Welcome to the boards. I am so sorry that you are going through such serious health issues with your mother. She is still so young and it is so tragic...
Well, so far there is little that I can add. My experience has been, as Barb has said, the NH rehab experience with my father and his hospice care a few years later. All I can say is the more allied the family is, the better.
We had private nursing care when my father was on hospice. That was only during the daytime and was dreadfully expensive. I do not know much about what is available in PA, but there may be funds available for care-givers through the Department of Social and Health Services (that is the name of it in our state) which is the same department that handles welfare recipients. I have heard of other care-givers receiving such funding but it isn't much... It might be worth checking out.
My attorney said that if there are no assets, then Medicaid will pay for a NH. Of course, spending down the assets is a personal decision and can have adverse affects in the long run. It may or may not be advisable.
The thing is, we oftentimes make promises that are hard to keep... The promise of never putting someone in a nursing home is very familiar and can cause us all some stress. I care for my father full time but my mother is in an assisted living situation by her own choice. For that I am grateful... Yet, she enjoys it! I now think of assisted living, in some cases, as similar to my experience moving out of the house into a college dorm - but my mother was healthy when she moved in. The activities and her freedom is unique. So, for some, it can be a good thing - there is a social life and meals!
I don't know if this helps at all. But our parent's experience in a NH does not have to be lonely or neglectful... The quality of their stay can depend upon the caring love and support of their family that will visit them there and advocate for them in the meanwhile.
I hope these comments help... Take a deep breath and do not fall prey to stress. Write down in your journal what you feel your choices are and rate them according to what is best for your mom and what is best for you all... Please keep us posted and know that we are here for you and sharing our stories which we hope can help...
Love and Hugs from Glenda
[This message has been edited by glenderella (edited 07-22-2006).]