Posting on behalf of oldbat (a discussion forum member):

Hi Linda,

I’m so sorry to hear about your problems with your husband.  While I have no experience with cancer per se, I can sympathize with what you’re going through as a care-giver.  This has to be the loneliest, most exhausting experience one can face.

I’ve been doing it for seven years now.  My husband had a catastrophic stroke in 2012.  This left him paralyzed down one side, aphasic and brain damaged.  Because I am handicapped myself. I was unable to care for him at home, so he had to go into long-term care.  I struggled for six years, trying to live for both of us.  Not too successfully, I’m afraid.  His family are largely estranged and many friends, while initially supportive, soon exhausted their empathy quotient and, one by one, disappeared.  Eventually, my own health broke down and in February this year, I joined him in his care home.  Life is more tolerable now, but it is still very difficult watching him slowly decline.

I am so glad to hear that your children are there for you.  Not sure how far they have to travel to be with you.  Are you close to Texas?  How about other family?  And friends?  The couple that hung in with me were, literally, lifesavers.  I also found the people at Canadian Virtual Hospice wonderful.  It does sometimes take us a few days to get back to you, but all of us are care-givers like you. So we truly understand and can commiserate with the problems you are facing right now.  We’ve been there!  I’m also wondering if you go to any church in your community?  If so, sharing your story there can result in all kinds of support The same with local and community associations.  It is so important to reach out to people and let them know that you are hurting and need help.  I do understand that this takes energy and that is something that you really don’t have much of right now.  But you do need help and it is available.  The energy you expend in reaching out now will pay huge dividends in the assistance you will receive, once you manage to include people.  

I am so sorry if you read any of this as “preaching” to you.  That is not how it is intended.  I really do empathize with what you’re going for.  I only wish someone had cared enough to give me the same advice.  I believe a few people did try, but I wasn’t capable of taking it in.  Please, please learn from my mistakes.  I spent six years in a solitary hell.  Don’t let that happen to you. 

Also arm yourself with all the information you can get on your husband’s current condition and prognosis.  This knowledge will give you the power you need to advocate on his behalf.  And on your own, which is equally important.

Please keep in touch with us at CVH.  You’ve joined a caring community.  Let us be here for you.

Oldbat