Claudia's car broke down today so she can't come take care of Jim this morning. I'm resting now after getting him up and bathed. My phlebitis has been acting up so I can't stand for long periods. Jim has gotten much stronger but he still requires a lot of assistance.
Right now I'm wondering about other spouses of spinal cord injured people. When Jim was at TIRR I'd see women pushing baby strollers with more kids in tow walking beside their young husbands in wheelchairs. Then there were the older women trying to help their paralyzed husbands.
These women were most likely being told the same things that I was told. "You need to learn how to care for your husband by yourself. This is how you catharize, give injections, do bowel programs, roll him over in bed, and on and on and on." I received absolutely NO psychological counseling at TIRR. So, I assume these women, also traumatized by this huge change in their lives, were treated likewise. My friend even told TIRR's doctors that I was severely depressed.
The goal at TIRR was not to make the patient better but to move him out of the health care system and into the home. We were given 6 weeks at TIRR after he moved from SW Memorial Hospital. Jim was totally paralyzed from the neck down. I was still in physical therapy from my knee replacement surgery.
I understand that insurance companies decide how long someone gets health care. But, that doesn't make it right. No one at TIRR would admit that Jim needed to remain in the hospital longer. His occupational therapist strapped a razor in his hand and pronounced him able to shave himself. His physical therapist rolled him onto his side and told him that he could do it himself.
That was NOT true. Jim could do so very little by himself. He had to be fed by someone else, put into his chair by a lifting device, catharized, tilted back when his blood pressure dropped.
My point is that insurance companies control TIRR, the other hospitals, etc. My beef is with the pretense: Health care workers pretending that it is all right to boot severely injured people out of facilities long before these patients are ready.
I knew I was not physically capable of taking over Jim's care. The attitudes of the workers at TIRR were that I was just inadequate.
This denial of the needs of patients and their families contribute to the mindset of so many in this country that we do not need health care reform. Jim and I have good health insurance but still we didn't get enough assistance. What about everyone else? If doctors, nurses, therapists, etc. keep bowing to the insurance companies and refusing to admit that their patients need further care, we can be sure things will not change.
Do not make the injured parties feel inadequate. If something is wrong, admit it. That's the first step towards reform.