I am brand new to reaching out for support ... but I have been caring for my 85 yo grandmother in my home for 7.5 years now and I need a compassionate listening ear, so here goes! She has been mainly bedbound for the entire time, now has not left her bed for over 2.5 years due to a multitude of issues, but mainly PLS (cousin of ALS but slower progression). Her mind is still 80% there, but the body is failing her ... she is down to solely the use of R arm and head/neck movements. The help that I am able to get for her is so incredibly minimal that she cannot combat the progression of the disease at all.
Right now my main struggle is one which many of you can surely relate -- I am feeling overwhelmed and angry at the complete lack of familial support, financial assistance, and quality medical staff. She is too wealthy for government aid, yet not financially secure enough to afford some of the "hit-ya-outta-nowhere" expenses that characterize long-term illness. We HAD Hospice, but they decided she wasn't dying fast enough so they mandated her discharge. Now, I am begging a doc in the area to come see us since he is the only one who works w Medicare for house calls (even tho we are not in his business plan or service area). Praying for the best on this part!
I am just so darn frustrated that this is short-changing my intended life w my 3 tween/teen girls. I cannot take even an overnight vacation w them since her last step downward. In fact, I have compromised my salary severely to work from home. In conjunction w the economy, things have gotten so bad that I am LIVING on student loans - a practice that I find abhorrent in theory, but seemingly the only lifeline for me at the moment. Simple things like going to an orthodontist appt or out to dinner when invited by a friend req so much planning & guilt that I try to avoid it when poss ... I am starting to feel isolated. When I turn to my mother for a listening ear or perhaps a bit of guidance or <gasp!> empathy, her most typical response is, "Gosh, I hope you never talk about ME this way!"
Guess I just needed to vent. Raising children seems infinately more rewarding -- if we do a good job at parenting, they go off to live fulfilled lives and become successful in their own right; if we do a good job at caregiving, our loved one still dies. Not to say there is no positive experience, but the end result is so bizarre - like building something yet never getting to see the result of all of your diligently applied energies.
Thanks for reading and thanks in advance for your support/comments.