

She is very lucky, that is awesome she's found a very supportive group to help her. I also feel very blessed I have many understanding people in my life although I wish I had a family Dr who did house visits!

Robert said...

Kaci - ring round all the doctors in your area and explain your problems. You never know what help you might get!

The Dotterel said...

You really get to know who your friends are when you need them, don't you? You're both very fortunate to have such a great supportive circle!

Robert said...

TD - Coudn't agree more!

Raven said...

Sounds like you and Marie have built a wonderful support community for yourselves. Agoraphobia is such a strange mental illness. I am blessed with kind neighbors where I live and some good friends who help fill in the gaps that never leaving home create. In my case, my agoraphobia is not as bad as it used to be, but I have physical problems which feed what's left of it... One treatment which made an impact for me - it didn't cure me, but it helped a lot - is something called EMDR. About 5 years ago (time flies) I wrote a series of columns at The first article is at the bottom of the page (June 2001) and the last sometime in 2004 or early 2005, I think. This is the one about

Robert said...

Raven - Thank you very much for your comment. Marie & I will investigate your articles. Thanks for caring!