A Family of Strangers

Let me preface this by saying I'm sitting in the hospital at 9AM and I have been here since Tuesday at 9:40/10:00am. My brother, who has been treated with a strong antibiotic because of pneumonia and a fever four times beginning in April of this year, was brought to the ER because his fever spiked to 102 and that's been our experience of the first sign he's getting sick. and since he's been really good at getting sick lately, his group home manager rightly brought him to the ER to be evaluated. They put him on a broad spectrum antibiotic and his fever went down. Then they admitted him. I was assured that 'this time' we'd figure out what was going on. Well that didn't happen.

He is being discharged today with a 14 day course of two antibiotics, one that he's had before and responded to and a new one recommended by the infectious disease doctor. His doctor came in today to follow up on what he had told me last night.

John has Down Syndrome and his body ages faster because of the translocation of the genes. John is getting pneumonia because he's aspirating. Even though I have concerns about his mouth/swallowing muscles atrophying if he eats pureed food all the time, a)i'm not a doctor and b)i'm not a speec therapist so I should just accept that they know more than me and he needs pureed food with sips of liquid basically forever. Also, while he didnt' get pneumonia this time and the culture didn't grow anything, I should accept that he has Down Syndrome and that he won't be around forever and 'this kind of thing just happens because things change with people.'

We played a few word games when I explained my sister is older and doesn't have these issues, although John is different behaviorally and he jumped on that to explain that first I was telling him they were alike but now I was telling him they were different. He also suggested that I should visit someplace like Children's hospital where they treat more patients with Down Syndrome.

In a lovely recommendation for the empathy of said doctor, he praised my 'advocacy' for John and when I blurted out 'what else do you expect me to do, not care?' he asked - well what would you do if there were no John.

I think it was at that point that I agreed to respectfully disagree and he said 'you are a smart lady and we're just talking.'

The manager of John's group home also talked to this doctor and arranged the discharge for the time we'd mentioned and she/the home have his antibiotics already. But per the doctor, John could spike a fever at any time because 'that's his life now'. What a life.

The case manager here at the hospital has been in to see me twice - once while we talked about John's experiences last time and once to give me a copy of paperwork I already had.

John's group home attendants have come up three times with clothing and to check on us so they've heard my point of view.

The nurses have all been good, particularly the ones that had John before. He is ready to go home. At 11'ish last night while I left the room to get an ice cream bar, he got out of bed, alarm and all and walked down the hallway in his diaper. I switched him to shorts, let him sit up in a chair for a half hour and then ushered him back to bed. I have fresh scrapes, bruises and scars.

I'm his sister and I love him. I get told how awesome that is but while I appreciate the compliment, seriously what other choice is there? I love him and I've spent half my life taking care of my brother and sister. But that too was thrown in my face by the doctor 'what would you do without john'? Well, as a matter of fact, I was married, I brought my sister to live with me, then I divorced and then I moved to milwaukee and then I came home because John and family needed me here and I was lonely. What options are there when you love your brother and he needs you?

The hardest thing for me is the lack of control in all of this. Medicaid caseworkers. People sitting in his group home talking to his county worker about his health. People making decisions about what kind of food he should eat. Doctors deciding his problems are just 'normal' for Down Syndrome patients. State and Federal Government who would rather pay strangers, well meaning and organized, trained strangers, more than my mother and my monthly salary combined to take care of John even though if they paid half that amount to my mom or I, we could take care of him at home and it could be a full-time job for us but life doesn't work that way. And then comments about money - what the nurses make by the same people who make 9x what mom and I made to take care of him. But its not really income the powers that be say. It was just his social security and a little bit set aside by the state. Does ANYONE wonder why families can't take care of their disabled children at home?

So we give ourselves up to being part of this Family of strangers who in many ways have more power than your own blood. Doctors and lawyers, nurses, caregivers, house managers and caseworkers. In the end, I think I end up feeling as powerless as John must feel.

But we must all get along because its the best its going to get for John.