Up and down

Dear Juju

I am in a similar situation, my husband is “end of life” with a very poor prognosis. It is 2.30am now and we are waiting for an out of hours doctor to arrive to administer something to help relieve his pain and vomiting. Like you I am “okay” when I’m busy or other people are here but in the wee small hours I am so sad and angry and feel helpless. And no matter how often people tell me I’m doing an amazing job of looking after him I still feel inadequate. I know my thoughts won’t make you feel any better but at least you know you are not alone with your struggle. 
Grasan

Thank you so much. It does help to know I am not alone

I have also felt the same with my feelings, it's so nice to know I'm not alone. My husband is now has terminal cancer, they say months. But we don't know how many, it would be nice to know so you can plan. He has just come out of hospital again due to having pain in his stomach.  

I feel OK when I'm busy, but every now and again I get very tearful. At times it's hard to write or speak how I feel. The only thoughts I go through which is torture, WHY can't I cope. But we are all coping in our own way, there is no right or wrong way on how you feel, but to you you are not coping.

We are all doing our best for our loved ones, keep going you are loved. It's so nice to know we all feel the same. I too wish I could be strong with my feelings. Until I read messages on here, I can see I'm doing a good job & so are you. Xx

It really does help to know others are going through the same trauma. Thank you xx

Hi, my husband was told 3 weeks ago he had approximately 3 months left to live. Then we came home with pills and phone numbers. We were devastated. We have had visits from McMillan and District nurses but they still haven't got his pain under control and I feel like screaming at someone! I do as much as I can for him but I have no control over his pain. It feels like he has gone downhill very quickly in terms of mobility and he's not eating much. I feel very alone in the evenings and at night, he wants to sleep alone now, and as I went off sick to be with him there's also now a financial burden. It's awful as I feel I just want to be with him but I'm so worried about other things it feels like my head will explode. Glad to have others who get it x

Hi Juju, things have progressed much faster for my husband than we hoped. 3 weeks ago he was told he had 3-4 months....he's gone onto a syringe driver and oxygen today and I was told its more likely days now. Family and friends have popped in to support me but it's now 10.45pm and I feel very alone with just us two. Neither of us has slept much for the last few days and we're exhausted. Frank is now settled and asleep but I feel scared of something happening when it's just me here. I can't really sleep in case he needs me to help him get a drink, a tissue or if he needs a wee.. I feel drained emotionally, physically and mentally....plus I'm worried about how I'll pay the bills being on SSP....its such a hard cruel road

I agree. It is a very scary situation we find ourselves in. It feels that each day is just about coping. It's hard to enjoy and make memories when you are afraid all the time. Money worries just add to that. Keep going, you are doing a grand job for Frank. Xx

Sorry to hear your sad news Leebee.

Are you getting any support with what you are going through. Can you contact the Macmillan support people or is there a local hospice you can contact to just even speak too about your feelings or contact citizens Advice to see if there is anything you maybe in titled too.

Is there anyway that a friend or family that could do a night shift for you so you can get some sleep? 

My heart goes out to you & juju. Please please ask for help. ️️

I'm another going through exactly the same thing.  Up to about 10 days ago my husband was coping really well, but I fear we have gone to the next phase now of weeks rather than months.  Its really scary.  The palliative care nurse is coming tomorrow and I just hope she can give him some comfort.  He's not in uncontrollable pain (yet) but a lot of discomfort and nausea as well as being tired all the time.

Everything that everyone has written down here , feels like my life, it’s good to not feel alone like I’m the only one going through this. It’s a hard and a lonely roller coaster ride.