My husband was diagnosed March 2023 aged 69 after having a seizure, I thought he was having a stroke. He couldn't have surgery due to position of tumour in left temporal lobe. He had standard of care, chemo and radiotherapy last summer, followed by 4 rounds of Temolozide. This was suspended in November - an MRI in December showed no improvement so he's on Dexa, Keppra etc. He deteriorated Autumn 2023 and has suffered muscle loss and can no longer walk - due to the steroids the consultant says. He has a hospital bed, commode etc downstairs as he hasn't been able to get upstairs for a few months now. He's just come home after two weeks in hospital as he had a blood clot on his lungs. On discharge there was an interim package of care put in place (2 carers 4 times a day). The reason for this package is because I have breast cancer and am undergoing treatment too and I'm on my own with my husband. The carers are really good, but my husband is resistant to having them - I agree the timing is never right when they come - he's either not ready to get up in the morning, or I've already got him up, and the same applies at bedtime. He's used to going to bed when he is tired, he can't wait for them to arrive as he gets overwhelmingly tired and very irritable which isn't good for either of us. This is not their fault, but nor is it ours. Has anyone else had this experience with carers? I feel fortunate we have been offered this temporary package of care, but guilty I'm often turning them away. Sorry for the ramble, it's my first time posting on here.
HI Bella56
a warm welcome to the online community. It's the perfect place to ramble so no need to apologise. We're here to listen. So sorry to hear about all that you have going on.
I supported my late husband through his 3 year GBM journey so I can empathise with what you are going through. We were fortunate in that we didn't need the care package other than for one day near the end before G was admitted to the local hospice. I know from previous experience with care packages put in place for elderly relatives and family friends that the timeslots are far from ideal and are a compromise. This is a safe and supportive space so I am confident that some of the other members of the community will be along shortly to share their words of wisdom.
I assume you have asked if the time can be tweaked? Is it maybe worth a chat with your GP? If its community nurses who are coming is =, is there perhaps an alternative eg MacMillan or Marie Curie nurses? Just thinking out loud here really.
I hope you can reach a more acceptable balance of care soon.
For now I'm sending you a huge virtual hug and lots of positive energy. Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi Bella,
Welcome to the group and so sorry to hear about your husband. I care for my wife who has a glioblastoma diagnosed back in June 2022. Thankfully she was able to have surgery and treatment so I guess she was "lucky" but has recently started to deteriorate quite rapidly and is probably at a similar stage to your husband. She now can't transfer to commode anymore so is at full bed care stage.
We had the same thing with carers when they started coming after the hospice referral. My wife sleeps most of the time so they would invariably arrive when she was asleep so an immediate strip wash wasn't welcome. The personal care also wasn't always timed well. After 4 days I just took over again but then I'm 44 and in good health so am lucky enough to be able to do this although as I've said before here I was shocked at how physically gruelling it can be.
Do you have contact with the local hospice as they might be able to offer advice. I do know that some people in our situation opt for live-in carers but this clearly isn't financially viable for many people. Are there any friends or family local who might be able to help out at all with any of this caring? I know though that often isn't welcome and my wife has always resisted the idea of asking others to care for her.
Below is some standard info we give everyone new here but it does sound like the Carers forum might be worth exploring as this issue clearly isn't unique to brain tumours.
I'm glad you found us and I hope you find this group as supportive and kind as I have,
Chris
-------------------------------------------------------------------------------------------------------------
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.
Hope some of this is useful and please do use this group to ask questions or just vent how you're feeling.
