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and I know at some point we may have to...but right now she can care for herself, she can feed herself, make herself a sandwich, bath and comb her hair. So how do I know if I am doing the right thing by her? I don't want her to feel like a prisoner here. It's EASY to say "put me in a nursing home!" when you are young and healthy...it's different when you are old and helpless..she may have meant it then, but am I bound by that? does she still feel that way? IT is so hard to communicate with her through the dementia.

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I would honor the request she made when she was in her right mind. However, some nursing homes require verification from a doctor that she requires skilled nursing care. Memory care sounds like a great option if she doesn't need constant medical care, but it is indeed expensive, and neither Medicare nor Medicaid will cover it. Whatever you decide to do should be based on what is best for you. Care giving for a dementia patient 24/7 will suck the life out of you, and quickly, if you aren't careful of your own needs and limits. Your mom certainly wouldn't ask that of you if she understood, and frankly it doesn't really matter. As we age and our health declines, the reality is that we don't always get to make our own choices anymore. Do what you can for her and let go of the guilt. It isn't your fault if she's too sick physically or mentally to be cared for at home.
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wantingtime, have you looked into assisted living? It might be the best of both worlds for her if she can afford it. Some AL facilities have a memory care unit -- expensive, but they are used to dealing with dementia. I would do what feels right to you. She was worried about being a burden. If she can live somewhat independently, I know she is not a burden to you. You will probably know when it is time to look for other arrangements.
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