hello

[Julesgettingthere]

jules here - anyone around still ?

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[Hidden]

Morning Jules, hope all is well with you.

A truly miserable day here, drizzly, misty and horrid.

Supposed to be taking my 99 year old mother on a cherry picking outing with her nursing home. Hopefully she won't want to go as I certainly don't fancy it.

Have a good day.

Jan

[Julesgettingthere in reply to Hidden]

Hi Jan

Things a bit up and down - but ok.

You have a 99 year old mum ?! How absolutely wonderful.

My mum had me young, shes about to turn 70. I really love my mum an d miss her (she lives in Gambia). I'd love to think i have her around for a another 30 years.

Conjured up a very amusing cartoon in my head the thought of a 99 year old lady cherry picking with her daughter - i had her directing you with a walking stick as to the next cherry to be picked ! Did the whole of the nursing home go ?

Jules

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[Hidden in reply to Julesgettingthere]

The cartoon would have been good. Actually the reality is that the drawing would have been me trying to push a wheelchair across a wet field and getting stuck. But she didn't go!!! She has an absolute obsession with the toilet and insists she has to go every 5 mins or so. She decided she couldn't use a toilet in a field. I am relieved really as I had an hours drive each way and didn't want to be driving from loo to loo. Stayed at home which was probably a mistake as hubbies brain is having one it's 'away with the fairies' day and I am very close to either smashing something or bursting into tears. I really don't have the patience to be married to someone with a bi although I should be used to it by now. It's not the brain so much as the fact that it is apparently all my fault that he couldn't work his hedge cutter (there was actually nothing wrong with it and after 1.5 hours he believed me when I told him it was the extension lead that was faulty). Oh sometimes I just want to curl up and sleep for ever.

Enjoy the rest of your day. Are you able to chat with your mother on Skype? hat would be great for you both.

Janxx

[Julesgettingthere in reply to Hidden]

Hi there Jan

Its interesting to hear things from the other side of the fence.

The difference with me is my husband didnt know me before the accident, he chose to take on my problems. It must be life changing for you too when things changed so much from what you originally had 'agreed'.

What keeps you going ? Is it through love ?

Jules

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[Hidden]

I find it so useful, too, to hear of things through your eyes. The thing that mostly keeps me going is that if I give up, my daughter will have my husband to live with her. She only sees him for a week or so three or four times a year when he is on his best 'behaviour' and has no idea of the reality of 24/7. He tries very hard with her but would not be able to keep it up for long. She just sees him unable to remember where to find a cup to make some tea - she doesn't see him at his worse when he can't remember how to fill the kettle (or even that he is supposed to do it) before he makes the tea. It would ruin her life and I don't think that would be fair. She does have him to stay whenever I want a few days away. He is unable to try so hard for me, as it is too exhausting for him.

When something like this happens, I think love doesn't really come into it as the person you loved is no longer there and the replacement isn't someone you would have chosen to spend your life with. You are very lucky with your husband. He sounds a very nice man, hang on to him!!!

Jan

[Julesgettingthere in reply to Hidden]

oh jan,

In my world, i am no longer here, i dont recognize the old woman in the mirror. |t was very frightening the first time and it remains so.

What i hadn't thought about was people like you Jan. In a way you experience similar massive changes to life to me, although you were not the injured person.

Like you, I didnt ask for this and the reason i keep going deludes me mostly but i suppose if i had to say then it wouldnt be love, it would be because i would cause harm to my mum and sisters, and my darling darling husband.

I dont know your story Jan (i forget important things i am told) sorry if we have already talked about it, but will your husband improve ?

Regards

Jules

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[Hidden in reply to Julesgettingthere]

Hi Jules, Hope your appointment goes well today.

No, he won't improve, there is a history of alzheimers in his family and he seems to be getting it which isn't helping the bi.

His bi was caused by carbon monoxide poisoning. Our son was killed at age 15 in a cycling accident, Mike wouldn't talk about it, switched off. His business suffered and in the end he tried to commit suicide. I found him almost too late (not sure if that was a good or bad thing) and they managed to resuscitate him but he was left with major damage. Over the years we have managed to get him back to some sort of normality but the carbon monoxide also caused blood cancer which started a few years ago. That is so far responding to treatment but all more pressure.

Life is not easy and today I have had my sister screaming at me. She has just been diagnosed with breast cancer and wanted to tell our 99 yr old mum. I didn't want her to know until we were sure how things were going to progress and asked them to wait a while. Sister had good results, it has not spread beyond the breast. Mum told me that she was worried that she had upset sister as when they speak on the phone sister is different with her. I told her an edited version of the breast problem to stop her worrying that it is her fault. Brother-in-law phoned me last night screaming at me, telling me I had made his heart problem worse then sister sent a foul e-mail saying 'how dare I tell mum about HER cancer'. I just wanted mum to realise that the problem was not with her and they wanted her to know anyway. I can't win. They don't live close so I have day to care of mum and have to do what I think is right for her. They just phone her daily and keep telling me and the nursing home what we are doing wrong!

I am getting very fed up with things like they are, luckily when I come onto this site I realise that others have similar (or even worse) problems so it puts it into perspective.

Have a good day once your appointment is done. Hope you aren't too tired.

Jan

[Julesgettingthere in reply to Hidden]

Oh Jan, its just jules here.

Back from appointment a couple hours ago - first one i havent cried at (had just a little welling up). Each time i go there is another revelation about whay i am who i am now. So thats good - but he did say we will talk about the crash soon. I am getting more ready i suppose. Overall, not too bad today. Just relaxing now with a cup coffee.

When i was reading your post there, you are very very right about others having similar problems (including hindrance and unkindness from family who you thought you should be able to lean on for support !) I was in tears on the kitchen floor a couple weeks ago after my sister was screaming at me when i was trying to protect my mum from a situation. But it does sound as if (i am sorry to say) you do have a lot of aggro you really really dont deserve and could do without.

A thought that helps me sometimes is 'but, you never know what is around the corner'. People always use that to mean something bad, but absolutely brilliant and out of the blue things do happen sometimes.

Sun is out here, hope it is there too -

Kind regards

Jules

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[angelite in reply to Hidden]

Hi Jan,

Just a thought, regarding making a cup of tea : can you put the instructions up on your kitchen cupboard, a step by step type of list ? Also, do you have labels on cupboards to roughly describe the contents of them ? ( cups/plates, tea, coffee, sugar etc )

I have stick on hooks on my kitchen cupboard doors and use those clear plastic slips to put sheets of paper in. Easily changed if needed. I have one with basic instructions on how to use the washing machine for partner - he had a stroke a few years ago and struggles to remember the sequence - it's v. useful and enables him to do some of his own washing, which helps relieve my workload too : ) Angela x

[Hidden]

Thanks, Angela, I'll try that. I still haven't found where he has hidden my small saucepan! Ok so long as he actually remembers to read the labels (not guaranteed!).

Jan

[Julesgettingthere]

Hi Jan

My husband still cant locate his rolling pin (I put it somewhere clever/space saving some months ago) !

I wonder what other odd things have 'gone missing' helped by a little dash of tbi .

Jules

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