[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Advice or sympathy - Carers UK Forum

Advice or sympathy

Share information, support and advice on all aspects of caring.
I am not sure this is the right area of the forum to post this. Of course, carers require and appreciate advice on a whole range of subjects, as this forum itself demonstrates. All of us, when we first encounter the illness suffered by our loved one, and realise the full implications, need -- and generally receive -- a lot of information. We all need advice, but we are usually able to seek it for ourselves: unsolicited advice can be counter-productive. This forum, I think, also demonstrates something that is often more important: sympathy.
I have derived more comfort from the sympathy of friends, some of whom live much too far away to give practical help, than I have from the barrage of advice I regularly receive from certain family members, advice that often seems to be based on the assumption that I am too stupid and ignorant to have discovered these so-called 'solutions' myself. I find myself backing off as soon as I hear sentences that begin, 'why don't you...?', 'do you know about...?' , 'have you contacted...?' and the like. And then, because I do not immediately embrace the advice offered, I am 'not being proactive enough', or I am simply being 'obstructive'.
For me, the continual reiteration of bright ideas about what I should do to alleviate what is ultimately an insoluble situation adds substantially to my stress. They are invariably things I already know about, and am not doing because they are not necessary, helpful or appropriate at this moment. I feel that I am being treated as an incompetent fool. Quite often, all I want is for someone to say, 'I'm sorry things are so hard. Tell me if there is anything I can do to help'.
Does anyone else here feel the same? I should very much like to know about the experiences of others, and perhaps get some advice(!!) on how to deal with those who keep nagging me.

Tristesa
Tristesa, no one really understands, or wants to understand what it means to be a carer, especially a long term carer. The people I remember with most affection are those who notice that I'm dog tired and need a break. After 34 years I'm fed up with putting a brave face on and soldiering on through whatever disaster fate has in store for me next. I certainly do NOT need advice that I should read more interesting books, biographies of famous people for example - as a close family friend told me recently. He was horrified that all I read was (escapist) historical novels, generally with a love interest! Generally I don't waste my breath on comments like this, but every so often I have an almost overwhelming urge to tell them to get lost..... or worse!!!
You could try this approach:

"Thank you for your advice and I will certainly think about what you have said, however at the moment what I am most seriously in need of is a break and some time for myself before I crackup completely, so if you could see your way to taking over from me for a couple of days that would be really helpful".

You probably won't see them for dust after that, but at least you've let them know Image Image Image
I agree with you Tristesa. I can feel patronised by those who give advice, and I think it also makes me feel even more isolated in my caring role. I often just want someone to tell me that I'm doing really well considering how very hard the job of caring can be. I feel that the advice is a form of criticism. I would dearly love to be given a pat on the back for the effort I am putting in day after day. If the person dispensing the advice is also a carer, I am much more inclined to listen, at least they understand something of what I am going through.
Exactly, Lapwing! I feel patronised. The 'advice' is also inclined to move into areas that are not directly connected with the medical situation at all. I think it is generally true that as people become elderly, even while their health remains good, younger relatives feel increasingly entitled to give unsolicited advice about lifestyle ('Do you really need to keep all these books? Wouldn't it be a good idea to get rid of some of them?'), but the carer situation provides a great, gaping opening for that kind of interference.
I am keenly and humbly aware that many people here are in much more extreme situations than I am, so I don't want to whine too much, but I hate, hate with a passion, having to make elaborate advance arrangements if I want to be away even for a single night. I feel that I am having to ask permission, to explain where I am going and why, like a child having to account to her parents for her actions; it is a total loss of privacy and independence. This distaste is so strong that it makes me really reluctant to ask for 'time off' at all.
Thank you for letting me moan and complain. I do appreciate that others are in worse situations (and also that my own is going to get worse), but simply knowing that others have some of the same feelings is a comfort.

Tristesa
Sometimes, what I'd like is for somebody to ask how I am. And if I give the socially acceptable answer, for them to reply with something like "don't give me that, how are you really?"

I'd like there to be recognition that actually I have more than 2 braincells to rub together, and access to the internet; therefore, if I want information, the chances are I'll find it as and when I need it.

I'd like the well-meaning person giving me the advice to come over here and sit with my caree for a day before telling me how busy and/or lonely they are. I'd also like them to concede that if they choose to work as a careworker, it's nothing like being a carer.

While I'm about it, I'll have a side order of world peace, longer legs and a warm ice cream.
I think what is clear is that what we want is very different from what we get. I think Susie's response is excellent.

We are all different though - I do not want or need sympathy (chance would be a fine thing). I would like practical help - someone to drop mum's prescription into the chemist while I am at work, someone to visit her once in while for a cup of tea when I am NOT there, someone to phone her when I have to travel, someone to sit with her when workmen come round. In short, I would like to be cloned.

I too get the well-meaning and very irritating advice. However, I will admit that just VERY occasionally there is a something useful, eg my aunt prompting me to get a spare backdoor key cut - v useful when the front door jammed.

Tristessa - I too object to the elaborate preparation if I need to be out / away for more than 24 hrs. But I see no other option to that. I also feel at the age of 50 I should not need to tell my mother precisely what time I will be back but as she lives for that, again no choice.

Oh, and while we are on the wishes, more world peace, ice-cream and a better metabolism for me please
It is good to know that others feel as I do. Of course I concede that people do come up with useful advice from time to time, and when they do, I am happy to take it, and to express my gratitude, but most of the 'helpful' suggestions are things I already know and have rejected for good, rational reasons. This really gets in the way of my relationship with the family members with whom I should be working and discussing things. If I feel that they think I am a fool, or worse, I simply don't want to have contact with them. It is SO counter-productive. We all want what is best and most appropriate for my husband, and we should be able to discuss this amicably together.

Tristesa
I was once advised by a friend, with the best of intentions, that she thought it would be good for me to get a job - when exactly she thought I could fit this in with my 24/7 caring responsibilities I'm not sure! Image