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Looking after a loved one with cancer? This is a safe and supportive place to share your worries and emotions. Please remember when posting that this group is for Carers only.

Already tired

Karan012
Posted by

I guess I’m not sure where to start. I feel trapped , exhausted and broken. I’ve read threads here where some have cared for the OH for years but for me it’s only been 3 months since my wife’s brain tumor was discovered 2 weeks ago told it’s rare cancer and they need to operate again and then radiation then chemo. 

I’m exhausted from researching treatments , contacting doctors, doing housework, bills etc. Our 2 children(5 and 8 year old) have been reunited with us after 3 weeks with my parents while she underwent all the tests etc. 

every minute alone with her is TORTURE, spent with her telling me how I’ve let her down either directly or by failing to stop someone in my or her family from agitating her. I keep trying to remind myself that right now she can only see what matters to her but she does not care about anyone else. She gets agitated at our children , at my mother and me and spends most of the time complaining about everyone around her (all there trying to help) . She insists we are all acting insane and she is the only reasonable one . I have stopped defending myself and just nod and try not to give her more ammunition. We saw a family counselor who tried to get me to understand that my wife’s control of small things may be important since so many big things are out of control. My OH has taken that as a third party confirmation that I am letting her down. 

Today she told me I broke her heart and ruined what could be her final memory with our children after we got into an argument because I said I would take the kids to the bathroom before buying popcorn at the movies when she had said do it after (couldn’t  take them with my hands full)

I know it’s probably pent up fear of the upcoming surgery and what else is to come. She has Neurological difficulties which she will not accept but will announce when she gets agitated. Any disagreement (usually a conversation she aggressively starts with me or anyone) ends with her threatening she feels a seizure coming on. 

We met in high school 22 years ago and have been together ever since. I cannot imagine a life without her nor where my needs matter again with the way things are.  I’m finding it hard to see her the same way as I did as in my eyes she is turning into the most selfish cruel person(at least to me and rest of the family). I can’t imagine how difficult it is for her but she is punishing everyone who has tried to make it ever so slightly less awful.

At this point I’m really thinking she’s better off without anyone around her because just seeing me makes her irritated but I can’t leave her alone because She’s at seizure risk. No one else wants to be with her so in a few weeks it will be just me and our young kids. 

I feel guilty but I really don’t think I have it in me to keep taking her abuse. Initially I would react argue and demand some consideration but now I’ve given up as it causes less agitation.

from reading other threads We are early in the journey but I don’t know how anyone does it as it already seems like a constant beating and the worst part is I don’t recognize the person my beautiful  wife has become.

jackied
Posted by

Good morning

I'm someone who has been on this journey for sometime now and please do believe me when I say "IT IS NOT YOUR FAULT"

Do not feel guilty

You are never going to be right.

Life will never be the same.

It probably seems that your whole world has come crashing down around you and no matter how you try you are unable to fix it.

However there are people you can reach out to, as you have already with the family counselling.

I have no experience of brain tumour as my husband is head and neck.

Please remember that your wife is being looked after by her medical team, try to take a step aside and help your children on this ride the family seem to be on through no fault of their own.  They are dealing with lots of emotions and if Mummy is being out of sorts and getting angry they need to understand it can not be helped.

It is not easy, how you cope with it only time will tell, but there is no right or wrong way as every situation is different.

When things get tough, and they will try to find an escape for yourself to gather your thoughts and emotions, then take another look and hopefully you will get over the next hurdle.

I'm really sorry if you was hoping for a "quick fix", sadly there isn't one, but as you recover from each episode you will be stonger and have learned how to go into the next one.

Do take advantage of any offers of help, do not be too proud to say you need help. Advise your children's school that Mummy is sick just now and that they may be a little out of sorts, if the school has a pastoral team in situ it helps if they know that family life is tough just now.

And of course there are lots of people on here that may be able to offer advice, please do keep posting it helps to get it out.

Best wishes

Jackie D

JackieD

LoobyLou49
Posted by

Hi and a warm welcome to the online community. I'm sorry to hear about your wife and all you are going through. I'm just reviewing a book for Macmillan called The Neuroscientist Who Lost Her Mind and her behaviour during the worst of her brain tumours, and during the treatment, sounds remarkably like your wife's. Nobody could do anything right for her, she became quite obnoxious but was completely unaware that her behaviour was 'a brush with insanity'. I don't know whether your wife's tumours are the cause of her behaviour but you're certainly not alone with the torment of altered personality in a loved one with brain tumours. 

You might find some useful information in the Brain Tumours group and do call the helpline when things get too much. There's a page of links for support with the emotional side of cancer and, as Jackied said, take all the help you can get. There might be some cancer support groups in your area where you can find face to face support and if there is a Maggies Centre near you they run courses to help families cope with the stress of living with someone with cancer. I hope you find something helpful here. Thinking of you.

Hugs,

LoobyLou   

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish. 

Niobe
Posted by

I  feel so sorry for you. I've been on the cancer train with my husband for five and a half years, and although it has affected  virtually every aspect of our day to day lives, i think we have been really fortunate because his personality has not really changed. The scanxiety moments are bad; day to day,  he gets a bit grumpy and  short tempered, but then that could just be old man syndrome (will I get modded for sexism???).

But I think the brain is different, it really does change people ( and unfortunately , rarely for the better). It isnt just cancer, it seems to be all types of brain injury. I think you may be American?  but anyway it might be interesting for you to read about the rower James Cracknell: there is also an interesting peice about the effects of concussion in today's Guardian online.

So the good news is , it isnt just you and your wife; the bad news is, that you are probably dealing with this for some time to come. So you and your family and anyone else who is in your personal loop need to work out how you are going to deal with this. That includes the medics, who need to know about this behaviour. Sometimes just getting affirmation from other people can open the door to a solution.

It does sound as if you cannot manage to go on as you are. My only suggestion is that you do try to minimize contact with her, dont neccessarily be in the same room all the time, try to spend some time in the garden ( if you have one), or out of the house. When my husband was recovering from his operation, we agreed that I had an hour and half off in the afternoon, when I was not on call for tea, or picking things up or anything else that fell into the 'could you just' category. Maybe you could get a seizure alarm that would allow this, or a sitter ( in the UK there are charities which will provide this). You need some time to breathe.

You have a very hard row to hoe. My thoughts are with you.

xxxxNiobe