It was a shock hearing this news over the weekend and something I never expected as leukemia doesn't run in our family at all. This after she changed her phone number and cut off all contact with me 3 years ago because she didn't like something I said.
Sister thought she had the flu but started having chest pains when exercising so thought maybe a heart issue or stress. On Friday she couldn't stand up and was taken to the emergency room.
At first they thought she had COVID but blood tests revealed she was in blast cell crisis. They had to transfer her to another hospital where she got a blood transfusion and received a diagnosis of APL.
She is now on ATRA and will be in patient for 90 days while they try and treat the cancer and she also has pneumonia and is losing her eye sight from the cancer.
I am not sure how to feel about the whole thing. I don't want my sister to die but I can't imagine going through all this and living in a shelter plus her untreated mental illness. Tragically this has been her life for almost 30 years. She gets independent living and finds something wrong with it and leaves to go back into the shelter system. It is never ending.
I would never tell her this but I am fluctuating between feeling like it would have been better had she chosen to not get treatment. But then I think maybe this will help her turn a corner in her life (but I know it won't because she has been at ground zero before and nothing changes).
Just feeling sad and scared for my sister.
I am so sorry to hear this.
Can I ask, SP, how you found out about this?
Did your sister reach out to tell you of this?
Do you live in the same area?
I am just so very sorry.
She may be well advanced.
I have had friends go of acute leukemia, and in one instance the friend was "over it" in terms of the fight, and when taken to the ER refused the transfusion and peacefully went to sleep. She had done the good fight and it wasn't working and she was exhausted with it. It was an option and no one in medical attempted to talk her out of it tho at the time we were both in our thirties only.
Things have come a long way in terms of treatment, but your Sister may have let this go a while.
Just so sorry.
I feel sad for your sister too, and sad for the fear and pain you're experiencing on her behalf. I hope something good comes out of all this, for her sake and yours. Hugs.
Mom still held strong and refused to budge. The doctor said they would call back and never did.
This morning they found out that her lungs were filled with fluid from the antibiotic they were giving her for her pneumonia and they gave her a diuretic and got a lot of fluid out of her lungs and she is breathing fine now and oxygen is at 90%. The other doctor told my mom that she may have bled to death if they had intubated her because her blood is not clotting because of the leukemia.
I wish you peace.
Feeling sad & scared for your sister is understandable. It is never nice to feel sad & scared but you are feeling. As hard as this is, this is part of life.
Mental illness is a heavy burden & instead of a trade off & being immune from physical illness I wonder if it seems to mask symtoms or delay diagnosis. I met someone recently with Sz & a small cough. Stage 4 Ca dx. It will be quick & despite being a total shock for family, I guess in a way it means less drawn out illness.
I read once that while feeling is hard, it is better than shutdown, denial, numbness.
Kind thoughts to you today through this crises.
I do not know if your sister has listed you on HIPAA forms so you can get info but you can give info that m ight be helpful you do not need to be listed on HIPAA forms for that.
Knowing if she is compliant with instructions will help the Social Worker find solutions that MIGHT help.
You can not change your sister or what she choses to do. You can be there to support her in some respects, but if she is non compliant with meds and instructions I doubt there is much you can do.
This is her battle.
Sorry
Thinking of you and your family.
It's hard to imagine that a homeless shelter would be considered a "safe discharge" for a cancer patient with untreated mental illness, but if she has not been declared legally incompetent, it could be. I, too, hope that this crisis will bring about a change in sister's life and direction--that she responds to the cancer therapy AND gets treatment for her mental illness.
I think if she moved in with my parents again it would kill them. As it is they are taking it really hard knowing their daughter has cancer and might die. My mom told me my dad was crying all day yesterday after last night when the hospital called and said it was life or death and they needed to intubate her. I have never seen my dad cry. Ever. That's just the type of person he is, he keeps his emotions in check (he was a marine and a police officer)
It took me a long time not to feel guilty about her living on the street but I know that she was given so many options for help not just by family but social workers, programs for the homeless, etc and that no one can seem to reach or help her.
I honestly don't know why she is choosing to get treated for the cancer. Then I think who am I to say if she has a good enough life to want to try and get better and live. Maybe I am the one who has a problem with it and she is perfectly happy living this way.
My mom says she's tired from everything that she is taking and how sick she is, and I know that she probably is. But I can't help but wonder if she doesn't want to talk to mom or dad because that is what she does. Maybe it is a little of both.
I don't know but it is bringing up a lot of stuff for me right now in regards to how she has treated us all and I am waiting for her to rescind the access she gave my parents to the doctors any day now.
I feel like I can't even mail her a card because I don't know how it will be received since she went no contact with me for 2 years now and I did email her once during that time a year later to try and see how she was doing and she said I thought I told you not to contact me and then she blocked my email address.
About your idea of sending a card ?
I have a mentally ill sister who I have no contact with. Whether I did or didn’t have contact with her she isn’t happy and complains .She is very toxic , and abusive , No contact works better for me.
Anyway when her husband died from Covid, she expected everyone to come down to North Carolina for the funeral . There was a near blizzard in the North East that was going to hit us so I and my other siblings did not go . My nephew arranged live virtual viewing via Zoom or whatever.
I ordered flowers sent to the funeral home and I sent a card to my sisters house, totally assuming that she would send the card back to me without opening it , which she did . But I sent it , so she could not say that I didn’t send her a card, which she would have done . She also sent a card back to one of my other sister’s and called her to tell her she was mad that she didn’t come down to the funeral.
I don’t know the circumstances between your sister and yourself . Only you would know which is worse , sending or not sending a card . It sounds like you want to send one , so maybe you should especially since this could be end of life for your sister , even if it’s just to comfort yourself .
I totally agree with your response. My heart goes out to people suffering with mental illness and for the families of those who have been affected by their illnesses.
No one knows who will become mentally ill. Sometimes, it is related to brain chemistry. It can be hereditary. Trauma can bring on disorders as well.
Mental illness has nothing to do with a person’s intelligence. There are brilliant people who have mental illnesses. Others have great difficulties functioning in their day to day lives.
I hope the stigma will be removed from mental illness one day.
I think our understanding of mental illness is better than it was in the past but we still have a long ways to go. I cringe when I think about our mental asylums of the past.
Way.
I am fascinated by AI. Certainly, it can be a wonderful thing or a disaster depending upon the
situation.
That said, here is a suggestion for helping you find peace. How about telling your parents about the card and that you are trying to reconnect? Whether or not your sister accepts the overture, at least they, and you, will know you have acknowledged the pain she is in.
Thinking of you.
I knew she would do it (it's what she has done for 3 decades now to the family). I just didn't think she would do it that soon into her hospitalization and treatment. So the only updates my parents will get is if she dies and then they will notify them as the next of kin.
I honestly don't know why she is bothering with treatment. Her almost entire life has been ruined because of her mental illness. Why try and get cured from cancer so you can live homeless and in misery with your disease that you won't get treated for? What's the damn point? I have spent so much time over the years trying to save her, trying to help her find people to talk to, facilities and programs, all with the same end result. Same for my parents.
They were even talking about having her come live with them again once her in patient treatment was done. I am grateful that she did this early on because I shudder to think about what would have happened to them if they tried again to have her live with them.
I am not a heartless person and I would have moved heaven and earth to help my sister. But sometimes you really do have to move on from loved ones in situations like this.
What your sister is doing is intentionally cruel, hug your parents extra for the heartache that must be to them.
I am so sorry that you and your family are going through this heartbreaking situation.
Thinking of you. Know you will update us when you hear anything.
I see others are suggesting long term care. I would not suggest either you or your parents attempt to intervene in any of that. Leave that to the state. As you will know as a long time member, being mentally ill takes no rights from you in so far as making your own decision; it isn't considered incompetency under the law almost ever. And your parents may try to help and end up with this up and down yo-yoing with is common to your sis and a whole lot of mentally ill. Given there has been this estrangement I think family should suggest guardianship of the state if there is any guardianship at all, and make no attempts to intervene for the time coming when out of hospital care is needed.
Leave it to social services after telling them that family attempts are over would be my advice.
Continuing to pull for your family and think of them.
I see some feel that your sister is purposely doing this or that. I doubt that is true. Really there's little "reasoning" in a case like this. She's ill. She doesn't function in "reality " much of the time.
I am glad you sent that lovely card, and I suspect it's all she'll allow from you over all. But that isn't designed to "DO" anything at all "to you". It's just her, and how her broken brain functions, or doesn't.
I was so angry yesterday but today I just feel numb. Resolved that nothing will ever change with my sister. She is too far gone in her mental illness to ever get better. The sad thing is that her treating the cancer will probably make it worse for her. I know the side effects of the ATRA are anxiety and depression which is not good for someone with bipolar and other mood disorders.
I fully expect that she will at some point refuse further treatments or medications. She may even try and leave the hospital. Honestly I am hoping that she decides to stop treatment. It is the only way she will truly ever be at peace and free. Maybe she decided to withdraw consent via HIPPA because she didn't want my parents to force treatment on her. I don't know.
When she was admitted to the first hospital on early Saturday morning the only reason the doctor called my parents (she had put their name and number as a contact I am assuming) was to ask them to convince her to be transferred to another hospital where they could treat the leukemia (once they diagnosed it from the blood test).
When she went to the other hospital and consented to the cancer treatment the doctor said she signed the forms and smirked at him. He was so stunned and weirded out by the expression on her face that he mentioned it to my mother on the phone. She explained to him about her bipolar and he said that makes sense because something was off with her but he didn't know what.
She has medicaid and receives disability via social security for her mental illness so I can only assume they will help with getting her a place to stay once the 60 - 90 day course of treatment is completed successfully. There is nothing my parents or I can do at this point to try and find her a place to live. She is actually pretty resourceful and I know she will find something. Ironic since she lives in a homeless shelter but ALL of that is her choice because like I said when she gets placed in an actual apartment or housing she blows it all up and leaves of her own accord and goes back into the shelter system to start over from square one. From her erratic behavior I can only assume she is currently not taking any medication.
I was reading emails and letters she has sent me over the years and see the pattern quite clearly. At first the new place is perfect and great and everything is awesome and then a few months in things change and it is a terrible place and people are stalking her and are the place is dirty, unclean, too noisy, etc, etc, etc. That's when I know she is ready to cut and run. No amount of reasoning with her makes a difference and if I tried or my parents tried we would get cut off from her. Sometimes for months, most times a year or many years go by.
It reminds me of Britney Spears and how she always deletes her Instagram then says later puts it back online. Only my sister does it with changing her phone number and blocking emails.
My mom said she is still going to call the hospital every few days just to see if my sister has changed her mind about letting them give her information so if I hear anything new I will update this thread.
Do let your parent know that THEY can tell the doctors anything they like. They are free agents. It is the doctors that have to obey privacy rights, not the family. Family can tell anyone anything they like. So they can inform medical of her mental health issues.
She will be very good at getting Social Services on board as well, and your parents should call SS themselves, tell them of her admission and mental health history and that currently she will not communicate with family.
It is then on the Social Workers and your Sis to get together and do what they will do.
Honestly, SP, and I have learned this the hard way, the FAMILY is the very WORST OPTION in dealing with someone mentally ill. There's just too much angst. They will gum up the works.
Best to you. You are on my mind and in my mind.
You have a realistic view of this situation. You can’t change it, nor can you do anything about it to make it better.
Riding a situation like this out is never easy. I am so sorry that you are dealing with a situation where you don’t have any good choices except to sit and wait for a devastating outcome.