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Re: Welcome to Carers Space and Matter members

Posted: Fri Jul 07, 2017 1:15 pm
by jenny lucas
I think I rather fall between two stools in this situation.

I suspect, you know, that as well as BB's very practical and cogent point about how it does, eventually, become necessary to think about 'when the end comes', because it's so often the case that, as she says, we find ourselves floundering and ignorant, but, and I say this cautiously but say it all the time, we all have to take into account that on this forum there are, probably a predominant number of people who are carers for very elderly parents, very many of whom have dementia.

I'm only speaking of myself now, but all the same, in 'lesser respects' I think it may apply, more sadly, to other elder/dementia carers, but, like it or not, I have to say I 'long' for 'the end to come' for my poor beleaguered MIL. I can't, hand on heart, wish her 'longer life' because her life is so, so grim now. Almost no quality of life at all. When the day comes when she no longer wants the cream teas I now have to bring in to her (as she now can't get in and out of my car for a drive - another decline alas), then I know that she will have nothing to take any pleasure in.

So, perhaps, in that sense, 'talking about the end' is a strange kind of 'comfort' to some people here, because it signals a 'release' for their caree - and, yes, for themselves too.

When dementia gets its fell grip, eating the person from the inside, a hideous kind of 'vampirism' almost, when extreme old age reduces the body to a collection of 'failing parts', then really, it can be the only 'kind' thing to wish for them - release from an existence that is an ordeal.


BUT.....

And this is where I 'swap over' to the totally opposite point of view.

So, whilst I can only really 'hope for her release' for my poor MIL, when it was my own husband, afflicted by cancer in only middle age, then obviously my attitude was the complete and absolute opposite.

'Death' was a word I never, EVER 'allowed in'. I didn't like thinking about it, anticipating it, or even, I have to say, meeting other cancer-spouses who had become cancer-widows.....

I denied it and defied it - because what would have been the point of thinking about it?

Cancer was about survivorship - making the MOST of life, valuing it beyond anything, because it was under threat. And the very, very last thing either I or my husband wanted to do was 'imagine the worst'.

So I do think I can see 'both sides'.

It really does depend totally on each carer's own personal situation in the end. But the information has to be 'available', even if we are 'tactful' about when and where to mention it. For some, it will be both necessary, useful and even comforting.

Re: Welcome to Carers Space and Matter members

Posted: Fri Jul 07, 2017 2:11 pm
by susieq
Dear Forum Members

This topic was started to welcome new members from the Carers Trust forums (Carers Space and Carers Matters) when they shut down earlier this year; it had now gone 'off topic' quite drastically !

If you wish to continue discussing matters around "End of Life" please start a new topic, although we do already have one on this very emotive subject here https://www.carersuk.org/forum/support- ... life-17305

Thank you :)

Re: Welcome to Carers Space and Matter members

Posted: Sat Jul 08, 2017 6:30 am
by Mick_1707
Greta wrote:Hi Mick,

Excuse me butting in, but those messages were in April and Carol did write that her mother was 'terminally ill'.

I can't see the evidence for your reaction to bowlingbun. I realiize her advice was not appropriate for you, but none of us know enough to know how to advise when people log in. BB has cared for about 10 family members including 4 parents and parents-in-law but she also gives a lot of advice to people caring for a child who needs support, as one of her sons was brain-damaged at birth and is now 38, and she certainly doesn't mention death in that connection, except her own!
Maybe but it was not relevant in this case, on this thread. The problem is that good advice can become lost if not posted in the appropriate context, on a relevant thread. Otherwise, well intended advice based upon (personal) experience will not be read, as most people, I imagine, prefer relevant advice and when searching for it go to specific threads. As for ''none of us know enough to know how to advise when people log in'' I would suggest that we start with addressing the topic about which they write and stick to it.

Re: Welcome to Carers Space and Matter members

Posted: Sat Jul 08, 2017 8:18 am
by jenny lucas
By and large this is a very VERY 'temperate' forum - for obvious reasons, the main one being that, by its very nature, caring comes with a lot of inherent stress attached to it.

We are all, by and large, extremely 'pleasant' to each other, even when we have differing, and sometimes deeply held, opposing views.

I wouldn't want a thread that is specifically designated a 'Welcome' thread to give any newcomers a wrong idea about just how 'temperate' this forum largely is!

(I think the most agitated it ever got was when we were discussing the Brexit/Referendum last year!!! :)

Shall we all try and bear 'temperate' in mind perhaps??

As I say, we all come here 'under stress' of some degree or others (mine, thankfully, is currently - though not historically - very low level now relative to many other here), and we all make allowances for that factor.

The mods do a great job in 'cooling things down' if exchanges veer into the 'in-temperate' ....as I rather feel they are doing at the moment....??

Re: Welcome to Carers Space and Matter members

Posted: Sat Jul 08, 2017 8:25 am
by Mick_1707
I would suggest that Admin remove this thread as it has served its purpose, has it not?

Re: Welcome to Carers Space and Matter members

Posted: Sat Jul 08, 2017 8:30 am
by jenny lucas
Mods/Admin usually make up their own minds on that! I've had posts removed/edited, and sometimes I've been a bit miffed, but, like I said, in the end, it's all about 'temperateness' and mutual respect for each other's point of view and appreciation of 'where they are coming from' (and we all have 'current emotional baggage' and very often 'historical emotional baggage' as well.)

And sometimes, yes, I've had to back off from things I wanted to keep discussing, in the general interests of 'peace all round'!

And, perhaps most irritating of all (!!!!! :) ) I've sometimes had to accept I'm not getting the last word on something. Not everyone does.....

It's usually best to let the mods do the 'closure' and then no one feels they've 'lost the debate'.....!!!!!