Picking myself back up after sister's illness and death (gained 15 pounds)
Saturday, March 24, 2018
My sister Julie, who was just 44 years old and severely intellectually disabled (functioned at about 1-2 year old level and could only say a few words), died in November after getting pushed out of the hospital too early after a surgery.
I'm still having nightmares because of how the hospital and how the Dept. of Developmental Services (DDS) treated her and us. She could not get appropriate care based on her level of disability, even with us (her sisters) advocating for her.
My sisters and I had to stay with Julie 24x7 at the hospital for 2 1/2 months to protect her because her care was so inappropriate. And... they kept telling us that we were being overprotective and that we could go. DDS was completely ineffective in protecting my sister, as well. Instead of evaluating Julie's needs for themselves or supporting us, they sent a nurse who just agreed with whatever the hospital said. Hospitals are businesses. DDS is supposed to protect disabled people..
The hospital kept saying Julie could be left alone even though she had IVs in each arm and would pull them out if someone didn't guard her. There were many other reasons she couldn't be left alone.
The hospital relentlessly pressured us to send her to a nursing home for normal adults without offering her any extra help! That is the equivalent to thinking that sending an extremely sick 1-2 year old non-verbal person to an adult nursing home would be ok. We refused that, but finally let them pressure us into sending her to a pseudo-hospital, where they said they would give her 24x7 1:1 coverage (one person would be assigned at all times to be with her).
We stayed in hotels near the new pseudo-hospital for about a week (we weren't allowed to stay there overnight), going there every hour they'd let us stay, and helped her transition there. We thought she'd be ok because the whole floor she was on was for intellectually disabled people and the nursing staff was very reassuring. So, after a week we left her, with the plan of returning in 3 days for a big team meeting for her. We thought she was ok. Unfortunately, within 2-3 days of us not being there she died.
Anyways, I used food for comfort for about 6 months and gained 15 pounds. I'm picking myself back up.
Here's a picture of her blowing bubbles: