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I just got some very sad news

lynn

By lynn,
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lynn

lynn

Posted
Posted

My sister is 50. She has had a disease which causes painful boil like sores at sweat glands. Horrible to look at, they travel, taking over more areas, constantly drain and painful. It seems that every health professional knows exactly what it is and there is no cure. Just surgery to keep the person comfortable a little longer. My mom was talking to a nurse friend of hers and her friend told her most patients don't make it past 55 but the way my mother described my sisters symptoms the friend told my mom that she is near the end. :crying:

 

Please remember Lisa in your prayers and thoughts that she will be comfortable as she can be and that my dad, she lives with my parents, will be more patient with her. I don't think mom is going to tell lisa the entire truth about her disease for it will just depress her further. It's a very sad time for all of us. All of my sisters kids are adults and she has 2 grand children. They lost their father 4 years ago

 

Thanks for reading.

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Momof3littles

Momof3littles

Posted
Posted

I'm sorry :(

 

I don't know the back story, but I am not sure I agree with withholding info about where she is in the disease process. Perhaps I don't understand the circumstances fully, but it seems that could be valuable info. She may want to engage in end-of-life planning, living will, setting up POA documents, may want to investigate hospice/palliative care options. Is it possible that she'd want to know so she can focus on prioritizing time with grandchildren, etc.? I can understand not wanting to burden her with the info, but I hope no one is keeping her in the dark. Have any of her care providers discussed this with her?

 

I hope I'm not overstepping, and I think you and your mom have your hearts in the right place. But I do think that people have the right to know info like that, because it may shape how they prioritize their remaining years, and they may want to set up legal documents and end of life planning, for example.

 

Again, I'm so sorry. I hope I haven't overstepped. Just offering you my honest thoughts as someone who has worked in healthcare.

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ocelotmom

ocelotmom

Posted
Posted

I'm sorry :(

 

I don't know the back story, but I am not sure I agree with withholding info about where she is in the disease process. Perhaps I don't understand the circumstances fully, but it seems that could be valuable info. She may want to engage in end-of-life planning, living will, setting up POA documents, may want to investigate hospice/palliative care options. Is it possible that she'd want to know so she can focus on prioritizing time with grandchildren, etc.? I can understand not wanting to burden her with the info, but I hope no one is keeping her in the dark. Have any of her care providers discussed this with her?

 

I hope I'm not overstepping, and I think you and your mom have your hearts in the right place. But I do think that people have the right to know info like that, because it may shape how they prioritize their remaining years, and they may want to set up legal documents and end of life planning, for example.

 

Again, I'm so sorry. I hope I haven't overstepped. Just offering you my honest thoughts as someone who has worked in healthcare.

 

I agree. Unless she has some sort of severe cognitive impairment that would prevent her from understanding/remembering, it is not kindness to keep her in the dark.

 

She may already also know from her own research or gut feeling, and being open about it gives her the freedom to discuss her feelings, plans, etc. and not feel that she has to protect *you*.

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jms

jms

Posted
Posted

Praying for your sister and your family. What you describe sounds like Hidradenitis Suppuritiva. If this is the disease your sister has I am glad your mother has not relayed the information from her friend, because her friend is mistaken. I have HS, and it can be hard to live with, but it is not life threatening on its own. Every doctor I have been to and all the information I have read has confirmed this. It does increase the risk of getting certain cancers. Many people find they can control it somewhat through diet and finding out what triggers an outbreak for them. If you do a search you will find more information that is both helpful and hopeful.

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Slartibartfast

Slartibartfast

Posted
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If my sibling had a serious illness I would discuss it with them.

 

My youngest sister had breastcancer, we all know her prognosis. She knew her prognosis. When her liver began to fail we all knew what that meant but she knew more than anyone because she was a nurse.

 

My sister passed away just a couple weeks ago and it was devastating but she knew, she always knew.

 

This link has more information about the illness mentioned above, if that is what it is.

 

http://www.patient.c...Suppurativa.htm

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melissad2

melissad2

Posted
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Praying for your sister and your family. What you describe sounds like Hidradenitis Suppuritiva. If this is the disease your sister has I am glad your mother has not relayed the information from her friend, because her friend is mistaken. I have HS, and it can be hard to live with, but it is not life threatening on its own. Every doctor I have been to and all the information I have read has confirmed this. It does increase the risk of getting certain cancers. Many people find they can control it somewhat through diet and finding out what triggers an outbreak for them. If you do a search you will find more information that is both helpful and hopeful.

 

 

:iagree:

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Perry

Perry

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Posted
My mom was talking to a nurse friend of hers and her friend told her most patients don't make it past 55 but the way my mother described my sisters symptoms the friend told my mom that she is near the end. :crying:

That nurse had absolutely no business saying that. She doesn't have her facts straight, and even if she did she doesn't have all the information to ever make a statement like that. The only one that should tell your sister that is her own health care provider, if it were true. And I very much doubt that it is.

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Perry

Perry

Posted
Posted

It's occurred to me that the nurse was probably thinking your sister has Cystic Fibrosis. CF patients have some issues with their sweat glands, but it is a totally different illness. They usually die before age 40ish. Believe me, you would know if your sister had CF. It's diagnosed early in life and is a chronic, severe illness.

 

The nurse was confused.

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melissad2

melissad2

Posted
Posted

 

That nurse had absolutely no business saying that. She doesn't have her facts straight, and even if she did she doesn't have all the information to ever make a statement like that. The only one that should tell your sister that is her own health care provider, if it were true. And I very much doubt that it is.

 

 

My thoughts exactly...

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