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My sister 6 years 7 months ago #54002

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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My sister died unexpectedly today. I'm just numb.

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My sister 6 years 7 months ago #54003

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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So sorry to read that news. My thoughts are with you xx

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My sister 6 years 7 months ago #54004

  • juliannesmom
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Sandi, I am so sorry. You are in my thoughts and prayers.
Norma

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My sister 6 years 7 months ago #54005

  • TerriC14
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I am so sorry for your loss. My thoughts and prayers are with your family.

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My sister 6 years 7 months ago #54006

  • CindyL
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Oh Sandi, so sorry to read this! Thoughts and prayers to you and your family!

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My sister 6 years 7 months ago #54007

  • Melinda
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My heart goes out to you - I'm so sorry!

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My sister 6 years 7 months ago #54008

  • Rob16
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My heart aches for you, Sandi. You will be in my prayers, along with your mom and all of your family.

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My sister 6 years 7 months ago #54012

  • eklein
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OMG Sandi, that is shocking. Best wishes you you and your family as you struggle with this terrible news.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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My sister 6 years 7 months ago #54014

  • tamar
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Very sad news. I'm sorry, Sandi.

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My sister 6 years 7 months ago #54015

  • CindyAnn
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  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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I am so sad for your loss :( We are all here for you!!!

Cindy Ann

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My sister 6 years 7 months ago #54020

  • alisonp
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Sandi, I am so sorry to hear about your sister. My thoughts are with you xx

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My sister 6 years 7 months ago #54021

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Thanks, everyone. It's been a long day. Viewing tomorrow.

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My sister 6 years 7 months ago #54024

  • rhoda
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oh no. i'm sorry to hear that.
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My sister 6 years 7 months ago #54046

  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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I am so sorry sandi.
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My sister 6 years 7 months ago #54059

  • DeeDee Marie
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Sandi, I, too, and so sorry to hear about your sister's death. I'm not always on the forum and missed this. My condolences to you and your family. My prayers are with you and your family. I know how it feels as I lost my only sibling (brother) in 2002.
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My sister 6 years 7 months ago #54121

  • meredithjane
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Thinking of you Sandi,
I have experienced similar & it was a huge shock. Took ages to comprehend, especially as her family is interstate & not good communicators.
I hope you are able to nurture yourself enabling you to cope.
mj
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My sister 6 years 7 months ago #54149

  • momto3boys
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I just saw this Sandi and I wanted to add my condolences. I hope you are finding ways to get through this difficult time and please take care of yourself.
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My sister 6 years 7 months ago #54157

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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My sister lived with my Mom and took care of her. My Mom has memory and mobility problems. My sister was dead for two days before my Mom called anyone...she was in her bedroom downstairs on the floor. We don't know what happened yet.

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My sister 6 years 7 months ago #54165

  • meredithjane
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When my sister died it was from heart failure relating to diabetes.
She was 56, had recently separated from her husband, bought a nice little house & was looking forward to a fresh start. A mutual quilting friend rang me to offer her sympathy after an online quilting forum mentioned my sister's passing & I didn't know what she was talking about! My sister was found by a friend & it took 2 days for police to contact her husband & for him to tell her family!

Sandi, I hope you find out what happened soon & you can work things out for your Mom.
We have 91 year old in-laws, with permanent care, health & independent living issues.
mj

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My sister 6 years 7 months ago #54170

  • CindyL
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That must have been hard on your Mom, Sandi! I hope she is doing ok. Hopefully you'll find out what happened to your sister soon. What will your mother do now?

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My sister 6 years 7 months ago #54174

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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My sister was 51. No known health problems.

MJ, that is a horrible story. What a way to find out.

Cindy - my Mom is handling it ok. She is in denial and just pretends that my sister is still downstairs or running errands. I guess it's her way to protect herself emotionally. She hasn't even cried yet.

My Mom's care is now up to me. I will do the best I can, for as long as I can. The problem is that I can't do much these days.

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My sister 6 years 7 months ago #54175

  • TerriC14
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Sandi I am so very sorry about all of this. Your sister was a young woman. I hope you get answers soon.

For you mom I would get whatever help is available. Research all the social services and see what is available. Elder care is exhausting and can be somewhat overwhelming so getting whatever help you can is essential. Transportation help, housekeeping help, pharmacy delivery- anything you can line up takes pressure off you and gets your mom acclimated to outside services. Take care of yourself first- you need to be at the best level you can achieve to help her.

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My sister 6 years 7 months ago #54181

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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We tried that before when she got out of rehab twice. She doesn't want people in her house. She tells them to leave. "People steal things". When the ambulance came to check on my sister, she would only allow one EMT in. They told her sorry, we work as a team. Then the police came and my Mom kept yelling that she wanted my sister's purse immediately. I said, "Mom, they are cops". She didn't care. Worried about a purse when her house is swarming with police. My sister didn't own anything.

She locks her screen doors and we can't get in her house with a key. We don't even have a key to her doors. I keep telling her that it won't do any good to lock a screen door; anyone can break into it. She still does it. We get in through her garage with a code and that's all well and good until the power goes out or the door breaks.

She's not quite ready for a nursing home and assisted living costs about $5,000 a month for the nice places. One day at a time, I guess.

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My sister 6 years 7 months ago #54192

  • CindyL
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That's a lot for all of you to be handling. Hope things get easier soon!

Even though my mom knows she can't stay alone, she wishes she had her own place. We're getting along pretty good. We do want to get some help so Steven and I can take off if we want.

Thinking of you all! Take care of yourself too, Sandi! Hugs!

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My sister 6 years 7 months ago #54193

  • cs090978
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I am so sorry for your loss.

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My sister 6 years 7 months ago #54194

  • cs090978
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What state do you live in? I found out about a hidden Medicaid program in Ohio that covers Assisted Living, it is called a waiver program. My dad also thinks everybody wants his things, then we caught him in someone else's room stealing chocolate!

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My sister 6 years 7 months ago #54195

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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My Mom doesn't qualify for Medicaid. She has Medicare.

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My sister 6 years 7 months ago #54196

  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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Sandi
Medicare and mediciad are completely separate programs. Old people get medicare, poor people get medicare and medicaid. Medicaid pays for long term care like home care, assisted living and nursing homes. There are asset and income limits to qualify for medicaid. It is a State run program so the eligibility differs between states. Your mom might qualify for medicaid but she will always keep her medicare. I am an elder law attorney, but only in AZ. You can go to www.naela.org to find an elder law attorney close to you.
Emily

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My sister 6 years 7 months ago #54198

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Emily:

Yes, I know the difference. The problem is that the Medicaid funded homes are probably not a place where she would be happy. I don't know any other way to phrase that. She's one that falls in the cracks...not poor enough, not rich enough. We'll figure it out eventually.

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My sister 6 years 7 months ago #54288

  • Winnifred
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This is very sad news! Sending thoughts and prayers your way for you and your family!
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