Have never walked in your shoes but I have big shoulders if they are ever needed. With hospice and other organizations, each state seems to be different in how they operate and what they provide, but I am a firm believer of being the noisy wheel until the needs have been met and problems have been resolved. If you need more help than you are getting - make noise and make it often. If one place will not listen talk to another ... Speak with you local hospitals and seek their advice on where to turn for help, ask your local church for help in finding the care hubby needs so you can rest etc ... Also many don't think to contact your insurance company but many times they have an excellent chain of resources they can offer to you ,... may wish to check on it...

Main thing is don't wait until you too are a patient before you get the help you and he need. I have heard it said often that manytimes being the caregiver can be as hard or harder than being the patient. Take care of YOu hon and seek out your friends for support let them know you need them even if they do not understand. You need support and friendship ... you need to laugh ... you need a hug ... but no one will give what you need unless you let them know it is needed... reach out hon.

I wish you the very best through this time and you will be in my thoughts and prayers. Please holler if I can ever do more and feel free to email me anytime if you need to borrow my ear or shoulder ...

Rita