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Taking all the responsibility and sacrifice - Page 2 - Carers UK Forum

Taking all the responsibility and sacrifice

Share information, support and advice on all aspects of caring.
Nice to see you posting again Lil r. I have been mulling your problems over as the parent of grown up children. If one of my sons became disabled I would not want to be seen to be intruding in their lives with their partners. Your in laws obviously have great faith in you and at the end of the day your husband is an adult man with a wife regardless of his disability. Also- does your husband want his parents to be caring for him? You say you don't want to ask friends. I'm sure my sons would rather have a friend in a caring role than me being their "mummy" again however much I would want to do it. I know that "friends" drop off the horizon when illness and disability strike so make the most of the ones you have and try to encourage new ones for your husband. Have you thought of the befriending schemes that might be available? I would have been lost without friends in my caring role so don't be proud- we have made some great friends along the way when my useless family all copped out.
Anne, often when I read your posts I can relate so well. Wish I didn't but you know what I mean. Well I hope you do ! Image

Robert
Thanks Dragonlady. Good to be back. x
You make some really good points, which I shall think about.
I can understand what you say about roles, but of course the same applies to a partner, who has now become mother in a way. When someone is so dependent, it is hard for any role to be the same again.
I totally get this point when it comes to intimare care, but I would never expect that. Any other care they can give just as good as I do. All I want is for them to feel the same sense of responsibility and not automatically expect me to do it. I am the only without a choice. As a result, I have sacrificed a lot. It is now effecting my career, because I am being pulled out of work all the time, my career is going backwards and I am an unrealiable employee and it's beyond my control. I have decades left of work yet. I just need to talk this one out, man up and ask. I'm just really scared as I hate asking for anything.
Lil r I agree with Dragonlady, your in-laws are obviously very happy about the way you care for their son and would not want to jeopardise their relationship with you both by offering help if they thought you might regard it as interferring. If you appear to be managing very well this could well be what they are thinking. Bear in mind we're talking about another generation here, where people kept themselves to themselves and didn't intefere in other people's lives and relationships.

I think it takes great strength of character to ask for help before it becomes a crisis situation.

Good luck and I would like to think that your in-laws are just waiting for you to let them help.
My farmer's wife friend and I were discussing this very thing just after Christmas. She always says that I should call her if 'there's anything she can do' and said she'd come and sit with hubby, if I want to go out (we had no PAs at that time). Then I pointed out that it was all well and good, but if the phone rings someone has to stand and hold it to hubby's ear - for the entire duration of that phone call and if it's a friend, it could be up to an hour holding the phone to his ear (speaker phones aren't private enough, so don't suggest one). If hubby fills his legbag up, it'll need emptying straight away, it can't wait cos of the risk of back pressure. If she made him a 'cup of tea' (as she suggested), she'd have to hold the mug and pour it for him, cos he can't hold anything himself. If his leg spasms, she'd have to put his feet back on the footplates and possibly pull him back into the wheelchair cos they make him slide down the cushion. SO >>> what exactly could she 'help me' with? She couldn't do any of the above things, she told me that and didn't realise what could happen if she did come round and 'sit with hubby'.
Hmmmm, not that simple is it?
And family? Don't want to know either. I really feel for both of you.
I just wish someone would notice sometimes that I'm absolutely exhausted rather than tell me my hair and my house are a mess and I'm overweight. I used to have a wonderful life, a handsome husband, travelling the world, riding a powerful motorbike, swimming on deserted tropical beaches. Enough money to buy a brand new car without finance, a house mortgage free. Now I'm unwell, widowed, disabled, with a disabled son and disabled mum, dealing with the Ombudsman, District Nurses, Adult Services, etc. some so incompetent that they add four and four and make eight and a half - no I'm NOT kidding! Totally and utterly fed up. There have been times in my life when I've very so very, very close to running away from all my responsibilities. It seems a very tempting idea tonight, only I hate the cold so I'll snuggle down under the quilt instead. Tomorrow's another day. At least I put my hair in rollers after washing it tonight!
Thanks fran. We have so many of the same issues. With complex disability, it is not possible for someone without knowledge to just jump in and help, too true. I feel for you x
Also, whilst I'd like to believe the comments about generations, and I totally get that, I also think if I listened to anyone say that they have to let work down and cancel their plans to see friends and then tell them shame I can't help and not explain why, I'd feel pretty crap. If someone was sacrificing their work and their friends and I had no plans, I'd be helping them, end of.
Big love to you bowling bun, being worlds away from an old life is very hard. Kind wishes x
Also, whilst I'd like to believe the comments about generations, and I totally get that, I also think if I listened to anyone say that they have to let work down and cancel their plans to see friends and then tell them shame I can't help and not explain why, I'd feel pretty crap. If someone was sacrificing their work and their friends and I had no plans, I'd be helping them, end of.
Point taken Lil r - I have a tendency to look for the best in people and get upset when there's none to find Image
This discussion is so moving and interesting.I have read everyones views so far.