Hi, looking to connect with others caring for a relative with a high grade astrocytoma. My brother was diagnosed two years ago. Some new tumours have appeared recently.
I’m supporting him and his wife through meals at my place and phone calls. it’s hard going as his behaviour is more direct and inappropriate than before. I’m looking for reassurance I’m doing the right things and maybe new ideas.
thanks
Hi Caoimhe,
Welcome to the group and sorry to hear about your brother. I care for my my wife who has a glioblastoma and we're 15 months since diagnosis. Thankfully she was able to have surgery and treatment so I guess she was "lucky" but we know that it will return sooner or later.
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 brain tumour 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. Having said that many of us in this group are carers and brain tumours do bring their own unique challenges as you're aware.
If you need to, 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.
The behaviour changes are common and my wife has changed quite a lot. I have to say there's not a lot we've found we can do about this except how best to handle it when she does do or say something odd. I've explained to my children that it's very much like living with someone with dementia and we just have to be as gentle and kind as possible whilst not being patronising. A very difficult ask for two teenage boys to cope with.
Providing meals and just taking the pressure off your sister-in-law is a huge help. My wife has friends who take her out and it's a massive help just having a few hours where I don't need to worry about her.
Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.
Sending a virtual hug
Chris
Hi Caoimhe
I'd like to echo Chris' warm welcome to the online community. So sorry to hear about your brother but well done you for being so supportive.
I've been supporting mu husband through his glioblastoma journey since he was first diagnosed in Sept 2020. I can't say we've had the same or any support from his brother but that's a rant for another time and place.
It is beyond hard to see these tumours change/steal the person you once knew but sadly behaviour and personality seem to take a hit. To be honest my husband has never been the same person since two days before his surgery as he had a pretty big seizure that changed things. Now, three years down the line, I'm living with a stranger. As Chris says some of the symptoms are more akin to dementia than cancer and that's hard for everyone to cope with. Cognitive/behavioural changes are G's biggest issues due to where the original tumour was and day to day life requires endless patience with him.
When their behaviour is out of character it helps to remind yourself that its not really them saying or doing the thing but the tumour. Work towards acceptance that the current version of them is a bit broken and they don't really mean it. Easier said than done most of the time.
As for are you doing the right thing, the answer is yes! Being there in itself is a huge support. Be led by what your brother and sister-in-law want and need. Might be an idea to straight out ask her if there's anything specific she needs/ wants support with but also be mindful she might want space too. It's tricky balance to achieve but it sounds as though you are doing just fine.
One simple thing that I find a support is that G's friends take him out for coffee once a week. Over the past three years they have taken him away for "boys weekends" (I don't want to even think what 5 guys in their 50s in a lodge with a hot tub got up to) and out for dinner a few times. Just those few hours, or as we're down to these days, an hour or so when someone else is "in charge" is a much needed breathing space for me. I guess what I'm trying to say is to keep it simple .
Chris has already signposted most of what I would wish to add but please remember that you can reach out here anytime(as can you sister in law). This is a safe and supportive space and there's always someone around to listen who gets it, someone to hold your hand and to offer that virtual hug when its needed. I've personally drawn a lot of support from this community.
Please also remember to take care of yourself here too. It's a lot for all involved to cope with so make sure you take time to keep your own wee batteries charged.
Ok I've waffled enough. Sending you and your sister in law a huge virtual hug. This is a tough emotional rollercoaster ride. Stay strong. Keep doing what you're doing.
Love n hugs
Wee Me xx
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