Brain tumour/ Dementia

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Need some advice please  Husband diagnosed 13 years ago been a rocky journey all the way what with huge personality change, leaving work. Re mortgage house to buy him a home. We are now what I would call friends & still married on paper. I’m condensing this down as 13 years has not been without its traumas !!!! Long story short. He is on plenty of meds including Keppra to manage the seizures. This has been successful for many years.  I do think he sleeps an awful lot, pretty much most of the day. He gets up to eat when he feels the need, watches some sport, but falls asleep pretty quick in the chair. I describe him more like my teenager, sleeps a lot eats cereal and is rude if he does not get his own way. Recently he had a fall coming down the stairs, breaking ribs & suffered a bang on the head. He is now more intolerable than ever. I’m not allowed at any of the doctors visits & when we went to the hospital after the fall I can see why. He is denying that he has a tumour claiming he has been cured !! He is now getting obsessed with things. Ordering clothes in abundance. He does not go out & looks truly unkempt most of the time, so no need for the sudden interest in clothes. I’m just wondering if this maybe the fist sign of dementia? What do I need to do where do I go from here ??? I have tried to keep this short but given a short synopsis of our situation. Thank you and any advice Wouk be grateful received. Thank you Sally 

  • Hi Sally, welcome to the group I'm so sorry to hear what you're going through but I'm pleased you found us. I cared for my wife who had a GBM.

    Below is some of the info about services Macmillan offer to support you and your husband but just to respond to some of the specific points you're raised. 

    13 years is a very long time. Goodness me, I did 18 months and that seemed a decade so I really can't imagine how tough that must be. I was lucky in a way that my wife didn't really have personality changes as such. She struggled with cognitive ability and needed help with lots of things but she remained the kind person she always was. A lot of her symptoms were very similar to dementia. Her short term memory was very poor and she would get very confused sometimes.

    I wondered at the time if we shouldn't be seeking more support from charities geared towards illnesses like dementia as there was little we could do about the cancer itself. Might be worth calling Macmillan to see what they say and if they can signpost you anywhere.

    Are you getting an respite care? After all that time you must be exhausted both mentally and physically so I hope you're able to look after yourself as well.

    Sorry I've probably not been much help here but please know you're not alone in this,



    There's lots of really useful information on the Macmillan site about different aspects of cancer so if you haven't already have a good browse and come back with any questions. I found it really helpful just reading through the threads in this group to see what others' experiences had been like. Although we are all looking after someone with, or suffer from, a GBM we all end up taking slightly different routes depending on how it progresses and local care provision.

    When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.

    Have you or your husband been offered any counselling at all? Either way it’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

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  • We went through a period of similar. Mum became obsessed by ordering things online. I look back now and smile but at the time it was the most stressful thing ever. We had everything from boxes of crisps, to wigs, to 3 coffee machines arriving on the same day. Towards the end of her ordering spree she discovered temu which was one click ordering. I had over 60 lipsticks arrive in a week, jewelry, false nails, make up brushes, pet wipes, cat toys, combs, brushes, everything you could think of.

    Eventually the only way we could stop this was to remove her card from all of the websites, and now we have had to remove her banking app. It's horrible to say but fortunately she has gone past the point of understanding this is what we have done, she scrolls her phone but doesn't know what she is doing but it does seem to bring her comfort. Back at the time she did have the understanding, we had many a day where she would get very angry saying she didn't order these things or cross with us we were telling her what to do. Many of her early symptoms were dementia like and they remain that way today. Macmillan and rowans hospice were both amazing at explaining some of this to us and supporting both mum and ourselves throughout. Now we are "used to it" it has become a little bit more easy to know how to behave around her.

    Sorry abit of a ramble but hopefully a useful insight for you to know you are not alone xx