Caring for my mum with gliobastoma

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I genuinely never thought we’d find ourself in this position we are in now and i am really struggling to process it and stay strong. 3 months ago my 66 year old mum who was the absolute centre and rock to our very close family, literally the strongest most physical and intelligent caring woman I have ever known! yet 3 months later we have a diagnosis of glioblastoma with no hope of surgery or treatment as scans have revealed it is spreading at an aggressive rate. Within that short space of time she has lost the use of her legs, is now completely incontinent has no real concept of what is happening 99%time and the confusion is getting worse by the day. My parents have been together nearly 50 years and my dad bless him has been amazing but dare I say it reluctant to accept outside help other than myself sister and brother. Which has been fine but is getting harder and harder as my mum is not the smallest of ladies to manuever about. But I am racked with guilt at the idea of even suggesting we may need a little help. Myself I am a single parent to 2 children and run my own business so trying to balance it everyday is taking its toll with the addition of very minimum sleep, but I love my mum and family so very much I feel I can’t let them down by admitting we need help. And now the bastard thing is spreading we are seeing more and more traits that are just not our mum eg anger frustration and just clear denial. It is heartbreaking watching this such rapid decline and not being able to stop it. I just can’t fathom it 3 months ago we were rocking to live bands and now this! Our whole lives as we know them are shattered and I just don’t know how to adapt to or cope with this new normal.

src60 6 months ago

Hi Kayleighj and welcome to our community though so sorry to read what you are all going through.

I know what you mean about not wanting to let people down, I was there - then I broke and that was not really helpful to anyone.

What can help is getting a needs assessment because then there is an objective assessment of what is needed and for you of course that includes the care of both your children and yourself.

<<hugs>>

Steve

Flowergirl01 6 months ago

Hi Kayleighj,

My family and I are going through the same thing. Mum is 76 and a year ago was fine. Suddenly her eye went funny and we had the tests and it came back as a Glioblastoma. She was told she had 4- 6 months to live. Or have an operation and hopefully 12-18 months. She had the op it and radiotherapy and the MIR was clear. Then sadly she had a fall and it all went downhill from there. Its been 8 month since her operation and we now have been told that Chemo is a no as she's too confused and sleeping all the time. Her short term memory has gone. It's breaking my heart to see her like this. She's geing assessed by the hospice tomorrow but the Consultant has given her 4-12 weeks. I'm getting married in 4 weeks time and now thinking of cancelling. She was so looking forward to it. Picked her outfit out and everything. All I can say is you and your Dad have done all you can do. Take the help. I send all my love to you and your family.

Flowergirl x

Nikkiw91 6 months ago

Hi Kayleighj,

My mum's just been diagnosed with a glioblastoma, she's 59 and at the moment doing well. Diagnosed 23/5 had an op on the 8/5 but told 17/5 that it's stage 4. It's not even been a month, yet it feels like years...

As I say, at the moment she's doing alright. She's single, but fortunately we have lots of family members around able and willing to help. I have 3 kids, all who have significant needs of there own, so I am unable to take on a caring roll, and my brother lives far away. There is a possibility he'll moved in with my mum - but I don't think that's wise. It's hard enough to know you're loosing your mum, without being there doing everything daily - and with kids and a business to run - who will be there to pick you up when you drop.

Call Macmillan, see about getting outside support, you all need it. I'm going to contact them myself to see what support it available for us.

Sending love and hugs xx

Nikkiw91 6 months ago in reply to Flowergirl01

Flowergirl,

Please don't cancel your wedding. Is Mum well enough to come to the ceremony? It will give her something to look forward to.

Sending lots of love x

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