Dealing with Selfish Caree

[Stacey]

This morning I ended up screaming at my caree, my husband. Every day I take him to the pub to see his mates, which is the only time he gets out of the house and his bed. I know it's important to him. I've delivered him there and picked him up every day for the past two years.

Easter Sunday evening I'm going to our local theatre with a friend. I asked him to skip the pub that day. Why? His health has been getting worse and if he's at the pub for more than his usual 2'ish hours he can barely walk and is in a generally bad state. It's not from drinking too much, it's from being in one position too long. Last night he stayed at the pub later than usual celebrating a friend's birthday. When I got there he could barely stand and his portable oxygen gizmo was empty, which he had not noticed. (He had a spare with him.) He needs oxygen 24x7 and was getting close to the point where he would have been in trouble.

Even when he was better I would worry the entire performance and rush out to pick him up and take him home. Now, I could not enjoy myself knowing he was not safe at home. When I asked if he would stay home all I got in return was a "no I am not" and a load of abuse. "You're psychotic, you need help, etc." It ended with me telling him what I need is a life and that he is the most selfish person I've ever known. I was not in a good frame of mind to begin with - I had spent the day before changing his bed three times because of incontinence (a new problem) and spitting up mucous. Plus, I had just told him about a doctor's appointment I made and he complained about the time, etc.

I am really at the end up my rope. My entire life is governed by him, his illness and his needs.

Sorry, but I'm really on the edge and need to vent. I'm worn out. I don't care whether he appreciates what I do or not. I don't care if he even knows everything I do for him or how my life is dictated by him. All I want is some time where I don't have to think about him! Is that too much?

[Myrtle]

Well I don't blame you for screaming at him, all you want is one night!!!

((((((((((((((((((((((((((((((((((hug)))))))))))))))))))))))))))))))))))))))

[cheryl]

((((Stacey)))) no it's not to much to ask, he is being unreasonable and selfish.
I used to have similar with my mother if I either couldn't take her to her day centre because I was ill, or if I just wanted to go do "something" else for myself once in a while, you'd think the sky had fallen in it is very hurtful and upsetting when the people we put ourselves out for so much of the time are so uncaring of our needs etc. Feels like one way caring!!!

[Simon Turner]

Not a nice position to be in, is there no one that could watch him for you while you are out? (crossroads etc)
Hope you are able to get some "me time" soon, all carers need to be able to take a day out here and there, it helps us to regenerate and refocus our minds.

((((HUG))))

[Anne001]

Oh, Stacey, I don't have anything helpful to add but just wanted to send some hugs your way. Yes, he is being totally unreasonable and you should not be treated that way. It is difficult enough caring without having to put up with that. Although, for what it's worth, my caree / mum is not selfish and yet, still an hour does not go by without me thinking about her / doing something for her. I think in some ways it is the most difficult part of caring - the inabilty to get a proper break. So ... vent away, that's what we are here for and we most certainly understand.

[michael parker]

Always remember that you have a life too,and it is just as important a life as anyone elses.

[Stacey]

Thanks everyone. Of course now I feel guilty because my husband is unwell today and most likely starting a chest infection, argghhh.

Anne, you hit the nail on the head. No one but other carers understand that your caree is always on your mind. My husband still talks as if he's tough and independent, I wish it were true.

The most bittersweet thing is that in my dreams he's healthy and it's the same for him when he dreams.

All that said, I am going to the theatre and he is NOT going to the pub on Easter.

[bowlingbun]

Stacey,
If you are going to continuing caring you need to keep well mentally and physically. Your email shows that at the moment you are teetering on the edge. When did your husband last have a needs assessment? If he's become incontinent recently, and he needs oxygen 24/7, it's time for a review. You need to have a review of your Carers Assessment too. If you are pushing your husband in a wheelchair, that's hard work. Could he manage a mobility scooter, or would you like a powered wheelchair? Do you have everything you need at home to help you. Dishwasher? Tumbledryer? These simple things can make a real difference if you have room for them. What about his mates? Couldn't they pick him up and take him to the pub now and then? I have a lovely mum but she's very frail, and the more frail she is the more she concentrates on her own needs forgetting that those around her have needs herself. It took counselling for me to start saying "No" now and then. Mum has found other people to do the things I can't. You definitely need some respite, could one of your husband's mates come and sit with him one afternoon a week - perhaps one of them is single and would like a home cooked meal in return? One thing is for certain, you need more help if you are going to continue caring.

[Stacey]

Hi bowlingbun,

Thanks for your suggestions. I'm okay in terms of help and aides for my husband. He's actually on NHS Continuing Care and I declined having careworkers to help him with his personal needs. I've had them before when he was very ill and although it was great at the time I have more freedom without them. My husband is beyond the point where he can use mobility scooters, we have two sitting in the garage now.

It's not so much the trips to the pub that have an issue with, it's him being there for too long a time and ending up in a bad state. He forgets to check his oxygen and because he does not move from his seat getting up again becomes more difficult. His friends are actually very good. They even take turns to "Tony sit" (my husband's name is Tony) to keep him company at the pub. However, he's a grown man and if he does not want to leave, he will not.

The incontinence is new and his next appointment with the doctor (Monday) is to investigate further.

I have a week's respite coming up in May. That's another story, I visit my sister once a year and she's disabled with an acquired brain injury. Still, I don't have to care for Tony so it's a break from him, which is what I need.

There are just days when I get totally fed up with the situation. Tony has always been a stubborn, difficult person and there's no change now. I know he appreciates what I do ... his friends tell me so and once in a great while even Tony will admit it.

I'm in a better frame of mind today. I just need to accept there are days when everything seems too much to handle.

[bowlingbun]

I think we all have days when things are too much to handle, if we are honest. I am always much more sensitive when I'm tired. I had a good day on Thursday until I found out that Social Services had decided that they wouldn't follow an agreed procedure to settle a long term problem. I always try to be polite and considerate but if I'd seen the people responsible to speak to they would have discovered that there is another side to me!!! I had a sheltered upbringing, but now socialise with engineers, lovely people but their language is "flowery" to say the least.