Personality changes

Hi TPK29. I wish I could offer you some wise words of wisdom but it’s so hard to see. My husband has always been so laid back but often I feel like I am treading on egg shells … he gets very snappy and also with our two boys (aged 10 and 12). I don’t think he sees things as I do and when people ask how he is or how things are going, he will always say ‘really well’. We had our consultant appointment a week ago and I just broke down …. I explained what I see and how hard it all is. Our consultant was lovely and she has put him back on steroids to help with appetite and energy levels so I’m hoping this may help his level of patience too. After the consultation, we went over to Maggie’s, for the first time, which is the cancer service to support patients and families. I walked in and just felt a sense of warmth. We sat and spoke with one of the volunteers… we both got upset as I explained how I felt and my husband hadn’t realised. We are going to now visit there every time we are at the hospital. Since then he has certainly tried to be more mindful but I absolutely realise it is so hard for him too and he can’t always help it. 

I’m not sure that really helps you but you are not alone and I am quickly coming to realise this is a very painful part of the journey. I am no longer married to the man I met but he is still there some of the time. 

Sending love and strength to you. 

Hi TPK29

sorry only just spotted your post. I hope you managed to have a nice day yesterday.

Sadly personality changes go hand in hand with the GBM journey and it is beyond hard to watch. G was never the same after his surgery (and a seizure two days before it in Sept 2020) and over the course of the next 3 years his personality altered considerably. Sometimes its to do with the medication. Dexamethasone made him really bad tempered! At others its the tumour itself and sometimes its a combination of both.

Don't feel silly about feeling negative. This is a cruel arduous journey  for all involved. It's only natural to feel the way you are feeling. With G I tried to remind myself that he was "broken" and it was the tumour talking not him. Some days that was easier than others. Please try not to take anything too much to heart and she really doesn't mean it. I understand only too well how hurtful and spiteful some of the things spoken can be and I know it hurts.

This is a safe and supportive space so please reach out here anytime. As you've already seen there's always someone about to listen who gets it, someone to hold your hand and someone to offer a virtual hug when its needed. You're not alone. We've got you.

If you are still concerned about your mum's mood/behaviour it might be worth mentioning to the Dr to see if there's anything that they can suggest to help.

For now though I'm sending you a huge virtual hug and  infinite patience and strength,.

Wee Me xx

thanks for your reply. Its reassuring to know that other people are having to deal with this too- although I'm very sorry that you are having to go through this too. It really is a horrible part of the disease.

Thank you so much for your reply. It really is a cruel part of the disease but its reassuring to know that there are others going/who have gone through a similar situation. Its easier said than done not taking it personally or reacting to the outbursts at the time but I always try to recognise after that its the tumour/medication talking not her. I guess its just difficult knowing that I will likely never have my 'real' mum back. x

Hiya TPK29 

I hope you managed to have a nice Christmas despite this horrible thing happening to you all. I lost my Dad 6 weeks ago to this disease. 

My dad reacted really strongly to the steroids, he would be totally manic, or very depressed and snappy. My poor mum always got the brunt of it, and she really found it difficult, especially in the first few months. They decided they would taper down his steroid dose as much as they possibly could and the difference was huge. 

What I can say in my experience, is that now he has gone I don’t remember him for when he was ill, I remember him for who he truly was before this all happened. 

The anticipatory grief is incredibly challenging, all you can do is take it a day at a time. 

Sending you love xxx 

So sorry to hear that you lost your dad. My husband was diagnosed in September this year with inoperable Grade 4 tumour, no treatment just palliative care.He transferred to our local hospice 8 days ago. Up until then we looked after him as a family. My husband has had huge ups and downs in his personality and at times has said some pretty awful things.My son, daughter and I know it is not him doing this but the tumour. It is reassuring that the horrible times have faded for you and we hope it will be the case for us as we have so many happy memories to look back on.

Hi TPK29

Hope you managed to have a good Christmas. Personality change is part of steroids and disease. It is not your mum. Instead of looking at the personality change just enjoy the time that you are able to spend with her. 

In Sept we did a trip to Paris and my husband was going thru a lot of personality change, anger, outburst at that time. He used to sometimes shout at my kids -  20 & 12 year old. Though my kids were really understanding but it was tough for them to repeatedly go thru it.

Now my husband is not in a position to travel and with his condition going down anger & outburst has reduced. When we as family look back, I am glad we managed to do the trip as a family even though it was not the most pleasant family holiday. Possibly the last trip we had as a family of 4 is what we will remember rather than the anger, outburst etc 

Hi 

I can completely relate to this.  Its almost unbearable to watch.  My husbands short term memory is getting worse as are his moods. Some days he's absolutely fine and I kind of forget what we are facing. Then the next day he's very tetchy, getting cross with little things and really goes into himself.  If we are with other people and he's like this it's so hard as he has times where he barely says a word and I just know it's not the 'real' him.  We have out 24 Yr old son staying with us and I know he's worried about him. I've just said to him and our 12 Yr old that it's not him but his illness and we just have to ride it through. 

Its hard not to take it personally but I know that pretty much as soon as my husband has said something or behaved in a certain way that he will have forgotten about it 5 minutes later whilst I'm upset and sad mulling it over! 

Sending lots of love   ️ 

Hi hope you had a lovely Christmas.

i lost my mum 5 weeks ago I still pop on here every now and again as I know how worrying it is this horrible disease! 

my mum was never the same after the steroids. She was the most laid back person and was always smiling having a joke. She was very snappy and be quite nasty to my dad a lot do the time. 

it’s horrible seeing them change. 

sending lots of hugs x

What a trial this awful illness is, the personality changes can be abrupt, over the top, insidious, depressive. It's difficult to let it wash over you or to ignore, if you do, you also can feel you are just hardening up or being tough. 

As I look back there's no answer, just being as kind as you can and look after yourself to be there for the gbm sufferer. 

And with passage of time remember the person as they were, and try to forgive yourself for not being able to do more than you could then. And knowing now they rest in peace.