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New to this - and it’s so complicated.

New to this - and it’s so complicated.

Posted by Niffer8 on Apr 15, 2019 10:02 am

Hi. I’m new. 

My mom has had breast cancer 2 times before and now is on her third time - this time it has metastasized to her liver and bones. She’s been doing great letrizole and has been stable for 4 years. 

Last week she she ended up in the hospital with shortness of breath. There, I learned that she’s had COPD for several years and never told us. She’s been a closet smoker for 50 years and when they admitted her last week she was still smoking despite having pneumonia off and on since Christmas. Her scans show a spiculated mass - so likely a lung tumor. She also neglected to mention that there’s a huge mass in her remaining breast. She thought it was fat and hasn’t bothered to have it looked at. 

So now she’s in the hospital with multiple issues. We’ve yet to speak to a doctor and my mother is not exactly trustworthy with information. On top of that she’s hateful to my sister and me. Rude, snarky. She’s always been this way but now she’s worse. 

I guess I’m wondering if there’s anyone else out there with a loved one going through treatments who is unpleasant to their family and loads guilt on them at every possibly moment?  It’s so hard. It’s hard to show compassion and love when the person doesn’t appreciate it. It’s tearing me up pretty bad. It’s my mother. This is so hard. 

Re: New to this - and it’s so complicated.

Posted by Elizabeth06 on Apr 15, 2019 11:23 am

Hi Niffer8‍ 
i am a mom, with metastatic breast cancer.  I’m so sorry to hear your story.  My heart aches for all of you.
i can only think that your mom is just angry with life and what has been thrown her way.  And when people are angry they often lash out at those whom love them unconditionally.  You and your sister are easy targets.
she needs to find a way to acceptance, she is suffering.  but, you cannot change how she feels or behaves, you have to find your own way forward.
can you speak with the social worker at the hospital? Or find a support group?  Many cancer centres offer support to caregivers, perhaps speaking with others would provide some coping mechanisms.
you sound like you want to support your mom, despite her behaviour, and that is admirable.  Don’t take her actions personally.  Does your mom have a power of attorney for care?  Would she be receptive to setting this up or allowing the doctors to speak to you and your sister directly.  There shouldn’t be secrets, but, when life seems out of our control, we sometimes reclaim some measure of control in odd, self destructive ways.
there is a section for caregivers on this site that might provide some discussions you would find interesting or helpful.
Cynthia Mac‍ was a caregiver to her dad going thru treatment.  I have tagged her to get her thoughts on what you are dealing with.
you can tag another member by typing the @ symbol and then begin typing their user name(no space) blue boxes with similar names will pop up and you can click on the name you are tagging.
this is a very supportive, caring group and a safe place to vent.

let us know how things progress and know you are not alone.

Re: New to this - and it’s so complicated.

Posted by Cynthia Mac on Apr 15, 2019 4:17 pm

Thanks, Elizabeth06‍ For tagging me in on this one.

Niffer8‍ , as Elizabeth says, your mom is probably somewhere between afraid and terrified right now, and she could well be doing the “whys” and “not fairs,” on top of it all. You indicate that your mom’s behaviour toward you hasn’t changed from before, but it has ramped up. That’s very unfortunate for you and your sister. Are you and your sister close? If so, you two could commiserate with each other to help diffuse the hurtful things your mom is saying. You two can also reassure and comfort each other when mom’s temper flares at one or the other of you. Your Mom HAS been dealt a “bum hand,” but that doesn’t mean she’s justified in lashing out at you two.

Cathy (Elizabeth 06) raises some good points about power of attorney for care, and talking to her doctors. And definitely, if this is weighing on you, get help from the local cancer treatment centre about managing your own feelings. There are ways that you can speak to your mom that asserts yourself and can break the cycle of “meanness” you find yourself locked in. A bit of counselling can help you gain an understanding of where your mom’s head might be at right now, and give you some pointers about choosing words that could diffuse or deflect some of your mom’s poor word choices.

If you can get an understanding about why your mom is the way she is - whether it’s due to her present situation or from much further back - it will help you avoid taking what she is saying personally, and, if you can get some strategies for communicating with her, I think you’ll be able to feel stronger about your visits. Sometimes this can be as simple as saying, “Mom, I know you’re upset, but it isn’t necessary for you to speak to me that way,” instead of saying, “If you’re going to talk to me like that I just won’t come to visit.” - it can be all in the delivery. Someone once told me that when YOU change, the person with whom you’re locked in a struggle has no choice but TO change.

Sometimes, we have to give ourselves what others who should cannot. While you’re going through this, be kind to yourself and say kind things to yourself and about yourself. Please keep us posted as to how you’re doing.
 

Re: New to this - and it’s so complicated.

Posted by Niffer8 on Apr 23, 2019 3:56 pm

Thank you Elizabeth06‍  and Cynthia Mac‍ for your replies. I'm sorry it's taken me so long to respond, but my mother was released from hospital on Thursday.  We weren't't expecting her to be released until at least Saturday. My sister was away so it was on me to pick her up and look after her.  The last week has been pretty rough. This is going to be long, you may want to get a cup of tea before you start reading.

You're right, my mother has been dealt a pretty crummy hand - her whole life hasn't't been great. But her pattern for being mean has been going on for a long time, since before this diagnosis. She's manipulative and dishonest which is hard to witness. While she was in the hospital I watched as she told my brother (her favourite) that she plans on living until at least 2020 to see Trump voted out. When she talks to him, it's no big deal and she's going to beat this.  A few hours later she told her pastor that she was hoping to live for at least 4 good months, and that if she makes it through the summer she'll be happy. She also told him that doctors can't figure out why she has breathing problems but she bets that it is from the many tumours she has (she knows exactly why she has breathing problems and they haven't yet identified anything as a tumour - they have a biopsy scheduled for next month). Her story changes depending on who she talks to and the reaction that she wants from them.

The worst came when she was being discharged.  She asked me to come right away, that she was ready to leave so I rushed away from work.  When I got there, she hadn't't even had her visit from the social worker to set up her VON home care. I ended up losing 4 hours of work time that I have to make up because of it.  I didn't begrudge it until she lashed out at me.  The social worker asked if she smoked and she said no.  The social worker asked when she quit, and my mother paused so I answered for her: "Last week when they admitted her to hospital".  My mother responded by calling me a witch. She's never called me names before. She's mean, but she's never outright called me names. I've gone out of my way for her during this ordeal, visiting her every day, washing her hair, bringing her newspaper from her house (can't just buy her one, it has to be the one at her front door). I'm tired and I'm angry.  VON has been coming in every day now to check on her. On Friday she told them not to come on Saturday because I would be around to look after her if she needed anything. This was after I told her that my husband canceled a weekend trip for us to visit his family because I'm exhausted and need to look after myself for the weekend.

Power of attorney will be impossible. My sister went to the hospital and stayed there until she could talk to a doctor and get the real story because we can't trust my mother to tell us the truth. My mother berated her the entire time she was there. There's no way that she'll give up control of anything at this point.

My sister and I are not close. She doesn't like me. She pretends to, but she doesn't realize that I know she has a blog where she complains about me. Mostly stuff that isn't really rooted in reality - she hates my workout posts on social media (I'm fairly athletic and a spin instructor), she thinks I'm always trying to cut her down. I don't know where any of that comes from except maybe her own insecurity.  I honestly have no reason to cut her down or make her feel bad. I'm very happy with my life and where I've ended up, I don't need to make her feel bad to make me feel good.  That's just not my style. She and my mother haven't gotten along for years and her reaction through all this is to take control of everything, which is fine with me but I know she'll then go to her blog and complain about it (and me) even though she told me it was what she wanted to do. 

My father lives in the US with his wife. He and my mom are on good terms, they've been divorced for many years now. I called him as soon as my mother was admitted because I was scared and upset and I told him I needed my dad right now.  He told me he was sorry to hear about my mother, and oh by the way he had a heart attack and needs to see a cardiologist.  That's the last time I talked to him. So there's that.

So as far as family support goes, I've got very little. But I do have my brother.  He and I are very close, practically best friends. The problem is that he lives in Brussels so there's very little he can do right now, but he does listen when I need an ear.  

I do, however, have the most amazing husband in the world. He is my rock. He is so good to me. While all this has been going on he's been cooking our meals and generally looking after everything that I don't have the energy to do right now. He works at the hospital so he would go and check on my mother every day - not because he enjoys her company but because of me. He understands all the tests and things that they are doing and he explains everything to me, so I get more information from him than I do from my mother.

So, that's it.  The long story short - my mother is manipulative and miserable on a good day and now that she's looking at a terminal diagnosis, she's sucking my soul dry.  I alternate between sadness an fear of her death and anger that she would treat me this way and that my family is so obtuse. It weighs heavily on me every day. I have to call her, I have to check on her, I have to... I have to... 

Thank you for listening. I feel better getting that all out. I think you're right, counseling would be a really good idea.
 

Re: New to this - and it’s so complicated.

Posted by Elizabeth06 on Apr 23, 2019 6:40 pm

Hi Niffer8‍ 
Wow!  I did need a cup of tea...thanks for the heads up.
you have a lot of issues to deal with.  I would start by deciding what the priority is right now.  From your comments about caring for your mom, despite the obstacles she keeps throwing your way, I’d say you already know that relationship needs attention, and not because of her current medical status.
you've had a lifetime of dealing with her personality and behaviours and you need to develop new methods.
i would take advantage of the hospital social worker, any support groups available.  Do you have any kind of employee benefits that provide access to counselling?
Once you develop a new way to communicate with your mother, you will put those skills to use in all your relationships.  
There are threads on this site focused on caring for someone with cancer that might benefit you.
im glad you have a supportive partner and brother in your corner.  And I’m glad that you felt better after writing down all that has been building up.
you can vent here anytime.  

 

Re: New to this - and it’s so complicated.

Posted by Essjay on Apr 23, 2019 7:17 pm

Wow - you have a lot on your plate Niffer8‍! I am so glad you have a supportive husband and brother, that helps a lot . 

I agree with Elizabeth06‍ That you need some help from a counsellor either through your cancer centre or your workplace, to find the words to have a crucial conversation. Likely she also needs some help - she sounds pretty angry and needs to work that out.

it sounds like you want to be there for your mum and to support her, but her meanness is making it difficult, and she needs to be honest with you all, and accept that you do have other things in your life that you need to do too, including rest so you can be the best person for her.

Youve come to the right place to vent - we are listening xx

 

Re: New to this - and it’s so complicated.

Posted by Cynthia Mac on Apr 23, 2019 11:22 pm

We sure are, Essjay‍ !

Oh, Niffer8‍ , my heart goes out to you! You have the same kind of relationship that I have with my own sister, and it goes right back to preschool years.

Elizabeth06‍ and Essjay are both right - your mother's diagnosis has complicated your already challenging relationship. It's clear that you know where the issues are, and you need help with both the struggle you have going on within yourself and how to change up the way you deal with your mom in a way that doesn't compromise your own integrity.

As you know all too well, manipulative people are hard to pin down, and it sounds as though she's been at it for a long time. Clearly, she wants to be in control of who gets what information! Manipulators hate having their feet held to the fire, and when you did exactly that, she lashed out. 

It's hard when they choose to be deceptive with their health care professionals. Honest, I've got to sit on my hands at every one of Dad's oncology appointments to keep from bursting out that he's started smoking again! (Dad's smoking enough that I figure the doctor smells it as soon as he comes in the room, anyway.)

Caregiving can be a thankless job. Self-care IS important, and you are wise to see that. I encourage you not to let your mother manipulate you out of that much-needed time. You might enlist the help of "her favourite" to remind her to be grateful for the care you're giving her and the sacrifices you're making. Make yourself an appointment for self-care next Saturday, and make it known that you're keeping it. (I know that's easier said than done, but it would be a good first step in breaking the cycle.)

Know that you're doing good work, and that your mother is very fortunate that you've stepped up to do all this for her. 

I'm going to send you a friend request, but don't stop posting here! Doesn't matter how long the posts are!

Re: New to this - and it’s so complicated.

Posted by Niffer8 on Apr 24, 2019 8:33 am

Thank you for letting me dump my bucket. The advice and kind words you've given me are the best I've received since this all started.

Cynthia Mac‍ - Your advice to have my brother suggest to my mother that she be a little more appreciative is good advice. I can definitelty have that conversation with him. And I'm sorry to hear that you have a tough time with your sister, too. Is she older or younger? My sister is 3 years older and for some reason she carries a lot of resentment towards me. I honestly don't know why. I've searched every memory and can't figure it out. She doesn't have much of a relationship at all with my brother. She pretty much ignores him. It's really messed up.

I have an EAP at work, I will reach out to them. My husband is amazing, but I don't want him to burn out looking after me while I look after my mother.

Thank you again for your kind words.  I'm still feeling pretty low, but glad to know that there is a group of strong amazing people here to help guide me through this.

XO

Re: New to this - and it’s so complicated.

Posted by Cynthia Mac on Apr 24, 2019 9:15 am

Niffer8‍ , if there’s one thing I’ve learned (eSPECIALly here on Cancer Connection), it’s that when one person or a group of people - like family - let you down, it’s time to find people who will love and support you. Thankfully, I’ve also discovered that those people exist, and a lot of them hang out here!

I hope your brother comes through for you.

I’ve got to run now - I’ve got an appointment soon, but trust me, I’ll be back!

Re: New to this - and it’s so complicated.

Posted by Lacey_adminCCS on Apr 24, 2019 10:07 am

Niffer8‍ 

Dump your bucket anytime, we will do our best to listen and fill it back up with kind words to get you through!

Lacey