Newbie: Hit a wall tonight

FormerMember
FormerMember
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Hi Everyone

I’m new and needing to reach out as have crumbled somewhat tonight

My dad is 68, and terminally ill. He was DX with CLL 7 years ago, and now is very near the end.

How near the end we don’t know, and that’s part of the problem. He had 10 days of palliative radiotherapy just before Christmas, he has immunotherapy every three weeks.. I feel like we (and it takes three of us) are dragging his bones up to the hospital an hour away from where he lives (2 hours from my home) and it’s all pretty pointless.

He is bed bound, with ulcerated weeping tumours that are now everywhere... he has the minimum amount of formal care he can get away with, relying on my mum for everything... he has an NG tube. 

I am watching both of them fade, trying to respect their wishes, which are not always compatible...support my kids, hold down my job (took pretty much all of Dec yet and know work are pretty cross he’s not dead yet)

It all hit me tonight, and then I feel bad as I should know better... I am a social worker, a qualified mental health nurse and a mother of four. 

Oh in case anyone didn’t know.. there’s this little pandemic on

I’m sorry to rant xxx I know so very many other families are going through so much too xx

  • Hi Angie 

    Sorry to hear about your Dad. It’s only human to feel frustrated and a lot more emotions going through what you have to deal with. My husband is on palliative chemotherapy and sometimes I just wonder how much strength I can muster up believe me it’s not easy. You have your job and your children as well so you are under a lot of pressure . Your Mom must also be exhausted could she get a bit more help to manage your Dad. I guess they are both frightened as well . 
     It’s easy for the situation to take over your life but you also have to look after yourself . It’s good to have a rant or scream cry or whatever that helps.

    Strength and hope to you.

    Love Miliexx

  • Hi Angie. I’m not surprised you’ve hit a wall after 7 years. I’m quite new to this so I don’t understand some of the technical terms you  use but it certainly seems like you’re all having a rough time. My husband has been recently told that his prostate cancer (that were told had been cured in January last year) has spread and is now terminal and he is just starting chemo. He has already said that he will have treatment while he can but if there comes a pint where it’s not helping and he has no quality of life he will stop. I obviously want him here as long as possible but I fully support his decision. I think that as hard as it is sometimes you have to accept the inevitable (I might say different when push comes to shove though and I have to let him go ) 

    Like Millie says would it not be possible to get him some more care - for your mums sake as well as yours. I know it’s hard because of lockdown-not even friends and family can help  can they  

    I’m still trying to work too so I do feel your pain- if you’re like me you’re just in a permanent state of exhaustion but still trying to function 
    Try not to be too hard on yourself-it’s not about knowing better - it’s very different dealing with things for work but totally different when it’s your own problems.   

    And never apologise for ranting- we all need to let off steam and what better place than on here. We all get it. You take care of yourself too and I hope you manage to get some help x x 

    Jillian 

  • FormerMember
    FormerMember

    Hi everyone, 

    Thank you for your kind comments. My dad died Monday morning. He passed in his own way, seemingly deliberately waiting until the nurse popped back to the surgery for more supplies to go, so it was just us there with him. He was sedated by then but coherent the day before. We had finally been able to agree that nurses would take over his care, something he had strongly opposed.

    We were exhausted by then. But he got his way with that too and no one but mum and I did it. He had CLL for eight years then developed squamous cell carcinomas all across his head, neck and chest. He was valiant and my my mum was so dedicated.

    I feel mostly relief now, I think with deaths like this you grieve long before they actually go. I don’t think that’s recognised enough personally, just how hard those final months, weeks and days are so please allow yourselves some kindness and self care. 

    You are all in my thoughts

    Dad was a local journalist so I was lucky enough to write an obituary for him. 

    As like all our loved ones, he was so much more than the “patient” cancer reduced him to in the end. 

    www.eadt.co.uk/.../david-lennard-tributes-after-from-suffolk-7073116

  • Hi Angie I am sorry to hear your Dad passed away .He is at peace now. What a lovely obituary you wrote and it sound like he was a much loved man. It can’t have been easy for your Mom managing to care for him at home.
    Take care I think you deserve a rest now x