Hi Everyone. I'm not sure what I am expecting from posting this, but just felt that I had to reach out somewhere. My MIL spent a really nice Christmas with us, with none of us expecting that anything was wrong. Then she drove up from Devon to Bristol a few weeks ago and when she arrived, her face was drooping on the right side and limb function seemed impaired. We were worried about a stroke, but after a trip to the hospital, they said it was a tumour. We later found out that it was a glioblastoma, in multiple areas of the brain. It can't be treated and she has "long weeks" to live. My wife has been incredible and really trying to be supportive and positive but I know it has taken a toll on her.
My MIL has been living with us now since the initial diagnosis at the start of Feb.
We have seen a rapid decline in her ability to walk, to speak and to function. But we've tried to do a few nice MIL-bucket list things which are memory-makers, such as afternoon tea in London.
I have tried to be as useful as possible to my MIL, wife and 2 daughters during this REALLY odd time. It feels as though we're lying to ourselves when we're being positive (given the situation), but we don't want my MIL to be dragged down into depression and we want her to enjoy what time she has left as much as possible. Kind of feels like suspended animation.
We're about 8wks in. We have done a lot of crying and laughing and we're under no illusion that it is going to get harder. It just doesn't seem to make it easier as the times DO get harder.
I know that there will be many people who can relate to this - my MIL is a good woman who had a real lust for life. Her husband, who suffered with dementia and who she looked after single handedly for almost 3yrs, died this time last year. She was just coming to terms with the grief and then this hits. It isn't fair, but when is it??
She is receiving wonderful help from the carers who are visiting three times per day right now, and has signoff for up to 4 visits per day. My wife & I work full time, so this is a God-send.
The hospital, GP, carers and hospice are all talking coordinating. They are truly wonderful, empathetic people and we couldn't be more grateful to them.
We know the hospice is a very welcoming and calm place, but we (including MIL) want her to be at our home as long as is possible. But she does not want to pass away in our home, and TBH, we don't want that either - for the sake of our girls and us. Is that selfish?
Anyway, if you've made it this far, thank you for reading. Any advice or hints you can give to make coping that little bit easier would be gratefully received.
HI Doinghisbest
a warm welcome to the online community. So sorry to hear about your MIL and all you're going through but it does sound as though you really are doing your best.
My husband was diagnosed GBM4 in Sept 2020 (he was 50 at the time) and I've been supporting him throughout his journey. Like yourselves we are now down to weeks, a couple of months at best. It's been an emotional rollercoaster ride for the past couple of years...feels like a lifetime now.
I wrote a blog for the MacMillan community a while back about coping. Here's the link “I’m fine”: how do you really cope as a carer? - Macmillan Online Community. There really are no hard and fast ways to cope, we just do. At the end of the day, we really don't have any other choice.
Those first few weeks after diagnosis are a rollercoaster ride for all involved. There is no right or wrong way to feel. You naturally go through every emotion in the book and then some. It's the most resilient among us though who show those emotions. A sense of humour, however dark, also helps. It's worth remembering that you've all had a shock with this diagnosis and it takes time to come to terms with that and it takes as long as it takes.
This group is a safe and supportive space so please reach out anytime. There are another couple of groups you might want to explore - Carers only forum - Macmillan Online Community and Glioblastoma multiforme brain tumour forum - Macmillan Online Community. Personally I've drawn a lot of support from this community. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone.
It’s always good to talk so please remember that you can also 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.
There's also some really helpful info in this section of the website too Supporting someone | Macmillan Cancer Support.
I hope of this has been helpful.
Like yourselves, we have been put in touch with our local hospice and when the time comes that's where my husband would prefer to be. He was the one who told the palliative care team that he didn't want to die at home. I'll be honest- that was a huge relief to me. I questioned myself, like you, whether it was selfish to think and feel that way and swiftly came to the conclusion that it isn't. At the end of the day though, we just hope their eventual passing is as peaceful and pain free as it can be. I try not to dwell on that bit.
For now, I'm sending you all a huge virtual hug. This is a tough gig so don't be too hard on yourselves for how you feel. You're coping so much better than you give yourself credit for. You'll just need to trust me on that. Stay strong,
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
