what have we done...

[nelliejo]

With strangers I smile sweetly at their ignorant and arrogant comments to and about myself and my sons, knowing that I am unlikely to have to look at their smug little faces again; to family, so-called friends, neighbours, and professionals I used to say
"spend a week in my shoes and THEN we'll discuss your opinion of my life".

Oddly enough, I've had no takers, but the people I've had to say it to, have only ever had to have it said once.

[NanaNana]

I would LOVE someone to ask me to do that 'Wife Swap' programme.

I should apply, shouldn't I?

[SandySea]

we ... have 24 hour assistants ...... soooooo, my life as a carer can't be that bad, right? ...Just because I live in a large place, with help? doesn't make me any the less a carer.

This is absolutely positively and without question NOT an attack of ANY kind. Just a need I have to understand what a carer is (and I'm one myself!) if you have 24 hour assistants. I could care for my mother forever and a day without any stress whatsoever if I had 24 hour assistants, rather than the 2.5 hours I get every Wednesday afternoon. Big place, small place, tent or mansion is of no consequence, but 24 hour assistants? Woweee!

Nights out for me? Not for 15 years! Weekends away? None for 20 years. Vacations? Ha, try 30 years since my last one. Added to that, the constant fear that if I were to get sick, who would be there for her, the worry that when I run down to the shops to get groceries, she might take ill while I'm waiting in the supermarket queue, the laying awake at night thinking "what was that sound, did she call, does she need me?" 24 hour assistants? To me that would be the height of luxury, plus some. Please, like the people who AREN'T carers and misunderstand your situation, I as a full time carer need to understand too - I mean, if I can't, how can THEY?

I also think, reading through this thread, that we sometimes get a bit paranoid or over-sensitive about people telling us about their vacations. I was like that a decade ago - "hhhmph, how dare they talk about their vacations when I can't have one, are they just doing it to irritate me or are they genuinely insensitive?" Then I realised that the world wasn't about me - most people take vacations, they enjoy themselves, they like to talk about it, and good luck to them, maybe in some ways I can have a mini-vacation just listening to them if I become as open-minded as I expect them to be, and listen carefully. The only ones I object to are those who say things like "well, YOU should get away, it's about time YOU took a vacation" That IS insensitive. Do they think I can shove my mother into a pet boarding kennel for a few weeks?

Most people aren't carers, so they don't know - and we KNOW they don't know. It's not their fault. There's no law that says everyone must take a turn at being a carer for a month. So they say some things sometimes that we think is insensitive, but really - is it their fault? They know not what they do, most of the time. And if we take offence or react angrily, we alienate them because they're afraid to open their mouth next time in case they innocently say something else offensive to us. Unless it is designed to be offensive (and we all know the difference) then what the heck? Without our years of caring, we'd probably have been the same to other carers. (There but for the Grace of God, goes me)

Oh, and by the way, I think we ARE all saints. Most people couldn't handle what we handle. Given the same situation, most would shove their loved one into a nursing home instantly because they just couldn't cope. And that's probably ok too, caring is not for everyone. It probably wasn't for any of us either, but we (being the saints that we are) found a way to cope, which is what makes us saints! Bravery isn't lack of cowardice, ya know - it's being a coward and overcoming it!

So fellow-carers, don't deny your sainthood, celebrate it. Just my little rant, lol.

[Guest]

Sorry but I think that you must be living in a parallel universe. Try putting yourself into a marriage in which there is a third person, not through choice but necessity, living in your home 24 hours a day, seven days a week, 52 weeks a year, year after year after year. I absolutely understand where Fran is coming from, a marriage normally consists of two people, not three, our households are normally made up of family not strangers who are the best on offer out of a selection of people who we would not normally countenance living in our home.

As for over-sensitive, you clearly have been very lucky and I am pleased for you but please do not suggest that some of us are over-reacting to the thoughtless, crass and sometimes cruel comments to which we have been subjected.

As for holidays, I too enjoy them second-hand but this is a personnal thing and I can see how it can be a reminder to other members of what that they have lost.

And saints, we are just ordinary people doing a difficult job as well as we can and sometimes failing, there is nothing saintly about that.

[rabidrabbit]

Sorry Sandysea-- that is an attack on Fran. Yes she has 24 hour carers - her husband is very disabled and she could not be expected to do otherwise unless she was superhuman. That means she has to forgo all family privacy, let alone have to do all the admin and it's quite obvious from all her posts that she is absolutley devoted to her hubby- even sleeping on the bathroom floor to be near to him. She has also suffered healthwise- I'm not surprised she has neck problems given all the humping around involved Fran didn't walk away as some spouses might- she doesn't have a life like other wives. Maybe you are a saint but the rest of us are just human with faults like everyone else.

[SandySea]

Sorry but I think that you must be living in a parallel universe. Try putting yourself into a marriage in which there is a third person, not through choice but necessity, living in your home 24 hours a day, seven days a week, 52 weeks a year, year after year after year.

Isn't having a 24 hour live-in assistant a choice, too? And really, I WAS only asking, not attacking - and I did carefully point that out! You know, so often we accuse others of not understanding our situations, but when a fellow-carer asks a question about another carers circumstances and is told she lives in a parallel universe, perhaps we need to think about how we communicate with NON-carers about our circumstances. Maybe we can sometimes get defensive.

As for over-sensitive, you clearly have been very lucky and I am pleased for you but please do not suggest that some of us are over-reacting to the thoughtless, crass and sometimes cruel comments to which we have been subjected.

Did I not say there's a difference between people who are purposely being mean, and those who just don't understand? We can usually pick the difference.

As for holidays, I too enjoy them second-hand but this is a personnal thing and I can see how it can be a reminder to other members of what that they have lost.

We have all lost many things, myself included, I simply pointed out that these people often don't KNOW the're offending us by telling us about their vacations.

And saints, we are just ordinary people doing a difficult job as well as we can and sometimes failing, there is nothing saintly about that.

There is MUCH that is saintly about that, Parsifal. As I said, bravery isn't lack of cowardice. Most people would not and COULD not cope with what we cope with every day. No doubt Mother Teresa was just "an ordinary person doing a difficult job as well as she could and sometimes failing".

Perhaps, too often, we carers lose confidence in ourselves and start believing the ignorant who think we're having an easy life living off welfare and not doing anything worthwhile. Perhaps if more of us realised that we ARE saints doing very worthwhile work that the majority of people wouldn't do, we might have more respect for ourselves and thereby invite more from others.

Just a thought.

[SandySea]

Good heavens!
While I was responding to Parsifal, dragonlady's post came in saying I WAS attacking Fran! I said (and went to great lengths to point out that) I just needed to understand. A simple answer like "her husband is very disabled and she could not be expected to do otherwise unless she was superhuman" would have been just fine - then I WOULD understand! And now I do.
Thankyou.

[Guest]

Sorry but I think that you must be living in a parallel universe. Try putting yourself into a marriage in which there is a third person, not through choice but necessity, living in your home 24 hours a day, seven days a week, 52 weeks a year, year after year after year.

Isn't having a 24 hour live-in assistant a choice, too? And really, I WAS only asking, not attacking - and I did carefully point that out! You know, so often we accuse others of not understanding our situations, but when a fellow-carer asks a question about another carers circumstances and is told she lives in a parallel universe, perhaps we need to think about how we communicate with NON-carers about our circumstances. Maybe we can sometimes get defensive.

Hardly a choice if the person who you care for is entirely reliant on others to meet even the basic of physical needs during a 24-hour period and requires double-ups to ensure safe handling. Mea culpa, guilty as charged, except I was not being defensive about anything relating to myself but pointing out what a lack of thought had apparently gone into the response to Fran's post but thank for the tip about the way in which I communicate with non-carers, I really had not considered it before .

[no1mum]

SandySea, when I read your first post on here it came across to me that you were singling out individuals to have a go at.

[Guest]

I did not read it as that, I read it simply as a rather (very?) thoughtless and, dare I say, insensitive response to the concerns raised on the thread and an inappropriate use of one particular post which I recognise did come across, intended or otherwise, and I suspect that it was not intended, as an attack on the person who posted it.