I find it absurd that families are forced to take on the burden of caretaking, whether they want to or not. We don’t have the room, the money, the patience. We work full time during the day and then have to come home to our second job of caring for a family member who needs our full attention. That’s if we’re lucky. Otherwise, we have to give up our jobs to caretake full time. We are stressed out, burned out, angry, ignored, and overehelmed. We don’t get time off, breaks, and forget about vacations. We almost rejoice in just being able to go to the grocery store. We sit in parking lots alone and scream, we cry into pillows in the dark, we look in the mirror and hardly recognize the sad person staring back at us. We’ve lost everythIng that used to bring us joy. We get no help from other family members, yet they have all the answers on how to handle the situation. Previous close ties to siblings are tattered, if not severed completely. Friends don’t call anymore and depression from isolation, among other growing health problems, keep us in a constant state of exhaustion. We are told by the well-intentioned to “just get them into a nursing home or assisted living”. Unless you or your family member has a large sum of cash, assisted living for the majority of people is out of the question, and there are so many qualifications for nursing home care, that most people are left out of this option as well. The family member requires constant supervision and care, cannot take care of their own daily needs, yet is not “medically compromised” to live in a long term care facility. “Get home care, respite care, granny sitter or whatever”. You still have to come home to changing diapers, fighting hygiene, medications, cooking meals that may not be eaten, belligerence, off the wall comments, non-compliance, answering the same questions over and over, having to yell because they can’t hear you, and dealing with hours of silence because you have nothing left to talk about or could talk about if it weren’t for diminished mental capacity. Our lives are irrevocably turned upside down and nobody cares.
Do you live in a state where there are Assisted Living places that accept Medicaid?
If mom's income is over the limit for Medicaid, a Miller Trust can be created to deal with the overage, which reverts to the state.
It is rare that there is no other option than caretaking 24/7 of a difficult elder. Difficult to go to another option? Sure. But impossible? No. There are many difficult situations posted here, and posters always come up with alternatives. They may be difficult to implement, but they are options to the current situation that the original poster wrote about.
I wish I had an answer for you. From your post you've tried everything. I'm glad you're on this site and I hope you find an answer.