anticipatory grief

Shoo2

Hi everyone

 

I'm a newbie here, and I will start the caregiving 'journey' tomorrow. I always  thought that journey was  something to look forward to...not anymore. I think a new word needs to be used, since journey sounds too  nice for what's coming. I don't mean to sound pessimistic- it's just that I'm so scared. Scared of everything to come.........I guess that's why it's called 'anticipatory'. I can't remember a day I haven't cried  since we got the diagnosis 8/22/17 that my  husband of 16 years has stage IV lung cancer. We are blessed that he's going to be on a chemo cocktail of 2 drugs, with the addition of Keytruda. 

However, I would be ever so grateful if anyone out there who has or is going through this hell- how do you cope with the overwhelming grief of knowing what will be coming? I know that sound horrid to say, even before the treatments start, and of course I pray that this treatment will give us more time. I asked my   husband how he's coping right now, and he says he is dealing with his own grief on how hard this is, now and in the future, for me and his daughter. I just reminded him that no one asked for this trainwreck, but that we just have to get through it, no matter what, and to try not to feel guilty. Poeple keep  saying "well, enjoy every minute you can with him'. That's the rub. The more time I claw back from other chores, or work or just daily  living to be with him makes me hurt worse. Am I wrong in feeling this way?

Most days at work, I don't let too much in, but on my way home, (and most nights when I'm wide awake) I weep at the drop of a hat,   all I can think of are how am I going to get on with....everything that has to be done now or that will need to be done one day when he's gone.

 

I honestly believe I  am starting to withdraw a  bit as the pain is just too  intense, and in my mind, I know that it SO wrong, but I can't help myself.

 

Any suggestions?  

Thanks for just reading.

shoo2

TheTerry

"Wrong" is ... well, wrong

None of what you're feeling or doing is "wrong." What you feel is legit (and normal, for what it's worth) - but it would also be legit if you felt nothing because you're numb or trying to protect yourself. Everyone deals with this in their own way and all of those ways are legitimate and right for them. The situation you and your husband are in is brutal.

I'm caregiver for my kid sister who's in palliative care with metastatic endometrial cancer. She's very philosophical and zen - and I'm not. In some ways, it's easy to be with her and in other ways it's hard. If I get teary, she says, a la Monty Python, "I'm not dead yet! "

I have times of overwhelming sadness, times that feel almost normal like when we have just a regular conversation about current events or when we were kids, times that I just have to focus on work here like laundry or medication schedules. I'm all over the map.

There's all the standard advice, most of which is impossible to follow when you're sad and caring for someone and also working, but it's still good advice if you can make it work - try to stay in touch with a friend or friends who you can be honest with (ideally in person or on the phone - hearing another voice, as opposed to reading text, is valuable); try to take a break when you can (it doesn't mean you're trying to escape from your husband); try to sleep when you can and eat as well as possible although heaven knows the easiest food to grab is rarely the most nutritious. I took a mindfulness course a few years ago and although I fell off the meditation wagon, sometimes just doing a few minutes' of breathing exercises and focusing on my breathing gives me a bit of a break.

Finally, allow yourself to really enjoy even brief pleasant moments - a joke with your husband, feeling good about the way youve organized his meds and other care items. It might sound silly, but you really have to take full advantage of little successes.

Good luck. I'm thinking of you...