Guilt

Hi all

I just wanted to pick up on Nicki's comment about how she struggles with guilt, trying to balance work and her role as carer as it did really resonate with me (so don't apologise Nicki!) I am currently signed off work because initially my husband was so ill with jaundice that I was unable to leave him for any length of time (I would need someone to come in and sit with him while I nipped to the shops). He is now, in comparison, fairly well. We were told his tumour is inoperable (due to blood vessel invasion) and the chemotherapy & radiotherapy planned is to keep this horrible disease at bay. He is at the end of cycle two of his chemotherapy treatment and coping extremely well. He relies on me so much though to remind him to take his chemo tablets at the correct times, along with his other meds and to make sure he eats regularly and healthily and generally to get all the things done around the house so that he can rest as much as possible (the fatigue is the main thing he struggles with, being a previously fit and active 46 year old). He knows the main thing I struggle with is the guilt about not being at work during this time and he tries to reassure me that I shouldn't feel guilty, that he needs me, that I should take this (precious) time off work (having earned it ten times over the years he says!). Not knowing how things will pan out, I also wonder how long we can afford financially to do this...will I regret not going back now because he may be more in need later...if I went back, would I regret just not spending time at home with him when we may not have much time left??? So many questions that I ask myself every day that get all mixed up in my head with a large helping of that thing called guilt. I wish I would be everywhere, doing everything for everyone, every day (like before!!) Since my husband's diagnosis, I feel like I am constantly not quite doing enough for anyone all the time! Is guilt an issue for other carers I wonder, or is it just me?

Thinking of you all, as always, in your own struggles.

With love

Deb

Hi Deb

It's nice to know that I'm not alone in the guilt stakes! Actually I think it is a human condition...we are programmed that way. If it helps at all, I took 10 months out after Ted was diagnosed - we are unusual (and very lucky) in that he is beating the statistics and we're now more than two years after diagnosis. Sure, not working does mean you take a financial beating but for me that 10 months was so precious I wouldn't have had it any other way. Only you know what is right for you - follow your heart.

Love

Nicki x

Hi Deb

I, too, have been through the same experience as you - feeling guilty at not working and wanting the normality of being at work to take my mind off things, but knowing I should be there to support my husband. I was signed off for 2 months last year, went back for 6 weeks but had to be signed off again in January because he was getting very depressed at home on his own. I'm off now because I don't have any other choice - he now needs constant care and can't be left at all. I struggled with the "what if I need to be off later on" thing and "can we afford for me to be off", but at least there are some options on the financial side of things.

Firstly, have you asked if you can reduce your hours at work? Start late, finish early, or work less days? Carers have a lot of rights now, so employers have to be flexible to help them out. Got to www.carersuk.org and read up on what is available to you.

If it's just practical things, like your husband's medications, you can get a whole range of pill containers which will split his meds into different sections, ie morning, lunch, night etc. Some of them even have timers built into them! Or maybe you could text or ring him to remind him to take them. Leaving meals ready for him to re-heat in the microwave may be an option if he can't cook anything himself.

Our hospital put us in touch with a local cancer charity, who helped us through the minefield of what benefits were available to my husband. Also, if you earn less than £400 per month, you can claim Carers Allowance (see www.direct.gov.uk). You can claim even if you are on statutory sick pay. Macmillan also do a booklet on the financial side of things.

Ask your mortgage company if they can reduce or stop payments for a short time, if that would help. See if your mortgage has any serious illness clause. Ours paid off the mortgage when my husband was diagnosed as terminal.

Some pension companies can pay out early for serious illness, too. Check to see if there are any options for you there.

I have been able to do so many things with my husband while off work and have built up so many happy memories, which I would have missed out on if I'd carried on working. Don't be so hard on yourself - you can't do everything for everyone. People will understand that your priority has to be your husband right now, and you too need time for yourself, or your will burn out.

I hope your head will clear and you feel you've made the right decision, whatever you decide to do.

Best wishes

Ellie

x

im new to these boards, and want to offer my suport as i know how u are feeling as im going through the same thing with my aunty, she actually went to the doctors and got put on the box cause she jsut couldnt leave my uncle and he is so dependent on her now.

i also wnt to thank ellie for putting on the list of different benifits and help fiancially that you can get, i have been looking for this for my aunty for the last weeks and knwo i have it

thank you

Becky x

Thanks so much for your supportive replies Nicki, Ellie and Becky.

I haven't been to work since the beginning of January, and it is a relief that this isn't unusual. Gary's chemo/radio treatment, if it keeps to planned timescales, will be complete at the beginning of August and ideally I would like to be there for him every step until then. I daren't think beyond that point as it is obviously impossible to predict how successful the treatment will be. I know Gary is frightened and the fear is isolating and lonely for him, so I always want to be there - if I was at work not only would I physically be away from him but my thoughts would be too, so I appreciate why you changed your mind about being at work, Ellie, I think Gary would get very down too if he spent too much time on his own. To know that you had 10 months off, Nicki, reassures me a lot. I have never had more than a day off work (and I would have to be really ill), so it is just a matter of justifying it to myself. I am getting there - your comments have helped. Thanks for the info with regards to carers allowance, Ellie. I had wondered about this - something to look into when my sick pay drops. Gary's HR representative from his company is coming out to see us later this week, so we will hopefully find out a bit more about what they can offer, financially. We are OK at the moment, but I guess we should start thinking ahead to ensure we don't get into any difficulties. It's crazy isn't it - faced with this awful disease to fight and to make it worse, you end up stressing and worrying about all these other things as well.

Thank you once again. Thinking of you all.

With love

Deb