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 have totally blocked out/ignored both my brother’s mental health and medical issues for the past 3 years in favor of caring for mom, which is much more than enough to handle.
But the reality is that the next chapter will probably be his rapid decline and possibly demise. I’ve worried about how horribly it would affect mom if he died before her. But I haven’t even faced my own emotions about losing my big brother to mental health issues/substances/self neglect. The person who was my hero growing up.
So sorry for this sad and maddening end. It is heartbreaking when a LO cannot accept care that may help them . But it is her mental illness which prevents her from getting a chance of being well.
It’s not uncommon for magical thinking on and off of getting better during end of life. I think it is a way to cope with fear and anxiety .
For you , your sister and your parents , I’m so sorry that you may not have the reconciliation who hope for . It is tragic what her mental illness has caused .
I wish I had more comforting words .
(((Hugs)))
Sister has really REQUESTED at this point no visitors.
As Way says, she is having magical thinking that somehow she will be here in the Spring. LET her think that. The time for reality talk is over. To say "There will BE no spring for you if you don't take CHEMO" would be cruel. Let her do the "When it's Spring...." thing.
And honestly SP, you have said a bit about your Dad's health. I honestly as an RN don't want your Dad on an airplane right now. Sorry. That's the way I feel about it. We know about airplanes and clots and how hard the pressure can be on the arteries and vessels in the body.
If Sister were begging to see you all then I would say do it if you can. But she isn't. In herself she knows she isn't well enough to deal with the realities of family right now. Dying is something we do alone. We do it alone no matter how much we love family, and often their support and love is a BURDEN TO THE DYING. I ushered out a whole lot of folks. Let me assure you of that. The expression from back in Medieval times of "he turned his face to the wall" is true. The dying are busy with a whole new journey. They LEAVE us even as they are still living. And they TRY sometimes, try so hard for one last rally to say "I love you". But they are already on their way and often the living are a burden to them.
Thanks as always for keeping us in the loop because we are all thinking of you. This is a tight little community here with a whole lot of kindness and love. We are in your corner no matter WHAT you and your parents and your Sis decide is their/your own best decision for yourself.
She is cycling rapidly through mania/depression right now. I think her bipolar has gotten worse but I don't know because we go through stages of months or years not actually talking to her on the phone. My parents have always tried to keep the connection open with email and they always know when she is doing badly because she cuts off email contact also.
I can see her refusing to see us if we came to see her. She hasn't asked to see anyone, only asked for a ride to NYC in the beginning.
I am also not telling her that she won't be alive in the spring (though you never know). I don't want to make her dying harder on her then it probably already is when she is lucid about her reality.
My cousin has Bi-Polar and I worry about him out in Cal. He is 70 with no family out there. ALZ runs in his family too. Mid 70s when you start to see symptoms. Its a hard mental illness to deal with.
Article concerning flying and a pacemaker
https://www.bostonscientific.com/en-US/patients-caregivers/device-support/pacemaker/travel.html#:~:text=It's%20safe%20to%20travel%20with,following%20precautions%20before%20taking%20off.
Bring flowers, marking
Winter's end
🌷
She told my mom that last night was a really rough night for her but didn't elaborate.
She is in isolation because she has a cold they are worried will turn into pneumonia.
She has not had any solid food in 5 days - more than likely because it has become painful for her to swallow food or she is just not hungry anymore. I don't know about fluids. A month ago she said she had lost 25 pounds. I expect that it is a lot more at this point.
It is frustrating not to be able to talk to the nurse or doctor and ask about her condition and what medications if any she is on (she told my mom the robe that my brother bought her, which she said she loved a few weeks ago, now scares her - is it her bipolar or a side effect of medication she is on that may be ramping up the bipolar? We have no idea).
We are just muddling along in the dark here feeling like are hands are tied and unable to help her in any way.
I saw a movie last week called "Funny People" and ironically Adam Sandler who played the lead role had AML (I had no idea this was in the movie until I started watching) that they said would not respond to chemo and he was on an experimental drug to see if that would work. If it didn't the doctors said he would die. At the end of the movie the character learns that the drug did work and he is no longer dying but in complete remission. All I could think was that could have been my sister if she had just tried treatment.
Take comfort in that your sister landed in a good facility that is taking care of her and did not throw her out on the street .
She has been lucky landing where she did . At least you know where she is , and that she will be kept comfortable and warm .
(((Hugs)))
It doesn't feel real because I talked to her Wednesday and so did my parents. She still was unable to really talk clearly because of her mouth sores but I did tell her I loved her. They said she sounded pretty bad in the morning but they called her again that evening and said she sounded a lot better. She gave no indication to them or me that she knew she was going to transition into dying starting on Thursday. I was going to call her Thursday but decided to wait until Friday to call her and tried around 1 PM her time but she didn't answer the phone so I assumed she was sleeping. She died at 4:40 PM.
I had expected she would live until at least March or so and I even mailed her a card on Thursday the day before she died that she will never get.
She died keeping her family in the dark about everything and at a distance.
On Monday my parents were finally able to talk to the doctor and the nurse who was with her on her last day. He said that she refused all IV's, and all pain medications and even water that was offered to her. He checked in on her every 10 minutes all day Friday and she did not appear to be in any severe pain though he did offer liquid oxycodone which she declined with a grunt as she was not able to verbally speak. He said her eyes were open and she appeared to be looking at things around the room ( I wonder what she saw as I have heard of people seeing loved ones, etc before they die). The last and final time he checked on her she was gone and he said her face looked peaceful and relaxed. More than likely she bled to death internally since they had no indication of cardiac arrest and she did not have trouble breathing. My parents are refusing to do an autopsy and I have no say in the matter since they are the next of kin.
There's just so many emotions when someone you love dies like this and you are not even able to have one real and meaningful conversation with your loved one because they don't believe they are really dying and before she was unable to talk she was cycling manic and paranoid for most of the time and didn't want to hear anything negative. So everything that should have been said was left unsaid, except I love you, but did she even believe that? I will never know.
I am happy she is finally at peace and that she died safe and warm and taken care of in the hospital instead of the street. I just wish she didn't have to die to get that safety and peace and comfort she had been searching for most of her life.
I told my parents I would make a memorial video for the family and even that is really hard because there are so many decades of gaps in regards to pictures, etc that is bringing up so much traumatic stuff to deal with. I am lucky though that she sent me a bunch of pictures in 2019 but that is the most recent ones I have.
For so long I had to compartmentalize the fact that my sister was homeless. I would think about her every day but tried to push the homeless part out of my mind because it was too hard to think about.
When my mom told me that the funeral home would take her body and send her belongings to them it really hit me how painful and difficult her journey has been on and off since she was 16 years old. The only thing she had with her in the hospital was a green and white striped bag that contains most of her life. Thinking about that is devastating. Wondering what is in that bag is even more devastating. I checked my PO Box today hoping she had sent me a letter but it was empty. I am hoping that she wrote us all letters and they are in that bag.
My parents are bringing my sister home one last and final time, this time it is forever.
I teared up as I read your message. It brought back a lot of my own memories.
I am so sorry for the loss of your sister. I lost two brothers and it’s hard. It’s even harder when we see our parents grieve for their child.
I took my mom to say goodbye to my oldest brother who died in 2013. It broke my heart.
You told your sister that you loved her. That is enough. Don’t be overly concerned about things that weren’t said.
I remember standing by my brother’s bedside as he was dying. He was in a coma by then. I believe he heard what I was saying to him.
I told my brother that I loved him before he slipped into his coma and I found comfort in knowing that I had expressed my love to him.
My other bother that died recently, died suddenly, so I didn’t get the chance to say goodbye. I had spoken with him frequently and he knew that I loved him.
Give yourself time to process your emotions. You have been on an emotional roller coaster.
Wishing you and your parents peace as you grieve your loss. Sending you many, many hugs.
So sorry for this tragic loss . I wish I had more than the cliche words that she is finally at peace . I do not want to minimize the anguish you feel due to the circumstances being such that they were/are. You told her you loved her . I think that meant a lot to her .
((( hugs))).
(((Hugs)))
"We are not human beings having a spiritual experience. We are spiritual beings having a human experience."
-Pierre Teilhard de Chardin
The tears I've summoned are for YOU, my friend, that you've lost your sister (for now) w/o having had the chance to see her and hug her and remind her how much she's meant to you. But take comfort in knowing that she KNOWS all you're feeling, and all the love you have in your heart for her.
My deepest condolences on the loss of your dear sister.
I know you know this, but there was no way "Spring" was going to happen. Without pouring in almost daily blood she couldn't survive. Even IF she couldn't survive.
And not so much she was bleeding inside but that her bones marrow could no longer make the componets needed to make blood for her. As I told you, the not having the red blood cells is not a hard way "to go" relatively. And I told you of my friend making that choice in the ER. Finally. After a torturous fight to live.
Your Sis died as she lived, SP, and in my experience most people do. And however we may judge how they lived, it was how they lived. As Oliver Sacks said, the mind beset with mental illness and dementia has a REAL world. It just isn't our world. Did he die of Leukemia? I seem to remember he did? Or another blood dyscrasia.
You are right. I believe she had very loving care. I was an RN, and when once my brother worried over a friend who left everyone, who would care for him, a man with HIV, I told him the loving nurses and docs in a hospital would care for him. It was the best part of my job, that the homeless got the SAME care I could give to Milton Friedman when HE was my patient (the admins sent nicer flowers, that's all) .
And sometimes some people are more comfortable with that--with the loving care of strangers0 then with family believe it or not. Sometimes family is the worst to deal with issues, and the least trusted.
I agree with others. Your words of "I love you" is all we have. It is the only worthwhile gift we can give to another EVER. It asks nothing. It is simple. It is that you have memories of love. And you will love even when you cannot understand. And that is what you and your family did.
She is at peace. Grieving is so much easier when all issues in a relationship are resolved. It is harder when there are "what ifs" and wondering. But your sister is at PEACE and free.
SP. It is where we are ALL HEADING. I know that's hard to get, but as one of the Buddhist teachers says "We are all just walking one another home". Or in your case, TRYING to walk her home; she wanted to do the journey on her own. And that was HONORED. She may have suffered from her own expectations of family, and family's hope and expectations of her for long enough. Life can become too hard.
My love out to you. I knew we hadn't heard from you for a few days, knew that couldn't be good. I wish peace on your Sis. She played her cards as they got dealt to her, and she did it her way. And now she is free, and you NEVER HAVE TO FEAR FOR HER AGAIN.
But they always took her phone calls and emails and never once rejected her when she reached out to them.
The only regret they have is that they just could not let her move back home and live with them because they knew from all the past times they did it just led to heartbreak and anger and bad things.
Helpless is the perfect way to describe the feeling of seeing someone keep destroying any hope for a life free from homelessness and not be able to get them to see it.
I am reading a decades worth of emails between my sister and I and I see the pattern and it breaks me all over again. I don't regret all the ways I tried to help her but I do regret not just letting her be who she was without trying to save her (which she saw as judgement)
I wouldn't wish this on any parent, child or adult to have mental illness. It devastates not only the person afflicted with this disease but every single person who loves them.
Sending prayers to you all.
I am sorry that you and your family are grieving. And at the same time probably thankful that your sister is no longer in physical, mental and emotional pain.
🙏🙏
It is quiet when someone passes. That's the thing I notice. Breathing stops, but it's more than that.
Such a stillness. A lifeforce has left & travels on to whatever is next.
Fear no more for her.
The City of El Paso, Texas found my mom, who hadn't had the same last name as my brother for 35 years to notify her of his passing. In a different state.
I do believe that your sister was blessed by the care she received in the end and that makes it easier to bear knowing she was as okay as she could be.
I strongly agree with the belief that people see others who have passed in the room before they go, as you mentioned in one of your posts. I know in my heart that whoever it was guided her home. To perfect peace.