There are, however, choices to be made. J had an episodic work history, and stayed home for nine years taking care of our children. She has significant 401k savings and small Social Security payments, but not much else. The savings probably are enough to pay for two years of care in a top notch continuing care community.
I live in a stingy state. If we deplete all J’s assets and she goes on Medicaid, a federally funded program separately governed by each state, our state will pay for some of the home-based care she now receives. If she went into a nursing home, Medicaid would pay 100 percent. It will not pay a dime, however, for personal care. That is the level of care where she would live in a professional facility and receive help managing daily activities such as dressing, showering and toileting, which she can no longer manage on her own.
If I spend all her money on home care now, there will be nothing left if she needs personal care down the line. And then there is the trick of finding a personal care home that won’t kick her out if her money runs out before she needs skilled nursing care.
I spent several sleepless nights after seeing the lawyer. Until now, I had assumed I would be able to keep J home until nursing care or, G-d forbid, hospice. I am now beginning to see that may not be the case and am feeling guilt and deep loss. I suffer these feelings even as I read the literature that says it is better to make the transition to personal care while the person with Alzheimer’s is still with it enough to adapt to new routines.
I dread talking to J about this subject.
And I am getting ahead of myself. The lawyer has a social worker on staff who is going to do a needs assessment in the next couple of weeks. I have spoken to both our children and they want to be involved and supportive, as does J’s brother and his wife.
We will get through this, and will make the best decision we can.