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Newbie - would be nice to talk to people in same boat - Carers UK Forum

Newbie - would be nice to talk to people in same boat

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Hi all,

I'm 28, from Essex and live with my Dad who is 54 has COPD (Chronic Obstructive Pulmonary Disease) he has had it for quite some time and gave up smoking a few years ago. Over the last 8 months his health has deteriorated quite rapidly and he is now on oxygen 24 hours a day and struggles to do much for himself at all. He relies on me to cook/prepare all his meals, run errands as well as all other normal household tasks. I work full time as a support worker and have little support from other family with taking care of my Dad. My sister comes round one night a week to cook dinner and give me a night off but she can't really cope with it all like I do and he will still ask me to do things while she's there. I find it hard to get time or space away from the situation and even if I do I finds self worrying and feeling guilty for leaving him. In general we get on quite well but at times we can argue and snap at each other due to frustration at the situation from both sides.

People do try and be understanding but they don't live it everyday and only see snippets of what is now my life. Some people seem to think he is 'milking' it and can do more than he makes out which is simply not true, they just only see him when he's sitting still and not fighting for breath and this makes me angry. I have such mixed emotions all the time, feeling resentful and angry one minute and then guilty and so sorry for him the next. When people say I need a break or it's natural to feel this way I just think he's the one that's worse off and it's my duty as his daughter to look after him.

I came here I guess to just not feel so alone with it all and talk to others that understand and won't judge me for how I feel.

Thanks for reading!
Hi Lala,

I'm pretty new to this forum too, but I'm in a similar situation (I'm 25 and live with/care for my 45yo mum who has COPD and is also on oxygen 24hrs a day, and also a 10yo brother). Firstly, I'd like to say I'm amazed that you've still managed to retain some aspect of your own life (having a FT job)! I'd love to be able to work or go to university! So, go you!
I completely understand the mixed feelings for your dad, I'm the same with my mum. One minute I'm full of anguish at being stuck in this situation, and the next I feel insanely guilty for even feeling that way towards her. I think it's a really normal thing to feel, given our situations and the situations of most carers.
Do you ever feel like you can't just drop your plans and go be with friends and do what YOU want? I get that feeling a lot. Although, sometimes I've got myself so depressed and isolated from 'normality' that I don't want to go out or see anyone.
Remember it's not your fault that your dad's in this situation, and you are entitled to YOU time. It's nice that your sister visits one night a week to help, but if your dad doesn't leave you when your sister is there to help, maybe you should go out whilst she's there and do something for you?
I'm not sure what else to say, except that you're not alone Image
Hi Raenbow,

Firstly thank you so much for replying, as sorry as I am for you in your situation it is nice to know that I'm not alone.

I pretty much work 3 long days so I can be around for Dad most of the time, I love my job but with the situation at home I'm finding myself resenting it sometimes as I go to work and care for people then come home and carry on with Dad. Some days I just feel full of self pity and just want someone to look after me for a change, I'm sure you get that!

You hit the nail on the head there! I have suffered from depression since I was 16 and recently started having cognitive behavioural therapy, the main thing my therapist wanted me to do was set aside time to do things for myself, even just for 15 minutes a couple of times a week. I did it and I felt good for it but on the other hand so guilty. Until then if I did have a little bit of time I, like you, found myself with no interest in leaving the house or seeing people as it just seemed like too much effort. What I find hard is never just being a 'normal' person. If I want to go out for the day, pop round a friends after work etc it's never that simple, there's so much to plan and work out so Dad is looked after that most of the time it's just too much hassle so I don't bother.

I feel like I've lost my identity in a way if you understand. Instead of being someone's friend or daughter and people enjoying my company I just feel like a carer, someone who's sole purpose is to take care of someone else.

Yes I have thought of that when my sister comes, it just frustrates me that my home can't be somewhere I can relax, and if I want a break from it I have to go somewhere else and it's just not the same is it?

Do you get any help at all? I take it you are not only caring for your Mum but taking care of your brother? That's a lot for someone to deal with on their own.
Hi lala and welcome to the forum. I see you have already met reanbow Image
I would agree with your therepist - take some time just for you and please, please dont feel guilty. You need to look after yourself so that you can continue caring, otherwise you will burn out.
Hi I'm new here, my husband also has copd he's been ill for ten years but the last three have been really bad, I'm his carer and because of the length of time this has bed
en going on I'm finding it so difficult. He can't do anything for himself and I get so tired, he goes into a hospice for a week every two months to give me a break but he hates it and I feel so guilty for making him go, the hospice say he should be in a nursing home now but he begs me not to do this to him and I just couldn't. We have been offered a full care package but this just didn't work for us as in I found it less stressful without all the intervention, I can't remember what a normal life is like, but I don't know how much more I can take, three years ago he was given less than 12 months to live and last June they gave him 2 months, you mentally prepare yourself for this and still here we are..... Thank you for reading my post I'm so glad I found this site.