Husband's Terminal

Hi Robbin11

welcome to the online community. I get it and no, I don't think you're cold and selfish in the slightest. To me, it sounds as though you are a strong person.

I'm in a not dissimilar situation. My husband (now 52) was diagnosed with a  terminal grade 4 brain tumour in Sept 2020. Before this diagnosis he was a total fitness freak (her still is), a marathon runner and a high flying IT project manager. His tumour was in the area of the brain that controls speech, language and understanding. Two days before his surgery, he had a seizure and to be honest , he was never quite the same after it. The surgery 2 days later ensured he wasn't the same person. Physically he's great. He's still able to run - thank God as its all he has of his previous life left. He can barely read more than a few words and is pretty much like an early stage dementia patient. Its so hard to see. So cruel.

But, like you, I feel as though I've been grieving for him since the diagnosis. Our bills were already all in my name so that's at least one thing I've been spared and from a financial side, the ducks are all in a row.

It does feel as if you are trapped in this role as carer that you never applied for though. As a couple we were never great at doing things together but I feel guilty when I do go out or if I plan something for the future. I love going to concerts and feel bad that I have gigs lined up as far as May 2022 when I know he may no longer be here. (He would never come to any of these with me anyway.)

But, keeping that practical mindset, life has to go on. Just now, a bit like you describe, everything feels as if its on hold life wise. it's all about the illness. Being open and honest with certain friends helps me keep it all in perspective to an extent.

My kids are 21 and 23 and both of them have said this is all taking its toll on them too. My son said earlier it feels like going through the day carrying a backpack full of rocks. My heart breaks for them. They shouldn't have to go through this.

I guess what I'm trying to say is that everyone copes differently and there's no right or wrong way to cope or to feel or to be. We'll all go through every emotion in the book and then some before we get to the end of this journey but you know what- we'll all get through it. 

This group has been a great support for me as there's always someone around here who gets it and is available to listen and to offer a virtual hug when you need one.

 Please remember that Macmillan Support Services also offer lots of information, support, financial guidance or just someone to listen. It’s free to call 0808 808 0000. Most services are available 8am to 8pm, 7 days a week. Have a look by Clicking here to see what is available. 

Hang in there. Stay strong. You're doing great here, trust me.

love n hugs

Wee Me xx

Hi Robbin11,

Firstly, you're not a cold selfish person. You're doing the hardest thing that I (and many, many others) have ever had to do - being realistic when hope, faith and medicine proved insufficient.

What kind of person am I?

You sound like a person that is doing all the right things at the right time, while still caring and loving.

If you didn't care you wouldn't have written this.

Pre-emptive grief is a real thing and, most of the time, carers don't even realize they have begun the process. Watching your loved one fade away (either physically or emotionally) is never easy and I think pre-emptive grieving is a self-defence mechanism. I think of it as the centre point in a triangle bounded by hope, anger and reality.

In my case, I started grieving about 5 years into Margaret's 7 and bit years cancer journey. It wasn't that I stopped caring or relating to Marg. It was more a change of focus from fighting cancer (and doctors, oncologists, nurses and anyone else that got in our way) and supporting Marg to ensuring that whatever time we had left was as nurturing, comfortable and comforting as it could be.

Focussing on a future without Marg in my life was hard but it did give me an alternative focus. Marg got herself involved in the process ( as far as her narcotic drug load would permit, but some of her suggestions while under the influence were pretty bloody funny) and proved an invaluable insight as to how poorly prepared I would have been.

She knew she was dying. I knew she was dying. Once we had both accepted that (and after the inevitable tears and breakdowns) it became easier to discuss things, plan things and prepare for the shitty bell lap we were facing. 

Marg's goal was to fight and survive long enough that our 4 grandchildren would have some memory of her (Our youngest grandson Darcy was only 2 when Marg was first diagnosed). Once she knew that she would always be in their memories, she was more peaceful and more accepting of the changes that were happening to her body.

It's not that things got easier - far from it, but she was more at peace within herself.

And that was the point where I started grieving the loss of my darling.

Hang in there sweetheart.

While your primary caring focus is your OH, caring for yourself is never wrong.

Peace,
Ewen :-)

You are not cold - you are coping.  My partner received a terminal diagnosis 6 years ago, I went through very similar thoughts and feelings.  Although not cured, things improved and his cancer was stable for a few years.  However it has now taken over once more and treatment has restarted.  He is no longer the same person as his health has deteriorated rapidly, he has become very self centred and I do not blame him for this at all - I think it helps him to feel in control of something!

i feel i have already grieved for the life and future we have lost and probably also for the day when  we lose him.  I have lived in limbo for most of the last few years, no future planning, holidays abroad or trips out just hospital trips or appointments. I think I have accepted that we will lose him after which I will need to continue to live for the sake of our family.  I have, like you, arranged trips out with friends and family (he wouldn’t go anyway even if he was well) for the future as we all need to look to the future to give us something to look forward too or plan for.  Nobody should feel guilty for this and i think that it is only when faced with the cruelty of cancer and the devastating effects it has on the sufferer and their partners and families can you understand these feelings.

so do not feel cold or selfish - you are there for him now - but you are also a human with needs hopes and a future to live.

Hi I am new to the group my husband had the same diagnosis almost 4 years ago which also left him paralysed with carers 4 times a day. I know exactly what you feel as I too have become his carer, not his wife. We turned our dining room into a hospiral room for him.

In December last year he was diagnosed with lung cancer for which he had radiotherapy. Four weeks ago he was diagnosed with liver cancer. He passed away on 19th October. My heart is broken. I am trying to tell myself that he is not suffering any more, but  I don't  have him with me and it hurts sooo much. His funeral is not until 5th November and I am rwally struggling with that. God bless you both you are in my thoughts xxx

God bless . Just lost my husband to cancet almost 2 weeks ag xx

Bug hugs xx

1. Sorry Big hugs

I’m so sorry for your loss. I will be thinking of you and your family. Sending you love. 

Thank you. 

Thank you,I think only people who are living this life fully understands.