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SubscribeToday was another Groundhog day - but my friend came to see us - she is great to talk to/with, but I realised that I had little to say! I always had an awful amount to say! When she left I thought I could sit and cry as my life has disappeared, yes I will look after my hubby - I understand what he needs - but just to be able to have my own life. Okay I can have friends in to help but there is intimate care, and I don't blame him being reticent to have them to help him. I do make an effort to get out and about - but it has to be early morning before I get him dressed etc... would love to wander around the local shopping centre - but always on a time limit -
However I really have to say that the NHS has been wonderful to us - and really support us! I just feel I am missing out on so much - I can only read so many books, listen to so much music and potter in the garden!
I will probably be alright tomorrow! It is day by day - even hour by hour! I think my problem is that my hubby looks well once he is up and dressed and no one knows what we go through!
Join the Carers UK website. All sorts of ways you can get support.
Yes it makes perfect sense. It's brilliant that you have been able to make some changes that have improved both of your lives. It's hard sometimes to avoid getting overwhelmed, but you have been able to clear a path. Best wishes
It makes perfect sense to me. I can remember feeling almost detached from the real world at one stage.
My husband looked well too (just very thin) and really made an real effort to act 'normal' in company. Other people carry on with their lives and have no idea what you're going through.
At times, you adapt well to challenging circumstances - but some days the reality hits. I varied between accepting things and feeling like screaming, so good days and bad days.
I posted ages ago.... since then though my husband's health has not improved...I seem to be getting better at coping! We are having help in the mornings to help get him out of bed which a) gives me about an hour to do what I want whatever that is...b) my back is better. We have had great support from all medical professionals this last 6 months.....
As I had so many replies to my first post I just wanted to say thank you and at last I feel I am being myself at last. There hasn't been a miracle other than I am looking after me and accepting what is happening. Does this make sense..?
Merry Christmas sue421. (apply for carer’s allowance)
You have a good Christmas too Sue.
I just want to say thank you for your replies....really helped me...have a good Christmas xxxx
Hello. I think carers are worth their weight in gold!
I am cared for by my hubby of 47 years and 2 ladies who come in. They do 28 hours, plus 2 sleepovers a week. And boy! do I appreciate all of it.
Sounds like you could benefit from a carer`s assessment...that would be for you and what about a care assessment for your OH?
Social services will see to it for you.
It is honourable to do everything yourself, but it is sensible to ask for help.
Why not think about it, eh?
Good for you. Thank you for the update, it is encouraging to know that our combined advices has helped.
Popping in again! A friend has offered to stay here and I go out for four/five hours...American Museum here I come! Not til Nov 1st but has lifted my mood immensely....I took on board all your lovely messages to me but we became thwarted by so many appts, visits by medical people all helping us..but interfered with all of our plans.but picking ourselves up again!
Right I am going to get on with today, and put lippy on!
Thanks everyone. Top of my list of things to do today is arrange for one day a fortnight...4 hours...to have someone in to sit with OH. In 4 hours I can do a lot locally. Thanks, for all the advice.
You are having a tough day. Tomorrow may be better. Be kind to yourself.
Very sorry to read of your distress, and no, you are not being selfish. Carers truly are the unsung heroes of society. Do you have a Carers' network or club in your locality? We have one in my town, funded in a large part by a local Charitable Foundation and they give excellent advice and support and events/activities to help alleviate the sometimes heavy burden of caring. Also, if your husband is suffering from a specific condition, is there a national organisation you could turn to for support? Even talking to other carers in the same situation as yours could be a great help and a way of finding new friends even online.
Luckygirl What a wonderfully supportive and generous post. I'm not (yet) in this position but will always remember your wise advice in case it happens.
I understand Sue, I also went through what you're going through. It is very difficult to be a carer. You feel that you need superhuman amounts of patience, strength - mental and physical. We're not superhuman though.
Our GP referred us to a hospice. Is there one near you? They can send people round to help in a practical way and a shoulder to cry on - both appreciated and much needed. They helped us to cope in what were very dark times.
Sue41... I feel exactly the same...my world is shrinking . I don’t know how long you’ve had the job of being carer to your husband, but I’ve been doing it now for 23 years. Sometimes I really think the only way out is for me to die first. But unfortunately apart from crippling arthritis I’m quite healthy. Still I do keep an ample supply of prescription painkillers for when I really have had enough!
Caring for someone you love is very hard. It does take a lot away from your own life. You need to seek as much help and support as you can. The carer needs caring for too
If you get in touch with adult social services and ask about having someone to sit with him while you go out that may help. The sitters are all checked so no worries about harm comes to him then you just sort out with them how long you want and how often, used it a couple of times for my husband. Good luck
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.
Sue21 - thinking of you and all those unsung heros/heroines.
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.
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!
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.
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.
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.
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