Update on mom - cancer

[lauraw4321]

I don't know if y'all remember the back story - my mom was diagnosed with her 2nd round of breast cancer a bit over a year ago. It was right before we went to Disney. It turned out that despite it being a very aggressive kind, and triple negative, it did not seem to have spread. She has had lots of chemo, double mastectomy, immune-boosting stuff, and is having her last treatment tomorrow. Then she'll have a scan and start them every 3 months.

She finally asked her oncologist for her prognosis.  He said 2-3 years, with a 40% chance of recurrence. She wasn't expecting such a bad outcome - I am not surprised.

She does not want to tell anyone. Like she specifically said that we aren't to tell her sister until the day before she dies (I think mostly because she's mad that her sister didn't come when she got diagnosed). I encouraged her to focus on things she wants to do. And to think about whether she wants to embark on chemo again if the cancer comes back. 

I'm worried about my dad. They have what I would call a co-dependent relationship with no boundaries. He is still working, but when he isn't working, he's with her. He's given up everything he enjoys and spends a lot of time crying. I'm scared about what life is going to be like for him afterward.

I'm an only child. I work full time. I have 3 kids. I'm looking for general advice. I'm not even really sure what I'm asking for. BTDT? Suggestions? I don't know. I'm not "allowed" to talk about it with anyone (I did tell my husband - she asked me not to and I said I couldn't agree to that) so I'm yelling into the internet void.

[happi duck]

Many (hugs)

One of my late sisters didn't want to tell anyone when she first got sick.  She was still coming to terms with it.  I was just gently available and offered to do the calls.  She eventually let me make some calls.

[East Coast Sue]

Hugs sounds very similar to my mom. She insisted that she’d “be fine” despite stage 4 lung cancer. It made things very, very hard on top of the already devastating diagnosis. 
Hugs.

[mommyoffive]

I am so sorry.  I am thinking of your mom and sending her lots of prayers. 

That is so hard that she asked you not to say anything to anyone.  Does your dad know?  

Maybe a support group would be helpful for him.  

[Katy]

I’m sorry to hear that. I’m glad she’s gotten more time than initially expected.

I don’t think I would personally honor her wishes to not tell the sister. It’s better to resolve it now than leave someone to deal with guilt after her death. 

[Kassia]

I'm so sorry about your mom's prognosis and that this is making a stressful and awful situation even harder.  Big hugs to you.  Wish I could give you advice - I know I'd be posting here asking for the exact same advice if I were in your position.  Seems like there's no easy answer.  

[Annie G]

I wouldn’t have any problem not sharing her prognosis with her sister. Sis knows she’s got cancer, so if your mom wants to keep her prognosis to herself I would absolutely honor that.  Also, as your mom processes what the doctor said she might change her mind about telling her sister. 
I’m sorry about the prognosis. 
Similarly, your dad is still processing hearing the news. Hopefully he’ll be strong enough to be there for your mom even though he’s hurting. so very sorry. 

[lauraw4321]

Thanks, all. My dad does know the prognosis. I mentioned to mom she should consider whether to do full blown chemo again if it does come back - she was extremely weak and sick for a year. She said she “couldn’t do that” to my dad. So I’m going to hope that she’ll re-think if/when that time comes. 
 

WRT her sister - she offered to come when mom was diagnosed. Mom laughed at her and said “what good would that do?”  Aunt isn’t known for being an amazing caregiver. I don’t have siblings so I really don’t understand their dynamic, but she pretty clearly wants to hurt her sister. For example, mom has thousands of yards of fabric. She made me promise that her sister can’t have any, even though she sews, because sister “never gave her anything.” She also told me I have to get all her jewelry from the house the day she dies. I don’t even understand that. Who would take it? And who cares?

[Arcadia]

3 minutes ago, lauraw4321 said:

She also told me I have to get all her jewelry from the house the day she dies. I don’t even understand that. Who would take it? And who cares?

My mom has very good relationship with her siblings. Still she didn’t want anyone other than my dad to know how much her health has deteriorated the few years before she passed. She just doesn’t feel it does any good for her siblings to worry and feel they can’t do anything anyway. What my parents did was make sure their wills are in order and I know that I am their executor and trustee for the wills.

As for jewelry, in my family it’s complicated. My mom was given all of her mom’s jewelry because none of her siblings and only SIL wanted them. They are antique style and don’t cost much. My mom had said that all her jewelry would go to me when she passed and I could take them even before she passed. My parents do not want my brother’s wife to have them. My brother does have a spare key to my parents home so my dad told me to take all the jewelry with me after my mom’s funeral. The only person who might want my grandma’s jewelry for sentimental reason is my maternal female cousin. I would be happy to let her pick any she wants as a keepsake and she knows that. The money my mom left to my brother and I equally would more than pay for whatever jewelry his wife wants.

[TexasProud]

Right there with you. Mom was diagnosed for her 3rd time last Labor Day.  Don't have any of the keep quiet issues, but the issue about what happens to my step-dad without her. Yep.

The two are each other's whole world. My step dad has been in complete denial. Complete.  But the last appointment before the trip, something cut through as we are running out of options for treatment since she hasn't been able to tolerate the drugs. He asked for prognosis and when the doc said 6 months with no treatment and a year to 18 months with.  She left the room and they both started crying telling each other that she doesn't want to leave him and he doesn't want her to leave. It was awful.  But needed.

It has been a journey.  Last October, absolutely no to caregivers, don't need help with finances, etc. etc.  Then I got on the bank account. Now my step brother and I have durable power of attorney for them instead of them having it for each other.

What I was supposed to start working this week was sitting down and asking my step-dad what he wants to do after mom is gone. ( Mom is on board with this.) He can't live alone.  Mom knows this and is SO worried about this.  But he will do anything she tells him to do.  So after he describes the kind of assisted living place he wants, the three of us will just go look. That is it. But we will narrow down to what kind of place he likes best.  That way, when mom goes on hospice, we will know where to put the deposit down and get the ball rolling to make it easier when she passes.

Now I hope the doctor is wrong. Maybe he will die before her. Maybe it will be 5 years. Who knows. But that is the next big hurdle.

So, my question is do you have the documents you need in place for what you need to do? It took awhile, but I now have them all. 

So sorry. Many of us are in this club. No fun at all. 

[lauraw4321]

32 minutes ago, Arcadia said:

As for jewelry, in my family it’s complicated. My mom was given all of her mom’s jewelry because none of her siblings and only SIL wanted them. They are antique style and don’t cost much. My mom had said that all her jewelry would go to me when she passed and I could take them even before she passed. My parents do not want my brother’s wife to have them. My brother does have a spare key to my parents home so my dad told me to take all the jewelry with me after my mom’s funeral. The only person who might want my grandma’s jewelry for sentimental reason is my maternal female cousin. I would be happy to let her pick any she wants as a keepsake and she knows that. The money my mom left to my brother and I equally would more than pay for whatever jewelry his wife wants.

I'm the only child, and I don't even have a key. No one in the family has key besides my dad. That's why it doesn't make sense to me.

[Arcadia]

4 minutes ago, lauraw4321 said:

I'm the only child, and I don't even have a key. No one in the family has key besides my dad. That's why it doesn't make sense to me.

My guess is that your mom is worried if she passed at home, her sister might grab the jewelry? My paternal grandma and a few aunts passed at home. Relatives did squabble over personal items during the funeral wake 😞

My brother and I did not have a spare key until my mom passed. However my brother does drop by often because my parents babysit my niece. My mom would say all the jewelry in the box are mine (partially true, 90% are mine) so my brother never look into the box. We relocated from Asia to the states so I left all my wedding jewelry with my parents. My brother and I are on good terms, my parents worry is about his wife eyeing the stuff.

[Selkie]

3 minutes ago, lauraw4321 said:

I'm the only child, and I don't even have a key. No one in the family has key besides my dad. That's why it doesn't make sense to me.

Maybe she's worried about your dad getting a girlfriend/wife who would want the jewelry? It's pretty common for men to jump into a new relationship soon after the death of their spouse, especially if they were very dependent on her.

[lauraw4321]

Just now, Arcadia said:

My guess is that your mom is worried if she passed at home, her sister might grab the jewelry? My paternal grandma and a few aunts passed at home. Relatives did squabble over personal items during the funeral wake 😞

My brother and I did not have a spare key until my mom passed. However my brother does drop by often because my parents babysit my niece. My mom would say all the jewelry in the box are mine (partially true, 90% are mine) so my brother never look into the box. We relocated from Asia to the states so I left all my wedding jewelry with my parents. My brother and I are on good terms, my parents worry is about his wife eyeing the stuff.

Ok, that's making more sense to me. It seems wild to me that someone would actually squabble at a wake, but it's a good point. 

[lauraw4321]

1 minute ago, Selkie said:

Maybe she's worried about your dad getting a girlfriend/wife who would want the jewelry? It's pretty common for men to jump into a new relationship soon after the death of their spouse, especially if they were very dependent on her.

That is truly laughable. If my dad gets into another relationship, I will donate a kidney to the first person who  matches me. I'd be happy for him, but he is the least social person I have ever known - there's likely a LOT going on there that won't get get dealt with. 

[JennyD]

I am so sorry, OP.  That is awful news, even if you were expecting it.

I would honor your mother's wishes not to tell her sister or anyone else in her (your mother's) circle.  

However, you need support, too, and I would not hesitate to lean on the people in your life who will be there for you as you go through this.  It is understandable that your mother doesn't want you to tell anyone, but it is also unreasonable. 

I have some experience with a very different but also related scenario, in which another family member's need for privacy in a prolonged, difficult situation meant that I was completely isolated from the support that I (in retrospect) very much needed.  I value privacy very highly and honestly, if I were in your mother's situation I'm not sure I'd want anyone else to know for quite some time.  But in that case I wouldn't even tell DH about my prognosis, let alone my kids, because I think it's just unfair to give people emotionally devastating news and then try to cut them off from their support system.  

Edited July 11, 2022 by JennyD

[Selkie]

4 minutes ago, lauraw4321 said:

That is truly laughable. If my dad gets into another relationship, I will donate a kidney to the first person who  matches me. I'd be happy for him, but he is the least social person I have ever known - there's likely a LOT going on there that won't get get dealt with. 

I honestly thought the same thing about my FIL, but he was in a new relationship within just a few months of MIL dying. I've seen it happen a lot. Men tend to have a harder time handling being alone, I think.

[kbutton]

1 hour ago, lauraw4321 said:

WRT her sister - she offered to come when mom was diagnosed. Mom laughed at her and said “what good would that do?”  Aunt isn’t known for being an amazing caregiver. I don’t have siblings so I really don’t understand their dynamic, but she pretty clearly wants to hurt her sister. For example, mom has thousands of yards of fabric. She made me promise that her sister can’t have any, even though she sews, because sister “never gave her anything.” She also told me I have to get all her jewelry from the house the day she dies. I don’t even understand that. Who would take it? And who cares?

I would encourage your mom to sort and give stuff to you as the time draws near rather than making you do all of that after she dies. I would honor the wish about the jewelry, but I don't think I would be able to make myself do that about fabric, but maybe that's just because I have a fairly narcissistic grandmother that asked weird things of her kids. They ignored some of it, BTW, and that was healthy to do. 

In some families, things just kind of disappear after a death vs. squabbling. I would guess that's why she might want you to take the jewelry. Again, I would just have her disburse it as she wishes beforehand if you can get her to do that.

 

 

[Kanin]

1 hour ago, TexasProud said:

So sorry. Many of us are in this club. No fun at all. 

I'm so sorry you are both in that club. I wish it didn't have to be that way. 

[prairiewindmomma]

3 hours ago, lauraw4321 said:

I'm the only child, and I don't even have a key. No one in the family has key besides my dad. That's why it doesn't make sense to me.

Petty feuds, especially ones that span decades, rarely are logical. My extended family has yet to have a funeral without someone blowing up over something—and often over really petty stuff—like a pair of scissors.  I would .02 she has some heirloom jewelry that went to her and not her sister and she is worried her sister wants to claw it back. 
 

My best advice is that you can’t control how anyone else handles your mom’s illness and death—but you can set boundaries around what you are willing to take on. Pick wisely and figure out what you will need to get from this moment to the other side of this. 
 

[lauraw4321]

3 hours ago, prairiewindmomma said:

So, this is the advice I need. Can you give some examples of boundaries? Some things I should think about?

 

Edited - sorry, I don’t know how I messed up the quote. I’m looking for examples of things I should and shouldn’t take on or at least consider. 

Edited July 12, 2022 by lauraw4321

[EKS]

I am so sorry.

Have you read the book Being Mortal?

[Scarlett]

I am so sorry.  This is very sad.  

[lauraw4321]

49 minutes ago, EKS said:

I am so sorry.

Have you read the book Being Mortal?

Yes. Great book. 

[EKS]

10 hours ago, lauraw4321 said:

Yes. Great book. 

There is another that shows how the principles talked about in Being Mortal were carried out by one family.  It's called Driving Miss Norma.

[DawnM]

So sorry.   I will be honest and say that I was relieved my mom passed away first as she was the co-dependent one.   Dad is more able to function on his own.

I am glad you have time to think this all through, and I am sorry you have to even think of it at all, all at the same time.

Hugs.

[prairiewindmomma]

Re: boundaries, I now live far enough away that the physical stuff isn’t as much of a challenge. But, for you, protecting time and space around your work, your one on one time with kids, your alone time, etc. You don’t have to cave to every request for a family dinner, to running errands three times a week, etc. Likewise, you can insist on hiring nurses rather than taking on personal care, etc.

Protect yourself emotionally. Some people don’t….die well. Understand the stages of grief and how that might look—wanting irrationally to pursue more treatment could be the denial or bargaining stage, and so on. A lot of people get very angry—because anger is easier to feel than deep sorrow. For yourself, ask yourself what you want or need from the experience of her last days and dying and then realistically look at whether that’s possible. Sometimes closure, resolution, and emotional healing just are beyond someone’s desire or ability to give, iykwim. Doing that emotional work for yourself is so important because it allows you to take a step back emotionally and not become entrapped in the drama.

I will think on this some more but I am knee deep in this right now so my comments are reflective of my current situation rather than previous situations I have been in. 
 

Hugs.

[lauraw4321]

5 minutes ago, prairiewindmomma said:

Re: boundaries, I now live far enough away that the physical stuff isn’t as much of a challenge. But, for you, protecting time and space around your work, your one on one time with kids, your alone time, etc. You don’t have to cave to every request for a family dinner, to running errands three times a week, etc. Likewise, you can insist on hiring nurses rather than taking on personal care, etc.

Protect yourself emotionally. Some people don’t….die well. Understand the stages of grief and how that might look—wanting irrationally to pursue more treatment could be the denial or bargaining stage, and so on. A lot of people get very angry—because anger is easier to feel than deep sorrow. For yourself, ask yourself what you want or need from the experience of her last days and dying and then realistically look at whether that’s possible. Sometimes closure, resolution, and emotional healing just are beyond someone’s desire or ability to give, iykwim. Doing that emotional work for yourself is so important because it allows you to take a step back emotionally and not become entrapped in the drama.

I will think on this some more but I am knee deep in this right now so my comments are reflective of my current situation rather than previous situations I have been in. 
 

Hugs.

This is incredibly helpful. You have no idea. Thank you. 

[lauraw4321]

Latest check up showed likely recurrence in lungs. She’ll have a CT guided biopsy sometime soon. Oncologist went immediately to what meds he wanted to start once her port was in place. I asked what the side effects were and he waived me off. I did manage to later have a conversation with her asking her to at least consider the benefits / downsides of more chemo. She said she wants to go to London and I told her I’d go with her. 
 

I think she’ll likely opt for aggressive treatment, but I said my peace. I’ve talked to my work about the possibility of needing to take a leave of absence. I think it’s likely she’s going to need a lot of physical support. 

[Tanaqui]

Oh, it's so hard to deal with. *hugs*

[Harriet Vane]

I'm so sorry. (hugs)

[Kassia]

Hugs to you.  I'm sorry for you and your mom.

[Amethyst]

I’m so very sorry to hear this. This is so hard. (((Hugs)))

[YaelAldrich]

That's tough news. I'm really sorry! 

[bookbard]

So sorry, it's hard. DH's mother never let anyone know what the doctors said, was always positive, but it became fairly clear to us what was going on due to increased hospital visits. She had two stints in the ICU before she died. It didn't make any difference to anyone whether they knew in advance or not, so I wouldn't worry about letting people know. It becomes obvious with increased sickness as time goes on. 

[Arcadia]

I’m sorry your mom has a relapse. My husband’s aunt passed one or two months before my mom this year from lung cancer. She was on oral chemotherapy for two years and bedridden for the last few months. Hoping that you and your mom gets to enjoy a lovely vacation in London and wherever else she might want to visit. 

[mommyoffive]

I am so sorry for the bad news. Sending  lots of good thoughts her way.

[J-rap]

I'm so very sorry for this latest news.  She is fortunate to have you in her life.  I hope you can go to London!  That would be a beautiful time and memory.