Hi all. My dad was diagnosed with GBM in August. Tumours were everywhere (multifocal) and spread rapidly. Since then he’s lost all mobility on one side of his body and has become completely bedridden and wheelchair-bound. He requires round-the-clock care for even the most basic activities (sitting, eating, bathroom, etc.). Other than his immobility, he is fully alert, cognitively well, responsive, and normal.
Unfortunately we don’t have a lot of treatment options left. He was hospitalized after completing partial SOC due to complications (radiation + 1 round of chemo) and his neuro-oncologist is hesitant to let him continue chemo. The doctor have essentially told my dad that he should focus on enjoying the remainder of his life. He’s not actively dying, and we are not anywhere close to being on hospice. If he wasn’t bedridden, you wouldn’t be able to tell that he’s even sick. He’s just been told that treatment options are slim, he will eventually die, and to enjoy the time he has left. My dad feels that he cannot even enjoy his life anymore because he’s completely bedridden. There’s no “end of life bucket list” for us to embark on. He was an extremely active and busy man prior to the diagnosis and loved to travel. His immobility has been devastating on his mental health.
Dad says that he feels that he is in “God’s waiting room” lying in bed waiting to die. He spends his days feeling trapped, lying there, waiting. Without his independence, he feels that he has nothing left to enjoy. His depressing has become overwhelming. He’s lost all sense of purpose. Therapists have visited but nothing seems to alleviate his despair. He’s lost all sense of purpose and he cries daily.
As his child and caregiver, I’m at a loss. I want so much to help him feel some comfort or peace, but I have no idea how. His doctors have tried to give him silver linings or “making the most of this time” but frankly, this situation is just devastating and none of that changes things.
I’m reaching out to see if anyone has been through something similar or has any insight into how to support a loved one who feels so hopeless. Any advice or shared experiences would be deeply appreciated.
I'm sorry to read all that your dad and you are going through and it sounds like an incredibly difficult time.
I'm not a member of this group but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top pf the discussion list again.
While you're waiting for replies, it would be great if you could put something about your dad's diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
Hi Glioblastoma Caregiver
a warm welcome to the online community. So sorry to hear about all that has been going on with your dad. LIfe's cruel at times.
I supported my later husband G throughout the 3 years of his GBM journey. It an emotional rollercoaster ride for all involved.
You mention that you are not at the hospice stage yet but has anyone suggested that you are introduced to the local hospice community team? Our GP made the introductions. Hospice isn't just there for the final stage of the journey. They are there to support the person and their loved ones through the whole journey. It might be worth making contact with them and seeing if there is something they can support with. Our local hospice has various groups for folk where you can get together with people in a similar situation. It's worth asking. They are also there to support you.
G went through phases of being in a dark place. He was physically able right up to the last week or two but he struggled cognitively and his symptoms were more like dementia than cancer. He declined all offers of counselling but did speak openly to his closest friends about how he was feeling. Three of his friends in particular, the Old Farties, were great at coming to see him once or twice a week or taking him out for lunch/coffee. Would your dad let his friends offer their support here? Those sessions were a Godsend to me as it gave me some "off duty" time, although you're never really off duty.
This is a safe and supportive space so please reach out here anytime. 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. We've got you. You might also want to explore one of the other groupsCancer carers forum | Macmillan Online Community
It’s always good to talk so please remember that you can also call the MacmillanSupport 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.
For now though I'm sending you a huge virtual hug and lots of strength,
Love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
