Madiba - Nelson Mandela

Yesterday Nelson Mandela died.
I felt sad, the loss to the whole world is big. He was such an inspiration to so many folk worldwide ,including me. We lived with a picture of him in our kitchen at Seven Sisters in Hope Street.
When we moved into Hope Street, it was filled with old furniture, one of the wardrobes had a sticker saying " free Nelson Mandela"I kept in on for many years.

We were at the hospital yesterday,I do not like going to The Royal Lynda Mac Cartney cancer centre.

We are always kept waiting for long periods, up to two hours, I am not all that enamoured with the staff, they can be a bit bossy and dismissive. I am used to the great care at Marie Curie for both of us.
Still it has to be done. I think we will get someone else to go with John in future, then at least I can be at home feeling relaxed when he comes home instead of both of us being stressed out.

John has decided not to go to London for five days in December, I am a bit disappointed as I was looking forward to a few  days to myself, to get prepared for Christmas and just to have a sense of freedom. On the other hand I think it was a bit ambitious to think John could manage all that travelling, a new home, new bed, living in a busy household with young children. I was a bit worried.

I am a bit fragile at the minute, I feel very moved at this time of year, the carols , the lights, the whole Christmas festival is so connected with families, and I think of ma and pa, grandparents and all the folks who have passed on.
Our Christmas has to be different this year, our tradition since we came home from Spain was to spend Christmas day with Andrew Philip and Phil. it was a big adjustment for all of us, now we have to adjust to something else. Life's rich pattern of change.

I am feeling all kinds of things in this new role, I feel glad to be able to do it, and feel grateful that John is able to be home.
I feel a bit trapped at times, no spontaneity in my life now, everything has to be planned.
I feel a bit resentful if I am honest.I feel lonely too.John is here all the time, but now it is all about him, has been since his diagnosis, that has changed him. I think this is quite natural when you are very ill ,you only plan from one set of medications to the next ,one hospital visit to the next, and on and on.
I don't have him to talk to anymore I am the one who has to be leaned on. It is not a two way street anymore.

John's life is very small and he is the first to admit this.My life is getting smaller and I admit it, but sometimes that is when I feel resentful. Not my choice, not John's either, but he accepts it more than I can. He admits that when you get to 82 it is a bit easier.

Although when he feels good and when he is having a good time  and has forgotten for a little while how ill he is,he admits he does not want to go. So few people actually want to go.
Other times he says he is grateful to have had this time to see people enjoy his family , our families, friends.

I make plans for each week , for each month, hoping that when the time comes I can still go ahead with what is planned.

I am not so relaxed these days, I have so much responsibility, I wrote out a plan of John's medical regime and his daily routine and what needs to be done for him for Johnny and Penny, it made me dizzy when I saw how much I do.

We are adjusting to carers, helpers, befrienders in our lives,but they have not made it easy, it was a lot of stress in the beginning trying to get it to all come together so that we can feel helped.

I still do not like the interruption to our lives, but I am finding it a bit easier.

We do get some financial help, £78 per week attendance allowance , for John, this helps with taxi's ect - I am not entitled to a carer's allowance because I have a pension,I do not see the connection.
 I am on duty 24/7 and when I am not , a lot more than one person comes to do what I do.

Still ,it is how life is for now ,and really I want to embrace the life I am living rather than regret the life I am not living.

My camera is not uploading to picasa anymore, I will order a new cable and hope this will solve the problem.

We are still getting used to the new , BT system, Apple TV, Netflix.We keep forgetting what buttons to press, but we are improving. We don't watch enough TV etc  to be experts quickly and quite frankly when I do sit down to watch,I am too tired to learn.

Everything is changing at the moment,and will keep changing I am sure, and likely always has, sometimes you notice it more than others.

So cyberspace, this is my epistle for today.