I agree with Ms. Mintz many things need to be done for caregivers. I have been taking care of my 2 seriously ill parents for the last 10 years. I spent my thirties taking care of my sick parents who were 50 when they became ill--they had never been ill a day in their lives. I am an only child and I have never received any financial or health assistance from the government--my parents ere too young when they became ill. They were in a lousy HMO, so I had to argue for all their treatments all the time.
My mom has primary progressive multiple sclerosis. My father has a rare cancer, carcinoid and carcinoid syndrome. His monthly injections cost $3000(now you know why the HMO did want to treat him). My mom was diagnosed too late, her disease was well advanced by the time they ordered an MRI.
Now, after 10 years of taking care of them and being outcast by friends and professional colleagues for giving up a lucarative career to take care of parents--no one else was stepping up to the plate--now my husband and I are both seriously ill. Now, I have a horrific pre-existing condition, my insurance just increased my premium by 50%, so I now pay 1,000/month. My husband had a heart attack 2 months ago because my toddler came home with the rota virus and it went to his heart. Now, he is on all these heart meds he never needed before.
About caregiving I have experienced alot. All my parents doctors never had any consideration for me. I kept saying if it were not for the caregiver, your patient would be dead already. They either don't understand that or they just don't care. I am responsible for their meds (ordering and preparing every week), going to all their appointments (3/week--and now add mine and my husband's appointments) and taking care of an entire household by myself. They only get 1000/month in disability too little to live on but too much to qualify for any kind of food or help program.
The one caregiver trick I figured out is that I make my parents doctors be my doctors, so then they are free to help me because now I am also a paitent of theirs. It also cuts down time. In one office visit, I resolve my issues and theirs.
Now, that my parents are 60 they qualify for Tricare, so my worries are lessened. But now I am sriously ill, so now I have to apply for disability at 42 years old. My meds a month cost 1500. I have no work points (even though I have been taking care of 2 seriously ill parents--that should count at least as work points for my social security)-I never got to practice my career because I have been taking care of them.
There is no high risk pool open here in Florida. It is very difficult here to get any kind of medical care. There are just too many people in this tri county area (dade,broward and West Palm Beach).
So what are the solutions for someone in my position who also has a 3.5 yr. old toddler? I will definitely be out of insurance by the year's end, I cannot afford 2500/quarter plus copays. My husband now has the heart of a 72 yr. old man with congestive heart failure, so he works only part time and he is a professional. I am most concrned that the sicker I become WHO will take care of my parents they way I have been?
