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My 83 year old mom was recently diagnosed with thyroid cancer. She also had nodules on her lungs and the biopsy came back that he has cancer in her lungs as well and it's not lung cancer. Now we begin the journey of working with an oncologist to figure this all out. I live 200 miles away. I have 2 brothers who live closer, but I feel as her daughter (and the oldest) I should be very involved in this process. She is still living on her own in the house she and my dad (now deceased) lived in for 50 years. She is VERY stubborn and refused to move. I have teens at home and a full time job. I'm just feeling overwhelmed. Thank you for allowing me to vent. I realize it's very early in the process and I just need to remain calm and we'll figure things out I guess. Would appreciate any support and guidance anyone has to offer. Thank you.

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GM, welcome back...and deep breaths!!

If mom is stubborn, the best way to get her back up is to jump in and start trying to "manage" her, so don't do that.

I would proceed with neutral responses to information via phone or email, or however she contacts you, i.e.,

"That's scary news".

"I guess there will be some choices for you to consider".

"Many folks say that when there is a serious diagnosis at hand, it can be a good idea to take someone with you to doctor appointments, to be a second set of ears. Let me know if you need that".

"Have you thought about adding some of us kids to your HIPAA authorization so we can talk to your doctors? That might be useful if you are going to pursue treatment like surgery".

Hoping for the best for you and your family.
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First and foremost, I am sorry about your mother's diagnosis. I hate cancer so much!

You mentioned something that concerns me a little:  "I have 2 brothers who live closer, but I feel as her daughter (and the oldest) I should be very involved in this process." This is a straight path to burnout.

It is so common for daughters to be expected to do the bulk of the work, and the ones to sacrifice themselves the most. I mean, when you're born, the doctor says "It's a girl!". Not "It's a girl and now you have someone to do all the caring when you're old!". :) Having ovaries shouldn't dictate your future.

Look around on this forum and you'll see countless posts from daughters who are at the breaking point, have their own families that they're neglecting, and have 10 brothers living on the same street as Mom who do nothing and aren't expected to because they are sons (I'm exaggerating, but I'm sure you get it). When people insist it doesn't all have to fall on the daughter, it just circles back to "But I'm the only daughter, I have to!".

Nor would being the oldest be a factor. It mattered when you were kids, but now that you're all adults, the oldest/youngest aspect isn't so important.

Of course no one would tell you to not care for your Mom! Nor am I saying your brothers are slackers; I don't know them. It's just that once daughter steps in and does the most, sons start thinking they don't have to do much since daughter is doing it all. Sort of like young kids who leave clothes on the floor because they figure Mom will just pick up after them later.

Just please don't burn yourself out when you don't live as close and the other siblings do. Let the brothers know how much you are able to do, or divide tasks between the three of you. Get boundaries set early on. You won't be of much help to Mom if you're stretched to the brink.
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gmcrook Aug 2021
Thank you. That is helpful to keep in mind as we begin this journey.
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I agree that you should be involved in the process. When the decisions are made about who and why someone assumes care for your mother that decision should be made as fairly as possible. Your brothers should not assume that because you are female that is should just be you. You should be ready for some very adult and difficult conversations regarding your mother's care. Your mother's wishes as to her care is the important thing, but should not be the "default" caregiver because you are a woman.
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I very much agree that you being the eldest means nothing. You being a female may or may not be an issue: I have 3 sons. Do I want them helping me put on a bra or wiping me in my old age? Or would I prefer a willing DIL? My personal choice is the DIL. I'm pretty sure my sons would not feel comfortable performing certain tasks for me, but your mom and bros will have their own opinions on it.

And I very much agree not to go riding into her town like the Cavalry and presuming her care. She needs to retain control of her life and decisions as much as possible.

With siblings, I strongly suggest you have a family meeting, like on Zoom or FaceTime, including your mom, and just allow her to tell you what she thinks she may or may not want to happen. Everyone should hear it from her own lips. Going forward, everyone needs to be on the same page with the same info at the same time. Someone can be the manager of this, if your mom is ok with it. No one wants to be the last to find out anything about their LO.

It will be very important now for her to have a Medical Representative. This is a form that should be requested at every one of her doctor's offices. She needs to assign a representative so that the doctor/team can discuss her private medical information without her being present. If she doesn't have a diagnosis of dementia, this is the only way this can happen. "Family" doesn't override the HIPAA rules. Medical PoA is for when she has cognitive impairment, then the MPoA and doc can discuss among themselves freely. A lawyer can draft up a Medical Rep document that each clinic can keep on file and doesn't expire (like a MR form from a clinic will).

Your mom will hopefully be willing to assign a durable PoA for medical and financial, and an Advance Health care Directive (especially now with this diagnosis). She needs to fill this out with guidance from her oncologist, not a lawyer, then she needs to make sure her MPoA and her doctors all have a current copy.

I wish you comfort and peace in your heart no matter how this journey goes.
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gmcrook Aug 2021
Thank you. Yes, she and my dad completed all these forms a few years ago. We have the healthcare proxy and POA all identified. I was also able to get her to sign a PHI release authorization so her doctors will talk to me. Thanks for your advice.
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Thanks Barb. That's precisely what my brother does to her and it's not helpful. She just digs in further! It's just hard when they're stubborn but they also need help! It's hard to have it both ways!
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GM, do you mean brother uses neutral language, or that he tries to manage everything?

Stubborn people like your mom are their own worst enemies and rarely get the best medical care. (Ask me how I know--my MIL was just like this).
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gmcrook Aug 2021
He's VERY bossy and aggressive out of frustration, of course. But my opinion is, it's her life. I will gently offer advice but I'm not going to boss her around. Though at some point, it does become our problem when she doesn't make wise decisions!
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It’s only natural to help those we love. I don’t know where you live, but depending upon where you live you may have options. For example, in Canada, you can go on Employment Insurance and take (I think) 6 months off work to look after a terminal loved one.

I think the coming days will make things clearer. You can’t really make plans until you have all the information. It’s also important to what your mom truly wants. Chemo, no chemo. There is a quality of life piece that must be considered. What does she want for her end of life? I personally would do my utmost to honor her wishes if at all possible. If she wants to stay in her home, refuse treatment, that should be her choice. Maybe the three of you (you and your brothers) can alternate care, and hire a personal support worker to supplement care.

Talk to your brothers about how you would feel and what you would want in your mother’s shoes. Would you want to be a burden on your family, as that is most likely how your mother sees it, even if it’s not the truth. It’s not as simple as “wanting the best for her”. It’s about what she wants.

Take care.
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The only person who assumes that as the daughter and oldest child the OP ought to be closely involved in mother's care is in fact the OP. As far as I can tell, nobody else has even thought that.

GMC - what are your mother's thoughts about this rather indigestible piece of news she's been given? Has she had a chance to get her head round it, do you think?
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