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My daughter died ten days ago

(501 Posts)
AlieOxon Fri 15-May-15 15:04:21

Of acute pulmonary oedema, we have just heard.
She hadn't seen her consultant for four years for her kidney condition
She probably wasn't taking her potassium pills.
We didn't know she was risking her life. She probably didn't.
.....and I am really angry.

There is a black hole in the middle of our family.

But what I really want to say is that although the condition she had is very rare (Gitelman's Syndrome, if you want to look it up) that I have found there is a similar risk in people with heart conditions who are taking some diuretics.

We should have known that she was at risk. From what I find, this is only recently realised by the medical profession about GS patients - there may be only 1500 in Britain. I don't know if heart patients are warned.
I feel this should be better known.

AlieOxon Tue 30-Jun-15 16:20:30

Garage have not been able to come for the car - but apparently my clutch is giving up....I knew it was going, but it was reasonable until I came back from Oxford. Not worth fixing. The garage are on the track of a Golf for sale.....

Can't think about the SODC letter now. Hope M will help.

AlieOxon Tue 30-Jun-15 12:41:21

Could have been worse POGS - I was up early and watered the garden...

I have been trying to get back to what I was involved with with the SODC about the fire next door, and to write a letter to the new Labour councillor.
( www.gransnet.com/forums/aibu/a1215636-New-update-on-my-reclusive-neighbours )
But reading about the fire and what happened after I'm finding very upsetting....I just had to drop any complaint when Jayne died.

I am still in the same situation as regards next door, no one is telling me anything, as I was looking up the councillor I realised there were three people at their gate obviously discussing something about the house - I came down from the loo and they had gone.

I hear no sounds, don't know if the man is back from hospital, and had begun worrying that the bins, tipped over in the front, had not been moved at all recently.....I need someone to push for me, as the EH Dept aren't.

Friend M should be back today. She has kept in touch by phone and email

POGS Mon 29-Jun-15 22:24:34

May I wish you a reasonably good night Alie. moon

AlieOxon Mon 29-Jun-15 21:39:34

Life is all up and down anyway....
.......I really need to replace the car but haven't even thought about it!
The garage will pick it up tomorrow.

Yesterday I was miserable and today I have been coping, reasonable until I got very tired about teatime. Going to bed now,

Mishap Mon 29-Jun-15 21:09:54

That's all you needed, the blooming car going wrong. I am sorry you have this to deal with.

petallus Mon 29-Jun-15 19:11:08

Glad you are feeling a little better in your health today*AllieOxon*. flowers

AlieOxon Mon 29-Jun-15 11:25:42

Not too bad at the moment, reduced my sleeping stuff and feel clearer in the head and have more energy.
I will deal with my CAR first as it started running badly on the way back from Oxford with S......

Iam64 Sun 28-Jun-15 20:31:38

sorry x posted there

Iam64 Sun 28-Jun-15 20:04:31

Hope you can get through to Cruise by phone tomorrow Alie and explain just how tough things are for you flowers

AlieOxon Sun 28-Jun-15 20:04:31

I just phoned the Child Death Line and sobbed on their shoulder for a while.... it helps......

AlieOxon Sun 28-Jun-15 19:27:35

To, not and!

AlieOxon Sun 28-Jun-15 19:27:04

Thought they might be available now, but no, it's 10 a.m. and 1.00 p.m. Monday to Friday....

AlieOxon Sun 28-Jun-15 19:24:27

Yes, maybe I should...thanks.

FarNorth Sun 28-Jun-15 19:17:45

Would it help to talk on the phone to someone at Cruse, rather than travel to an appointment? Maybe you could ask them about that?

Whoever composed that letter doesn't seem too hot on communication skills, especially considering they are writing to bereaved people who have asked for help.

Ana Sun 28-Jun-15 17:58:45

Oh, that's very unfair if that's the reason! There must be many people who can't get out and about, let alone drive to appointments...sad

AlieOxon Sun 28-Jun-15 17:36:04

Yes anno I think I did! All those asking are vulnerable....

Ana, no. However, I did ask them to come to me - I can't do any more driving than I am to Oxford........may be a problem.

annodomini Sun 28-Jun-15 17:29:45

They could do with some lessons in communication skills, because a vulnerable person, such as you are, Alie, could be quite hurt and take their tone as dismissive. I don't think that's the intention, but they could make it clearer.

Ana Sun 28-Jun-15 17:25:43

I wonder why they're asking you to increase your availability? Did you say you'd only be available at certain times, Alie?

I think the bit about letting them know if you no longer require support is standard.

Mishap Sun 28-Jun-15 17:21:07

I suppose that at least they have been in touch to say they have not forgotten you. Bereavement counseling is an area that needs proper training and I can understand that recruitment and training is going to take time. Might it be possible to talk to your GP to see if there is any counseling available on the NHS in your area? Some GPs have attached counselors. I hope that you manage to find some help soon.

AlieOxon Sun 28-Jun-15 17:12:09

I don't know what to do about this. I'd just about given up on them.

soontobe Sun 28-Jun-15 14:13:01

It looks like they are having a recruitment drive, according to their website.

AlieOxon Sun 28-Jun-15 14:00:32

Starts off saying 'sorry you have had to wait so long....we have not forgotten about you...'
....'might help if you were to increase your availability'

In last two paragraphs
'If you no longer require bereavement support, could you let us know?'
'Number to call...you can leave a message...This will help us to manage our waiting list and we would appreciate this very much'

'Warm wishes' - but a general impression of being over loaded!

annodomini Sun 28-Jun-15 13:41:45

What exactly did the letter say, Alie? It does seem a bit very heartless to try to clear the waiting list in that way.

Anya Sun 28-Jun-15 12:47:48

That's a bit tough Alie

Don't forget you can ring TCF and speak to someone.

Mishap Sun 28-Jun-15 10:11:23

Oh dear - that dos not sound very good.