So sad and don’t know how to cope

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Morning 

I am not sure what to do anymore, I posted a while ago about my husbands personality changes.  This has got significantly worse and his paranoia and delusions are at the point where I almost cast leave the house without him accusing me of seeing other men or having an affair.  It’s deeply distressing and I cry every day for the man he was,  there’s nothing i can do to help and despite constant reassurances and telling him I love him he has this fixed in his mind.  He veers from being very loving and telling me how much he loves me and how supportive etc I am and that he couldn’t do it alone to being very hostile and accusatory. Unfortunately the negative moods are becoming more frequent.  In his lucid moments he knows he’s being irrational and that he can’t help it but that very quickly changes.  He shouts at me, tells me to F off and says things like i know what’s going on, ill sort it, I know you’re seeing other men, its ok I’ll be dead a soon and you can just do what you want as you always will anyway.  He isn’t aggressive as such but very mean and hurtful and it’s impossible to talk him out of it,  If I try to ignore ir or walls away he gets crosser and if I try to get him to see that what he thinks just isn’t true he gets cross too.  

I cant leave the house for any length of time even to go to work without us having an argument about how badly i am treating him, how he will be dead in 6 months (no one has said that) It’s at the point where I just dont know what to do, this happens many times a day and there’s no warning of it. He can be fine one minute then literally flicks to another personality immediately.  

I know its the tumour and the treatment and not the real him but its absolutely exhausting to the point I am considering leaving work.  Although I diid take a few days off for us to spend time together but it was just as bad.  

One occasion last week was particularly bad, I took the car to the garage for a service, i told him it would be a few hours as it ws a waiting appointment and left at 2.15pm.  I text him ton remind him our son wouldn’t be home until 4 as he was at a club, I text again at 4.45 saying it was nearly done and that I would go anc collect the dog then be home. At 5.10 I rang him and told him I was leaving the garage to get the dog.  I arrived home at 5.35 and as I got the dog out of the car he needed a wee so I took him to the grass near the house, a neighbour ws out with her dog so we had a quick chat and I took the dog home.  It was 5.50, my husband was stood on the drive shouting where had I been, he had been out nearly an hour and what had I been doing., I told him it was less than 15 minutes and was talking to a neighbour but he didn’t believe me.  I showed him ring doorbell which showed the times and showed it was 14 minutes but he just wouldn’t accept it, my son got involved as i was son upset but he still wouldn’t accept it and said i was lying.

I am trying so hard to make the most of the time we have together, i book concerts, meals out, events etc but its so tiring trying to keep positive when this is going on,  We had a chat with the neuro phsycologist and have an appointment next Friday so I am hoping & praying for some help for us both,  Its like I am living with a stranger and it makes me so sad.  Yesterday he said he was going to move money so I couldn’t get it,  its so distressing and I honestly dont know how I am going to cope.  We have been together 21 years and married for 18 and its like a form of torture for us both, 

I dont really know the purpose of the post except to get it out of my head and write it down!  Thanks if you’ve read this far!  

  • Hi Jobo,

    I am so sorry to hear what you are going through, it must be awful watching someone you love going through this. I have been diagnosed with stage 1 breast cancer and recently had a lumpectomy and two lymph nodes.

    You have made the first big step coming on to this site, Macmillan have wonderful people who can help in all sorts of ways. If you haven’t already, please do ring Macmillan on 0808 808 0000, they can direct you to the person in Macmillan who can help you most.

    I also write a daily diary, this is mega helpful as it gets everything off your chest and out of your system. Please also try and get a good support structure in place, family, good friends etc., who can sit with your husband whilst you have a bit of a break. I know it’s probably the last thing you want to do, but maybe Macmillan could try and arrange some respite for your husband, that also might help.

    I hope and pray that things get better for you and if you ever want to talk or just let everything out, just come here anytime - we’re not a bad shower Smiley

    Love and big hugs to you and my best wishes to your husband.x

  • Oh gosh Jobo I am so sorry to read your update. It seems silly that I feel so lucky sometimes that my wife wasn't affected in this way by her GBM. It is so utterly heart breaking and cruel for you, like terminal cancer isn't bad enough on its own.

    I would also encourage you to think about ringing Macmillan or trying other routes to get some respite for yourself. 

    When was his last MRI? Did that show any signs of change at all?

    I don't have much to offer here other than just to tell you you're not on your own. I know it may not seem it but you are doing an amazing job.

    Sending you light and a hug,

    Chris 

    Community Champion Badge

  • Hi Jobo,

    I read your post and felt that I could have written it myself, almost word for word. This doesn't seem to happen in every case but I can attest to exactly the same paranoia you are dealing with. In my case, she is convinced that I am having an affair with my ex, even though we haven't spoken in months and the last time I saw her was last summer to pick up the dog for a few days. I have had to silence my phone as she jumps at every notification, every time I go and do the shopping she thinks I have dropped by the ex's and she checks my location on the phone. Yesterday she was shouting at me all morning and then grabbed my phone to check messages and accused me of recording her shouting episodes to use against her somehow. It's heart-breaking giving your heart and soul to someone who has started to think of you as the enemy.

    She is now 12 months post diagnosis and two weeks ago the medical team told her she has run out of road for treatment. Her body began to violently reject the chemo and radiotherapy and they have told her there is no further treatment available (apart from a very surreal experimental suggestion which I might write about in another post but haven't come to terms with yet). I figure that part of the mental breakdown is due to the tumour itself which often causes changes in personality but the emotional turmoil of being told there is nothing more they can do must also be unbearable for her. She still hasn't accepted this and keeps accusing me of writing her off for dead.

    I'd love to be able to offer you some words of wisdom, but I don't really have any. It helps me to read your experience and know that I'm not alone, I hope it might also be some comfort for you. Just hang in there, I'm wishing you all the best.

  • Thank you, it seems to just be one thing after another. Like you say dealing with terminal cancer is enough of a challenge.  He had a scan in January which showed slight progression so he went back on 5/28 chemo, his last scan was a few weeks ago and we will get the results on 12th.  I'm thinking given the worsening symptoms that it may well have grown again.  Physically he is doing really well but this is a whole new level.  If I can stop crying that would be a start! Thanks again and hopefully the nurse can offer some support on Friday x

  • Hi thank you so much, it sounds awful but it does help to know I'm not alone with it   although I certainly wouldn't wish it on anybody.  Yes I too can relate to those reactions, when I pick my phone up its the same, who am I on to, (its generally the kids! ) I too put my phone on mute.  Last week I got out of the bath and he asked me what I was up to & who was I talking to.  My phone was by the bed whilst I was in the bath! Then he said well it's all very odd you having a bath at the same time each night, you're definitely up to something! You kinda have to try and find some humour in it I guess! 

    I'm so sorry to hear there's no more they can do for your wife,  I know that day will come for us at some point.  Life can be so very very cruel sometimes. Sending strength your way too xx

  • Thank you and I hope you're getting the support you need too after your diagnosis. This forum is a real lifeline and I'm very grateful to have it.  Hugs xx

  • Hi Jobo

    so much of what you write resonates with me. I went through a lot of that with G before he passed. Hard as it is you have to steel yourself to the fact that its the tumour talking and not your partner but that's so hard to do day in day out. These tumours and the medication steal the "real" person from us piece by piece.

    I hope writing it all out here helped. Journaling is cathartic. I'd echo what Chris has said and perhaps think about calling MacMillan. Selfish as it sounds( and in actual fact its not selfish at all but you'll perhaps not see it this way yet) you need to look after you. Speak to your husband's medical team about how all of this is impacting you and see if there's anything they can suggest. 

    Please reach out here anytime. We're here for you and there's always someone around to listen as you've seen.

    Sending you a huge virtual hug and lots of patience.

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Jobo.  Sorry to hear about your sadness and struggle. I assure you, seems many of us caregivers with those affected by the nasty GBM Multiforme disease are in the exact same situation as you. Their illness brings them paranoia and delusion beyond our capability to understand or trying to ration or explain to them anything - I think. Try to keep you head high, take care of yourself. your sanity, and remember to self-love no matter how difficult the times are, for your family, your husband.