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I’m not really sure what to say

Charliemum
Posted by

Hi there. I don’t really know what to say. My dad was diagnosed in May with stage 4 NSC squamous cell metastatic Lung Cancer. It was inoperable and the only treatment to improve life expectancy was chemo but as the quality of life would be so bad; dad refused any treatment - as is his stubborn way! 

We were told ‘months not years’ so we prepared for the worst. He lives 30 mins from me. (I also work, run 2 businesses and have a 3yo.) but I did everything I could to be at his at least 3-4 times a week with my brother helping in the days I couldn’t be there.

Mum and dad have been divorced 10yrs but finally started talking again after dad’s diagnosis. He also reconciled with my sister who he’d had a lifelong feud with (though they’ve fallen out again now). 

This week he’s got so so much worse andxweve been told 1-2 months. He’s gone from a Bob Hoskins lookalike, jolly, funny, dancing, being intentionally embarrassing to less than 9 stone (he was about 17st). He can barely walk, has stopped eating and is just so weak. He categorically does not want to be in Hosp or hospice and I’m frightened I won’t be able to manage on my own to fulfil his final wish. I know deep down he’d want me to move in and nurse him in his final weeks but my little one is feeling it and doesn’t sleep without me home. I feel so torn like I’m letting everyone down. He does have nurses going in but he fakes how well he is so they only go in once a week (plus he won’t let them in any more than that).

Dads very proud and when I stayed with him the other night I had to lift him in and out of bath. He’s such a proud man and I know he’s ashamed that I have to help him so I feel like I’m shaming him every time I do but I can’t leave him as he’s too weak to manage himself. 

These last 4 day’s I just can’t stop crying. One day I even thought he’d actually died then remembered he hadn’t - I feel like I’ve been grieving him since May which sounds awful like I’m wishing the time away. I just want to shout ‘stop’ to it all and let me just have my old dad back. I feEl so  useless and powerless and so so angry, though I feel I have no right as he got it from smoking his whole life. I can’t sleep and I keep bursting into hysterics at totally random times when 3 seconds before i was fine. If I laugh or smile I feel so awful as I just think of him at his house and how he must be feeling. I just want to take it all away for him and can’t bear that I can’t and can’t bear to watch him fade and suffer and weaken each day. 

Im sorry this has turned into an essay! I didn’t know all this would come out but I find it so hard to open up as I have to be the strong one for my siblings and my little boy. Just miss my dad so much even though he’s here. Is that really weird? I don’t even know what’s normal anymore.

sorry to take up so much space and time

CM xxx

Jody H
Posted by

So sorry you are going through this. Firstly.... stop feeling guilty.. you have done everything you can do. Your dad is making it very hard with his choices. Maybe he doesn’t even want to bathe. Just don’t do it. Just tell him the nurse will come when he wants one.

just because he is dying does not excuse inconsiderate behaviour.

he needs everything the community can do to help him.

his stubbornness is the cause of much of your anxiety and feelings of powerlessness.

i also don’t think it is stubborn of him to refuse treatment . I have done the same.

i don’t want my life prolonged just to live with pain.

in fact when pain happens to me I will refuse treatment for other lifelong conditions that has kept me alive.

this way I will die but not from cancer.

your father has decided to die on his own terms.... he’s probably lived his whole life like that.

my advice is to talk to him about an End of Life plan.

just talk and listen .... accepting his choices and then fit in where you can and never ever feel guilty.

i might be wrong but I suspect you are an eldest child who has an exaggerated feeling of responsibility.

Spend time sitting quietly with him and drink wine or coffee or tea or beer. Whatever he wants. Don’t DO for him just be there for what’s important... love.

i wish you all the best and send much love to you and your dad.

Ginajsy
Posted by

Dear CM

I am sorry that I have only just seen your post. How are things now?

You sound absolutely exhausted and torn in your post here. I do hope that things are a little less fraught now. 

Please do not feel guilty, I know this is easier said than done of course, but it is very clear you are an exceptionally loving daughter and are doing absolutely everything for everybody. But please do remember yourself in all this.

I think it is clear you need support, please may I point you to some places that may be able to help.

Firstly can you speak to his nurses about your concerns that he is putting on a front and that he does need more help?

For further emotional and practical support the Macmillan free phone is 0808 808 00 00 and they are now advertising being open 8am to 8pm seven days a week.

Good groups for you to join on here to talk to others in similar situations if you would like to may be supporting someone with incurable cancer or carers only and finally family and friends . If you click on the links I have created it will take you to each group.

Best wishes

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
court
Posted by

Hi ,

Just want to let you know I totally understand the Grief part . I felt as though I was mourning for my mum inside . I would get in the car , drive to her house with tears running down my face . Then switch off the engine , dry my eyes and enter the house with my mask firmly in place . The situation ended up different for my mum in that she responded to chemo and I honestly had to learn how to stop mourning !! It was strange indeed .

My dad is very private and modest I would dread that too .

In what seems like a previous life now I used to be a community occupational therapist and had a percentage of my caseload for terminally ill patients . If I was you I would quietly prepare in the background resources that you can call upon. Establish links with a social worker or care provider and ask how you would action help for him at home when the time comes . If an informal care plan can be set up to make sure his wishes are met .

One thing I want to reassure you with there is not a nurse in the country could nurse someone on their own at the end of life care . There would be a team of them . So to expect you to move in and do all that whilst still being there for your own precious child is too overwhelming and I can see why you would feel anxious at that level of input . I would also suspect it would not be sustainable.

The disease causes the most stubborn of patients to yield to the process sadly so a lot of the details may be taken out of both your hands as the process develops . However that is not always a bad thing . I frequently get my mum’s GP to advocate ideas with my parents . 

Thibking of you and please do take care of yourself too .

Court