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:

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  • JIBBIE49
    I worked as a nurse at a large nursing home where we had several adult disabled residents like your sister, but much younger. They were very fragile people and I remember one doctor telling me that such children often don't live into adulthood. It was wonderful your sister lived to be 44.
    Your sisters and you are to be commended for being that dedicated to her. From my experience working in the nursing home, most people just don't have families that can be available like that since they have husbands, children and work they have to deal with.
    725 days ago
    I'm so sorry I missed this.

    I'm also so deeply sorry about your sister.

    You are in my prayers.
    1157 days ago
    I am sorry to hear about your loss and what you all went through. I know as a nurse that everything you said is true. At some point our leaders decided that they no longer wanted to take care of people like your sister. They started closing all of the group home facilities in my area where they received excellent care. Through insurance groups they set limits on how long patients can be hospitalized. It is about money. They prefer to give rich people tax breaks and the money which would be better off spent to help those that need it the most. You were a wonderful support system for your sister. She was blessed to have such a supportive family. I am sending a prayer for you and your family.
    1224 days ago
    So very sad. I am sorry for the loss of your beloved sister. 😢
    1224 days ago
  • CHRIS1126
    I am so sorry for your loss. You and your sisters did everything right but, unfortunately, that’s the way the system works. Hospitals and Insurance companies are a business and don’t really care as long as they get paid. The patient suffers!
    1224 days ago
    I'm so sorry that your sister passed...and the circumstances by which it happened. What an awful predicament for you and your family, as well.

    Perhaps focusing on being healthy will help you heal and boost your mood
    1224 days ago
    So sorry for your loss. Looks like you have some wonderful memories of Julie.
    1224 days ago
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