Don't want to feel I am being selfish

sue421

I can barely begin to imagine how hard it must be to cope in your situation, but you come across as a caring person who is doing their very best in a situation that we would all struggle with.

You sound like you need these .

I know exactly what you mean, It can feel like a kind of domestic servitude, but self=chosen, so it's not. and as you say that distance from other people and what can seem like trivial , inconsequential things that bother/ occupy them. I felt that I was not my own person, and it was no good trying to explain it to outsiders, they just didn't understand, and could make irrelevant, sometimes hurtful or stupid comments. and them I'd feel even more isolated, so I tend to avoid such conversations. it was more of a stain to be polite when one is so tired, and they can seem so shallow. guess I lost patience.
all I can suggest is finding some supportive websites, where they do understand, people in similar situations.
yet I wish that time was still here, I mourn and regret everyday, seeing how much more truly present I could should have been. long to be now, and cannot. long to be loving, when I look back on lazy selfishness, and the unique preciousness of irreplaceable individual.
sorry. this no help to you.
good luck to you.
power to your elbows, and everything else that needs it.

Of course you're not being selfish, sue41. You must be missing out under the circumstances, and you're bound to feel it. I hope you and your DH feel able to take up any offers of help you get - your friends will want to do what they can. Be kind to yourself.

It must be so hard for you.
I’m sorry that I can’t give you any helpful advice. The situation is as it is and you must feel that you just have to cope.
You say that the NHS has been wonderful. Does that include careers? Would he be open to a male carer to come in once or twice a week so you could have time off?

Thank you for all your messages....it is as it is ....

The hello sue421. There are charities that offer someone to come in and sit for two or three hours once a week. It is not long I know (from experience) but better than nothing and would allow you to go for a swim, meet a friend, have a hair appointment etc. Crossroads was the charity who helped us. They tried to “match” the sitters and you might be able to get a gentleman sitter. Are you claiming Carers’ Allowance which would allow you to perhaps pay a cleaner for a half day a week. Some cleaners would be happy to come in when you are out, make a cup of tea for your husband and continue working but be on hand to phone you, if you paid a slightly higher rate. You could speak to an agency to be sure that they are checked or ask around friends. If you go to Church would someone from the congregation come in to visit perhaps fortnightly or monthly? All these have been tried and tested personally and if more than one idea works you will build up some breaks for yourself. Also ask your husband and GP if respite care is available? I wish you well - it is so difficult but remember not to feel guilty about going out - you will be a better wife and carer for looking after yourself.

sue421 I do know what it is like , been through it all , I paid Carers to stay with my Husband while I went to my class and to a once a week club .
Family were great making me go out while they sat with him, he enjoyed the change as well
NHS carers came in to do the showering etc and were so cheery and helpful , they still stop to talk when I meet them out
You need to get help , our GP sent the District Nurse , and the Social Worker arranged the carers

sue421 - I fully understand where you are coming from.

Last Saturday my OH went into a nursing home, as I could no longer cope with him at home, in spite of live-in carers staying in the last few months. He needed two people to transfer him and I could not be that second person, owing to my own physical limitations.

As others have said there are sources of practical help (although they sometimes require determination to achieve) but I wanted to address your feeling that you are being selfish to want a life of your own, because I know how this feels. There were times when it hit me hard that I only have so many years ahead when I will be well enough to do some of the things I wish, and it was hard to know that these opportunities were vanishing before my eyes.

Caring is a role that is set up to make you feel guilty. The guilt lies in not being able to meet the loved-one's needs as we might wish to. But.....no-one is a saint; no-one can be unremittingly unselfish. It is crazy to ask that of ourselves.

Yes - I did get very fed up when I could not go to the normal social activities that had filled my life up until OH's illness became so bad that I could never leave him on his own, even for a short while. It was as if my life too was blighted my the illness. I could not go to choir, to school governor meetings, to visit my daughters, to help at the village fete etc. etc. - eventually I realised that if I did not find a way of being able to do these things, I too would become ill, and a poorer carer.

Now that he is in a NH, do I feel guilty about all the days when I got irritable at the daily grind of having to persuade him to take his meds when he thought I might be poisoning him? Or resisting when he want me to sit with him all the time and watch the same TV programmes over and over again that began to drive me nuts in the end? Do I feel guilty that I was not emotionally or physically strong enough to continue caring for him? Do I feel guilty that I was sick of shovelling up suppositories or fitting catheters?...........of course I do. But I also know that I have to forgive myself for not being super-human - none of us are.

It truly is an emotional roller-coaster; but I want to say to you that you are NOT selfish. You are a normal human being who is being sucked into a shared sick role along with your OH. And it is important to resist this as what you finish up with is 2 sick and unhappy people; and you cannot care for him if you are worn out, unstimulated and unhappy - that way lies resentment.

Decide what level of caring you can personally cope with (and it is different for everyone) and give it your all at those times, and arrange care for him during the rest of the time so that you can retain some life for yourself. I found help for sitting with him from friends (whom I paid) and from voluntary organisations/care agencies etc.. I would come back from my outings refreshed and ready to pick up the reins again,

Please do not feel selfish.

Sue421
I have been there so OK also know just how you feel.
I paid for a carer to come in 2 afternoons for 3 hours but I didn't find it satisfactory, so with the help of SS I got my H into respite care one full day a week.
It cost £60 and was a godsend.
I could go out if I wished but I also could stay in and potter with the house to myself.
Good luck with finding some help.

Luckygirl, what a beautiful post.

Thank you for sharing everything with me....at least I know I am not horrible or selfish. Last evening I had a 'talk' with myself! First on my list is to look after me, starting today I am going to look at my diet...get out for one hour taking photos which is my hobby.
They always say there is your guardian angel! Well he was at work yesterday, I was contacted yesterday evening ...could I go along to a local Harvest Lunch and take photos! I jumped at it! A reason to get up and put lippy on!
Must get on with the normal routine already feel I will cope with all this.
Thanks for being there x

That's what is so good about GN; emotions you might hesitate to express and things you might not say even to a close friend will undoubtedly generate some good advice, support and kindness.
You are not selfish - you sound like a tired, ground down human being who needs diversion in a life that is currently so trying. Enjoy snapping away at that lunch! x

Have you thought about getting a carer for say one afternoon a week to give you some me time? It might not seem much but would also give you something to look forward to.

I am in the same situation . I care for my husband too . The difference is i don't have friends visit . My husband is wrapped up in his own little world and goes on a politics and brexit , really no interest to me . The only person I have to talk is my daughter and i have to keep an happy face for her . I do wonder what I am missing ? I do love my husband but I do wonder how much longer i can go on like this ,before it starts to effect my health .

Pleased to hear that you are able to do something for yourself. It's vital to take care of yourself, so that you can continue to look after your husband. Don't feel guilty! Everyone is entitled to some down time, no matter what that involves. We are not machines and even machines need some fuel to keep going! XX

I think lucky girl has said it all caring is incredibly hard and brings out all emotions good n bad but you are not a machine of course you are going to feel you are missing out and you are, my heart goes out to you, I don’t think anyone can understand until they actually go through the situation themselves and so many do every day like you, I did too, apart from getting a break every now n then, even though there is deep love there I think it’s completely normal to feel how you are feeling, all the very best to you and don’t forget to look after yourself too which is just as important

I wonder how many men would say the same ? We, generally, do seem to land up caring and it’s mentally and physically hard going.

su421 - you need a Male carer to come in and provide a sitting service while you go out - I know what you’re experiencing - you will eventually feel cut off from the rest of society as your current ‘wifely’ duties will transform into ‘Carer duties’ and ultimately become ‘nursing’ duties - you will be totally consumed and may even come to resent your husband but certainly resentment or otherwise, you will lose your identity - as a Bereavement Counsellor I see this frequently with women who start off just like you - there are many years ahead of you and you need to make a space for a life of your own so please involve social services and get a Male carer in to sit with hubby.

Oh, Sue, I do feel for you. And it is fully understandable why you feel your life is passing you by while you're caring for your husband. I have no helpful advice as others have said what I would have said, but I'm glad you're able to get out and do some photography.

Sue21
You need support please don't try going it alone. There is much out there where your needs are concerned.Contact the British Red Cross /Age Concern, and no you don't have to be elderly to obtain their help.you will find your local representatives by going online.

sue421, if you don't take a break you will not be able to cope for long. You need a carer to come in for one day a week, your day to go out or do what you like. Arrange it somehow, pay for it if needed, because, longer term, it makes sense!

No, Sue, you are not being selfish. There is some wonderful advice on here from other posters (Luckygirl your post made me cry) and it seems that you are already putting your mind to improving matters. The changes you need to make are mostly on your head, which is something you have realised. Change that diet, take those photographs, put on that lippy and - if you have others who can sit with your husband - look around and join a camera club or some other group who share your interests.
And, whenever you need a bit of support or cheering up, come back onto GN and we will all be here for you.

Sue21 - thinking of you and all those unsung heros/heroines.

Sue it must be so hard for you as well as your dh. You should pester SS until they can provide your dh with names of a male carer who you could pay for a couple of hours a day. You must take a break or you will go mad or become ill.