I wrote this on my own website... thought it may help:

We the jury in the case of you giving the ultimate act of selflessness - being a caregiver… find you NOT GUILTY on all accounts!

Being a caregiver is hard! There are days you are completely at your wits end, there are days you are physically, mentally, and emotionally exhausted. There are days you have no answers and nowhere to turn.  There are days you find yourself wishing it would all just end.

You have become an instant expert in understanding medical jargon, maneuvering through insurance forms, medication distribution, treatments, side effects, general palliative care, doctors’ appointments, visiting nurses, in-home care, assisted living arrangements, the anxiety of waiting for test results, and making life changing decisions for another individual. You are a spiritual guide, a cheerleader, you answer the ultimate question of ‘why me’, you provide comfort, a shoulder to cry on, and you have the strength of ten men.

There is no guidebook, no course you can take, no college degree that will educate you or prepare you for the fact that another individual, whether it is a parent, child, spouse, loved one, or friend has just put their life in your hands. There is someone in your life that is now suddenly solely dependent on you to guide them through the fear, pain, and anxiety of illness but most of all to guide them through to their final destination.

You’re living in a perpetual masquerade. You put up a strong front on a daily basis, telling one big gigantic lie over and over again “everything will be alright”.   When the fact of the matter is you are torn up inside, you want to swear, yell, scream, whine, cry, ***, run a way, and hide from the world.  When you signed up for this, you had absolutely no idea what an insurmountable mission this would be.  All of the people that said they were going to help, have suddenly forgotten to show up and you are faced with this monumental responsibility alone and you say to yourself “I can’t do this anymore!”

Yet, another day goes by and you manage to persevere. You fight through the pain, the anxiety, the tears, the exhaustion; you fight for one more day, you fight for yourself and you fight for someone who cannot fight for themselves.

There is no super hero cape, no cool costume that you get to wear, no party in your honor, no celebrations of your accomplishments, no badge of courage, or medal that you will receive. Yes, caregiver this is your life.

I’ve lived it firsthand. It sucks!  I have spent the better part of fifteen years being a perpetual caregiver.  First it was my ailing father, then shortly after my sister, and finally the only man I ever loved.

I’m here to tell you… you are awesome! We are out here, those who have lived it and those who are in the thick of it right now.  You are part of an elite group of warriors with battle scars and all.  You will get through this but you have to give yourself a break.

Stop worrying if you have done all the right things – because you have.

Stop feeling that you are failing miserably – because you are not.

Stop judging yourself and your abilities – because you are doing just fine.

Stop saying I ‘coulda, ‘woulda, ‘shoulda – because you did.

Stop feeling like you are a horrible person wishing it would all be over for both of you – because we have all been there and said that.

Stop letting the world play armchair quarterback on your decisions – because until they have lived it, they have no right to weigh in.

Stop letting people tell you how to feel - because we’d all like to see them walk a mile in your high heels – knowing they couldn’t possibly.

Stop feeling ashamed because you’re letting it get to you – because it can and will affect you in ways you may not even realize yet.

Stop feeling guilty for your own emotions, your own tears, and your own pain - because you are selfless, you are in fact human, and you are giving the ultimate sacrifice.

Stop Caregiver and give yourself a break – because you are generous, you are awesome, and you are remarkable in your own right.

We the jury in the case of you giving the ultimate act of selflessness - being a caregiver… find you NOT GUILTY on all accounts!

Hi VivvyP

I know how you feel.  My husband was diagnosed in January aged 53.  We had no warning signs until he found a lump in his abdomen and even then the diagnosis of cancer never even entered my head.  He was given a teminal prognosis as it has spread to his liver so it's just a matter now of 'getting on with it'.  He has chemo every other week and we have no other treatment options - just carry on with the chemo.  It's so difficult - we have just had a string of other tragedies in the last few months and sometimes it all just feels too much - but I feel so guilty as I'm not the one who is ill.  To top it all my friend (aged 57) died of cancer yesterday and seeing what her husband is going through just reminds me of what is in store down the line.  What treatment options has your husband been given?  All I would say is to try to just enjoy the time you have left together - that is certainly what we are trying to do - although he does get very annoyed sometimes and tends to take it out on my (think that this may even be a side effect of the treatment).  Sorry I can't offer anything else.