Share your ideas about the practical side of caring.
Does it help the patient if a visitor just sits with a sufferer whilst they sleep? My Mum has a few moments of lucidity here and there but spends most of her time asleep. Visitors have stopped coming because they say there is nothing they can do except sit by her side feeling useless. I feel sure just having someone around helps her even if it does wear her out.
I've had eight operations. When I was very poorly, tubes coming out of various places, it was a huge comfort knowing my husband was near me, even though I was too drugged up to talk much. However, I was in no state to want friends to see me like that. I've had more ops since my husband died, so miss his love and support.
No, I wouldn't have wanted friends to see me in that state either (that's why I don't want an 'open coffin' because I don't want to be stared at when I'm dead - how daft is that?)
Are you being kind and saying - OK have visitors whilst she's awake and responding, but ask them to leave when she gets tired and falls asleep? I find them 'useful' if I want to pop out to the shops or take myself off for a short walk, (bit selfish of me). She's not above telling people to go home if she gets at all rattled and can very rude at times :) Otherwise there'd be only her and me and a carer twice a day for 20 mins.
If visitors help YOU get any kind of break, grab them and chain them to the bed!!!!!!!!
I was thinking more of visitors in hospital, rather than at home.
Yes, chain them to the bed, leave coffee, biscuits or cake they'd have to love, just anything at all to get some time out.
Have you had a Carers Assessment, which should provide someone to sit in with your caree so you get guaranteed time off?
(Laughs hysterically)!
I've had so much 'help' from professionals I'm thinking of employing a secretary to manage my grants, benefits, tax help - you name it, I'm claiming it - as I expect most carers are - and very useful they are too. But I see you all understand the desperation we all feel by needing time 'off'. I suppose I was trying to justify my willingness for someone to just sit there by telling them my Mum knows they're there and appreciates it - whereas its ME who appreciates it! I really am a selfish cow.
She was very rude to the well meaning ladies sent by the Assessment people and sent them away by throwing a tantrum and crying, whereas she greets old friends with smiles and chats (about rubbish) for about 15 mins, then she just goes to sleep. I use the time to get my hair done or sit in the park in the sun, and go home after about an hour.
Its bliss, but the guilt eats at me.
DUMP the guilt. You are doing your best, and without you I suspect residential care would be the only option left. Feel proud of what you are doing, you ARE entitled to a life of your own.
I'd go one step further and get those visitors to do something useful while Mum is sleeping, folding clothes, peeling a few veg, a little light weeding etc.
Encourage them to see themselves as respite sitters for you rather than social companions for Mum. They should be welcome to bring their own knitting, books dvds , whatever helps them pass the time. Id even suggest putting a rota in place to help cement the idea of giving you regular break rather than ad hoc social visit
Definitely dump the guilt.

Sleep is a carer's best friend - ours and their's! ie, when THEY sleep, we get our lives back.....
Oh how I would love to have someone to do the ironing!
Mum exists on chocolate and cake (GP says since she refuses the fortisip and similar just let her eat whatever she wants, forget nutrition) and we have managed to get her weight back up to over 6 stone last week which is a major achievement, I usually have soup or a sandwich so we don't have many potatoes to peel. Weight watchers ready meals are handy for me because they aren't too large and I'm overweight anyway, I'm hooked on satsumas at the moment but Mum says they're too sour.
No, I'm happy with just a sitter.
You have made me feel better though, re the guilt. Other people always seem so upbeat and cheerful don't they?