Oct 09, 2011 - 2:05 pm
Another horrible aspect of GBM is the pressure, exhuastion and emotional drain experienced by caregivers.....I take my dad to his treatments every morning....stay with him on weekends and pay his bills, take care of his house and mediate with doctors and make all decisions for him regarding his care, which obviously includes many hours of research during my "down time" when I'm home with my 4 children....I am also caring for my own family and home, but that goes without saying :)
Last night at 3:00 am while staying the night with my father, his fiance/partner sent me an email telling me she can no longer care for him, it is too hard on her and she feels she is dying every day as well. She will give me this week to make "other arrangements". The ugly truth of this disease is the lie that the primary caregiver gets stuck living. Since I do all the research and background work, deal with doctors etc., I'm also painfully aware of the truth and am looking as realistically as I can at what my dad is facing...without that reality proper decisions cannot be made. In 5 days I will be left alone to care for my father who is completely incapacitated in a wheelchair. While he can still currently transfer from the chair to the toilet, I don't imagine this will be the case for long. I feel he needs Ho****e care in the very near future but when you are the lone voice of reason there are consequences to speaking up. You are termed, negative, doomsday, unsupportive and a "bad influence" My dad refuses to accept his illness and speaks of nothing other than "I'll do it next year when I'm better, Doctors don't want to say it, because they want to medicate, experiment and get as much billing in as they can before they throw in the towel....Family members who have the convenience of living out of state and functioning in pure denial say stupid things like...."well, we won't come visit now, because we're praying for a miracle....we refuse to think negatively, that could kill him" ?????? So for those friends of mine who have been down this road, how do you transition to needed ho****e care while "respecting" those living in denial and refusing to see the truth....
I suppose the referral will need to come from a doctor but I will need to communicate to them that I desperately need help, he clearly isn't improving AT ALL, and wandering around in some "positive" dream isn't addressing the needs he has and that I am having as a caregiver.
I hope as others go through this we can at the very least, be there for one another and share ideas about how to cope and walk through this process....the main focus on much of this site is finding a cure, a cure, a cure....but in truth there is no cure....and realistically will not be one for dcecades if ever. In the meantime, there are hurdles and challenges coming. The lie of denial is the hardest part for me and it seems to rob us of quality time and sharing true feelings with each other. I have commented that due to the lies of denial I feel that my time with him is "false". We go through motions like robots and say the "right" things or say nothing when there are clearly things that need addressed....all the while he fades away. By the time this family of mine "wakes up" and realizes the truth, we'll be writing his eulogy. I have a feeling they will say "why didn't you tell us, how long did you know...." The blame will surely fall on me.....I guess I will harken back to the many times I said.... "please come visit dad in September, October, now, tomorrow.....please.....while he's still healthy enough to visit".....
Best wishes .....