Cancer has made my OH selfish

Hi shady lady,

I totally get where your coming from.  

Being a Carer is an isolated and lonely experience. No one understands what we do how draining it is and how the hell we keep it all together? Guilt is a major feeling which I feel let's us down. 

The selfishness and expectations from our OH is overwhelming. The angry spats, the unrest and awful atmosphere it's like living on a knifes edge! Some days I actually hate my life

The unsupportive family who think they are there for you and care for their son have absolutely no real clue as to how hard life really is, your right they all still have a life away from this nightmare! I call them living in happy bubbles. 

Look at this positively if you can, you are a strong woman, stronger than a normal wife, mother you are amazing for your courage, determination and resilient standing. You belong to an elite group of carers who share this incredible bond and knowing we are not really alone, we are superhuman in the ways we cope. You are fantastic keep telling yourself this because you are!!

Sending you positive thoughts xx

Hello there

Firstly I'm so sorry about your husband and me also new to this forum.

My husband was diagnosed 2014, 6 ops, innumerable rushes to hospital and now in radiotherapy for an incurable desease.

My children are older 14 and 16 So I cannot really imagine doing this with little ones. 

I'm really lucky to have a husband who is really generally positive despite the prognosis. But that's not to say we've not had our issues. This last year has been hard for me. I've been screaming at the kids and generally feeling like I'm about to crack. 

I sat in my car one day and thought I'm just going to go and stay in a hotel tonight ( which I can, my kids can look after themselves) but phoned my sister and had a 2 hour moan. The chat gave me time to get over my rage. Then went home feeling guilty.

No one gets it except us. It's really frustrating. This year I was 50 and luckily have amazing friends but they all expected me to have a big celebration like they all had. Without moaning it's very difficult to just say No it's not happening until I feel I want to celebrate. They feel bad if they feel you aren't coping. Same with family. No one wants to hear my future is bleak my OH won't see his daughter walking down the aisle etc etc but you know what, I've decided to tell them that's how we feel. You'll be surprised at how much help you'll get with a mild moan now and then. 

So now I've decided to take off the Brave Face with OH's family. No I'm not listening to your problems YOU can listen to mine. Had a funeral on his side last week and I decided no I'm not going to say I'm OK because I'm not. Consequently 2 of his cousins are seeing him next week and people are calling looking to help. 

On a practical level I would say try and think of things that could alleviate your stress. Take to kids to Mc Donald's whenever you want. Buy ready meals for them. it won't kill them for a while. Are they at nursery? Could a parent take them after school. My children's friend's parents were amazing when they were younger. Start asking for practical help. And don't go home sometimes ( if that's possible) go and be on your own in a coffee shop or go shopping buy something nice. Is he too ill to go out, could you go out together? 

And finally both of you should think about some therapy. Both together and seperately maybe. It might take a while through NHS. We went to Relate earlier this year ( they saw us immediately) and even the first session was amazingly helpful. And it was only £20. Also talk again to any social services that might be able to help with cleaning and coping with the children. Tell them you're on the verge, this is not the time for being superwoman. Your sanity is at stake. 

And just like the other poster said you are doing an amazing job,  there will be ups and downs and you're trying to come to terms with a new life, a new person. So is he. It's not easy but keep going and hope all gets better for you. 

When your husband's energy comes back hopefully he'll start feeling mentally better too. 

Take care of yourself 

Kim xxxx

I can relate to everything you are saying and the replies are as always such good sound advice and very helpful. I look after my Granddaughter twice a week and so know a little bit about where you're coming from. I've had 9 years of being a carer always thinking we may not have too long together then he'll get really ill and then pick back up again and I just start all over again. Now we've been told it's terminal and he has a year to live and I'm back to square one in one sense.

We've lost family and friends over the years as they just don't understand and the guilt has been too much to cope with at times. My best friend tells me off for not keeping in touch but I don't want to always have tales of woe and upset as I've lost so much already I don't want to lose her as well because I've got nothing good to talk about....people just don't understand and never will unless it happens to them. I actually still struggle to forgive my family for their behaviour towards us.

I suddenly realised last year that this is my life too! Despite the guilt I started to go out but plan and organise. Just because they're ill doesn't mean they should treat us badly. So, whenever mine is unreasonable now I tell him, walk away for a while and then go back as if nothing's happened. Sometimes he'll still ignore me but I just carry on, chat and get on with it. They do become very selfish and we let them get away with too much because they're ill.

When I have my Granddaugher for full days I take her out for a few hours and come back to check he's ok. I've caught him being unreasonable with her at times but as he's usually so good I've put that down to how he's feeling and struggling with having a demanding toddler/child around (she's 5 now).

Plan for a few hours out, take yourself away, take the children away for a few hours.  Set a time, even if it's after collecting the children from school and taking them for a milkshake and a cake just let them have some time and you can have a coffee and some time away from the house. I always tell him where I'm going and how long I think I'm going to be. Sometimes when I'm a bit longer he gets upset but I just brush it off as life happens - traffic and hold ups! I will call when I can.

I go to Aqua aerobics twice a week and work a lot from home so have to get out. I also go out twice a month in the evenings with my female friends and run a crochet club twice a month and I try to stick to it. Sometimes I can't go but if he's really ill they know my situation. I won't say they understand because they don't, but they know my situation. My husband even used to choose all the tv programes we watch and I must admit I got sick of watching the same thing over and over again. So now when I want to watch something I tell him that there's something I want to watch on soon and I get to at least watch something different for a change. The same stuff over and over again drives me insane! I've seen every series of Criminal Minds 3 times or more!

Try and plan a bit around things and space out your time to suit your needs. Take good care, big hugs. x

Oh yes my OH has been unbearable at times and I will confess to wanting to get in my car and not coming back. He often directed his anger, fear and frustration at me and our young son, picking holes, belittling and putting us down. I lost the plot and told him if he ever talks to our son like that again, he would be doing this alone. It worked, I still get the moaning and criticism but i can ignore it now.

OH is in hospital recovering from sepsis at the moment, it was touch or go he'd pull through. I must admit being strangely happy when he started being moany as it meant he was getting better! 

Make time for you and the children. Tell people what you need and I've found they usually happily help but sometimes you do have to literally spell it out! Take whatever help you can get.

I don't enjoy being a carer, i do it because I love him but I don't always like him. I used to feel so guilty about that but someone pointed out that although I'm not ill, cancer has taken over my life too and there's a real possibility that I will face a future without the OH and difficulties and challenges that will bring. 

You really are doing an amazing job, take care xx

I could have written parts of your letter! 

It is agonizingly difficult to try to keep things as normal as possible (when they're not).  It's especially hard when everyone goes home to their normal lives and then make excuses as to why they aren't calling or worse, not visiting.  It's devastating for my husband and adds to the already low state he's in. 

You're in an especially difficult situation b/c you have small children who also need looking after.  They don't deserve this either - but here they are, caught in the middle and not understanding a lot of what is going on. 

But, with that said, you've got to take care of yourself too.  You are important, as important as they are - and you do yourself no good by running yourself into the ground.  I know, I've done it. The worrying and anxiety is enough to paralyze you - and on top of it, you've got doctor's appointments, chemo (in our case), isolation, loneliness and fear as to what the future is going to hold for you.

I'm not much for anti-depressants but this morning I am considering them.  I've found getting out of the house really helps, meeting friends - and even spending time with my OH and banning any talk of cancer from the conversation for a few hours.  

Please hang in there and know you are NOT alone in this, this community is all about connecting, sharing and exchanging information as to how to cope with this. 

None of us asked for this! And, I absolutely despise what my life has turned into. I hate it!  I want my normal life back but know I can't and won't have it and it makes me unbelievably sad. 

You can rant and rave here to your heart's content among those of us who understand what you're experiencing - the ups and the downs.

Bon

Hello Shadylady,

I get you. I absolutely utterly totally get you.

My husband had also had a stem cell transplant and I sometimes think his empathy-gene was removed at the same time.

Golly, I have nothing to add of any use. I'm knackered, fed up with doing everything and then all the extra, fed up with driving and cleaning and watching and ringing the flipping hospital, fed up with the loooooooong recovery time, fed up with the "is he better yet?" rubbish from other people and COMPLETELY fed up with being told to "stay strong"

And I'm having a ranty day today!
Custard x

I know how you feel Custard - I am all those things and more.   Margaret x x   

Rant away Custard, I think it makes us all feel better just because somebody else actually understands us. I think I'm permanently knackered. Take care ladies. Big hugs. x

Hello Shadylady,

I'm in a very similar position with two young children (3&7). Also your husband was diagnosed about the same time as mine and it seems they share the same behaviour.  I so wish there was some advice I could offer. I'm really just saying that you're not alone. 

You are doing an amazing job. 

S 

Hi Shadylady and all you wonderful carers out there,

What a honest and frank view of how life can be for us carers out there, life can be very tough at time and lonely, I should know I have been a soul carer for my husband since he had a RTA back in 1981 where he sustained a spinal cord injury and was paralysed from the chest down.

We have had a lovely life had two sons who are now grown up and we are expecting our first grandchild any day now.

We now have a cancer battle on our hands as well after my hubby was diagnosed with Neuroendocrine tumours to his pancreas and mets in his liver, we are to start treatment this week.

I like others have said feel isolated at times and have been desperate for a break at times I feel like the light has gone out temporarily and I'm uncertain about our future ,

All I keep telling myself is hopefully tomorrow will be better and hoping to see some normality come back into  our lives soon.

I don't need to say stay strong because I know you are as I am and all other carers are , accept help when you can and try to make time for yourself something you enjoy , I'm trying and when you've got someone dependant on you it's very hard , but essential.

Take care love,

Pommy Mommy x